Q&A with CS, BB's Physician's Assistant

Upon reviewing the recording I made of the second consult with BB, he really wants to do induction, transplants AND consolidation therapy in Little Rock. And the more I think about it, the more justification there is for it. He knows what to look for, and all of these therapies are very interrelated.

I set up a call with CS to go over the protocol in minute detail, for two reasons. First, I want no surprises. I learned about the needle aspiration AFTER arrival at the clinic last week, and I didn't like that. A routine blood draw in Arkansas turns out to be a medieval blood-letting, and that was surprising and disconcerting. The injections of isotope and contrast for the PET and MRI weren't anticipated, and that was also disconcerting. So now, I want to know everything that is going to happen, so I anticipate everything and there isn't anything to jar me out of my sense of ownership of this process. Managing this process is how I keep my sanity.

Secondly, I had a very bad experience, as noted below, with the needle aspiration. I'm going to be very insistent that I am made comfortable during procedures that hurt. This will likely include more painkillers and more sedatives than they are used to using, but frankly after they did a procedure on me without any sedation, they lost the ability to EVER say "oh, you don't need X Y or Z, we're only doing such and such."

So I'll post most of the questions and answers here. They'll likely be more detailed than is useful for many of you, but in this case it is also a document of record for my own convenience.

PRE-INDUCTION

QUESTIONS:

What tests, if any, are performed before a port is installed, and if any involved blood draws or anything else, what is the rationale for not doing that once the port has been installed?

What kind of port is installed, and how is it installed? Where will it be located? What is the procedure for installation? Is this done under general anesthetic, as it is at City of Hope? If not, is there an option for that?

Once installed, is this port used for all blood draws, infusions, chemo, injection of isotope for PET scan, etc? What needle pricks, other than bone marrow for the gene array, require anything more than this port?

ANSWERS:

There will be an initial visit at the clinic, where they would normally do bloodwork (of the 30-tube variety) to establish baseline numbers. However, since my visit was pretty recent, they can probably put this off. They will install a catheter underneath my clavicle. This is done with local anesthetic only. They would resist doing this at the outpatient clinic, and would either do it at the interventional radiology clinic or the central line clinic. They don't normally give conscious sedation for this. Once installed, this port remains in place for major phases of the program (most likely through the end of induction). All blood draws, tests, infusions, chemo, isotope injections, etc. are done through this port.

MY THOUGHTS:

I will NOT be willingly going back to the interventional radiology clinic as that's where the jerk did the needle aspiration. I don't like the fact that they don't give conscious sedation for this -- they are striving to keep all of this outpatient without the need to deal with stuff like anesthesiologists at the main hospital, etc. City of Hope does it under general anesthesia, but then they do all of this stuff in-patient anyway. Since this sounds like something that is tolerated very well and it doesn't involve boring into my bones, perhaps this is a good test of the ativan and fentanyl lollipops. In any case, I'm relieved that they'll do this one installation and then I don't need to have a million other things stuck in my arms every other day.


INDUCTION

QUESTIONS:

What is the precise protocol? When are bone marrows done and how many are done? What other tests are typically done? Can they be done under conscious sedation, rather than just the lollipops? What side effects from the induction agents am I likely to experience (i.e. nausea, diarrhea, mouth sores, neuropathy, etc.), how likely are they to occur, when do they occur and when do they end? What agents are given to minimize these effects, how effective are they, when are they given, and in what manner (i.e. oral meds, IV through the port, something else)? At what point, if ever, are chemo agents reduced in dose? At what point will I be neutropenic, and for how long?

ANSWERS:

One the port is installed, a small test dose of Velcade is given (1mg/m²). 48 hours later, bone marrow is drawn (typically the patient is given the lollipops for this) and another gene array is done. In some cases, this can result in a re-allocation of patients from 'low risk" to "high risk" categories, and it also provides a glimpse into how the disease is going to respond to the Velcade. On day 3, a test dose of Melphalan is administered, and another gene array is done 48 hours later. THEN, there is an 11 day induction regimen, consisting of Velcade on days 1, 5, 8 and 11, continuous drips of the PACE chemo agents from days 5-8, and thalidomide and dexamethasone (not daily but something like four days on and two days off). After the last chemo dose, they start injecting me with a "growth factor" agent to boost my blood counts. There is a clinician who looks at blood and performs a bunch of equations on the counts to determine how much of this to give me and when and how many days will be required. This is done via injection in the subcutaneous fat of the belly and is one of the few needles that can't be done through the port.

As far as side effects, nausea is not uncommon but is generally controllable. Mouth sores are very, very rare. Very little neuropathy is seen until bridging therapy (between the two transplants). They stick to thalidomide during the bridging therapy because Revlimid causes platelets to fall, and if bridging goes on for more than a few weeks, it can cause neuropathy. They have been putting patients on B6, B12 and folate supplements and that seems to have reduced the instances of neuropathy. Diarrhea is unavoidable. There will also be neutropenia, and the precise onset and duration are patient specific but most occur 3-5 days into the cycle of chemo and it lasts for about a week, depending on how rapidly my body responds to the growth factor.

Some patients experience discomfort in the lower back from the growth injections [ed. note "discomfort" is doctor-speak for agonizing pain] and they prescribe standard painkillers such as Oxycontin (somebody kill me if I turn into Rush Limbaugh). If the platelet count is above 40, they will also prescribe Lovinox shots (again in the sub-cutaneous fat in the belly) to reduce potential for deep vein thrombosis (blood clotting). [ed note: if the platelet count is high, why not just put me on the damn Revlimid????]

During induction, there is typically a once-a-day visit to the infusion center. They will do a PET scan 7 days after the chemo treatment is over to determine how the disease is responding to the therapy, and as BB told me before this is a useful indicator of long-term prognosis.

MY THOUGHTS:

All in all, sounds pretty good. I'm not looking forward to the shots in the stomach but they don't sound as bad as I feared (I was thinking rabies vaccine based on what I'd heard from a couple of other folks). I'll see how the lollipops work for the catheter placement and if they work fine, then maybe I'll try them out on the bone marrows as the Versed at this joint isn't exactly foolproof. Otherwise I will insist on Versed or something stronger. As for the side effects, I'm prepared for all of them. Neuropathy is the one that worries me the most so I'll just keep an eye on that. It does sound like the biggest risk there is during bridging, because there's a lot of thalidomide administered and if that runs three months between transplants, I've got a lot to deal with. However, BB pushes as aggressively as possible and I suspect I will be lucky to have one month between transplants, much less three. If they can control the nausea, I can deal with the diarrhea. Glad to hear there aren't any mouth sores. I'm resolved to lose the hair -- that will grow back. Look out cancer -- whole lotta poison coming your way!!!

POST-INDUCTION

QUESTIONS:

Is the port removed, or kept in place? If not kept in place, how is it removed? If I am on the lite arm and fail to achieve complete remission (CR) after the first cycle of induction, can I receive another cycle, either by shifting protocols or going off protocol? If I am on the standard arm but achieve CR after only one cycle of induction, can I be moved to the lite arm? If I do two cycles of induction, and each cycle is three weeks, how long is there between each cycle? Would I be well enough to see visitors, see children, travel on a plane at this point, etc? At what point do injections for stem cell mobilization (this is the term for coaxing the stem cells out of the marrow and into the bloodstream) begin? How are these injections given (through the port versus other means)? What other injections, procedures, tests, etc. are run and what do they entail? What invasive procedures, if any, are performed at this point?

ANSWERS:

The port is kept in place but the catheter is switched out to a larger gauge [ed. note sounds horrible]. BB will get the patient the most effective therapy regardless of which protocol. CR is the goal (although only achieved about 50% of the time). There is very little time between induction cycles because BB is very aggressive. Some protocols would be three weeks on, one week off. BB will be three weeks on, then on again as soon as your blood counts can handle it. So it might be ten days between cycles or it might be three. Traveling is not an option for that reason; it might be possible to see the kids if they aren't sick. Injections form stem cell mobilization will begin as soon as the blood counts return, and this is of course monitored daily. There will be bone marrows done after each cycle of induction. These cannot be performed while I am on growth factors as the results will be skewed.

MY THOUGHTS:

So many bone marrow biopsies, so few hips. I'm getting very tired of them and I've only had two. Let's hope we find a way to keep me unaware of what's going on. I'm not going to be shy about it -- I have to be my own advocate and I don't care if they think I'm a wimp because I want to be heavily sedated before they shove a stainless steel ball point pen through my hip. The nurse who is helping us arrange a place to stay in Little Rock called, by the way, and said the installation of the port is a "horrible thing" so screw CS, I'm gonna be out of it before that happens. They can do it in the outpatient surgery center, frankly. This nurse also said she hasn't seen any mouth sores in a long time, which is great news.

As for the rest of it, it sounds pretty good. I'm all for getting through this quickly and keeping the cancer on its heels, unable to regroup. Maybe I'm insane but if they can control the nausea and all I have to worry about is bad diarrhea and exhaustion, I'm gonna be fine.

So long as they sedate me before any of these heinous procedures. When the port is removed (after each transplant / recovery) they evidently just have you hold your breath and they yank on it. This, to me, sounds insane. So insane that I thought he was joking. He said people say it feels weird. I BET it feels weird. The last time somebody asked me to do that it was when I had nose surgery and a guy ripped five cubic feet of packing material through one of my nostrils. That was hell. The last thing these Arkansas folks said would feel "weird" was the digging around in my hip for the needle aspiration. That sure felt weird all right! Sedation, sedation, sedation!!

TRANSPLANTS AND THE REST

This basically all got distilled down to a few observations:

* They use the wider gauge catheter for the stem cell collection and infusion, so that means I don't need to have needles in each arm for six hours a day. It usually take two days, and they will collect an average of 20-25 million stem cells per m². This is enough for seven transplants or so.

* Side effects are more pronounced than the initial regimen but are generally the same. Mouth sores are not that common, nausea is often controllable, diarrhea is not, fatigue is not.

* Generally one visit to the infusion center each day, but the days are long. Bloodwork is done in the morning, then we wait several hours while they check the results and determine how to adjust the infusion regimen that day.

* The recovery period between transplants is typically four weeks to three months, and again it is usually as short as possible and guided by BB's sense of where the disease currently is. Given my age, I will probably respond quickly and BB will want to hammer home the second transplant ASAP. I'm betting it will be four weeks...which will allow me time to come back to Los Angeles.

* Between transplants, I will be on bridging therapy, consisting of thalidomide and dexamethasone. This will be where the neuropathy has a chance to strike, particularly if it's a long bridge, as the thalidomide will be given daily. I'll have to keep an eye on it, and also consider that B6, B12, folate cocktail.

