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You Are In Charge

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Published: Mar 30, 2014 5:14 pm

I am going to tell you something you have probably heard before, but which you may not have fully internalized.

You are in charge of your disease.

Absent mental defect or court order, you simply cannot delegate de­ci­sions about your care to anyone else; not a medical professional, not a spouse, not a friend, not a parent.

If you are going to live with multiple myeloma, you have to own the dis­ease.  You must educate yourself about it, and you have to make deci­sions about your care that, while either right or wrong in the moment, you will not regret later in life.

To illustrate what I mean, I’m going to share an example from my own experience, with the advantage of 20/20 hindsight.

In the autumn of 2012 I had just completed six cycles of induction therapy with Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron) (RVD). I had reached a point where I had to decide whether I wanted to proceed with the stem cell trans­plant that was scheduled for November 2012.

My M-spike (monoclonal protein) level had dropped with the RVD treatment from 8.5 at diagnosis in May of 2012 (I was 60 years old at the time) to 0.4 in October 2012. My kidney function had improved from nearly-on-dialysis to normal.

Everyone around me – medical professionals, family, and friends – was urging me to go ahead with the stem cell trans­plant right away.  I didn’t want to.  Frankly, I was afraid of the stem cell trans­plant.  I also had gathered enough information to know (or thought I knew) that, without achieving a complete response, a trans­plant can be an iffy proposition, even with the very good partial response that I had achieved.

But I bowed to the pressure.  My “tough guy” pride in overcoming fear, and my rationalization that I was the one with chemo brain (everyone else was thinking straight), led me to go ahead with the trans­plant. They couldn’t all be wrong, could they?

In the end, I mostly relied on an at-the-time recently published study that said that six cycles of RVD was the “standard of care” prior to stem cell trans­plan­ta­tion.  Guess who conducted that study?  A trans­plant doctor. Not to disparage her, but looking back on it, I now realize, in a way that I didn’t then, that the study was clin­i­cal research – the conclusion was the result of an analysis of aggregates and averages.

Yet one of the very first things one learns about multiple myeloma is that it is an intensely individual dis­ease.  So who’s to say that any individual should stop at six (or four, or seven) cycles of initial RVD prior to trans­plant?  If one continues to respond to the initial therapy after diagnosis, why not continue it in pursuit of a com­plete response and only then seal the deal with a stem cell trans­plant?

Now, for the hindsight 20/20 part: After six months of pure hell, the trans­plant did nothing to change my M-spike. Going in, my M-spike was 0.4. One month afterward, it was 0.5.  At my 100-day checkup, it was 0.7. One month after that, it was at 0.9, and I went back on RVD.

So, in the end, I sacrificed a Thanksgiving, a Christmas, and a Florida snowbird winter to prepare for and recover from a trans­plant which, as best I can tell, didn’t really do anything for me.

The doctors will say, “Well, where would you be had you not done the trans­plant?” But somehow, just lis­ten­ing to my body and poring over the blood test results over time, I’m becoming more and more convinced that I should have exhausted drug therapy prior to the trans­plant in an effort to get to a complete response before submitting myself to this incredibly invasive procedure.

Make no mistake, stem cell trans­planta­tion is a living hell. I thought the Army had been tough, both mentally and physically. Yet nothing I had done earlier in life prepared me for the agony of not being able to even swallow water.  I have never been so low on Maslow’s Hierarchy.  Nothing prepared me for the shin­gles that were brought on because the trans­plant left my immune system compromised.  Nothing prepared me for the acceleration of chemo brain that the trans­plant brought on.  Do not minimize chemo brain — it is real, and it is frightening.

After five cycles of RVD post trans­plant, my M-spike had once again dropped from 0.9 to 0.5, but it stagnated there. So I tried Kyprolis (carfilzomib), along with Revlimid and dex. While one cycle did bring me down to 0.4, I developed liver problems that the doctors attributed to the Kyprolis.

So I’ve now switched to Pomalyst (pomalidomide, Imnovid) plus dex.  Results are yet to be seen.

In the meantime, I continue to wonder if RVD could have been even more effective had I kept taking it for more than six cycles prior to the trans­plant, instead of having the trans­plant immediately after six cycles and then staying off RVD for five months.  Could I have saved Kyprolis and Pomalyst for later years?

To use a tortured boxing analogy, it feels to me like I had my myeloma on the canvas in the third round and was about to go for a knockout. Instead, I gave it a breather while I got out of the ring and, for two rounds, took a horrible beating from a much bigger sumo wrestler.  Then, I got back in the ring with myeloma, but by then I was weakened and it had time to recover.

