Saturday, January 31, 2009

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

Friday, January 30, 2009

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, 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 was a sloppy post.

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

Thursday, January 29, 2009

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'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: " 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:



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!

Wednesday, January 28, 2009

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.

Tuesday, January 27, 2009

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...

Monday, January 26, 2009

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.

Saturday, January 24, 2009

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.

Friday, January 23, 2009

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.

Wednesday, January 21, 2009

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. : \

Tuesday, January 20, 2009

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.

Friday, January 16, 2009

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.

Thursday, January 15, 2009

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.

Wednesday, January 14, 2009

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... 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.

Tuesday, January 13, 2009

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!

Monday, January 12, 2009

Consult with Dr. KA, and some pleasant surprises...

Well, not in that order, exactly.

Pleasant Surprise #1: I got my Vicodin prescription (750mg pills), but rather than take one of those, I took one 500mg pill that Jill had left over from her bout with Meningitis last summer (waste not want not when it comes to narcotics!). I work up the next morning, long after the Vicodin would have worn off, and my pain was remarkably better. I still felt it if I exerted myself, but I was able to manage without even any Advil, much less 750mg of Vicodin. Since last Thursday, I've felt a little pain in my back (though today it feels fine) and intermittent rib pain when I exert myself, but it's nowhere NEAR the degree of discomfort that I had last week. I'm doing my best not to lift anything (tough, as both the kids want me to play with them) and golf (even running) is out of the question, but otherwise I can get around more or less.

Since I was feeling better, I went to Las Vegas this last weekend for my annual trip with a bunch of former Disney executives. This was a calculated buddies and I have a saying: "go to Vegas healthy, come back sick...go to Vegas sick, come back dead." Obviously my immune system isn't firing on all cylinders, but I also took it a little easier than usual and I feel fine.

This is always a good time and this trip proved no different. On the long list of people that deserve Cancer more than me, let me add Jake Delhomme, the QB for the Tennessee Titans. That terrible performance cost me a couple of hundred bucks!!!! (please note: I would NEVER wish cancer on anybody -- even Jake -- so please understand I'm's just that I haven't cracked a joke on this blog in quite some time).

Pleasant Surprise #2: I awoke this morning to an email from BK, a very prominent executive in the videogame business that I've known for some time and who earlier on called the director of the City of Hope, whom he knows well, on my behalf. BK has been fantastic and I owe him my thanks. His email this morning introduced me to a friend of his, CN, who he told me to call.

CN is an executive in Detroit (not car associated) whose wife, I learned, contracted MM 13 years ago. I spoke with him for about 40 minutes and he was immensely helpful. He approached the disease in the exact way I did. He researched everything he could, spoke with all the top doctors, joined the board of the IMF (the International Myeloma Foundation, which is the other group, along with Kathy Giusti's MMRF, that works to cure this disease), goes to hematology conferences, etc. When we were speaking, I anticipated what his comments and questions would be, and he anticipated mine -- it was two like minds talking about a problem they were both tackling and it helped a lot.

He knows every one of the top doctors and as he went through the list I was almost laughing because they are precisely the ones I have spoken with. He explained the biases / philosophies of each doctor and they are consistent with what I've observed. He told me he was surprised I was able to speak with KA at all, much less have KA take a deep interest in my case, which was great since I was to speak with KA shortly.

Perhaps most importantly, he told me his wife went through Total Therapy 1 with BB and has been in complete remission for eight years. He thinks BB is a very quirky guy (a 65 year old who rides a motorcycle to the office and does rounds in black leather pants), but an excellent doctor. I have no problem with quirky so long as I'm cured. He said that long-term leukemia isn't an issue with BB's agents because the real issue for leukemia is prolonged use of these chemicals. BB's protocol involves no more than 12 days of these drugs (and possibly as few as 4), as opposed to a regiment that could have them on them for weeks or even months. He mentioned BB has gotten very good at assessing which agents need to be used.

I then spoke with Dr. KA for about an hour. KA is a terrific doctor and was great to speak with. The highlights:

* He concurs with the diagnosis. He is heartened by the fact that my Beta 2 Microglobulin is not high, my C Reactive Protein is normal, there is no bone disease, there is no renal failure, etc. He said I have hyperdiploid myeloma which has a better outcome than most myeloma. The absence of negative chromosomal factors like Chromosome 13 deletion, 4;14 translocation, etc. are all positives as well. Nonetheless, I still have MM, and it is progressing rapidly enough where treatment needs to happen soon.

* The fact that I have a second unrelated clone (meaning two separate cells went haywire and started duplicating) is "not as uncommon as people probably happens in 30 percent of cases."

* His recommended treatment is induction with novel agents (Velcade, Revlimid, Dex) followed by high dose melphalan and autologous transplant.

* He is in favor of maintenance therapy (specifically Revlimid)

* He thinks the VRD regimen is so effective that, when combined with my generally favorable prognostic factors, that "there is a 99% chance you will be in complete remission after induction therapy." I like those odds -- I'm 100% certain of that much myself, actually.

* He thinks the TT3 protocol that BB uses (and he has known BB for 30 years, and also SF for 30 years which is great) "would not be crazy to pursue" although it's not something that Dana Farber would "ever do." The reason being that the new drugs are so effective it might be possible to achieve the same results from less drugs, or from a single transplant rather than a double transplant. [Unfortunately, in my opinion, the same logic that says "you're in remission after one transplant, you don't need another" would also say "you're in remission after induction, you don't need a transplant." BB's protocol really is everything and the kitchen sink. The issue seems to be that one might be able to be cured just by using the faucets without whacking you over the head with a large enamel basin]

* On the topic of kitchen sink, I asked about the chance for long-term leukemia in BB's protocol. He had heard of it but thought the odds were low (I failed to ask how low), but he seemed to think that there could be secondary marrow problems that might result in low blood counts that might make it difficult for me to be put into trials for new drugs that are coming out.