* When it's time for the second transplant, I'll go out, have another bone marrow done, and have the port put back in. I told them that I want to be knocked out for this. Frankly, why not put me under, do the bone marrow and install the line at the same time? He didn't seem to want to sign up for that...so I shall have to see if I can be more persuasive in the future.

* After the second transplant, again it's typically 3 weeks to 3 months before the second transplant -- another opportunity to come back. And then I'll need to return for consolidation therapy, which is precisely like induction therapy except that the doses are reduced by 25%. I will have the same side effects but they won't be quite as severe. Depending on whether or not I need one or two cycles, I'll be in Arkansas three weeks to seven weeks.

And then I will come home, cancer free, to begin maintenance therapy. That therapy last 3 years, but can be done in Los Angeles. I will make quarterly visits to Arkansas during this time. And each time, another bone marrow is done. My aching hip...



The Bottom Line:

I'm ready for it all. Provided they cooperate and properly anesthetize me before doing any painful procedures (the bone marrow draws, installation of the IV catheters, etc.) and provided they give me enough medicine to keep the nausea and mouth sores away...I'm ready.

Message to my myeloma cells: I'm gonna kill every last one of you sonsobitches and I'll smile while I'm doing it.

City of Hope and a first decision made...

We went out to City of Hope and toured the place, including perhaps most importantly the hospital for stem cell transplants. It's a beautiful campus, and the hospital opened only three years ago. It's very bright, a beautiful building with a lot of common places that have unobstructed views of the mountains, etc. It's also very technologically advanced and the floor dedicated to neutropenic patients was very impressive. We went to tour it and passed through two airlocks to get into the section where air is hyperfiltered and completely exchanged every 15 minutes, etc. If I stay there, I won't be getting sick, I don't think.

Unfortunately the rooms themselves are dismally small. So much for my hopes of writing music, playing video games, working, etc. They look like they are about 150 square feet plus a small bathroom. All of a sudden, a condo in Little Rock looks pretty good...

Which brings us to Big Decision number one. I'm going to do induction in Arkansas. It makes too much sense not to do so. As I may have written, in the words of someone I've encountered who is going through BB's program right now...

It is not just about mirroring the treatment regime. There are many more subtle aspects to the team's approach here that no doubt have a very positive effect on their outcomes. Their resources are unmatchable. They can generate lab results faster than anything I've ever seen. They track everything on an almost daily basis, looking for potential red flags or signs of trouble that can be headed off at the earliest. For example, they routinely do blood cultures from my blood draws, just in case I get sick they will already have something growing in the lab and will know exactly what to treat it with. Typically cultures are only drawn when you are sick, and then it can take up to 4 or 5 days to identify the particular virus or bacteria. Everyone is put on Tamiflu right away, to prevent or lessen any flu events. I've had the flu for the past 3 years, twice developing into pneumonia. No preventative measures were ever taken in my treatment in Denver. Before a new patient is seated in the infusion room the chair is wiped down with alcohol. I'm sure there are many more differences that are unknown to me. But I'm confident the results achieved here are not due solely to the combination of chemo drugs.

So I'm going to do induction there, unless my questioning of BB's resident yields some unwelcome surprises. We spoke with SF about this and he agreed it was smart. He also suggested doing the stem cell collection there, since during collection there are additional elements to the protocol. He did think we could do transplants at City of Hope, and I do think he's an excellent doctor and I believe the quality of care would be excellent -- plus it would be nice not to be away from the kids for such a long period of time. On the other hand, the hospital rooms are like little dungeon cells.

We'll be looking into condos in Little Rock, and then looking into whether or not insurance will be sensible. A condo for a month is less than a hospital room for two days, and if I did the induction at City of Hope, I'd be hospitalized for a week per induction cycle, so if they are sensible, they'll spring for the condo. We'll have to see. Based on previous behavior, I'm not expecting reason to prevail.

Meanwhile, I am compiling my list of 101 questions and will hit Dr. CS (BB's resident) up with them soon.

A few important facts and figures from BB's data

Based on a number of conversations and excellent questions from friends, I wanted to share a little bit of data that should give you some idea of why I am prepared, if need be, to move to Arkansas for treatment, and why I'm going to subject myself to treatment that many people in the medical community regard to be brutal or overkill.

BB presented to the American Society of Clinical Oncologists in 2008 with, as I think I mentioned elsewhere, a presentation entitled "The Myth of Incurability." That presentation can be downloaded in PDF form here for those interested in seeing all of it. It is data rich but if you are used to statistics and interpreting graphs, you'll probably get a good amount of it. I got about half of it upon first reading but now I'm so familiar with the acronyms that I get the point of the whole thing.

Anyhow there are a several charts I want to show you (shades of Ross Perot in 1992, was it?).

First, some background. The concept of "Total Therapy" was first introduced in the treatment of acute lymphoblastic leukemia in children. It refers to the notion of using all known effective treatment at once (colloquially I've referred to this as the "kitchen sink" approach) versus starting with one set of drugs, then moving to a stronger set of drugs once the disease overcomes the first, etc.

The first chart shows the results of this therapy over 45 years, in six major "groups" of study, each reflected in a line on the graph.



By the way, you can click on these charts to expand them -- they tend to be pretty small.

On these charts, the Y-axis is the % of survival, and the X-axis is time. There are several things one can take from this slide, but for our purposes the most important thing to note is that after 5-6 years from diagnosis, if you're gonna die, you're gonna die (presumably with your boots on...Iron Maiden song reference there for my 3 friends who listen to that music).

The lyrics of British heavy metal bands aside, you'll note that the curves "plateau" after about 5-6 years. Meaning if you've made it that far, chances are you have beaten the disease the the likelihood of recurrence is pretty low. Overall Survival is of course the gold standard, but at this point I am shooting for the higher bar of Event-free Survival, which means there is no trace of the disease.

NOW...BB saw this data from St. Jude's Children's Research Hospital and began applying the same theory about 20 years ago for MM. Since that time he has had three major studies (versus the six shown on these pages). They are called Total Therapy 1, Total Therapy 2, and (obviously) Total Therapy 3.

Bear in mind the Leukemia & Lymphoma Association still says that median survival is 5 years from diagnosis (meaning 50% of people are dead from the disease by this point). But get a load of BB's results in the charts below:



You'll probably want to click on this one. It's good progress, right? 80% of people are still kicking 4 years after treatment begins on Total Therapy 3, and the previous therapies show that after 10 years, the same type of plateau that we see in children's leukemia emerges. If you can stay alive for 10 years, there's a good chance you can actually beat the thing.

Still, the data is great if I'm in the, say, 60% of people that are gonna make it 10 years, and not so great if I'm in the other 40%. But here's where things get interesting.



You'll DEFINITELY want to click on this one.

The charts on the left show event-free survival and overall survival for "low risk" patients in Total Therapy 3 (the group which I was so relieved to be part of), while the graphs on the right show the same statistics for "high risk" patients. Among low-risk patients, about 80% have event free survival four years from enrollment in the program, and about 82% are still alive.

The really interesting thing, though, is that these data include deaths from EVERYTHING. In the first two years, there's about a 10% mortality rate. This includes about 5% treatment-related mortality (remember, a lot of folks with this disease are old and this is a brutal treatment regimen). I'm very, very unlikely to fall prey to that. So you can shift all the survival data up 5% for me.

Then, consider mortality from other causes (if somebody is diagnosed at 72, and dies of natural causes at 76, they are counted as dead). If somebody drinks too much 198 proof moonshine from pappy's still just outside Little Rock and strokes out, he's counted as dead. If somebody forgets to look before crossing the road and gets flattened by the Little Rock Trolley (which I observed circling downtown for a week without a single passenger on it), he's counted as dead.

The sum total of this is...I think there's an 80% chance this therapy will cure me.

I just got off the phone with the Chief Medical Officer of the Multiple Myeloma Research Foundation, who hasn't drunk the BB kool-aid but does believe my logic is sound. Like me, she thinks I could consider doing the induction in Arkansas and the transplants in Los Angeles, and I'll discuss that with Dr. SF tomorrow.

Meanwhile, I'm compiling my list of questions for Dr. CS (BB's resident) which I'll hit him up with later this week. Meanwhile, BB's office called telling me I have an appointment with him this Friday -- that ain't gonna work. I'll see if they can do something by phone. Hopefully it's not because of a discrepancy in labs or anything like that...

The second BB consult...

I had to be relatively (for me, anyhow) brief last night because I was exhausted, but I wanted at least to post that I was low-risk for Total Therapy.

So now, the consult with BB. He came in in tight jeans, cowboy boots, and a black nylon motorcycle jacket, lighter weight than the leather one because it had finally warmed up a little down there.

He calls me Herr van Dyk and his Dutch accent on van Dyk is impeccable. When I was little, my father used to tell me stories that the Dutch resistance during World War II had a password (schaeffeningen -- sp?) which native Dutchmen would pronounce without a problem. Germans would miss a nuance in pronunciation that would give them away. I'm sure BB would have passed this test. He told me the other day that he grew up in West Germany just 30 miles from Holland and he would visit there several months out of the year, so that explains his facility with the language. The only Dutch I know definitively is a few choice words I picked up from my dad when I was very young and let's just say they belong somewhere on the list of things I could have screamed at my tormentors the other day. Not suitable for polite conversation.

Anyhow, BB came in, and took a few seconds to confirm that we were low-risk, which by this point was fine, but confirm he did. I presented him with the book, and he was very gracious. I said it was something for his coffee table, and he said "I don't have a coffee table...I only have a bar!" and here he bent back his head and cackled once and then beamed at Jill with a wink. I am utterly convinced that Anthony Hopkins' character in Dracula is being channeled. Hopkins, it is rumored, told the director Francis Coppola that he would only be in the movie if Van Helsing could have a large dueling scar, walk with a prominent limp, and be played equal parts genius and eccentric.

We found out a lot of interesting things about my chromosome analysis / gene array. First, my "risk score" assessed from the workup of 70-genes was 0.1389. The cut-off for low vs. high risk is 0.66. I don't know if this scale is linear, logarithmic, an "S-curve" or what...but I do know that 0.1389 is closer to 0 than it is to 0.66 so I feel like I'm not just somewhat low-risk, I am very low-risk. So far, so good.

