Monday, November 30, 2009

Quick update...still here...

Several of you have been so kind as to let me know that you were interested in my progress, since even a chest cold can be a pretty spooky thing given a rebuilt immune system.

I'm not over it, but it hasn't worsened, really. I am on double Tamiflu for the next week or so, but otherwise steady as she goes. I spent most of the weekend doing nothing, just trying to get some rest. So basically, not a whole lot different that would be the case with a normal cold.

In the past, when I felt a cold coming on, I would take Airborne (which has been debunked, but hey, I'm all for placebo effect as long as it works...for colds, anynow, not for cancer!) and then if needed, I would take the usual over-the-counter stuff. TheraFlu and, if a cough was involved, Mucinex (the one with the TV commercials featuring the green blob in the wife-beater looking like Paulie from the Rocky movies).

I wouldn't want to spend all weekend in the company of either of them. But I digress...

Anyhow, at some point I will ask BB if I should just resume taking all the normal cold stuff when I get a cold. For now, I actually want to know exactly what symptoms I have and how they change over time. It's valuable information. That Tamiflu is also 100x stronger than anything over-the-counter, so it's a better option anyhow, although it doesn't contain anything for the symptoms, only for the root cause.

This also brings up another issue that is worth highlighting as pertains insurance. My company is pretty stingy on the Tamiflu as it doesn't accept the notion of using it prophylactically. They will only approve a certain amount for am immunocompromised person during a community outbreak. In the case of our current environment, H1N1 constitutes a community outbreak so I am allowed a batch of pills. However I now need to double-up. In short, I have to dig into my prophylactic stash to treat active illness. I am hoping that the insurance folks will grant another refill to acknowledge this situation -- I've placed the call and we'll see how that works out.

I'm back to the doctor tomorrow for the weekly roundup. If they are keeping to their new cadence, this will be the week that they run the more extensive tests. IgG will certainly be up in response to the cold. Should be interesting. Hopefully I will also have info from the mojo doctor as well!

Saturday, November 28, 2009

Taking the new immune system out for a spin...

Hello everyone! I hope that those of you in the States had a great Thanksgiving, and those of you everywhere are enjoying your weekend.

I, obviously, have much to be thankful for. Jill and I spend each Thanksgiving with two other families with whom we are very close and whom we are so fortunate to be friends with. This is, I think, our fifteenth year doing it. We've gotten better at cooking (the turkey is downright perfect now) and there are a lot more kids now than when we started!

I honestly don't recall too much about last year's Thanksgiving, but I suspect it was a little toned down. I suspect I was thankful, in a literal sense, that I had been diagnosed as early as I had, but there probably wasn't a lot of joy in the room. This year was a different story. I'm thankful -- with a renewed sense of awareness -- for my health. I'm thankful I was diagnosed early, that I had time for research, that my particular disease was highly responsive to therapy, that I made it through aggressive therapy more or less unscathed, and that I'm in complete remission. I'm thankful for my family and friends, for their support and love. And I am thankful to each of you that has followed my ups and downs and shared in my journey. I don't think you realize how important you have been to my fight. This blog has provided a quiet sense of purpose throughout and a means of focusing on something other than the mechanics of yet another trip to the infusion center. Thank you all, again, very much!

So...I have not had a cold since I recovered from the hospital spell back in March with the attendant pneumonia. A couple of false starts headed off by Tamiflu, but nothing that turned into anything more than a sore throat for a few hours, quickly remedied by the antiviral meds.

That ended yesterday.

I started noticing some chest congestion last night, and it is in full force now. Normally, I wouldn't give it a second thought. But I am on Immune System 3.0 here (actually probably several other revisions along the way) and thus there's a level of import associated with my response to this cold that I normally wouldn't encounter with any old case of the sniffles. How quickly will my intentionally-suppressed immune system mount a recovery? And as my immunoglobulin factory kicks in, will the monoclonal protein start being replicated again?

I can almost feel the Revlimid getting in the way of my immune system...and I can almost feel monoclonal IgG cackling and rubbing its hands together. If push comes to shove, I know the first is really happening, and the second isn't. And there's another shot of Velcade coming up in three days to make sure that's the case.

Will report back as things develop. We'll see how long it takes me to get rid of this...the wife was hit with it for about a week. I remember Kathy Giusti of the MMRF telling me that he rebuilt immune system resulted in her getting every cold that passed through her office. But others have told me that they very rarely get sick any longer. Like other aspects of this disease, it sounds like everybody's experience is different! It should be interesting, if a little nerve-wracking, to see how this plays out...

Tuesday, November 24, 2009

Blood counts good!

I love the honesty of this blog as I think it is one of its most valuable attributes, as I have said in the past.

And I have been willing to be very self-effacing, as needed, to retain this honesty. Like in the last post!

However, there's nothing saying I can't top off the blog with non-embarrassing posts to space it out. So here goes today's update. :)

After a week of recovery from Revlimid, I start cycle three tonight.

All the counts look good, with the exception of the mix of white blood cells. I have a lot of young cells, and not a lot of mature cells. This isn't a problem at all from a functionality standpoint. It's simply an abnormality that is easily explained by Velcade. What I described as the Logan's Run effect.