Overall, I eventually had 11 cycles of RVD, pre- and post-trans­plant. It was effective in lowering my M-spike levels through at least nine of them.  I now just wish I had had them all prior to the trans­plant.  I tolerated RVD relatively well, except for neuropathy in my feet. But, by working with my doctors to adjust the Velcade dosage, the neuropathy was minimized, and it is almost gone now that I have been completely off Velcade for four months or so.

I have now exhausted all the traditional drug therapy “bullets in the chamber.” RVD has stopped working.  Kyprolis apparently isn’t an option for me due to what it does to my liver, and I have yet to see what Pomalyst will do for me and for how long.  If Pomalyst fails as well, I will have to go the clinical trial route and perhaps try a monoclonal antibody.

I suppose I could have another trans­plant, since I collected enough stem cells prior to the first one for another. But what’s to say that those cells, which were collected when my M-spike was at 0.4, will do anything better for me than the original set did — especially with my persisting M-spike levels?  And do I really want to sacrifice yet another six months of what life I have left on the off chance of it working?

Make no mistake – I am not here to blindly denounce stem cell trans­plants of whatever kind.  They can have a legitimate place in our treatment.

It is just that I now keep asking myself why there was such a hurry to do a trans­plant.  I was “only” 60 years old at diagnosis. Yes, health can fail as time passes, but, other than the myeloma, the now-resolved shingles, and the scary kidney condition, I was (and am now) in relatively good health. Why did I give up six of the best remaining months of my life to go through that hell so soon?

Now, especially late at night, when the dex is keeping me up and the house is quiet, I keep thinking, over and over, that my best chance of reaching a complete response right after diagnosis was RVD.  And that, if RVD was working – meaning that M-spike levels were going down, down, down (and not stagnating) – why not just let it continue to work before submitting myself to a trans­plant?

After all, we’re not talking about years here, but months.  Eventually, the RVD will either get you to a complete response, or you will see it quit working with stagnated M-spike numbers. That’s when you know it’s taken you as far as it can.

My bottom line for you is the following: You make the decisions about your life. There is never going to be another time in your life when it will be more appropriate for you to be completely selfish and make these decisions completely on your own after gathering all the information you can from as many sources as you can.  And only you can judge what information and opinions are, or are not, trustworthy. Don’t worry about offending anyone – no matter who they are – who is telling you what to do if you decide to do something different.

If your spouse wants to control the decision, divorce him or her.  If your parents tell you that they are taking you out of the will if you don’t follow their advice, tell them you are going to die before they do anyway and to stuff it.  If the trans­plant doctor tells you it is urgent, just remember that they do trans­plants for a living and that they are all as human as anyone else – if all one has is a hammer, everything looks like a nail.  Be true to yourself.

I wasn’t. And I’m paying for it today.  I can’t look in the mirror and say I did everything I could to exhaust every option I had prior to stem cell trans­planta­tion.  And I wish to all that is holy today that I had.

A footnote:  This essay was originally posted, in minorly different form, to The Myeloma Beacon as a com­ment to one of Steve Mohr’s excellent columns about his experience with multiple myeloma.   I highly rec­om­mend you follow the well-written chronicle of his journey.

This is a guest patient opinion article by Paul Jakubowski.  Paul was diagnosed with multiple myeloma in May 2012 at the age of 60.  He is currently in very good partial remission and continues to receive main­te­nance treatment.  He and his wife split time between homes in Nebraska and Florida, which demands some unique approaches to ongoing care.

If you are interested in contributing an article for publication in the opinion section of The Myeloma Beacon, guidelines can be requested by emailing.

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26 Comments »

  • Ron Harvot said:

    Paul,

    I agree with the your statement that you are in control. However, we are not experts and do have to rely on the advice and counsel of our doctors. They were telling you to do the transplant, without a second opinion you had nothing really to fight back with. That is why, when a big decision like a transplant is facing any of us, it is advisable to get the second opinion from a MM specialist.

    With respect to firing all the bullets, there are a lot of them left in the gun. I would recommend you read Pat Killingworth’s blog. Pat has been battling MM for years and like you, and a failed transplant. He has had 3 relapses but is still fighting. There are many older treatments that can be combined with Revlimid and Velcade that have proven to work with refractory patients.

    Also many people live good quality lives for years with a low level of MM. A VGPR can be held for years with maintenance level treatment and a CR does not guarantee that you will not relapse. Almost all will eventually relapse. But relapse is just round one in the multi round fight.

    Good luck and keep fighting!!

    Ron

  • Vickie, wife of Frank with mm said:

    Paul, if ever there was an excellent patient article to read, it is yours. This is nothing short of a “myeloma masterpiece,” in my humble opinion. You have hit on so many truths, it is amazing. Granted, you went through hell and back, and your honesty is to be appreciated. I am sorry for you that it was an arduous journey, but, as the wife of a myeloma patient (loved the comment about a spouse pushing their own agenda), your message is crystal clear to me, and extremely helpful.