Second, BB asked for a cellular analysis of 40 cells, rather than the usual 20. This was because the workup at Cedar-Sinai indicated a second clone, which was troubling, and he wanted to double check. In his 40 cell workup, which was given special attention by the doctors who review such things, I had NO SECOND CLONE and NO CHROMOSOME 1 ABNORMALITY. The rest of it was largely the same. I'm not sure why where would be a discrepancy and that alone is somewhat troubling, but between the two I'm going to trust BB's clinic because (1) they do more MM workups than anyplace in the world, (2) they reviewed twice as many cells, and (3) they paid special attention to it both because they were looking to confirm both of the previously-noted abnormalities and because BB had prioritized my review.

So now, I asked some questions. I didn't want to trouble him with detailed questions since my intention was to do this in Los Angeles with follow-ups only. But I did ask the ones that I wanted to bottom out. Some of the memorable ones:

ME: "Why do you use thalidomide in induction, given Revlimid's higher efficacy and fewer side-effects? Is it because it's a different drug and you need the kitchen sink?"
BB: "No, it's because Revlimid inhibits stem cell collection. Once we've harvested stem cells, the protocol changes to Revlimid."

ME: "How flexible is the protocol? Can you alter dosage to counteract side-effects or does efficacy depend on sticking to it hard and fast?"
BB: "We have the ability to change doses constantly. We are always aware of potential side-effects and we know precisely what and when to look for it. Additionally, we get new gene analyses on a daily basis and monitor how it responds to treatment."

ME: "Have you seen late-term acute leukemia among your survivors from the Cytoxin and Etoposide?"
BB: "No. We have studied this intensely. It is extremely rare even in much larger doses, and we worked with Dr. So-and-So at Sloan Kettering for some time, but there was no evidence of any of this and we therefore ended the project early because there was no point to it."

ME: "At 550 mg/m2 of cumulative dosage, Doxyrubicin has been associated with cardiac problems. Have you had issues with this, and why use Doxyrubicin instead of Doxil?"
BB: "We avoid any peaking in dosage because our chemo doses are administered through continuous drip over 24 hours. The two arms of Total Therapy represent cumulative dosages of 160 mg and 80 mg, depending on which arm of the study you are in."

ME: "Have you noticed any hearing loss or kidney failure from Cisplatin?"
BB: "No. We use very small doses and this does not occur."

ME: "I believe I read in your writing that mucositis is worse after exposure to etoposide?"
BB: "That isn't an issue. We've looked at it and there's no association."
[ed. note: Is this a rare mistake on the part of your humble author? Actually, I doubt it, but he's allowed to change his mind.]

ME: "Will you be incorporating Carfilzomib, Pomalidomide, HDAC inhibitors, etc. in future therapy?"
BB: "Those may be effective, but frankly Total Therapy is already a cure for low-risk patients. I don't want to change it."

ME: "What is treatment related mortality for someone in my age?"
BB: "Overall treatment related mortality, including people otherwise unhealthy and 75 or even older, is about 5%. The reality is, for someone your age and in your overall health, effectively zero."

ME: "Will you be using Mobozil to mobilize the stem cells?"
BB: "No. I get what we need from the standard drugs. I'm looking at Mobozil because there is some evidence it may round up the myeloma cells and move them to the blood, where they can more easily be attacked and killed. So I am looking at it, but not in the same way."

And perhaps most importantly: "What is your typical program for relapse after treatment?" His answer: "There is no typical program, because relapse is extremely unlikely."

He answered these questions very soberly, without any pretension or false confidence, I thought.

So far, so great. I had one last question for him.

"How much of this can be done here, versus done in Los Angeles with follow-ups in Arkansas, and could I do most of this at City of Hope with SF?"

Here, the upshot was, I would have to do most of this in Arkansas. His argument is compelling:

* This is all we do here. SF is a long-time friend and he is brilliant at stem cell transplants. But his expertise is in lymphoma and leukemia.

* If you do this in Arkansas, we check things daily and know what to look for.

* I am a control freak and can only promise these results if I have the ability to control their outcome.

He thought I would have to do induction and the transplants in Arkansas, and that I could do maintenance therapy and potentially consolidation therapy at City of Hope. This would mean, depending on whether or not I was put on the "regular" or "lite versions", a lot of time in Arkansas:

* On the standard protocol, three weeks in AK, one week home, six weeks in AK, six to twelve weeks home, three weeks in AK, followed by consolidation at City of Hope and recovery in Los Angeles.

* On the "lite" protocol, six weeks in AK, six to twelve weeks home, three weeks in AK, followed by consolidation at City of Hope and recovery in Los Angeles.

Frankly, I think he is one week short on the six week stretches in both because the process of stem cell harvesting could take at least a week.

Also, I would not be able to choose "lite" versus standard, as they are randomized. He did say that he would not randomize if he thought there was any difference in effectiveness between the two.

So now, I have a difficult choice. Obviously, I want to do what is best for my health. But I also love Dr. SF, and would feel better closer to home and as much as I like BB, Dr. SF does strike me as more compassionate. I'll have to think about all of this.

BB dictated his findings with us in the room, as is his style. He mentioned a couple of things, including the fact that they would do another gene array after four days of treatment with Velcade and a mini dose of Melphalan to see how the cells are responding to that treatment, and including the fact that after a full week of induction, they would perform another PET scan and that if all the tumors are gone, this has not yet been published but they have found that this is a powerful predictor of superior complete remission / operational cure.

So far, I have two options which I'm going to ruminate on:

1. Do the lion's share of it in Arkansas, per BB's instruction
2. Do all of it at City of Hope with minimal involvement from BB

Some downsides to doing it at the City of Hope: I'd be on the lite protocol since that is what they are publishing (although I know by now the differences -- two cycles of induction and consolidation rather than one, and 2 days of 200 mg / m2 of melphalan versus 4 days of 70 mg / m2).

Some downsides to doing it in Arkansas: I will not have a choice of lite versus standard -- it will be randomized and I will have to commit to the random trial. Also there are financial, logistical and psychological (separation from the kids) aspects of Arkansas that enter into the equation.

If I had my druthers, I would do induction in Arkansas to take advantage of BB's superior experience and testing expertise, and I would do transplants in LA, since SF is as good with a stem cell transplant as anybody in the country, and by the time of the transplant, the myeloma is gone and we are managing the transplant process, not the tumor elimination. I will see what SF thinks of this approach in a couple of days. I see him on Feb 3rd.

I did explain the needle aspiration was very unpleasant, and he said I didn't need to do another one. This did bother me a little because it meant I didn't need to do the one in the first place -- it's really for the sake of research. Although they will run a similar gene array on it to determine if the myeloma cells, once they have reached critical mass in a tumor, mutate differently. A friend (can't remember which one) said that I need to be mindful that doctors want to cure the disease more than any individual patient. And that does make sense, which is why no matter how much I like these doctors, I will remain an active advocate for my health.

Interestingly, we asked him when I needed treatment. And I said "yesterday, right?" And BB said, contrary to what his panicky nurse had written three weeks ago, "no, it's up to you, but I would start fairly soon."

On the way out of the office, we sought out Typhoid Bonnie and gave her a big hug, telling her we were low risk. She was pleased, and told me that the people who did the needle aspiration had the gall to send over medical notes saying that I "tolerated the procedure well." She said she was demanding they amend that because I had a horrible experience. She said that they noted I had more versed given that day than when I had the gene array and it should have been enough to put down a horse. Well...something is wrong with that. One of Jill's family members noted that Versed is one of the most commonly stolen drugs in a pharmacy so who knows if I was even given a proper dose of Versed. All I know it is was horrible and now I will think twice about Versed in the future -- I'll need to find another way to give me comfort that I'll be out like a light.

She then brought up Dr. CAH "who I just loooove" and I cut her off and told her what happened. She was horrified and near tears. She asked if I'd told BB, because he would be terribly disturbed by it. I said I had not yet, and I'd be weighing what to do but my inclination would be to report him to the AMA.

My concern, of course, is that if I am doing some of my treatment in Arkansas this creep could affect my therapy. So no matter what I do, I'm unlikely to do it until after I'm finished with treatment.

The movie Juno is on the TV: "Doctors are sadists that like to play God and watch lesser people scream." Maybe that explains what happened on Thursday. But on Friday afternoon, everything was good.

I'm going to forget that I have cancer until Tuesday afternoon at City of Hope. So my next update will probably be after that session, and the next big question will be about where to have this done. I have two big questions for BB: (1) can I do the transplants in LA, and (2) if I am on the lite branch and am not in complete remission (let's say I have what they call Very Good Partial Response) after the first induction cycle, can I insist on another cycle of induction? Then I will have many questions about the minutia of various procedures, but I will compile those and ask them of Dr. Caleb Sumthin-or-other.

Okay...so that's the sum total of the Arkansas adventure. Take care, all, and watch for an update sometime next week.

Day 5...a major hurdle is cleared

Okay. So after the utter horror of yesterday, I had a splendid dinner at a restaurant called Ashley's. It was about half the price of a similarly-good restaurant in Los Angeles so we availed ourselves of a little southern hospitality. The night was not pleasant though...after a week of dealing with everything, including being told we had the high risk chromosome 1, then learning it wasn't that meaningful, then learning that the second clone that I had was very troublesome and could be leukemia, 100 tests and then culminating in the deep tumor marrow biopsy without sedation or any way to anesthesize the bone...we broke down. It's to be expected...and frankly were we not so strong we would not have lasted as long as we did before the stress overwhelmed us.

Anyhow, we got up and prepared for the last of the tests: a pulmonary test, an EKG and an echocardiogram (an ultrasound of the heart) all intended to make sure I was healthy enough for the Total Therapy protocol that BB pushes. I passed all these. It was remarkable to take a test that didn't indicate I was sick. It felt nice to be normal for a change.

All the while, we waited for two things. First, our meeting with BB at 3PM, to discuss whether I was high-risk or low-risk (more on this in a moment). Second, I know BB is a motorcycle enthusiast so I had ordered him a very nice hardbound coffee table book on the history of Ducati, which is the Italian high-end bike that he currently rides. This should have been delivered to my hotel on Wednesday AM but because of ice-storms in the area delivery was delayed.

The meeting with BB was delayed because he was running behind. His office was kind enough to call and say he was running two hours behind, but usually gets caught up in the afternoon, so we should show up at 4PM rather than 3PM. I pressed on this, and she then admitted 4:15 was probably a better time.

We grabbed a bite and bided our time. All the while the pressure was mounting. If I was low-risk, I would be a good candidate for BB's therapy and stood an excellent chance of prolonged remission and a decent chance of being cured completely. If I was high-risk, my outlook according to BB is "dismal" (he didn't say this to me, but it's how he describes "high risk" patients in his presentations on myeloma). And all I knew is that while I wasn't automatically high risk because of chromosome 1 problems (contrary to what Typhoid Bonnie, his assistant, had said a couple of weeks ago), it was still troubling. As was the second clone issue that could mean I'd be battling myeloblastic displasia -- a precursor to leukemia.