White count is at 6.6. Don't know how much of this is a response to the colds in my house, versus a normal recovery, but it is squarely in the normal range. I also have to say, TamiFlu may very well be the cure for the common cold. I've had three sore throats in the past two months. When that happens, I double up on TamiFlu one day, and return to daily doses the next day. In each case, by the next morning, the sore throat is gone.

Anyhow, white count is good. Platelets are at 136. Not robust, but in a decent range. They will probably continue to go up over the next few days, although the Revlimid will begin to depress them again. Not a problem -- they seem to bop around in the 100 to 150 range.

Hemoglobin is a very normal 14.8! Again, it will probably start to edge down as the Revlimid kicks in, but it never really falls below 13 and change, so I'm in normal mode. N.B., to those other MM travelers that follow along, when I talk about red blood counts I always use Hemoglobin (as opposed to actual red cell counts, hematocrit or other measures) since this is what Arkansas tracks to determine the need for a unit of blood (below 10 and BB is thinking about it, below 9 and you are on your back with a bag or two being put into you).

Then there's that kooky RDW figure...the one that measures variability in red blood cell width. This was always high during cancer therapy, and even a bit afterwards (it is also a hallmark of anemia). But it has been consistently healthy, now at 12.7, and pretty steady for the past two months. Good stuff!

All looks good. Happy Thanksgiving, friends!!

P.S. I promised I wouldn't politicize this blog, but the impending healthcare legislation is SO HORRIBLE that I have to urge you all to oppose it. It will not work as it is stated, it will definitively decrease the quality of care in this country, and for those of us with Myeloma (or those who are diagnosed from here on out) it may very well result in BB's protocol not being covered. There are good people that follow this blog in the UK, New Zealand, and elsewhere who are not allowed to receive Velcade because they are notionally responding (or could respond) to other therapy...even if that means partial response / stable disease. Medicare doesn't cover Velcade. BB's clinic covers people that are not covered by the government...and does so because the current system allows them to make enough money to do so.

We can address things like coverage for children under 18, and mandating that coverage cannot be denied for pre-existing conditions, without completely destroying the system that provides us with the best access to the best quality care in the world. There's a reason the vast majority of Myeloma research is done in the US!

Plus, consider this: when Medicare was launched, the government estimated 1990 costs would be $10 billion. Actually 1990 costs? TWO HUNDRED AND NINETY BILLION. If I was off by a factor of 29 in a critical estimate, I'd be fired. No such redress occurs in government.

Okay...soapbox mode off. I won't bring it up again! :) I am more than happy to discuss / debate this with any of you in a friendly fashion. However I would ask that if you want to do so, you do it via email to artisannvandyk at earthlink dot net, rather than in responses here, as I really don't want to turn this blog into a political forum...I just felt the need to vent on this issue since I've been thinking about it and since the five people in the doctor's office getting infused with me today were all opposed to it and scared to death about its implications for them.

Monday, November 23, 2009

Dr. Evil stole my mojo, continued

Hello folks! PG-13 rated post here.

I had a visit today with Dr. SS, a urologist, about the testosterone situation. Without belaboring things too much, I can report that I successfully avoided another digital rectal exam, and that I've now seen ultrasounds of my privates. Interesting.

Long story short:

* Lack of mojo is not good. How can I put this delicately...the factory is still making widgets, and if none of the widgets ever get packed up and shipped out of the warehouse, the warehouse can get clogged up pretty bad. Not good! Shipments need to occur with greater frequency.

* Dex is a culprit, as is Revlimid. Basically a double-whammy. I have a textbook case of lost mojo, in the words of Dr. SS.

* I have normal blood flow, good kidneys, bladder, etc. so there's nothing physiologically wrong with anything.

* I have a battery of blood tests tomorrow to check for different things, and assuming they are normal, I will be treated probably with a testosterone patch, rather than injections. Basically, Barry Bonds here I come. This should help with mojo, and also help arrest the muscle wasting effects of Dex as well.

More news as events merit. Happy Thanksgiving to you all!!

Tuesday, November 17, 2009

Good news from today's doctor visit, returning to work, and other stories

Hello folks!

First of all, thank you for the emails, comments and other communiques about my return to work. Day two is over now, and it's been great so far. Of course, frankly, if I wasn't basking in abundant good will from my other "cast members" (as we call them) on my first day back after being out sick for eight months, it would be a pretty bad harbinger. So I expected yesterday to be a really good day -- and it was. :) But I am very excited to be intellectually engaged in something other than hematology, and it feels great to be plugged back in. I got a nice note from our CEO, and everybody else has been warm and fantastic.

I had my infusion appointment and visit with Dr. GD today. I like GD a lot, and I appreciate that he is following BB's instructions to the letter, essentially, minus a little push back on lab frequency. But he is short, not to say taciturn. I feel rushed with him, and there is little effort to answer questions or provide labs, etc. Arkansas is much better about this. Fortunately, I know what to look for. He would have just said "everything looks good, you're doing great" and sped out of the room. But thankfully I was able to briefly flip through and see the all important note:


This, obviously, is


And just how awesome? Well, as the kids are saying, let me "drop some knowledge on you".

Here's the latest published data from Arkansas. The "tag line" at the top of the page speaks for itself.