    My husband (age 70) was not wanting to go the stem cell route, for all of the reasons you have cited and experienced. Just as you have stated, this disease IS very individualized, and the results to different treatments are all over the board. Thanks for taking the time to write what in my opinion is a truthful realization of very much taking charge and being an advocate for one’s own destiny.

    Continued success to you Paul!

    Vickie, wife of Frank with mm

  • Andrew said:

    I believe very strongly in the thesis of this essay. In my case it led to a transplant after six cycles of VRD. I made this decision after getting two opinions which largely conflicted with each other, but which collectively provided me with the information the I thought I needed to make an informed decision. The transplant was only two months ago, so the jury is still out on its effectiveness. But I do not regret going through with it.

    Post transplant I decided to opt for a less aggressive maintenance regime than the one recommended by my doctor. I did my own research, asked the opinion of a second MM specialist and made my decision. I view this choice as the best one for me overall. And it is hardly irreversible.

    In my mind this just demonstrates Paul’s point: you must take charge of your treatment.

  • Eric said:

    Paul

    Thanks for the very very insightful article. I was faced with the same choice as yourself. I decided not to go the stem cell transplant route because of the lengthy, severe impact on quality of life during and after the transplant. My MM specialist and myself looked at the response data with the newer MM drugs — mean time to relapse, % survival etc. Being an engineer and life long statistician, I analyzed the data for Velcade, Revlimid, thalidomide and other drugs where trial data had been published.

    It was my opinion that the drug route was statistically as good or better than the stem cell transplant route, which usually required maintenance treatment with the novel drugs post transplant. So far I feel I made the right choice, having avoided kidney and liver damage, and my quality of life has been excellent. I still do everything I used to do, albeit sometimes slower, and with somewhat less energy.

    The novel drugs, in my opinion, offer the MM patient a high quality of life and equal longevity to that of stem cell transplants. However, this was my choice, and each MM veteran must make the choice for themselves. Once the choice is made, embrace it and do all you can to support it it with nutrition, exercise, and spirituality.

  • Paul Jorgensen said:

    I would agree with the idea of the opinion. What I haven’t heard here is the idea of what is your body telling you. I believe that we should listen to how we are feeling. But the other ideas are also true. Read everything you can. Talk to more than one expert. Do your own analysis. Focus on diet exercise and our own mental health.

    Although it may sound strange, I think the disease has been a blessing to me in some ways. It has allowed me to stop the rushing from one task to another and to focus on the blessings I have had in my life — the many wonderful experiences I have had, and the many wonderful people I have know in my life. It has given me a joy and sense of spirituality that I have not known before.

    Enjoy your time and your life and make the decision that feels right for you.

    Paul

  • Ken Guy said:

    In July 2000 I was diagnosed with MM. The prognosis was 4 to 5 years. As I approach the 14th anniversary of that diagnosis, I consider myself extremely fortunate. I agree with the saying ‘knowledge is power’. I visited various websites about MM, joined The Myeloma Foundation in California, generally learning all about ‘the beast’. Chemo was attempted but failed to plateau my figures, so by late 2001 I went through apheresis, during which just under 2 million stem cells were collected and stored at -150c.

    In February 2003 I entered Brisbane’s Wesley hospital on my 65th birthday and the autologous transplant began. It was no picnic! But it gave me five years of steady figures until the disease started to take off again in late 2008. On January 2nd 2009 my specialist arranged access to Revlimid (25mg) over 21 days per month, and I’ve just entered my fifth year on Revlimid and dexamethasone.

    My MM figure move from 4 to 6 and back again on a monthly basis. Also each month I receive an infusion of the bone strengthener Aredia. I’m now 76 and living with my wife Grace in an Over 50s Resort at Maleny in Queensland’s Sunshine Coast Hinterland. I’m the secretary of the Home Owners Committee and a committee member of the Maleny Probus Club. Grace is in charge of the Social Club at our Resort, so we are doing well! The Revlimid is controlling the MM and I’m a happy chappy.

    I know the disease will get me in the end, but, for now … I’m enjoying life.

  • cindyl said:

    Excellent article. I actually have often had to make the decision on my husband’s treatment — for both cardiac issues, and now for his multiple myeloma. There were many times he was not mentally capable of doing that for himself.

    Now that things have improved for him mentally, I prefer to sit back and be quiet while he absorbs the information from the doctors, and asks his questions. Only when I am quiet can he get to the things that really concern him.

    We have a great level of trust between us, so I always know that, once he’s had a chance to digest information and express his concerns, he will always ask for my input. It is so much better this way. Making such major decisions for someone else is difficult and frightening, even when its completely necessary.