UPS was late with the delivery, but at 4PM I picked up the book I'd ordered for BB. We drove to the hospital and I inscribed it: "Dear Dr. B -- no pressure at all, but I fully expect you to cure me completely. Warm regards, Nick van Dyk." My heart was racing.

It just got worse as we waited. They called us back. According to the vitals, my heart-rate was 133 bpm (it was 77 bpm during my EKG earlier in the day) and my blood pressure was 149 over 95. Jill and I were beside ourselves with stress. When the nurse had called earlier to tell us BB was running late, I asked her if she could tell me if I was low-risk and she said she wasn't privy to that information.

We waited. I tried to console Jill by saying that high-risk just meant that this one particular protocol wasn't the right one for me. SJ, meanwhile, had refused my request for a phone consult, but we kept our appointment on 2/23. If I was low-risk, I wouldn't need to speak with SJ, and if I was high-risk, I would.

We discussed Dr. PZ, our primary care physician who was good enough to find my MM so early (so many people this week said he was such a good doctor to have found it). When Jill and I got married, we had to get HIV tests before we could get our marriage license. When Jill was in his office, PZ opened the door and before the door was even all the way open he said "it's negative." That's one of the things we love about him.

We wondered if BB would be the same way. The tension was almost unbearable.

Then, his resident, Dr. CS (for Caleb Sumthin-or-other) came in and said "are you two okay?" And I said "we're waiting to find out if we are low risk." And he said "well you are!!!!"

I can't tell you the relief we felt. Jill started sobbing and almost fell to the floor. I held her and let the realization that the odds are in my favor that I'll be in sustained remission wash over us.

It was a lovely moment.

But still, no superpowers.

More to come tomorrow...now, I must sleep. I do want, though, to give a special "shout out" to my friends and family, especially those that have prayed or asked others to pray for me. I don't doubt that it has an effect. I also want to thank my friends who are atheists or agnostic, that are thinking positive thoughts -- I don't doubt that that, too has an effect. Lastly, I'd like to thank those people that have posted comments and emailed, who I've never met but who found this blog and cared enough to reach out. Each of you is very special to me, and your words of encouragement and support also make a difference.

I have a great team. And that beats superpowers any day of the week.

Be well. As I said, more to come tomorrow.

I'm very sorry about the last post...

Because I was so angry...it was a sloppy post.

I left out reason #2A that I was very proud of and forgot to include it in the list.

Day 4...hilarity and inhumanity...

I originally titled this something far more dark, because I end this day in a mood that questions any effort I have to fight this sh*t.

But there was too much funny stuff going on not to have some levity.

I checked in at 7:45 this morning for the second half of my MRI, which I learned would be long, and also involve (whooo-f'in-eee) ANOTHER IV. Every vein is looking like a flute at this point...I'm running out of places to stick.

Also, they made me sign a form indicating that I knew insurance was at the moment rejecting the procedure, so I'd be out of pocket $25K if they kept that attitude. What could I do? Here's a GREAT idea. I can call the alarmist nurse!!! What a moron I was. I called her and she started going off about how essential this was and how I could have brain tumors, blah blah blah. Anyhow, I went to sign the form.

And this is when I started laughing.

I am going to give away BB and my location for all but the least curious among you, but I might as well say, now, that I am in Arkansas. As I remarked to my original oncologist: "Arkansas? I thought they were still working on rickets, much less incurable cancer!" But Sam Walton of WalMart fame died of this disease, and donated $200 mil to the University here to build a myeloma clinic. And they hired BB away from MD Anderson in Houston, which is world-renowned in Cancer care. And he is the guy with this protocol that can deliver a cure...and so here I am.

So I've joked with friends and relatives many times about the medical community here. The three top 10 jokes I have shared privately but have been afraid to post for fear of giving BB away are:

1. The rickets gag
2. "I feel like I am going to be on a combination episode of Hee Haw and Discovery Health Network"
...and, finally, based on what I observed upon arrival...
3. "The capitol building's flag is at half-mast...did Goober from the Gomer Pyle Show die?"

Okay. I have laughed and joked about these things, and about the intake nurse wearing a barrel, and about instead of people signing in they just "make their mark." Hilarious, right?

Okay. I sh*t you not, here is the form I had to sign at the MRI this morning.



Do you believe this? Do you see where underneath the line it says "patient's signature...OR MARK?????"

I was going to put a big ol' "X" there and see what happened, but sanity prevailed and I signed my name in the Yankee tradition (all 26 letters of the alphabet come into play).

Okay. So I went through 90 minutes of MRI madness, which included YET ANOTHER injection, this time of some sort of magnetic crap.

And here, I must issue an aside. I have been exposed to more radiation, magnetism, etc. than anybody should have to. And I have yet to develop any superpowers. This, I feel, is bullsh*t. I should have the combined powers of Spiderman and Magneto at the LEAST at this point. The world should bow to my very whim. Add to this the many, many chemo agents that should turn me into a powerful mutant and the multiple PET and CT scans that expose me to cell-transforming radiation, and I should literally be able to control weather, turn iron into gold with a glance, and in short control the destiny of millions.

Instead, I have cancer and I'm stuck in Arkansas. Again, I say..."I cry bullsh*t!!!!!!"

Okay. I leave the MRI, we sneak a tiny little snack and have a sip of water because that is all that is allowed before our painful bone aspiration that hasn't been scheduled yet. I went to the library and logged on and posted the last blog entry, and then we got called to go to the next test.

Now they had put an IV in me for the contrast in the MRI, and I had the presence of mind to ask them to keep it in and seal it off so that when I went for whatever was next, in the odd chance they would actually agree to give me versed instead of the crummy non-sleep medicine, I'd already have a line into my arm. We went to the new hospital wing where they do the CT-guided aspirations and waited.

Now the notion behind this test is they are going to use another PET/CT scanner to determine the exact location of a lesion, and then stick a needle into me and draw cells from that. Mind you, the woman in BB's office told me SPECIFICALLY they do not pierce bone in this test, and I didn't need to worry, blah blah blah.

Nonetheless, they didn't want to give me versed for this, for whatever reason. But I then learn that they are going to take the sample from my right hip (the only part of my body not in pain at this point) and the lesion is deep, so they want to give me "conscious sedation" (i.e. versed). Hooray! I kept the IV in place for a good reason! But they also said that they thought the doctor might find an easier to access lesion and I wouldn't need it. Hmm.

The very sweet nurse took me back and asked if I wanted conscious sedation and I say "hell yes, I do!"
I am lying on a gurney, and the doctor (who is soon to have his accreditation taken from him when I'm through with this motherf*cker) comes in. At first, he's very pleasant. He's probably my age, has a Dutch last name, we make small talk for a bit. Then he starts talking about how painful the procedure is and everything I will feel. I say "well, I'm gonna be on versed I won't feel a thing, right?" And he said "oh, you'll feel it...it's unavoidable and it's painful, but you won't remember it." I thought back quickly at this point to the three previous times I've had versed:

1. My two impacted wisdom teeth being removed. Consisted of IV versed, followed by passing out, followed by waking up in recovery, followed by going home. No pain, no recollection of anything.

2. My first bone marrow test two months ago. Consisted of IV versed, followed by passing out, followed by waking up in a wheelchair, followed by going home. No pain, no recollection of anything.

3. My bone marrow test two days ago. Consisted of IV versed, followed by passing out, followed by waking up on a gurney in the recovery room, followed by going home. No pain, no recollection of anything.

Sounds great.

Now...then this piece of sh*t says the following. And believe you me, I am reporting his scumbucket ass to the AMA tomorrow. I'll call him CAH (for creepy antelope hole...the erudite among you can translate in real time).

CAH: "So...you work for Disney, right?"
N: "Yes, I do."
CAH: "Tell me, did you have anything to do with that movie about the homosexual priests?"
N: "No, that was before my time." [this referred to Miramax's movie "Priest" released around 2002]
CAH: "Well that movie was horrible. AND NOW THE PROCEDURE WON'T HURT AS MUCH, SINCE YOU TOLD ME THAT" [I swear to God this is what he said, and he said it without a trace of irony]
CAH: "I thought about mentioning this all night...and as a Christian, it is my duty to tell you so."
N: "Oh yes, I think we fired the Miramax people over it" [internal response: as a Christian myself, you horrify me]
CAH: "Disney is about family."
N: "Well, the movie was released under the Miramax name, and it led to us firing them."
CAH: "It doesn't matter. Disney should have had nothing to do with it."
N: "I know...we respect what the brand stands for."
CAH: "Good thing."
N: "On our cruise ships, for example, we have no gambling."
CAH: [looks shot in the chest when I say the word 'gambling'] "Good thing. It's immoral."
N: "Even though it makes money, we won't do it. And we won't own a casino."
CAH: "Good. Gambling is immoral. It's terrible."
N: "We do let ESPN televise the world series of poker, but that's a little different."
CAH: "Maybe. I let my son watch that once in a while. But I have to tell you, as a Christian I have to make a stand. With that Obama fella [I expected him to drop the N word here] in office, we may have to have an abortion clinic here but I promise you there won't be nobody working in there."

I was so horrified by this point I was beyond the ability to form words.

Then they wheeled me into the room. The idea was they would put me in a PET scanner again, check for the hot spot, mark my right hip (the only part of me which didn't hurt at that point) with a pen, scan again, and then put some versed and painkiller into my IV. After that, I would be unconscious and not feel anything, but they would stick a needle through my flesh and muscle, break deep through the bone (3 cm through solid bone) and then take a core sample. That lying bitch in BB's office who said this didn't involve going through bone will pay, I promise you.

I'm figuring "whatever, I'll be out of it, doesn't matter."

The nurse comes in, checks the IV, shaves my backside and preps it, and then the guy running the PET scanner comes in, wheels me in, they scan it, they mark my butt. The nurse then says the IV is running. I say "are you sure?" She says "yes." I say "I don't feel anything." She says "you will in a moment."

Mind you, three days ago they said this same thing and I was out like a light.

So now, I'm not out like a light, and they say "okay, now we're going to insert the needle."

I say "don't do that...I am still conscious...I am feeling everything."

The nurse says "oh it's okay, you are able to converse with us but you won't remember a thing."

I say "no, that's wrong, I am not babbling like a drunk...I am lucid, I am fully cognizant of what is going on, I am not anesthetized."

What happened over the next 30 minutes is hard to describe, other than to say it was the most painful, horrible experience of my life. These motherf*ckers proceeded as though I was numb WHEN I WAS NOT.