Consider that nobody else believes it's even curable...and yet cure is now anticipated for the majority of low-risk patients!!!

Look at that red line. Over 90% of patients that achieve complete remission remain in complete remission more than four years out. I told this to to GD today and he shook his head and muttered "that's amazing" under his breath. Before he basically ran out of the room to see another patient, that is. :)

I am in complete remission. Not all low-risk patients achieve it, as you may recall. But about 60% do, and I'm in that group, which means I now have the highest degree of likelihood of long-term remission. And as we know, long-term remission equals cure in the Arkansas protocol.

I am sitting pretty on that red line, and I'm gonna stick with Velcade, Revlimid and Dex for as long as I need to. One thing I'll consider is that Revlimid is used out here by Dr. RV, one of the folks with whom I would have consulted early on but for the fact that I had already decided what to do, for as long as the patient can tolerate it. I might ask BB what he currently thinks is best for people. He uses more Velcade now than he used to do...and the results in that chart reflect less Velcade than what I will be on. So if anything, I hope to do even better. I am also mindful that I have the nasty subtype of the disease, which gives me a little less confidence than would otherwise be the case. I will ask BB if he wants to increase the Velcade by 30%, as he once mentioned, with this in mind. We want to see those bones heal up, too.

But basically, I'm optimistic that I'm cured. And I'm so thankful, again, for the early diagnosis, and the time to do research, which led me to BB and the belief that for the newly diagnosed, low-risk patient, there is simply no better alternative.

Now, as to the less important data from the doctor's meeting. It looks like platelets bounce around between 110 and 150 depending on where I am in the Revlimid cycle. White count bounces around between 4.0 and 6.0, which is a little low but that's okay. Red blood count bounces around between 13.5 and 14.5, which is again slightly on the low side but still good. All my blood chemistry is normal, except for phosphorus, which is a hair low. I asked the nurse if I should eat a road flare. She said probably not.

Every time I speak of how well I'm doing, I think about my friends with the disease -- both those I've met in Arkansas and elsewhere, and those I've met from around the world through this blog -- that have not fared as well. For these people, I once again offer my prayers and profound respect, and also the hope that regardless of where we all are in our treatment, there has never been more hope for Myeloma patients than there now is. Carfilzomib, Pomalidomide, and new trials offer exciting new therapies that have been shown to be effective where other treatments have failed, and which have fewer side effects than current therapy. Do not lose hope, people. Do not give in to this disease. I know it is easier said than done. But I also know that steeling yourself to be relentlessly positive in the face of this disease is the best ingredient you can bring to your treatment.

Love to you all,


Sunday, November 15, 2009

Reflections on the past year

It was a wonderful week in northern California, visiting family and friends and eating a lot of good food and getting those last few lazy days in before I return to less than 12 hours! :O

I was thinking of what to post to mark the one-year point, other than my brief observation on the actual date. I was speaking with a company that is organizing a patient outreach program for Takeda Oncology (formerly Millenium Pharmaceuticals), the manufacturer of Velcade. I was going to be part of this program but the schedule just didn't work out. I did, however, prepare a speech that I would have used were I asked to speak to patient, clinicians, etc. about Myeloma. And it occurs to me that this little speech covers a lot of ground in the same way that a full reflection on the last year terms of what I've learned, for example.

So without further ado, here it is:

My name is Nick, and I like to think that I used to have Multiple Myeloma.

As I stand here now, I feel pretty darn good. Of course I still take three types of anti-cancer medicine, plus supportive medicine for the side-effects of the cancer therapy, and there’s the issue of this port I’ve had surgically installed in the left side of my chest that is used to draw blood and administer IV medication every week. So I can’t say things are completely back to normal. But the chief inconvenience of Multiple Myeloma – death – is a lot more inconvenient than what I have to deal with. So who am I to complain, right?

Like most, I’ve known people through my life that have died from cancer, including my father. Along with everybody else born relatively early in the last century, he wasn’t aware of the dangers of smoking until he’d been a cigarette smoker for twenty years or more. He quit cigarettes about twenty years before he was diagnosed with cancer – even though he clung to these cheap and smelly Dutch cigars that he used to somehow enjoy. Nonetheless, when he was diagnosed, and when he died a few months later, I still associated his disease with a lifestyle choice. I’ve never been a smoker. I drink in moderation. I use sunscreen. I eat reasonably well, although I’m not one of those people that obsesses about the anti-cancer properties (or lack thereof) of every item in the grocery store. I figured I was making the right decisions.

Eventually, I came to know people that were diagnosed despite leading healthy lifestyles. George Carlin once joked that he was going to write a book called “eat right, exercise, and die anyway.” Prophetic words, I suppose. But even after meeting people who had surprise cancer diagnoses affect them, I still didn’t think it would be something that would happen to me. Of course we never do, right?

When I was diagnosed, I was a 40-year old executive with The Walt Disney Company, with a wife and two young children. I kept myself very busy at work, and with some hobbies including golfing (poorly, I should say) and performing in a band in my not-so-copious spare time. In retrospect, the stress of managing my job while trying to tour the country with this band is what I think tweaked my immune system and resulted in this disease. But I was feeling good – things were clicking along pretty well in my career and being sick – seriously sick – was the farthest thing from my mind.