  • Mark Juel said:

    Paul:

    A very good article. I was in the same position and I took the other route. I was diagnosed with light chain myeloma in 2009. I was 54 at the time. I went through the Revlimid/dexamethasone therapy and 2010 I went to the City of Hope in LA for evaluation for a stem cell transplant. They did another bone marrow biopsy and the results showed I had little to no residual disease present.

    I was prime candidate for a stem cell transplant. I went back to my own cancer doctor and discussed my options. I had time to think about it and discuss it with my wife. I had heard the stories about how hard the transplant procedure is and, after discussing it with my doctor, I made the decision to not have the transplant.

    Why go through the transplant if all it was going to do was get me to the point I was already at? My doctor had told me they thought they had caught the disease early, so why not wait and see what happens. I went another month or two on Revlimid-dex and have been off it ever since. I have now been in remission for over 4 years and I am hoping it goes on for a long time to come.

    I have blood work every three months, and, except for one time where my light chains went just out of normal range, they have been staying within the normal parameters. My kappa/lambda ratio has been out of range for a while, but that is because my lambda numbers are below the low limits. My initial problem was that my kappa numbers were way over the upper range of normal. Since they are still within normal range, we are just monitoring them. If they go way out of whack again, we will go back on Rev/Dex and then decide if I need to get a stem cell transplant.

    Good luck in your battle and keep up the good writing.

  • Josephine Diagonale said:

    Paul, thank you for your courage and your candor. Thank you for this article that my husband read first and alerted me that “I must read.” I have refused stem cell transplant (SCT) twice. Once six months after diagnosis in November 2007 at age 67 and, again, about one month ago. At diagnosis, I did a lot of research on this treatment and when I consulted my body, the response was clear. After six months of Revlimid induction, neither my husband the scientist, nor the myeloma specialist, could fault my decision (after even more research on my part) because of the pipeline of novel therapies that were coming to market.

    Recently, I decided to see another myeloma specialist whose first words to me were: “You are a very young 72 year old. You have no morbidity.” He is correct — I am and have always been healthy and active. His statement, however, was a prelude to telling me that I would probably live another 20 years and I should harvest my stem cells and have a transplant within three years. Well, after even more research, my response is the same. A stem cell transplant is not for ME. Even though I trust my good health to support my longevity, the truth is that the only moment of life that is guaranteed for each and every human being is the present moment.

    I hold a philosophy that every life experience is a learning experience and that life is meant to be expansive. Certainly, myeloma can intensify our thinking about death and the meaning of life. This is personal to each of us. To the best of my ability, I live a life based on service and “no fear.” I try to make all my decisions from a body, mind, emotion, and spiritual perspective. For the rest of it, I try to go with the flow and be grateful.

    In terms of myeloma, this disease, as with all cancer, is unique to each individual and therefore so is the treatment and the decision-making process. I partner with my doctors: listen carefully, question astutely, research extensively, and talk with other myeloma patients.

    Meanwhile, human creativity is boundless —- ours and the researchers and organizations who are working for the cure. There are many more novel therapies in the pipeline that target myeloma cells more precisely as well as all the genetic work leading to personalized treatment.

    Once again, thank you for sharing your stem cell experience “up close and personal.” You are certainly not unique either in your decision–making process or in your transplant process and outcome. However, you might be in the minority of people who have shared your experience.

    Best wishes and enjoy life!

  • Jim said:

    Paul,

    I agree with you 100%. My wife was diagnosed in September 2012, went on a program, and got her M spike to under 0.1. Our doctors still recommended the stem cell transplant, so she had it done in February 2013. Went through hell for a couple of weeks, then came through with flying colors. Went back to work full time around March 10th, then lo and behold, in July her M spike was back 0.7, got up to 1.4, now she’s doing Kyprolis, Cytoxan, and dex and m spike is going up and down from 0.9 and 1.2.

    Afterwards, the transplant doctor had the nerve to tell her that now they are thinking that the transplants may not have to be done right away, and that the regimens may be better off in the long run. She refuses to go back to see him and now we are going to New York to a specialist.

    Sorry about the rambling, but we are very upset! Please take hold of your disease and do what you think is best for you because the so-called experts are not always right.

  • Randy Strode said:

    I guess I will weigh in also. I am also 60 yrs old. Diagnosed with mm in December 2013 as a secondary finding to an MRI for a suspected rotator cuff tear (which I do have). The docs say it’s one of those gee whiz moments, like, gosh, gee whiz, look what we found. Fortunately for me, I did catch mine extremely early compared to most people with this disease. So for that I am extremely grateful.