* New drugs coming out include something called heat shock proteins (harvested from sea creatures at the ocean floor, evidently) and HDAC inhibitors. He thought a combination of HDAC inhibitors and heat shock proteins with VRD might very well be a cocktail that could achieve remission for a "very, very long time." He noted that the quoted median survival of 3-4 years which has recently increased to 7-8 years does NOT include the benefit of Relvlimid or Velcade, so I could be looking already at 10+ years of median survival without even getting the transplant. Take THAT, Dr. ML!!!! (he was the "don't plan on living to Parker's wedding" guy).

* The same French doctors that did a study proving that early transplant after induction is better than late transplant are now repeating that trial with VRD. Two arms of the study will go on VRD and have their stem cells harvested, one group will get the transplant immediately, and one will wait until recurrence. They can then see if early transplant still makes a difference. It would be very interesting to see the results of this -- but they won't be useful for another 8 years or so.

* He thinks that Lipitor did not cause the cancer, but he does note that Myeloma can confuse cholesterol readings. It may be possible that when my cholesterol went from its fairly predictable 220-230 about three years ago up to almost 300, this was the MM starting up. I'm going to check with PZ to see what, if anything, the protein levels were back then. He had mentioned that there hadn't been high protein in my bloodwork before but it's possible he didn't run all the same labs. In any case, when I go in for high-dose chemo, I will have to be off all meds including Lipitor (which irritates the liver). And no wine. I want my liver as strong as possible to deal with the high-dose chemo. So once I start treatment, two glasses a week is it for me. : (

* He thinks there should NOT being any long-term peripheral neuropathy as long as I am not on Thalidomide. So one big question for BB is why use Thalidomide if Revlimid is more efficacious and not likely to cause neuropathy? Velcade still will, but it is dose and schedule dependent and there are things that can be done to modulate those. "We've gotten very good at that," he says. The other big question for BB is the likelihood of leukemia and secondary marrow problems. KA says BB will tell me it's not a problem at all, "but I am whispering that it might be." I wish there was less uncertainty about these things! The last thing I want to do is get into remission for 7 years with BB, have it recur, and then have mangled my marrow such that I can't tolerate or benefit from HDAC inhibitors, Carfilzomib (next-gen Velcade), etc.

* He said there was no real difference between in-patient vs. out-patient. He said that "old timers" like him and Dana Farber would be inclined for in-patient. I think more and more that this depends on the quality of the hospital -- I want to make sure it's new, and clean, and has a good means of confining germs. And that the rooms aren't someplace that I'll be miserable while I'm there, of course (beyond the inevitable misery of the disease and treatment itself).

* He thought I shouldn't wait very long for treatment, so I'm reluctantly moving up the start date from March 2 to February 16th, I think. He said the marrow involvement is significant and the report says that cells have formed in "sheets" and "clusters" and that makes him concerned. They are dividing rapidly. Stupid little buggers -- I'm gonna poison them good!!

So that was that conversation.

In other news, my brothers are being blood typed for an allogeneic transplant down the line (KA told me Kathy Giusti had one of these, but from an identical twin which is rare and which obviously makes it easier to tolerate). That's good news because it means Kathy may be cured and I want her healthy and around for a long time to help lead the fight against this disease.

I've worked things out with Disney where I *THINK* I will be able to be covered throughout my illness, provided I can work a bit from home now and then, which I should be able to do. So that takes care of the insurance concern. Afterwards, I will need to be disease free for five years before I'll be eligible for long-term let's hope this is the only kind of cancer I ever get! :)

I also learned that even if a place (like SH's shop) is not in my healthcare network, they will still pay 100% of costs, it's just a higher "deductible" on that. For in-network places, after the first $2500 of co-payments, 100% is paid. For out-of-network places, it takes $5000 before 100% is paid. Sadly, this is gonna cost me a lot more than $5000 so it doesn't really matter. We're looking at a $2500 penalty (and even that should be tax-deductible) for using SH versus an in-network provider...I can live with that.

Elsewhere on the expense front, I really think I want 24-hour private nursing while I am in-patient and neutropenic (meaning no immune system). That won't be cheap, but I want somebody making sure all my medications are being given, that doctors are consulting each other to watch for side effects and to make sure the right anti-nausea and other meds are being given, to make sure people wash their hands before they come in and out of the room (if I'm asleep, I can't be telling people to do this), etc. With luck, I'll only need this for maybe 20 days or so over the course of treatment. That's going to be a LOT of money, but if I can cure this, it will be worth it.

Okay...that's a big, big update for one day. I'll post more as I know it. The next consult I have will be on Jan 21st with BD. I'm trying to reschedule SJ earlier since Feb 23rd is probably too late (KA thought it might be pushing it to wait 6 weeks...we'll see what BD has to say). We'll also have more on the progression of the disease at the end of the month after I spend a week in Little Rock with BB and his people. KA thinks BB will say I need immediately treatment as well. So putting it off for another full month might be too much.

Feb 16 looks like the first really ugly day for me. But I'm ready. I will overcome this thing.

Cancer picked the wrong guy to mess with!