When they first punctured my hip bone I screamed "JESUS CHRIST!" at the top of my lungs, and kicked out at the guy with the needle.

It occurred to me that I could have said a few worse things to the born again sh*thead. So in the spirit of David Letterman, here they are:

TOP 10 THINGS I COULD SHOUT DURING A PROCEDURE THAT WOULD BE MORE TROUBLING TO THIS BORN AGAIN SCUMBAG THAN SIMPLY SHOUTING OUR LORD'S NAME IN VAIN

10. JESUS [EXPLETIVE DELETED] CHRIST!!!
9. MY BODY, MY CHOICE!
8. WHEN I GET OUT OF HERE, I'M GONNA GAMBLE AND DRINK FIREWATER!
7. WHERE CAN A BROTHER SCARE UP SOME WHORES IN THIS PLACE???
6. YOUR INABILITY TO SEPARATE YOUR JOB FROM YOUR FAITH IS INCREDIBLY DISTURBING!
5. YES, I WAS RESPONSIBLE FOR THAT GAY PRIEST MOVIE
4. AS A CHRISTIAN, YOU DISGUST ME
3. YOUR OVER-THE-TOP HOMOPHOBIA IS A SURE SIGN THAT YOU LOVE GAY SEX
2. I VOTED FOR OBAMA*
2A. DO YOU FIND IT DIFFICULT TO GET YOUR STETHOSCOPE ON OVER YOUR KLAN ROBES, DR. GRAND DRAGON?
1. ALLAH-HU AKBAR - I AM THE 21ST HIJACKER!

Honestly, this m*therf*cker will pay. I will be reporting him to the AMA tomorrow.

(* I actually voted for Ron Paul, who called the current financial crisis with great accuracy)

Meanwhile, I have been operated on without anaesthesia. The went through 3 centimeters of bone. I kicked my leg out twice to try to kick the doctor (not the militant Baptist a**hole but the poor Indian guy stuck with the dirty work -- and as a godless heathen he'll burn in hell, no doubt).

After this, I left. I am resolved not to let them TOUCH me again unless they, without offering another option, agree 100% to administer WHATEVER sedation I demand. I NO LONGER TRUST THESE ROTTEN PIECES OF SH*T TO ADMINISTER MEDICATION.

They will pay for their sins. I wept from pain and emotional distress for the rest of the day.

I am on FIRE with rage. They are in deep, deep, deep sh*t.

Good night, all.

BB's clinic day 3

Sorry no update yesterday, but it was a very long day.

We had a meeting with BB himself, which is evidently a rarity and reflects the efficacy of personal lobbying and the influence of PinnacleCare and a number of common friends. This was scheduled for 7:45AM but we were warned by one of his nurses not to get there until 8:30AM. As it happens, this was good advice because when his resident came in to check my vitals at 8:45, he said nobody should have told us to come at 7:45.

BB himself came in at about 9 and apologized for being late. I was prepared for his appearance and he did not disappoint. He came in wearing tight leather motorcycle pants and jacket, a mustard-colored shirt that was almost fishnet style netting (albeit a little more concealing) and cowboy boots. He's 65 so this whole getup is disorienting at best.

He spoke with us for about 90 minutes. There was a lot of good, some bad, some ugly.

The good:

* He told me he had reprimanded his assistant for speaking out of school and exaggerating things to make herself feel important. He said, for example, that all my blood counts were perfectly fine. There's no need for any plasma exchange or any of that nonsense.

* He told me that since October, they have no longer considered the Chromosome 1 issue that I have to be a high-risk factor. Jill breathed such a huge sigh of relief that I thought we both might break down crying right there.

* He pulled up the latest survival data that his protocol has and showed that the low risk group, even with Chromosome 1, have a long-term survival around 70% or so.

* He noted, importantly, that these survival statistics include death from OTHER ailments. So if a Myeloma patient is cured, and then steps in front of a bus, he is counted as dead for purposes of these statistics. That means survival could approach 90%!

* He said that he operates from the gut and isn't interested in randomizing trials to prove a point. If he believes that something is going to work, he will do it to save lives. This is probably why people that are more clinically strict have claimed selection bias.

* He called several doctors to get my gene array profile expedited.

We will not know if I am low- or high-risk until Friday, which is when he will get the gene array profile back.


The bad:

* According to the PET scan, I have over 100 tumors forming. There are five that are more pronounced than the rest. The biggest of these, no surprise, is on my sixth rib on my right side. I have others on my left clavicle (neck-to-shoulder), left scapula (shoulderblade), right ilium (hip) and I don't recall where the other two.

* He was concerned about the second clone. He called some gene specialists and discussed it with them with us in the room. It is not a myeloma clone. He asked them to do extra work on the marrow to get this sorted out. I then tepidly said that KA had said he sees this in about 30 percent of patients and not to be overly concerned about. BB almost jumped out of his seat. He said "that's complete bullsh*t! total bullsh*t! I have known KA for 20 years, and he's a friend, but I must say that is bullsh*t. I'm going to call him right now." And so he did. KA was not in. BB went on to say that "we don't know what it is, and it may be nothing, but to say 'don't worry about it' is irresponsible." He also noted that he doesn't see this often at all, and that when he does see something like this it is usually in the elderly and as a precursor to myeloblastic dysplasia (which is itself a precursor to Leukemia, and needs an allogeneic transplant). I'm trying not to worry too much about that, but it is in the back of my mind.

The ugly:

* He ordered a "needle aspiration" of one of the lesions. He asked me if I would be willing to do this, and I said "as long as you knock me out with some more versed, no problem." Then they told me it would be the right hip, which really stinks as literally the only part of my body that doesn't hurt right now is my right hip and leg.

It took me a while to place BB in my pop-culture lexicon, but I think he is closest to Anthony Hopkins' character Van Helsing in Coppola's Dracula Remake. A swashbuckling teuton with an accent who is equal parts eccentric, iconoclastic and plain-old kooky. But he is undeniably brilliant. I felt as though I was in the presence of someone who knew he was very, very close to curing this disease and has seen all its ins and outs.

It is safe to say that Jill and I liked him a great deal. For all the controversy, which I understand, he's the type of person that I typically get along with very well.

We then met with the nurses to scramble to move the scheduling around. I wasn't supposed to have an MRI until this morning, but they now needed the MRI in order to know where the tumor is so they can guide the needle. So that had to be moved, and my echocardiogram/EKG and pulmonary work had to be moved as well.

I asked them to confirm they would give me concious sedation, and they balked. I tried to be firm, but they eventually talked me out of it (guilted me into doing it without versed, actually, is more like it) and instead said they would put me on demerol (painkiller...cue the heavy metal song of the same name) and ativan (something to relax me).

We got the MRI done -- they just did pelvis and lower back so it took about 40 minutes. Then we went to fill the prescription for all these meds, which is complicated, involving multiple injections, lollipops I have to suck on and/or chew depending on which one, pills to swallow and/or crush and put under the tongue depending on which one, etc. Meanwhile anxiety is rising.

We were waiting for the prescription for about an hour when the nurse called, and he said the tumor was so deep that the doctor who would be doing the aspiration did not feel good about doing it without versed. I TOLD YOU SO!!!!! Anyhow, they were now going to call it off, do the rest of the MRI tomorrow, and try to find a different tumor closer to the surface. Why they won't just knock me out is beyond me, but at least it was a stay of execution so we left the hospital.

We met up with Lois, who went through the program, and her husband Frank for dinner. They are great people and we had a nice time comparing notes. Lois had no problem with induction, but developed complications after both of the transplants (enough to suspend all consolidation treatment after the first, and then after the second she didn't eat for about two months). She hastened to add these were unusual and probably related to pre-existing Lupus and kidney disease on her part.

There's a lot more to cover...but a day later I am finally off to have this procedure done. It does not sound like it will be pleasant. I'm actually typing this from the library in the cancer center here...tonight's update will bring you folks news from today.

Thanks to all of you for reading and for your support! Jill and I greatly appreciate it!

Rude awakening...

I dreamt vividly -- I wasn't sick. Life was like it was before.

Then the alarm went off. And instead of laughing with my children like I was moments before...I'm in a hotel room, covered in bandanges from IVs and bone marrow samples.

Not a great way to start the day.

Day two at BB's clinic...

...and it was another long one. I've got so many holes in me now I don't know what to do.

First, one thing I neglected to mention from yesterday. The first was a parting comment from the Nurse who said that they were going to run more blood (these were the last two vials taken on Monday) to determine the viscosity of my plasma, and if it was too high, they wanted to perform a plasma exchange. Sounds a lot like a blood transfusion to me.

We got up early and were at the hospital by 7:15 for a 7:30 appointment with, we thought, BB. I thought it was odd as the purpose for the appointment was expressly to discuss pre-op mechanics for the sedation that I was demanding for the bone marrow biopsy. Also on the schedule for the day: social worker and PET scan.

So it turns out BB wasn't the guy there this morning...we met with a resident of his who checked my vitals for the versed I was going to be given for the marrow biopsy. We signed a bunch of forms and went over to the hospital, where I was prepped for surgery. Mind you, last time I did this, I was clothed, in a doctor's office, and it took five minutes. Here, it's a two hour event. Nonetheless, it went smoothly, although my butt is KILLING me right now...they probably took a ton of marrow (7 tablespoons more at least since that's how much the gene array requires) and probably dug deeper than before. On the plus side, the nurse suggested that I keep the IV in place for the day so that they could just inject the radioactive isotope for the PET scan into it that evening. I was all in favor of not needing to stick me AGAIN so I had them leave it in.

I woke up with bandages on both hands and a big one on my backside. Now it was a race, because I'd been prohibited from eating anything all morning, and I had 45 minutes to eat before I had to fast again. I was only allowed to eat protein, so we dashed to the same bar & grill that we'd eaten at a day before and I had a turkey club minus the bread. It was actually pretty darn good.

We then went to the social worker meeting, which was uneventful but served to confirm that I had a good attitude and was not depressed. After this, we met with Lois (who has been through BB's protocol and was down here for a follow-up visit with her husband) and had a nice chat. These are wonderful people. We explained that BB himself was seeing me in the morning and they were surprised. I guess the lobbying has had a good effect! We went back to the hotel and napped for a bit (we got virtually no sleep last night) and then went over to the hospital for the PET scan.

THis is an interesting procedure. The notion is that cancer cells are more voracious consumers of nutrition than regular cells. They deprive your body of nutrients for six hours so all the cells are hungry. Then they take some sugar water and make it radioactive and inject it into your body. The cancer cells gobble it up with greater intensity than the regular cells. They do imaging on you in this state, and it indicates where the cancer cells are in your body.