I didn’t really have any symptoms that I recognized as such. One acronym that some in the medical community use is CRAB – elevated calcium, renal failure, anemia and bone problems. I certainly wasn’t aware that I had these things, if indeed I had them. The only thing I noticed was one day while golfing, my shoulder hurt. Enough so that I had to stop playing. I assumed that I had either pulled a muscle or that I was just starting to feel the impact of turning 40. I thought a trip to a masseuse or at worst an orthopedist and some physical therapy would be enough.

I should add that while my father didn’t pass along his predilection for nasty smelling Dutch cigars to me, he did pass along rotten genetics for cholesterol. For which, as it turns out, I’m extremely thankful. I’d run out of my medicine, a type of drug called a statin which I’d been taking for three years or so. Cholesterol is secreted and processed by the liver, and statins interfere with that chemical process. This is great for the heart, but can be bad for the liver – it’s a little like crop rotation for one’s organs! So as part of the care protocol with statins, I needed to get a blood test to check liver numbers every once in a while to ensure my liver isn’t too irritated. But I HATE having my blood drawn. So I avoided this appointment as long as I could. If you’d told me, frankly, that I’d be getting a disease that would necessitate daily blood draws for eight months, I’d probably have jumped out a tall window.

Anyhow, my primary care doctor told me there was no renewal of my statin prescription without blood work – I hadn’t done any in eighteen months. So I came in, had the blood drawn, and that was that. Or so I thought.

My primary care physician is an awesome doctor – totally overqualified to do a simple blood draw as he’s really an infectious disease specialist these days. And this is one of those things that people that carp about healthcare costs always say can be done by any old lab cheaper than by a doctor. Well fortunately, I went to an overqualified expensive doctor instead of a lab technician. And he noticed that my total protein was too high. He called me back in for another test – at the time he didn’t tell me what he suspected because he is VERY much an anti-alarmist. But when the protein came back high a second time, he told me it was probably one of two things. He said it could be a condition called MGUS, or it could be something, which he thought was very unlikely by the way, called Multiple Myeloma. He explained, very calmly, that this was a “malignancy of the blood.” That’s a little like saying a severed limb is a malignancy of the skin. But anyhow…

Long story short, he referred me to a hematologist, who told me how unlikely it was that it was Multiple Myeloma since I had no other symptoms, and who went on to say that Myeloma was no big deal. I have a very close friend who is a doctor, and in contrast to my primary care physician, my friend was panicked for me. He said people die of Myeloma within five years. I now know this is not the full story – the full story has a lot more hope. But I mentioned this five-year window to my hematologist and he laughed it off.

That was, until two days later, when my bone marrow biopsy came back with 70% plasma cells – meaning the disease was well advanced and it wouldn’t be long before I had other symptoms. All of a sudden, my hematologist was a lot less cavalier about the prognosis for a Myeloma patient than he’d been two days before, when he acted like my friend was crazy.

I’m thankful that this hematologist was very honest with me – he told me that there are a variety of treatment approaches, and he explained that I should seek the opinions of people across the spectrum, including people whose concept of treatment different pretty starkly from his own. He told me that because I was young, it meant my system wasn’t particularly good at fighting off this disease. He expected it would advance quickly, but he thought I might have six months before I needed to begin treatment. This gave me time to research the situation.

And to keep my sanity, I threw myself into researching it. I was going to manage my medical condition to the extent possible, and “fool” myself into thinking this was just like any other project. I learned everything I could about my disease – enough where I could probably pass myself off as a hematologist at a Myeloma conference. I found the prominent doctors from each school of thought, had four in-person consults, two other detailed phone consults, and had more scheduled when I decided that I’d learned what I needed to learn.

What I learned, ultimately, is something that few doctors really want to come out and say cleary. But I’ll synthesize it for you: at the fifty thousand foot level, the first choice you and your medical team need to make is whether or not you want to control the disease, or attempt to eradicate it. Your choice depends on a number of things, including your age at diagnosis and your general health. People are living longer and longer with this condition, and while we aren’t at the level of treating it like a chronic disease, it’s no longer the imminent death sentence it once was. If one is in one’s late 70s when one is diagnosed, there’s a reasonable chance of living long enough to die of something other than Myeloma. But at 40 years old, I wasn’t prepared to go that route.

At any rate, I did learn that it’s almost impossible to find two physicians that agree on precisely how to treat the disease. The only thing that they agree upon, almost universally, is to avoid looking at the Internet for Myeloma information. It’s all extremely bleak, because it is backward-looking in large part. Now I couldn’t completely force myself to avoid it, but I did take it with a grain of salt. I used the Internet to help me create a “decision tree” of treatment alternatives, and I used the first couple of consults to learn about the disease, and the rest of them to help hone my decision tree.

Ultimately, my decision was to go for the most aggressive treatment possible with the intent of eradicating the disease. Many people feel it’s not possible to do that. My doctor disagrees – violently, actually – with those who say it can’t be done. I’m told there are raucous exchanges, as these things go, at hematology conferences on this topic. And knowing my doctor as I do, I’m sure he gives as good as he gets.