    I just finished 16 weeks of CyBorD treatments and my m-spike levels are below 0.2 now. Did another lab just this past Saturday after reading this post. Shocked the doctors that I wanted another level ran — for my peace of mind mostly. I am scheduled for my stem cell transplant in 3 weeks. I am a pharmacist and am still actively working a 45-50 hours per week work schedule. My treatments went very smoothly without much side effects. I complained most about the dexamethasone causing weight gain more than anything … and the loss of sleep it caused. But I dealt with it. Changed around my work schedules, anything to make this all work.

    I’ve read everything I can get my hands on about this disease, treatments, best hospitals and clinics, best doctors, etc, on and on. We can definitely discuss pros and cons all day long until we are all exhausted. And that is a good thing. I believe knowledge is power and right now I need that power.

    I agree 100% that we patients are in charge. I also know that, for me, my God has been and still is in control of this whole journey for me. I will do my part, my doctors will do their part, and if it is meant for me to beat this disease, then He will get the Glory from me. However, I will give this disease no mercy, because it shows no mercy to us either.

    I told my doctors from day one to attack it in every way they could, whatever treatment works the best, and for as long as I was alive however long that is. In this journey so far, I have figured out that there are many different drugs, treatments, opinions, doctors, treatment centers, statistics, etc. Each one honestly believing they are 100% right. With this disease there are so many variables it’s impossible to be 100% right by all.

    So we should gather our facts, make the best choice that we can make based on sound clinical, personal, spiritual, factual judgment. Make a decision best for each of us and go for it. Hope for best results, and don’t look back. Always look forward. Don’t beat yourself up over decisions. Move on, always attacking this disease. Never ever give up. But don’t forget to live life abundantly along the way.

  • Paul Jakubowski (author) said:

    Thank you all for the comments to date. The simple act of writing this first guest opinion piece has gone a long way toward clarifying a lot of attitudes / learnings / opinions that I’ve had floating around in my chemo brain for a long time. Actually seeing it published motivates me to clarify and share those experiences even further.

    Your comments really help to focus in on areas I regard as both strengths and weaknesses:

    Ron Harvot: “However, we are not experts and do have to rely on the advice and counsel of our doctors.”

    The whole thesis of my essay, and my hindsight 20/20 approach to multiple myeloma, is just the opposite. Those of us afflicted, or in fiduciary care of someone who is, have no choice but to become the expert on our individual disease, and to challenge at every turn the advice we get from doctors. This, of course, needs to be done in a tactful, judicious way.

    I have utmost respect for the medical community. The detail that these doctors need to keep in their heads and bring out at will in 15-minute appointment after 15-minute appointment is awesome. But no matter how sophisticated the record keeping system, no matter how photographic the doctor’s memory might be, there is no one that knows our ever-growing history better than we do.

    It is imperative that we understand our disease from the inside out. After all, all we need to learn is the current approach to our branch of the disease. (Light chain? Heavy chain? Chromosome abnormality?) Yet the doctors have to keep the entire universe of current knowledge at hand because of the incredible complexity of this disease.

    Doctors have a place in our care; even an honored place. But we have to make final decisions. This is not a broken leg, or an infection with a well-known and trusted antibiotic drug therapy, where I’d agree with the premise that what the doctor says, goes. The “right answers” to our disease are yet to be found, and as such, if we allow anyone else to make a decision for us, my humble opinion says that it will lead to regret later in life as we examine the coulda/woulda/shoulda’s that were at our disposal earlier.

    Ron: “That is why, when a big decision like a transplant is facing any of us, it is advisable to get the second opinion from a MM specialist.”

    I did get a second opinion. And a third. All were the same – go ahead with the transplant. Sorry I didn’t make that clear in the original guest opinion piece.

    Ron: “With respect to firing all the bullets, there are a lot of them left in the gun. I would recommend you read Pat Killingworth’s blog.”

    This is the single best piece of advice I’ve gotten so far in these comments. There have been many pointers to thank people for, and I’d just emphasize that all are welcome and encouraged. Two years in, I’ve still got a lot to learn, and it’s amazing how one or two small pieces of reliable knowledge can change a down day caused by a bad assumption to turn into an encouraging day. I’d seen a couple of Pat’s writings before, as I browsed around the web, but am now actively seeking them out.

    Paul Jorgensen: “I think the disease has been a blessing to me in some ways. It has allowed me to stop the rushing from one task to another and to focus on the blessings I have had in my life — the many wonderful experiences I have had, and the many wonderful people I have know in my life. It has given me a joy and sense of spirituality that I have not known before.”

    Amen, brother. Extremely well put. Please, readers, do not gloss over this, but rather, sit back and ponder the many implications of Paul’s experience here.