They injected me and I sat in an isolation room for an hour and called a few people. Then I was brought into the PET scan room where, over another hour or so, I sat on a bench that passed through a tube (like an MRI but not quite as stifling and much quieter). We left and then went to the hotel for dinner (EVERYTHING in this city closes at 9PM and I'm not exaggerating...that left us with the hotel bar, so it was burger and fries for me again).

At the bar, we discussed the four things we are concerned BB will tell me when we meet with him at 8:30 tomorrow:

1. You are high risk.
2. Your markers are very bad and you must start treatment immediately.
3. You have to get your treatment here.
4. We're going to run a ton more tests.

I'm thinking of how to defuse all four of these comments...but we'll discuss that tomorrow once I can report on what he says. I anticipate we'll have the formal results of the X-rays, PET scan, the addtional bloodwork that wasn't completed yesterday, etc. Should be interesting...

Day one at BB's clinic...

We arrived last night, and had dinner with BB's very sweet but alarmist assistant, who was very kind to us and seemed to agree with me that I must be low-risk despite her alarmism in the previous email.

Today, we had a long day. Patient intake at 8:30 or so, followed by signing up for clinical trials: it involved committing to donating marrow to the database, which was no problem, and more blood...but also signing up to donate extra stem cells, which I object to if I don't have enough for at least three transplants...and also agreeing to allow a needle aspiration of any tumors in my ribs. Now I know I've complained about the ribs on here...but believe me these are painful to even LOOK AT much less stab with a needle in the heart of a lesion. Nonetheless, if I didn't play ball, I wouldn't get the gene expression profile that will tell me low-risk v. high-risk so I'd have come all this way for nothing. Fine. I signed up, knowing full well that if they ask me to do something down the road that I don't want, I will say no.

Then more waiting, following by an interview with the insurance person who, frankly, seemed a few cards short of a full intellectual deck and was probably fairly responsible for screwing up the insurance (I had a momentary bout of compunction for my angry voicemails). Nonetheless, she re-iterated that CIGNA had known about the situation since the 9th of this month, and that she had already submitted everything required for pre-approvals. This meeting was followed by more waiting, followed by meeting with the coordinator there who had me fill out more forms. Followed by more waiting. Followed by an INCOMPREHENSIBLE amount of bloodwork...I counted 25 vials of blood and I think I am probably underestimating.

Then we met with one of the nurses who took my medical history. Pretty uneventful. I was tempted, though, to start answering "yes" to everything just to see how long it would take them to forcibly admit me to the hospital. "Do you have chills?" "Yes, all the time." "Do you have hot flashes?" "I'm sweating profusely right now." etc.

This was followed by lunch. We drove around and settled on a simple bar and grill. I emailed Disney to find out about insurance, and then Jennifer at CIGNA called. She was, to my surprise, very pleasant and understanding and apologetic. Now mind you, she got the POLITE version of the angry voicemail last week, but still. Anyhow, turns out the problem was that the procedures were sent in as transplant work rather than diagnostics. I don't see why it would matter but according to CIGNA that's why the Medical Director there disallowed them. She said she had called Dolores at BB's to try to straighten it out, and that she wasn't able to get through to her, and was waiting to hear back. I said I would speak with Dolores. I also emailed Elizabeth at PinnacleCare to bring her up-to-date.

Then I went to get X-rays. I did so with a great deal of interest (and pain in my arm from where the vein was now tingling since no blood was left in it). I wanted to see how the bones were progressing and I was sure that I would see multiple lesions on my ribs or potentially my back given the pain that I am in these days. After all the X-rays were done, I asked the tech to look at them with me. Now, neither the tech nor I are doctors, but I've looked at enough examples of lesions on bones and I swear there's nothing there. I'm sure there is stuff going on in the marrow that's not kosher, but nothing has turned up on the X-rays yet.

At this point, I was feeling pretty good. I'm in the right place, these people know what they are doing, and I'm on top of it. The disease is advancing but there's no bone involvement and I'm way ahead of the game. I'm going to start treatment earlier than most and will kill what ails me. Great! Tomorrow I have to get a bone marrow biopsy done, so again I insisted on being given waking sleep drugs, and although they tried to talk me out of it (because it's a hassle for them) I insisted. So I had to call the pre-op counseling line and was on hold for 35 minutes when they finally came on the line and gave me six seconds of instructions ("don't eat after midnight"). Thanks. Sure am glad I waited 35 minutes for that. And in any case, what they are giving me is so mild the prohibition doesn't even stand. But whatever. All I know is they're gonna tap my hips dry of bone marrow and I don't want to feel anything.

We then went to new patient orientation. I tried to get out of it given the depth of my research but they were pretty insistent. So I went. I am younger, healthier, and better researched than anybody else in the room. I'm feeling good at this point. The insurance person calls me while I'm in there, and I tell her I'll talk with her after I get out (since they were making me go there). She came down to address the group, and I stepped out in the hallway to speak with her.

Long story short, I told her Jennifer had called and was waiting to hear. The insurance woman is a dolt. Sweet, but a dolt. So hopefully that will work itself out.

As I'm talking with her, the intake nurse calls. She's got that "I'm in a state of urgency" aspect to her voice. She tells me my protein is 12.4!!! I tell her "how can that be, the M-spike was only 6.4 a month ago." She tells me things do not look good and they have to take more blood, and my uric acid is very elevated and I immediately have to go on meds for it, and they are going to have to take even more blood in a couple of days.

What can I do but agree? Well, the other thing I can do is PANIC because my flippin' M-proteins have DOUBLED in the last month. Again, I'm really worried here. She comes down with the labs, and sends us up to get more blood drawn immediately. Which I do. In the other arm since there's no blood in my left arm at this point.

While waiting for the prick (needle!), I'm reading my labs. AND THIS PANICKY WOMAN COMPLETELY MISREPRESENTED STUFF. Yes, my TOTAL protein is at 12.4...NOT the M-spike. My total protein a month ago was 12.2. IT'S HARDLY BUDGED. My Albumin is down slightly, and that's not great, but the other markers are no big deal.

So now, I'm pissed off again at the alarmist nature of what's going on. We leave the lab and I'm ready to head back upstairs to tell the nurse. We see her exiting the elevator and I tell her that she led me to believe my M-spike had doubled when in fact it's probably stable. She more or less said "oh." WTF??????

I got my prescription filled but I wasn't going to just start taking this medicine. I emailed SF from City of Hope and told him the situation and asked him what to do. He called me and said it was okay to take the medicine for the uric acid because I'd need to go on it eventually, but we agreed that they were very alarmist here.

Just then, I got an email from the same nurse we had dinner with, who scared the crap outta me two weeks ago with her "your kidneys are failing!" email. She read me the same litany of panicky stuff..."THESE MARKERS CANNOT BE IGNORED!! YOUR PROTEIN IS ALMOST AT 13!!!! WE WILL HAVE TO DRAW MORE BLOOD TOMORROW AND REPEAT THESE TESTS."

At this point, I'd had enough. I thanked her for her concern, and told her no more blood would be drawn. I explained I understand the seriousness, but nobody else agrees with the sense of alarm and it must stop. I pointed out the total protein had barely budged in a month, and I reminded her of her panic over my calcium levels which have been stable since diagnosis and remain in the normal range. I told her to chill out, to do the PET and MRI, and that there would be no more major bloodwork done.

I confirmed with both SF and Elizabeth that my message was right on target and not over-reaching or rude. Haven't heard back from the panicky nurse but honestly, I've had enough of this crap. Yes, I'm sick. I GET IT. Yes, I need treatment soon. I WILL GET IT. STOP GIVING ME THESE HEART ATTACK PANIC EMAILS!!!!!

Well...that's about it for this evening. My arms are killing me from the two different blood draws, especially my left arm which feels like it's ready to collapse in on itself. I will write more tomorrow, when I am in my radioactive post-PET scan state.

More insurance woes...

This time disability-related.

Disney self-insures and when I spoke with our head of corporate HR about my condition, he was very helpful and we discussed Disney's disability policy, which was to pay benefits equal to 90% of base compensation. The 10% differential would be something I could absorb without too much trouble, and although nobody likes to take a surprise pay cut, it was the least of my concerns given my health.

Unfortunately, that policy seems to have changed effective less than a month ago. Now, it seems, Disney only pays 50% of salary and leaves "the rest" up to state disability. Unfortunately, state disability defines "the rest" differently than Disney or I would. The net-net is state disability payments are capped and so I'm going to be taking a 40% pay cut for the next 10 months. That, combined with a few gems like insurance disallowing the tests yesterday, is going to great a much bigger financial burden.

I earn a good living, and we're not going to quality for any other assistance. Nor would I accept it, as those programs are needed by people who have less than we do. But it's still going to be very difficult to make ends meet without making drastic changes like taking our daughter out of her school, selling our house (in this economy?????), etc.

Oh well. One more kick in the groin when I need it the least. I need some good news for a change...I remain strong but there are just so many things that can go wrong before things start to crack a bit.

CIGNA is an ulcerated boil on Satan's backside...

Just had the most irritating event today. Jill and I are flying to Arkansas by way of Memphis on Sunday AM to go to BB's clinic for a week. It will be funny to meet the guy after all this time.

CIGNA is the administrator of Disney's self-insured medical insurance plan. Because the tests that BB is running are expensive (MRI, PET scan, etc.) I wanted to make sure it was covered. CIGNA has known about this for WEEKS and did indeed certify them as in-network expenses. Until 4:45PM today, Friday, 15 minutes before closing and with no way to do anything about it.

Elizabeth from PinnacleCare emailed me to say that BB's assistant Bonnie (the very nice woman who sent the alarmist email) was informed that these tests would not be covered. So now I'm out tens of thousands of dollars. There is an appeal process, but even so, this is maddening to say the least.

I called my CIGNA contact and ripped her a new one (pardon my french). I've never been so angry in a phone message in my life -- the language was extremely colorful (more swearing than Tom Cruise's character in Tropic Thunder) and my voice was raised and I had a few real gems in there. By the end of the message I was screaming at the top of my voice and told her that I'm sure she wouldn't want to be my case manager and I said I was indifferent because I'm sure I'd get the same crappy level of service no matter who they put on my account.

I also warned them...if their MO is just to deny a claim a hundred times and wait for the person to go away, they are in for a rude awakening because I'm going to be louder, angrier, more full of choice vocabulary words, etc. if they don't do exactly what I demand of them.

The most upsetting thing is that this is taking energy that I need to fight my disease. I told my friend that I was so damn angry and screamed so much that I'm pretty sure I killed a few cancer cells just from pure rage.