I started treatment none too soon. I went from Stage I disease at diagnosis to the point where I had four broken vertebrae in my back, early stage renal failure, high calcium numbers and early signs of anemia. The CRAB showed up, all right, and it was beating me up pretty bad!

I spent about six months in active therapy, which included four courses of chemotherapy with multiple agents, two consecutive stem cell transplants, and additional therapy along the way. I achieved what my doctor calls “very profound complete remission” in the last month of this primary therapy. Of course the trick is staying in remission – and for that I’m on this three-drug cocktail for the next three years, with the goal of making my system so unfriendly for Myeloma that the last of the little buggers gives up the ghost.

So right now, I’m exactly where I hoped to be. I achieved the best outcome from therapy that can be measured at this point, and the side effects of treatment weren’t really that big a deal. I mean I suppose I could complain about the exhaustion, the hair loss, and whathaveyou but part of what I brought to this battle was a “damn the torpedoes, full speed ahead” positivity. Every time I did something that hurt or made me feel sick, I envisioned that it was killing a hell of a lot more cancer cells than it was healthy ones. I could take it better than the cancer could. So every injection was a “take that, cancer!” moment. I didn’t stress about every little thing that could go wrong, every little side effect, etc. I had exhaustively researched the potential serious impacts of the medications I would be receiving – and I questioned my doctor (and others) very directly about these potential problems. But once those questions were answered, I didn’t really look back. And I never really wavered in this approach, other than a brief period of concern when I hadn’t achieved complete remission after my second transplant. But again, it was part of the program – I was still seeing the impact of the first transplant long after my second transplant was done.

Now, my life is fundamentally the same as it was before I got sick, with the exception of these weekly doctor’s visits and the pills I need to take. But again, I don’t dwell on that. It’s simply something that has to be done. I didn’t ask for this diagnosis, and I’ve had to make some concessions to the disease, but treating these things as anything other than matter-of-fact things that just have to be dealt with, in my opinion, yields too much to the cancer. I got sick. Very sick. I chose a path to get better, and that path involves some things that healthy people don’t have to do. Oh well. It is what it is. I’m not going to let it dictate my life.

Consequently, I don’t feel like I’m living with Multiple Myeloma. I’m living without it, and taking steps to hopefully keep it away forever.

And here, I must note, that I’m one of the lucky ones. There are 15% of patients who don’t respond well to any kind of current therapy, and there are more who are allergic to one or more of the medications that I am on to be in maintenance. There are others who didn’t have the good fortune to be diagnosed as I did – most people learn they have this disease when they go to the ER with a sudden broken bone. And the on-staff hematologist probably starts them on whatever protocol they believe is the right thing to do, even though they may not even be a Myeloma specialist. And if they’re not lucky, these patients are treated sub-optimally.

There are a few things from my experience, though, that I think can serve just about anybody facing this diagnosis. So if I can leave you with a few key learnings from my own situation, I’d summarize them as follows.

1. This is an individual disease. There are many subtypes, and everybody’s physiology is different depending on the disease. Just as everybody’s situation is different depending on how and when they are diagnosed, what stage of their life they are in, how healthy they may be, and ultimately whether they want to attempt to control the disease or kill it. There is a right answer for me, but the right answer for you may be different. Recognize that you are your own best advocate, and take ownership of your disease. Advice is great, but ultimately the choice is yours.

2. Learn everything you can. Now we’re all wired differently, and not everybody necessarily has my tolerance for data or my control issues that manifested in me wanting to know every last detail. But I urge you to learn as much as you can, about the disease, about the treatment alternatives, about your doctor and his or her approach, etc.

3. Once you’re educated, pick a doctor – who MUST specialize in Myeloma -- and develop a personal relationship with him or her. Myeloma specialists are busy, and in demand. It’s also not unheard of for some to have healthy egos – and frankly, the accomplished ones deserve it. You want access to these doctors, and you want them to be emotionally invested in your well-being, to the extent possible. Some doctor’s personalities are challenging, and some are more receptive to the notion of developing a richer relationship with a patient than others. But in my case, for example, I consider my doctor and his wife to be family friends now.

4. Once you’ve picked your doctor, TRUST your doctor. As I said, there’s no one right answer. But you’ll drive yourself crazy if you second-guess everything. Do your research up-front, make your decision, and stick with the program. This is easy to say and hard to do – I faltered, but I only did it once, and now I realize I was a little silly to do so.

5. Lastly, and most importantly, be patient, be persistent, and be positive. Treatment is lengthy and all the procedures, tests, blood work, lab visits and especially waiting around can be very, very trying at times. But at the same time, the only thing you can really do as a patient in terms of influencing outcome is to be resolutely positive. Don’t let anything get in the way of your focus on battling this disease. You are bringing all your energy to it. Waiting in a doctor’s office, or enduring yet another two-hour MRI with all that banging (I’ve done seven of these so far), is just something that you have to do. Again, you didn’t ask for this diagnosis, but you’ll get farther if you just accept that your treatment is something you will simply do. Put your mind to it and don’t let the little demons of doubt get in the way. Do not yield to the disease. Your energy is critical to your well-being and as I said, it’s the most important thing you can bring to the fight. Get suited up – it’s time to get in the game with everything you’ve got.