    For my wife and me, we’ve put together a list of ways we want to live with each other to maximize the time we have left together, however much that is. There were elements of “bucket list” activities on that list, things to see and do before we die. But, in the main, it’s more about choices for how we plan to use our time to achieve the things we want to do in everyday life. For example, instead of watching TV, spending four to nine hours a week playing bridge in an attempt to reach Grand Master status. Waking up without the aid of an alarm clock. Spending time with family – due to travel time, something we find hard to do without committing it to it as a calendar item.

    Had I not contracted this disease, I can easily see how we could have fallen into the trap of other retirees who merely substitute watching TV for working. Ugh!

    Eric: “Once the choice is made, embrace it and do all you can to support it it with nutrition, exercise, and spirituality.”

    Spot on, Eric. My take: MM changes us. Like it or not, we become different people from what we were prior to diagnosis. I’ve found that when I fought the change, my disease got worse. After all, if you always do what you’ve always done, you’ll always get what you’ve always got. But when I quit drinking cold turkey, when I gave up ice cream and other fatty foods to fight off the weight gain from the steroids, when I changed from bacon and eggs for breakfast to oatmeal, when I started juicing fresh fruit instead of buying the stuff with the preservatives, I got better! When I got up off my desk chair and went for walks, I got better! Simple stuff works. And there will never be a better time in life to reverse a bad habit. We have the perfect excuse for doing it all at once.

    Jim: It appears that your wife’s experience is very similar to mine – elevated/elevating M-spikes after transplant. How she ever went back to work one month after transplant is a mystery to me. Nothing like the courage of a pioneer woman! My heart goes out to her. I know it is frustrating. My only advice back at you is to step back, take a long pause, and think through all your options vis-a-vis a doctor. Frustration is a useless emotion. (Boy has MM ever taught me THAT!) Regardless of results, those of us afflicted are wherever we are on our journey. I dealt with my frustration by submitting this article to The Myeloma Beacon. I am about to submit another on how to choose a doctor, as literally every doctor I’ve seen in my two years’ experience has moved on to other work, leaving me to my own devices.

    So, before you run off to New York (from where, you don’t say), think of how many times in a baseball game the infielder who makes the error in the top of the inning comes in to hit in the bottom of the inning and gets the key hit that drives in the run to win the game. Refusing to even talk to your current doctor robs you of his or her motivation to “make it up.” And the plain, hard fact is that transplant truly is losing favor in the array of treatments now available. Someone, somewhere, at some point in the future, just like the last soldier to get killed in the last war, will be the last transplant patient.

    And who’s to say that there are better doctors in New York than are available to you locally (unless, of course, you live someplace close like Fort Lee)? The choice of doctor is best made proactively, not reactively to a negative situation. Is he or she board certified in hematology? What age? Likely to outlive the patient before retiring? So young that she or he is likely to be promoted to a more responsible job? What are the facilities like where he or she practices? What’s the insurance impact? During treatment, how will you have to live? (Commute to the facility vs live in? Cost? Need for a car? Non-covered expenses?)

    My point is this – the M-spike numbers you cite are concerning, of course. But they, like mine, are not emergency level. You don’t cite any complicating factors, like liver, kidney, lung, or bone disease. Take the time to get a long term relationship with a trusted doctor right. Don’t settle. But take the decision in the most sober, dispassionate manner in which you can. Be open to all possibilities, even if they sound ridiculous at first. My own personal opinion is that the MD Anderson Cancer Center is the finest facility, with the finest MM doctors, in the world. I’ve considered moving to Houston to be close. For a lot of reasons, we decided not to right now, but the mere act of considering it clarified the pros and cons to the other life choices we’ve made. It took the emotion that can cloud a judgement out of the picture, and pointed the way to possibilities for me, instead of just the limitations I was formerly seeing.

    Randy Strode:

    Godspeed with the choices you’ve made. Three pieces of advice as you embark on this arduous journey. 1) BELIEVE the nurses when they tell you to chew the ice for three hours – it really does ward off the mouth sores. It is an absolute pain – the longest three hours of your life. But totally worth it later on when you are at your worst. 2) Take the Acyclovir to ward off shingles. My doctor took me off it after the transplant, and guess what? The most painful affliction of my life. Insist on it. 3) Be prepared for an incredible attack of chemo brain. Before you start, write yourself a note telling yourself it will get better, and have someone trusted hold it for you and show it to you during the depths of your second week. You won’t believe it then, of course, but the more you look at it over time, the more you will be able to judge your recovery as your faculties come back.

  • Randy Strode said:

    Excellent advice, and actually what I have been seeking on several sites I am a member of. I want people to tell me what to expect from the stem cell transplant. I’ve heard from some that they sailed right through, and from those of you who had a miserable experience. I will heed your advice because we all can learn from each other.