In other news, a bought a couple of books off Amazon: 100 Questions and Answers about Myeloma, and 100 Questions and Andwers about Stem Cell Transplantation. These are depressing books but they are useful, even though by now I've learned about 80% of the material just from my own research. They will help me fill out my list of questions for BB.

Lastly, I got my itinerary for next week. Monday is EKG and X rays. Tuesday is a first consult with BB, a bone marrow biopsy (for which I'm demanding some kind of sedation), the gene array analysis, administrative stuff and a 2-hour PET Scan appointment at 7PM! Wednesday is pulmonary tests and other follow up. Thursday is an MRI and nutrition counseling. Friday is an hour consult with BB and then I'm free to enjoy all that Little Rock has to offer on Friday evening.

Jill and I do plan on having dinner with a lovely woman named Lois who went through BB's protocol a couple of years ago, and her husband. They've been very nice and have told me everything they can about the protocol, its side effects, etc.

Well, I've calmed down enough from my screaming fit voicemail mode to at least make an effort to get some rest. So off to bed I go.

BD's consult

After a snafu with BD's office, I managed to have a brief consult with him. It was quick, but it was very valuable. Here's what I learned:

1. He thinks that given my age, BB's protocol is a very good choice.

2. He is not terribly concerned with long-term leukemia as he believes the doses of cytoxin and etoposide are low and long-term leukemia is dose and schedule dependent.

3. He is not terribly concerned that the marrow will be unable to support normal blood counts as people coming out of BB's protocol have done well in this regard. Having said that, he did suggest I harvest enough stem cells for 3 transplants (and maybe I'll do 4 if possible).

4. He believes thalidomide is sufficiently different from Revlamid so as to require both agents in the BB "kitchen sink" approach.

5. He said the key to avoiding neuropathy with thalidomide is immediate dose reduction and taking a very proactive approach toward recognizing it and alerting the doctor(s) about it. Same deal with Velcade, although thalidomide neuropathy is much more serious (less painful but permanent)

6. He said that some poor risk GEP patterns have been linked to Chromosome 1 so BB and his folks are studying it, but just because I have some odd Chromosome 1 issues doesn't mean I am necessarily high risk. He noted that the lack of bad markers with 4;14, Chromosome 13 and 17b (a new one! thought I was done learning!) are all good factors, as is the fact that I have hyperdiploid.

7. He said that "we aren't quite there yet" even with all the novel agents in the pipeline, which again points me in the direction of the BB protocol.

So more or less a pretty strong statement of support for my choice of the BB method.

I'm gearing up. Cancer is gonna be sorry it knocked on my door -- I'm going to beat the crap out of it mercilessly!!!

Side effect run down, and some thanks

Not in that order.

I want to thank those who are following my blog and those who are taking the time to post comments and/or email me. I've been contacted by people from all over the world, some of whom have myeloma, some of whom have relatives with it, some of whom are dealing with other cancers or have relatives that are. Every one of these people, and of course our family and friends following this blog, is special to me -- they have been quick to share, encourage, and support and it does make a difference. Thank you all very much.

I have more good days than bad, but I'm trying to be pretty unvarnished here so if I complain now and then, please understand I'm just being true to what I'm feeling.

Now then.

The side-effect derby. I'm trying to get this all nailed so I can speak with BB about them individually. I'm also only including the side-effects I'm most concerned about (i.e. nausea and hairloss are not that big a deal, but going deaf is).

Velcade - peripheral neuropathy, seems to be dose-dependent and typically goes away

Thalidomide - very long-term and/or permanent peripheral neuropathy that takes years to heal if ever

Dex - cataracts, but that's not the end of the world

Cisplatin - hearing loss and kidney failure (wheeeeee!!!!)

Doxyrubicin - very bad cardio effects, particularly once cumulative dose rises above 550 mg/m2

Cytoxin - late-term acute leukemia (wheeeee--uuuugh I'm dead)

Etoposide - late-term acute leukemia

Revlimid - excess toejam and bellybutton lint

Okay, so I'm doing my best to keep the humor up. Revlimid has no such side effect that I'm aware of. 5% chance of peripheral neuropathy seems pretty manageable.

I will post more after my consult with BD, which I'm anticipating to be a barrel of laughs. : \

The blues...

Not feeling that great today. I bade farewell to the office today and that was another example of reality setting in. I've been reading about side-effects this afternoon and there is so much poison I'm going to be putting in my body and so much that could go wrong that it's almost overwhelming. Obviously, I realize not everybody gets every side effect and all that...but the reality is, it's all out there and it's scary.

One thing I am going to be sure to question BB about is why he uses Thalidomide in induction and consolidation but Revlimid in maintenance. Revlimid is more effective than Thalidomide, and has much fewer side effects (peripheral neuropathy is a side-effect in about 80% of Thalidomide users but only about 5.4% in Revlimid users). Why not use Revlimid the whole time? It could be that it's distinct enough from Revlimid that it forms another part of the kitchen sink regimen, but if that's the case, does it still need to be used in both induction (two cycles) AND consolidation (two cycles?) -- that almost guarantees long-term neuropathy (in fact, SH, upon seeing the protocol, more or less guaranteed as much, between the Thalidomide and Velcade). Velcade's neuropathy can usually be dialed back with dose control -- Thalidomide doesn't have that characteristic. The other reason to stick with it, posited by Dr. RC, could be that BB was building a statistical model and was reluctant to switch protocols midstream while he was getting data.

I'm going to push him hard on the notion of using Revlimid throughout induction, consolidation and maintenance and see what he says. Certainly SF would probably agree with that protocol.

I have dinner with some people from work soon, so I'm going to try not to have this all hanging over me. It's hard.

Quick update

Not too much of substance here but I'm overdue for a brief update.

I'm working out my long list of questions for BB, which should inform my final "decision tree" on what I'm going to have done and where. I was copied on a note from SF to SH talking about my situation, how treatment is needed relatively quickly, and how we've discussed BB's protocol as well as a more traditional protocol without the PACE drugs. It wasn't alarmist, but the implication was clear: the PACE protocol is extremely aggressive and has a host of terrible side effects. I believe both doctors will ultimately support whatever I want to do, but I think they know that PACE is awful and would probably be happier if I went with the more standard treatment.

I spoke with a few more senior people at work to let them know, and today I go in for my last day in a long while to tell the people that work for me (I've told a few of the more senior ones but most of them don't know). In addition to the Disney Channel exec I wrote about last time, another senior person I spoke with knows SF well (his wife went through a transplant for leukemia a few years ago) and had wonderful things to say about him. I have a lot of confidence in him, and yet I'm still torn between doing this here versus at BB's shop. This is one of the things I have to bottom out.

I have my consult with BD tomorrow, and I'll ask him again about secondary marrow impacts of the PACE drugs and the tandem transplant protocol in general. Then my research will be done, unless I can get a phone consult with SJ, who I was scheduled to see on Feb 23rd, but that's too long to wait, I think.

I've been feeling pretty good but the ribs are very sore these days. Some days I need no pain medication, most days I can get by on one or two advil, but lately it's been at least four advil and there have been a couple of Vicodin days. I find, also, that as the day of treatment draws closer, dread is starting to set in. The full BB protocol has four courses of VTD-PACE plus the two transplants. That means six multi-day periods of intense nausea, six periods of neutropenia, etc. I try not to lose out to fear, but it is difficult...and as it gets closer, I'll wrestle with it more intensely.

Meanwhile, I'm taking six capsules of liver.52 herbal formula per day and 8 capsules of milk thistle, and I'm off Lipitor for more than a week now. I'll be interested to see the liver enzyme numbers from my upcoming tests if nothing else.

Two doctor consults, BB's overzealous assistant explains herself, and Hannah Montana

I spoke yesterday with Dr. BC, who treated my friend RH's father DH for myeloma and gave him an allogeneic transplant six or seven years ago. I had wanted to have this conversation for some time, mostly to find out why he went for the allogeneic option instead of the safer autologous option.

I had mentioned in a previous entry that DH approached his myeloma differently than I. I have been researching aggressively, looking at all my options, learning everything I can about the disease, etc. DH basically said "I trust my doctors" and left it up to them and didn't really ask any questions. For example, he didn't know the treatment related mortality associated with allogeneic transplants, even though he had one performed on him. I appreciate that he was very "zen" about things and didn't stress about it, but it's a very different approach.

So it turns out DH, consistent with this approach, didn't even know what he had. He didn't have myeloma, but rather something called a myelodysplastic syndrome which is a precursor to leukemia and for which autologous transplants don't work. Hence the allogeneic transplant.

With that question now resolved, I went into my "eight minute consult" routine, which consists of asking if I'm crazy to pursue BB's protocol, what people were concerned with about it, the chance of long-term acute leukemia from the cytoxan and etoposide (the C and E of VTD-PACE that is the induction protocol for BB), and the chance of what I've taken to calling "mangling the marrow" from the whole BB protocol such that in the future, I might not qualify for new novel agents.

Dr. DC, who knows Dr. SF and Dr.KA, is a "single transplant guy" who falls into the mainline of Vel / Rev / Dex plus one autologous transplant. His problem with BB's protocol is that the data hasn't been replicated elsewhere, and he might be choosing people that benefit from his protocol (not the first time I've heard this allegation). I told him, as I have written here, that frankly I can understand the clinical validity of that concern but as an individual, so long as he chooses me to prove his protocol works, I don't care one bit about selection bias. DC agreed with this logic.

He thought the acute leukemia and marrow mangling were things "he would be concerned about" but that no real data exists and just like one would want a comparison of BB's protocol against other protocols on same patient group to eliminate selection bias, one would want comparison of secondary marrow problems on or off BB's protocol, but no such data exists. I will have 1-2 more brief consults (BD next week, and SJ if I can get him before Feb 23 since that is now too late) plus BB's visit to try to bottom these things out.

I also spoke yesterday with a holistic medicine person suggested by PinnacleCare. There's a fine line between legitimate complementary therapy (what kind of food should I be eating to help me get through chemotherapy, etc., are there any normal supplements that work like more Vitamin D, etc.) and "weirdology" like I experienced with that flaky Canadian outfit. This person was an actual doctor, unlike the Canadian folks. At any rate, I got as far as mentioning lipitor and getting the "it causes cancer, stop taking it, don't believe me look it up" before I tuned the guy out. I may talk with one more of them.

In the meantime, I'm going to experiment for a couple of weeks with a product called liv.52 that my friend Geoff recommended -- it's an herbal formula that has a bunch of stuff that helps the liver. I'll also be taking milk thistle extract, which is the same type of deal (and is actually in clinical trials to compare liver response to chemo on this vs. placebo). I'm gonna do this for a couple of weeks, and then I'll have blood drawn at BB's shop. We'll see what the liver numbers do. I'm not going to continue this stuff once I begin real treatment, but if it brings down the liver enzymes a bit, then great.