So that’s it, really: learn as much as you can, take control of your disease, pick your team with care and make sure you are a person and not just a statistic to them, invest them with your trust and confidence, and be positive. Regardless of your treatment choice, these things will make a difference for the better in how you get through your diagnosis and therapy.

There is more hope than ever before for the newly diagnosed Myeloma patient. Huge strides have been made in the past five years, and new therapies continue to be developed. Being cured, it is said, really means growing old and dying of something else. That kind takes the “cool factor” out of it. But it’s the best outcome, nonetheless. And I hope that each of you find a way to reach it.

Friday, November 13, 2009

Happy anniversary!

Today is the one year anniversary of my diagnosis.

It's hard to believe so much has happened...diagnosis, second opinion, third opinion, research, fourth opinion, three more phone calls, finding patients who had gone through BB's protocol, conversations with them, tests tests and more tests...and of course six months of intensive treatment leading to complete remission...

Along the way, many new friends made, and of course this blog which has been so fulfilling for me for a number of reasons...

Throughout it all, the support of my family and friends, including all of you who are reading this.

It's a testament to the success of my treatment that I'm about to go out to dinner with friends this evening rather than dwell on this anniversary...I had wanted to put together a lengthy post but there will be time for that tomorrow. I did want to mark the event, though, and I'll come back and put together some slightly more coherent thoughts on it soon.

All that said, hope you are enjoying your weekends!

Nick, one year from diagnosis, with hair restored. :)

Saturday, November 7, 2009

Migraines, nose hair and a new standard for complete remission?

Hello folks. Been a few days so I thought I'd post an update.

I went yesterday to get my hair cut, for the first time since March when my head got shaved in the hospital. Actually, for those who don't recall (or maybe I didn't post it), back in March, I had it cropped pretty short. I was in the hospital because of the abdominal issues and broken back, and BB came by the room during rounds. He said to Jill "you better get this guy's head shaved before he looks like a homeless person" and pulled a clump of my hair out! :) All part of his charm. :)

Anyhow, I'm glad to be back among the haired. The hair is a little lighter than it was before -- it almost has a "dusty" quality to it that I'm not crazy about. It's also more fine -- not as thick as it was before. But in the grand scheme, these are tiny little things. My hair guy made a good point -- it's not just that the cells were killed by the chemo, it's that the hair contains whatever drugs were pumped into me (albeit in microscopic qualities). That's why they can test drug use in hair for seven years or whatever it might be. So it's going to take a while for the hair to get back to where it was. That's fine -- it's not too far off.

One of the nice things about where I get my hair cut is they give you an amazing scalp massage while washing your hair before the cut. However yesterday I had an over-exuberant washer and really did a number on my neck. At the time, I thought it was a "good hurt" that would relax the muscles but I have a mind-splitting migraine that I got last night. At first, I noticed my vision was blurring -- almost tunnel-vision-like -- and I was worried that it was Velcade killing eye cells or something dire! Then I got the headache and realized the two are probably related. Here's hoping it goes away soon -- I very, very rarely get headaches like this. Maybe three or four times in my life. So I'll be monitoring it closely.

Concomitantly with hair on my head, those little facial hairs we don't think about -- eyelashes, nose-hair, etc. -- have come back. I never completely lost my eyelashes, but they did thin. I did lose my nose hair. One might think this isn't worthy of commemorating on a blog, but let me tell you, you don't realize how much sneezing you do when you don't have anything to keep dust out of your nose. I'm not talking about tumbleweeds growing in your nostrils -- I'm talking about very fine, small hairs that you don't really see (unless you are staring through a magnifying glass at your friend's nosehairs, which introduces a new set of questions). Suffice to say, I'm not sneezing as much and that's good. I had lost the ability to stifle a sneeze, actually, and I was wondering how that was going to play out in a big meeting if I all of a sudden let a huge sneeze rip out of nowhere. Thankfully, this seems to be a non-issue now.

Now, to the medical stuff.

Thanks to our friend LP, whose husband is being treated by BB now after having been treated elsewhere initially (and who is doing very well, by the way), I watched a few old presentations by BB and other doctors at various international conferences on Myeloma. It is funny to watch the clash of styles -- BB is evidently notorious based on how gingerly the other doctors tiptoed around, but he was very gracious in his comments in these clips.

At any rate, this is a couple of years old but one of the points BB made is that complete remission under immunofixation is the first step, but that the bone marrow microenvironment probably houses the myeloma stem cells that don't secrete protein but which are still there, whether dormant or active. It is for this reason that BB wants to see my bone lesions heal -- if they are gone, that's one less place for the Myeloma to hang out, waiting to return. Velcade is very good at destroying Myeloma cells in the bone marrow microenvironment, so I'm glad I'm on that. But the bones do take time to heal -- months or even years. Hopefully, it's the former in my case. We'll get a snapshot in a couple of months. But this is what BB calls "MRI CR" which means no osteolytic lesions in addition to immunofixation negative status. This is now what we're shooting for.

Meanwhile, going out of town for a few days next week to enjoy the last few days before (drumroll) I RETURN TO WORK a week from Monday. Hard to believe so much has happened in under a year -- it was right around one year ago today that my primary care doctor called to tell me that I had an unusual protein in my

Have a good weekend everybody.