    I believe in learning from other sources ahead of time about all things in general so there are limited surprises. Staying on top of my own therapy is crucial. I am the one who suggested to my doctors to start Zometa right away. Even though I’m sure he would have made that suggestion, the oncologist thanked me and said he was glad I was a pharmacist to remind him of such things. And he is top notch.

    But they do have a lot to remember in a short period of time. The more eyes on the process is always better overall, but one person needs to be in charge in the end. I’m not at all critical when this happens, but ask in a humble way about my thoughts and opinions. I have yet to have a doctor get offended. Advanced medical care has gotten so complicated it takes a village to make it all work right.

    Truthfully, having the stem cell transplant has been the hardest decision I have made during this whole process. But, after 6 consults in favor, and all my immediate family agreeing also, I am going forward, not looking backward, trusting God to carry me through like He has so far. And, God willing, a positive outcome in the end.

    Yes, it will be a tough 3 to 4 weeks and possibly more. But I look forward and attack while I have it knocked to its knees, like you said, before I let it back up and it comes roaring back — but the next time with a vengeance. And, if and when it does (hopefully many years from now), I will have a new arsenal to attack and kill it for good..

  • Steve Albert said:

    Thanks for sharing your experience. I was diagnosed end of 2008 and felt that I had drawn the “short straw”. Then I found out that I was in the high risk group, a second “short straw”. The good news is that I was diagnosed very early in the disease and at age 61 when diagnosed I was in good enough shape to consider a stem cell transplant. My local doctor, local oncologist and a top doctor at a national hospital all advised me to seek treatment close to home where I would be comfortable as none of them thought I’d make it into 2011.

    A very important point many have made is that each of us can react differently to the offered treatments. I decided to be treated at the largest MM clinic which is located in the US. Treatment included a tandem stem-cell transplant over a 7 month period. It meant moving away from home for this time period My experience was quite different than many who have commented. Other than a severe sore throat for 5 days and a very low energy level at times, the side effects were very manageable. I’d do it again at the drop of a hat to achieve the results I’ve experienced … complete remission to date and I’ve now entered the flat spot of the curve where relapse is somewhat less likely as each year passes. I should also mention I’ve been on the maximum dosage of VRD for two years, again with very little side effects.

    As you mentioned taking ownership is extremely important but also as important is not being overly fearful of any of the treatment options offered based on the experience of others. Each of us is an individual and you just don’t know how you’ll react. Finally find the best doctor who has the best track record. It certainly helps in your decision making.

  • Terry L said:

    Hi Paul, this was an excellent article. Honestly, it was one of the top submissions I have ever read on the MB. I read it several times.

    When I was first diagnosed in 2011, apart from the local hematologist who diagnosed me, I saw three myeloma experts, all of whom would be well known to MB readers. Two recommended upfront transplants as though there were no alternatives whatsoever, and one told me completely the opposite. The funny thing is, all three know each other well. I chose the latter doctor’s approach and am doing well. I do have my stem cells harvested for future use.

    I honestly think that many myeloma experts, and doctors in general, are taken aback when their patients have done their homework and are able to posit relevant questions about the latest research, etc. The range in philosophies of treatment for myeloma has always been intriguing, and scary, to me, i.e. Berenson (a definitive no to transplantation) to the Arkansas approach.

    Thanks again for this article. I am looking forward to your next one. Terry L.

  • Mike Burns said:

    Hi Paul, thanks for your frank post, which has started a round of excellent discussion about a topic that is hugely important to all multiple myeloma patients and their caregivers. In this contributed column, though, you left out the best part of your original post – your first sentence talking about how you were writing this in the middle of the night during Dex insomnia. I can relate! :-)

    I am sorry that the SCT did not work well for you. I hope that your current treatment is more successful. Please keep us posted on how it goes.

    There is a clinical trial (NCT01208662) in progress that is designed to answer (as best we can) the question at the heart of your post: what is better, longer therapy with RVD or an auto SCT after induction therapy with RVD? I’m participating in that trial, which means that a coin flip by a computer decided a year ago which treatment group I would be in. How could I leave such an important decision to chance? I did as much research as I could, both through reading and through discussions with multiple doctors, and I could see pros and cons for both approaches, but no clear advantage for one or the other. That’s why they are doing the study, after all. So I was ok with whichever way the coin flip went.

    As it turned out, I got assigned to the SCT group. Like you, my numbers had been going down, as we wanted, during induction therapy and the SCT did not move them much. Later consolidation therapy did lower them some more, and I am in VGPR now, but I do wonder if I would have fared better if I’d been assigned to the other group. But I can’t dwell on that. I made the best decision that I could with the information that I had at the time – participate in the trial and let the chips fall where they would.