I had Elizabeth from PinnacleCare call BB's assistant to find out what she was thinking when she sent that alarmist email. Long story short, there is a question about the Chromosome 1 abnormality that might not be the greatest, but the real problem is that she somehow missed the fact that I've been to two other doctors since the first labs she saw. My calcium hasn't budged from the first test, I have been monitoring the progress of the disease, etc. For some reason, she thought I was being lackadaisical about it and she wanted to create urgency. Unfortunately, the words High Risk when used in connection with BB's protocol have a very specific meaning which is terrifying to consider. She should have chosen her words more carefully. Not crazy about her, I gotta say. But I did like BB, both because of what he said and the fact that he called me at close to midnight his time, which was pretty remarkable for a doctor I've never even met yet. His assistant did explain that BB would take me on personally as a patient, which is great.

Lastly, what does Hannah Montana have to do with all this? Well I've been telling some of the folks with whom I work, so they won't wonder why I'm out of the office for the next nine months. I spoke the President of the Disney Channel, and his creative partner there has been fighting cancer of a different type. This executive, who more or less created High School Musical, Hannah Montana, the Jonas Brothers, etc. called me and we spoke and compared notes for about 45 minutes. Turns out his father-in-law used to be a very senior guy at the City of Hope, and Dr. SF has helped this guy out a lot even though SF doesn't work on the type of cancer that this guy has. So another vote of confidence from somebody who has known SF for a long time.

I feel very good about the doctors that are caring for me.

Thoughts on last night's scare, and a nice call with SF

I like BB.  It was great that he called, and he did put me at ease.
I also received a call from SF, whom I had told about the dire email I received from BB's clinician.  He was concerned, as I am, about the tone of the email which was quite alarmist.    Here's what it said.

Elizabeth, by way of introduction, I am Dr. BB’s assistant for almost 20 years and work with him clinically and in research. He has asked me to contact you so we can answer your questions and let you and Mr. Van Dyk know what to expect and why.

I have read with interest the scenario that has been outlined for you and ask that you call me as soon as you can.  Mr. Van Dyk has a high risk gene array based on the changes noted in chromosome 1. As noted in the dictation from City of Hope, he does not have deletion 13, an abnormality that we have not used for more than 2 years to make treatment decisions. In large multivariate analysis, it didn’t hold up as a risk factor. Mr. Van Dyk needs treatment very soon. He cannot wait two weeks.

I am very, very concerned, as is Dr. BB, that he has a marrow with 80% plasma cells noted 6 weeks ago. The protein levels could mean the beginning of a loss of kidney function and other very serious problems if not treated. His calcium marker is almost 10.

Translation: blah blah blah chromosome 1 blah blah blah high risk blah blah blah old genetic markers that say he is low risk are ones we don't use blah blah blah can't wait two weeks blah blah blah kidney failure blah blah blah calcium almost 10 blah blah blah grim reaper holding for you on line 2, Mr. van Dyk.

Pretty scary stuff, and if you look at BB's presentation and how he draws the distinction between the effectiveness of his protocol on low risk vs. high risk gene array patients, it's very dire.  Dismal, to use his words.  So dismal as to suggest there's no point in pursuing that therapy since it will be a dead end and I'm better off doing a single transplant with fewer drugs since that will take less time, be less toxic, and both that and the more toxic route would both leave me with no hope of cure and a 3-4 year lifespan absent developments of new drugs.

When BB called, he did say that chromosome 1 marker is troublesome, but not definitive, and that we needed a gene array analysis done.  He thought it would be fine to wait until my already scheduled appointment.  I am quite sure that he will want to treat me immediately, but that's a far cry from "Death's icy hand is two inches from your shoulder, run run run!!!!!"

I am a little perturbed by the tone of the email.  Also, while it is true that my calcium is almost 10, other doctors have seen this and repeatedly stated that my calcium is normal.   "GOOD GOD, YOUR BLOOD PRESSURE IS 124 OVER 82!!!!!!!"

Anyhow, SF called (I had forwarded the email to him) and basically said he was a bit "perturbed" (he used more direct language) about the tone of the email.  I told him that it was one thing if BB's folks had more data than anybody else, and could run more detailed statistical analyses, and on the basis of that were able to glean more from a chromosome 1 abnormality than SF or others, but the calcium marker is something that SF, KA, SH, and even gloomy-ass ML should be able to review just fine.

SF had a couple of very insightful things:

1.  The gene array analysis is a useful thing, however while there may be a lot of data at BB's shop, we need to consider that a lot of that data could be without the benefit of velcade, etc. and they really need to get my blood sample and run it against people that are very similar and who were on the treatment program I'm likely to pursue.  Looking at the one chromosome situation in isolation can't be definitive.

2.  The calcium marker didn't look alarmist to him.  "What do these people know that I don't know, or KA doesn't know?"  He jokingly said "What kinda operation are these people running down there."   :)   He's friends with BB for nearly 30 years now, and I know he respects him.  So this was directed against an overzealous assistant, more than BB (who himself told me to relax and let's see what the gene array tells us).

3.  I explained KA's concern about mangling marrow and making it difficult to use novel drugs in the future since I won't have regular blood counts.  He (SF) said he wouldn't be concerned as "we've gotten very good at managing these meds and that shouldn't be a factor."  He also said he wasn't terribly concerned about the long-term acute leukemia possibility.

So, the net-net: I have chromosome 1 abnormalities and I cannot rest easy knowing I'm in the low-risk group for BB's protocol, which is a bummer.  But let's not start taking measurements for the casket just yet.

That was four hours of terror last night, but at the end of it, I slept well.  In the words of the flustered CIA bureaucrat at the end of Burn After Reading (a funny movie, by the way):  "What did we learn here?  Damned if I know.  I guess we learned never to do it again."

More news as it develops.

Okay, spoke with BB...

I like this guy -- he called me after his dinner ended at 11PM his time.  It seems his assistant / clinician MAY have overstated things.

My chromosome 1 abnormality is not a good sign.  But it's not definitive.  Their proprietary gene array analysis will need to be done to determine what is going on.

But he did say that he thought my regularly scheduled appointment on the 25th would be soon enough.  In other words, I have next week to spend with family and friends.

So I am back, albeit somewhat shaken by the process, to believing that I will be in the low-risk group.  I have too many otherwise positive markers.  So until they prove to me that my gene array analysis definitively puts me in the high risk category, I'll go on believing I am low risk.

If I *am* deemed high risk, and his protocol can't help me, then I will go with KA's suggested regimen (which is consistent with what City of Hope and Dr. SH would do) which would be Velcade, Revlimid and Dex during induction, followed by a single autologous transplant, followed by maintenance on Revlimid.  Followed by finger crossing to make sure more drugs come out.

What a day...ugh.

Now drinking:

Had a 2002 Quilceda Creek (100 points in Parker).  Delicious.  Moving on to a 2000 Chateau Pavie (100 points in Parker as well).  It's a two bottle evening.  The liver can wait!

The worst thing about this, by the way...

...is that now people need to scroll down to see that sweet photo of Jack Elam.  :)

Bad news...

Probably very bad news, actually.

I received word from BB's office that based on my chromosome 1 abnormality, which most people do not associate with high risk, that I *am* high risk.  They use a more robust analysis of genes and chromosomes than elsewhere.  The historical markers of risk -- chromosome 13 deletion and 4;14 translocation, neither of which I have -- haven't been used in more than 2 years in BB's offices because they were proved in multivariate analysis to not be useful factors.  In other words, because they have enough data at BB's shop (since he sees more people than anybody in the world) they can run more complicated statistical analyses of what types of this cancer are worse than others.

They believe I am high risk.

What does this mean?  Well, a couple of things.

1.  I will not benefit from their treatment.  In contrast to low-risk MM, where people who go through BB's protocol have a 50-60% chance of being cured and 85% are still alive 4 years after diagnosis, with HIGH-risk MM, only 25% are still alive after 4 years...and there is no "plateau" that suggests a cure.  So 25% are alive after 4 years, 20% after 5, etc. with nobody beating it.   In BB's own words in his presentation "The Myth of Incurability" (which evidently only applies to low-risk cases), he writes "The outcome is still dismal for high-risk MM."

2.  I can't even wait two weeks to be seen.  I think I will have to go next week.

The one thing I am wondering is all they are going off is my chromosome writeup from City of Hope, which noted that I have a chromosome 1 abnormality which is present in about 15% of people.  If that was the ONLY thing that separated low- from high-risk, then they wouldn't need to look at the rest of the genes.

I'm hoping that's the case.  But for the first time since my initial diagnosis, I'm scared to death.

BB's clinician is at dinner now but should be calling soon.  I may post another update tonight.

Today had been a good day -- I was upbeat, I was joking with my brothers this morning, and I received a very nice note from a person whose husband is battling a brain tumor, who said this blog was uplifting.  I'm glad it can be...I hope it remains that way consistently.

Right now, there are no guarantees.

Quick update on a few things...

Well, we got started on the will and trust for the kids today. Overdue, and not exactly uplifting, but I felt very responsible when we finished our meeting with the attorney. If only I'd gotten that damn long-term disability I'd feel like the most responsible guy in town.

I spoke with Dr. PZ, my primary physician who got this whole mess started when he was smart enough to chase down the meaning of that protein back in early November. He said that he had looked at protein levels in the past, and they had never been elevated. So there goes the theory that the MM raised my cholesterol. On the other hand, he was fully supportive of stopping Lipitor, so I'm now off that. He was also supportive of reducing alcohol consumption (very few doctors actually suggest you drink MORE...

...other than perhaps Jack Elam's character in Cannonball Run). Hopefully I won't meet anybody at BB's clinic that resembles him. I scoured the Internet for a bigger picture that showed off his stethoscope but couldn't find anything. You'll have to use your imagination but I assure you, he's wearing a medical coat.

Anyhow, so no Lipitor, reduced alcohol and I am considering taking milk thistle extract in order to help the liver get into tip-top shape before and during chemo. Even if I discontinue it during the chemo, I will probably use it for the next month or so to help the liver get strong. PinnacleCare is looking into the one clinical trial I found out (comparing two groups in treatment for leukemia to see which group -- the one on the extract or the one on a placebo -- better manages liver damage from the chemo).

I started telling folks at work today, and they were very supportive. I'm about to click "send" on a letter to the CEO. I'm working on a lot of projects and I'm gonna be out of commission for several months -- I don't want him to think I just vanished without a trace!