Wednesday, November 4, 2009

Clarifications on the previous post

I received a comment with some good questions about the previous post from the husband of a patient battling MM, and wanted to elaborate a bit on the points I made. Please bear in mind, I am a patient, albeit an educated one, but I am not a hematoloogist or medicial clinician, so take these comments as any more definitive than an interesting jumping off point for discussing them with qualified professionals to help you form your opinion.

So, to the questions:

Question one: [In comment number one from the previous entry] you are comparing a low risk myeloma patient group receiving TT3 with the total myeloma patient group. Are there any clinical trials with low risk myeloma patient groups receiving some of the other treatment programs to compare with?

Answer: I was talking discussing this with my wife this morning (without realizing you had asked) under the heading of "why isn't everybody doing this yet." I am sure the data is out there, and eventually BB or others will probably show it to prove more definitively that his program works. He has gene array information from the people that get tested there initially and choose to go would be a matter of tracking these people to see how they fare from other treatment, and then separating those out into low versus high risk groups. Right now, on a blended basis, BB believes he can cure 74% of newly-diagnosed patients with the current protocols. The highest official figure I have heard from anybody else (with the possible exception of BB's former colleague in Utah) is 0%. That's good enough for me. Until I hear another doctor, with data to support his contention, that he can cure, say, 30% of his patients that are newly diagnosed, there's not really anything to compare to. Other people don't believe BB is able to really achieve these results. Total Therapy's results have really only been around for 2-3 years. Eventually, one hopes they will catch on.

Question two: I am not sure what number 2 is saying. I think it means the average health of the general population is pretty poor which is not surprising. You are saying that the low risk myeloma patients that have TT3 treatment will outlive the average population, amazing. I think this says more about the health of our general population than this myeloma treatment method.

Answer: I don't disagree with you that people should take better care of their health. Bear in mind, MM patients in BB's clinic are not told to stop drinking any alcohol, become a vegan, or anything like that. He counsels people to remain in good physical shape, as any physician would, because obesity is a problem for EVERYTHING.

However, since it originally took much longer for previous regimes of Total Therapy to surpass the general population, it's not really a function of otherwise healthy people not taking care of themselves. I mean that might explain some of it, but the fact that successive treatment of Total Therapy 2 or 3 demonstrate improvements while the same general population is there seems to indicate that general population health doesn't matter.

Here's the graph:

The horizontal line at 1.0 is the expected survival of the general population. You can see in Total Therapy 1, lower survival until 15 years or so. But somebody who went through Total Therapy 1 and lived for 15 years actually had a higher chance of being alive than somebody who didn't have myeloma. This is a long-term view, to be sure. But look at Total Therapy 3 -- if you make it five years (and recall, 90% of low-risk TT3 patients are in complete remission after five years at this point) you are in line with the general population, and based on the experience of both TT1 and TT2 should be superior (although the data doesn't exist yet as TT3 is only five years old).

Question 3: In number 3 I am not sure how 5 years of statistics can prove something beyond 5 years. If you live 7 years beyond start of treatment and die of another cause is that a cure? But, you would need more than 5 years of statistics. I assume the 5 years may be the collection period and it includes patients with more than 5 years of data. Do you know what percentage would be for one of the other popular treatment methods with low risk myeloma patients?

I'll answer in several parts. Without going into too much detail, if you have a trend of information for five years and it correlates with other variables, you can perform a statistical analysis called a regression that allows you to extrapolate additional information over time. Taking a very, very simple example, if you knew that 2 years ago your mortgage payment was $1,000 a month, and a year ago it was $950 a month, and this year it is $900 a month, you could accurately predict that in two years it would be $800 a month. Obviously, the Myeloma data is much more complicated than this, but the same statistical tools work with it.

If you live 7 years beyond treatment and die of another cause, in BB's data, you are counted as a fatality. Thus, to be a survivor, you have to have survived everything. That makes these statistics all the more impressive.

Total Therapy 3 was initiated five years ago, and thus there are only five years of data. There are much longer data sets for Total Therapy 1 and 2 -- the survival curves show a similar plateau after a number of years -- i.e. if you survive that long, you're probably cure. Unfortunately, in Total Therapy 1 and 2, the cure rates weren't high enough. But Total Therapy 3 -- which added Velcade, Revlimid and some other changes in therapy cadence -- has been remarkable.

This graph shows both low and high risk myeloma patients. The gold standard chart is event-free survival, which shows that after five years out, close to 80% of all TT3 folks are still alive. Compare with, over time, the survival rates of TT1 (around 25% at five years, TT2 without thalidomide (around 40%), TT2 with thalidomide (around 60%), etc. You can see the shape of the curves are relatively predictable. They key is where that plateau forms -- plateau meaning that beyond that point, if you haven't had recurrent myeloma, it won't be coming back. BB currently believes this is around 72 months from starting treatment.

For low risk disease, the data is even better.

As for the percentage survival rate for other types of therapy, nobody keeps statistics because nobody else believes the disease is curable. I was flat out told by my first hematologist, who did ultimately suggest I check out Arkansas, that he did not believe transplant even prolonged life, much less cured the disease. He is still an advocate of a transplant only because that means you can go off all therapy -- until it comes back. So they don't bother tracking this. I only know this: while the data looks back five years, so doesn't reflect the full benefit of Velcade, the American Cancer Society published last year that five year survival is 34%. Some of those people get poor care, but some also get Total Therapy. So to interpolate from that, overall survival from other methods has to be a hell of a lot lower than Total Therapy. New drugs, such as Carfilzomib and Pomalidomide, may change the game when they come out in a few years but nobody is talking about them like a cure.

Question: In number 4 are you saying the average age at diagnosis of low risk myeloma patients receiving TT3 are 71 years old. I thought it was the young and healthy myeloma patient recommended for this treatment method.

This data comes from different places. I recall hearing that the median (not to say the average) age at diagnosis of Myeloma overall was 71, however I suspect this is coming down into the 60s as more and more young people are getting the disease. BB will transplant people older than 71 and has been doing this for some time. It is another area of disagreement between him and other doctors. Here, I tend to be political correct and shy away from strongly suggesting that an older person dive into this program because (a) they might be sick from something else, (b) the treatment is not a lot of fun, and (c) there is an increased treatment-related mortality from treatment as age advances -- perhaps 3% or so. This is not trivial, but compare that against 70% mortality from the disease itself over a five year timeframe and it starts to come into focus. It's an individual choice, of course. In the case of your wife, I would probably at least get a second opinion from a myeloma specialist (if not BB himself) to discuss transplant. The woman I first consulted about Total Therapy was a patient, now cured, who was in her late 50s when she received treatment and was transplanted despite the fact that she had lupus. So he is more aggressive in transplantation than are most places.

I hope these answers are useful to you, and to your wife, as you navigate your own way through your battle. There is more hope than ever for Myeloma patients, whether it is through the Arkansas approach or through the variety of new and effective drugs that have come on the market in the last five years, and which are continuing to be developed. I hope that you have many long healthy and happy years ahead of you both.

Tuesday, November 3, 2009

Quick blood results, and HURRAY FOR TOTAL THERAPY!

Very quick update, as I've been busy with a wonderful visit from my brother Pete who was kind enough to visit me in Arkansas during far more dire times. It's great to spend time with him while healthy!

At any rate: quick and uneventful visit to the doctor's today. Counts are good! White count is 5.1, hemoglobin 13.9, platelets 140. Solid in all respects, and in the event of the WBC and platelets, a tick up. Hemoglobin can be reduced due to water retention from the dex, which I took this morning, so I'm not concerned about that too much.

No news on protein or other stuff...probably not for another two weeks.

Now...I know we have had a bit of back-and-forth on Total Therapy on this and other blogs recently. I want to restate my beliefs very clearly:

1. For newly-diagnosed patients that have not undergone other treatment, and who are young and healthy enough to withstand it (i.e. 40 and healthy = a good candidate, 78 and sick = not a good candidate), this program is the right choice. Clearly, as I'm about to explain.

2. 15% or so of patients have high-risk disease which is not as responsive to Total Therapy as the other 85%; and some people are allergic to one of the three long-term agents (Velcade, Revlimid and Dex) that are used over a period of years as part of the TT protocol, so it is not for everybody -- just for newly-diagnosed young patients that are low-risk.

3. For folks that have been treated elsewhere, or who have high-risk disease, there is still hope from new treatments and new research. Total Therapy is not the answer for everybody.

Now..having said that, let me just cite a few statistics from the recent briefing I received from Arkansas.

1. NINETY PERCENT of low-risk patients in Total Therapy 3 REMAIN IN COMPLETE REMISSION AT FIVE YEARS. Compare this with American Cancer Society statistics stating that five year survival is 34%.

2. After five years post-diagnosis, the likelihood that a random person in Total Therapy 3 is still alive is HIGHER THAN THE AVERAGE FOR A US CITIZEN OF THE SAME AGE.

3. Statistics being built over five years indicate that SEVENTY FOUR PERCENT OF LOW-RISK PATIENTS UNDER TOTAL THERAPY THREE WILL BE CURED OF THE DISEASE. Compare with other programs that still claim it is incurable!!!

4. The median survival rate of patients under Total Therapy 3 is projected (based on statistics) to be FIFTEEN YEARS. The median age at diagnosis is 71. Do the math: people are being cured and dying of something else!

5. Ultimately, these and other data allow Arkansas to publish the following statemenst: "Cure is anticipated for the majority of genomically defined low-risk myeloma." And: "The newly diagnosed multiple myeloma patient can expect to live more than 10 years." Where else in the world would this statement be true?

I reiterate: I will beat this disease. Any others out there reading this, if you are newly-diagnosed, without drug-resistant disease, and in good health: go to Arkansas. Go there. Get Total Therapy. Keep a positive attitude. And be thankful that you were diagnosed early enough, and in a position, to receive this type of treatment. We are unlucky to have this diagnosis, but we still only represent about a third of patients seen there. I've met, and become friends with, a great many good people who were not so lucky...some of whom are no longer with us, some of whom are resilient and upbeat in the face of their disease. BB is a scientific I will save my prayers for those that aren't able to receive the full benefit of BB's program. The rest of you: get there!