    That brings me to my second point. I come more from the Ron Harvot school of thought on this topic, and I’ll tell you why. In most cases, when patients get diagnosed with multiple myeloma, they are faced with the need to make initial treatment decisions within a matter of several weeks. And it’s simply impossible to come up to speed on the intricacies of MM and the wide variety of treatment options in that short time. It’s a Catch 22 situation. You need to seek multiple opinions, do what research you can, and then partner with a specialist you can trust. The treatment decision needs to be a joint decision.

    Yes, the patient “owns” the decision because it is the patient’s life that we’re talking about. But I am not presumptuous enough to declare that I’ve learned more in several weeks of research than my myeloma specialist has learned in X years of study and work.

    So I went the same route that you did in terms of getting the SCT, but for different reasons. I’m comfortable with the decision I made, and I am moving forward. Part of that moving forward is continuing to educate myself because everyday we make decisions about our treatment, even if it is the implicit decision to continue awhile longer on the current path.

  • Pat Killingsworth said:

    Amen! Not sure about the “divorce your spouse” part though; maybe a frank discussion might be enough. Hate to dump my caregiver!

  • Joyce E, said:

    Paul, I am very sorry to read that you consider a stem cell transplant to be pure hell. I am sorry that it was that way for you.

    I had a transplant in June 2012 and I had a much better experience. It is very true that this journey is very individual. I did not have a problem with mouth sores because I did as I was told and sucked on ice at the time. I lost my appetite so I did not have my usual energy. I was also nauseated and that was no fun.

    I was, however, able to read and watch t.v. without a lot of problems. Afterward, I did fairly well and went back to full time work in August. I have become permanently anemic and tell my doctors that is normal for me. I have had no treatment since my transplant, but I am sure the time is coming. I am in VGPR at this time and was in CR after the transplant.

    My point is that a transplant affects all of us differently. I respect people who choose to wait to do a transplant. They are making decisions for themselves, but I do not regret for a minute doing mine when I did. By the way, I was diagnosed in April 2011.

  • Jim said:

    Hi Paul,

    I appreciate your response to my wife’s situation. We are lucky enough to live in Greenwich CT, so we are 30 minutes away from New York City and are going to see Dr Sundar Jagannath at Mt Sinai Ruttenberg Treatment Center.

    When we first found out about the disease, we narrowed our choices down to The Smilow Cancer Center at Yale New Haven or Dr Jagannath. We have our second meeting with him this Thursday and we will see if he will tweak the regimen that my wife is on now, which is Cytoxan, Kyprolis and dex. She had a bad reaction to Revlimid, but he wants to try to see if he can somehow get her started on a very low dose formula to see if she can tolerate it because he believes that would help her the most.

  • R said:

    Hello from cross-town, Paul. (GI)

    I think the Mayo Clinic Stratification article/ paradigm (late 2012, Kumar) is even more accurate, everyday, as guidance for the SCT issue.

    In this day of emerging biological medications — stem cell transplant/melphalan etc — just isn’t for everyone.

    Indeed, the recent studies re: secondary cancers suggest melphalan may be the culprit, rather than Revlimid.

    30 years from now, I’m sure much of this will be an academic pursuit. It will be akin to our “ghastly revulsion of 18th century blood-letting, et al”. I predict viral load innoculations, administered via intra-nasal sprays, and mass engineered CART Therapy IV infusions, will render MM bothersome, rather than lethal.

    Until then, “Guinea Pigs R Us”.

    Be Well.

  • PattyMck said:

    Hi,

    It would be great to hear from docs who could provide reasoning for why they believe transplant is necessary after induction therapy and also those docs with a different view. Also included in discussion would be an explanation for the timing of transplant, criteria/reasoning for transplant based on M spike, BMB, FISH, kidney function etc. for best response, and whether either autologous or allogenic is best option.

    I bring this up because I think it would be helpful since it has been difficult for me as a non medical person to find articles and research papers on these questions/thoughts.

    Patty

  • Ron said:

    I struggled with the transplant decision, too. I responded really well to Velcade, Doxil and dex, achieving a CR after only three cycles. My doc convinced the transplant folks to skip a fourth round and I maintained a CR after the transplant in March, 2011, and for more than two years, most of which I took Revlimid maintenance (which I did not tolerate all that well; diarrhea, fatigue etc.).

    I talk to several other myeloma patients, and some received treatment and maintenance but no transplant. One is over four years with stable VGPR.

    In my case, I wondered if the new drugs alone made a transplant unnecessary; although the consensus still seems to be that transplant still is the best course.

    My relapse, six months after stopping Revlimid, has been mild, with a highest M spike of 0.34 that appears to have gone back to nothing after six weeks of injected Velcade and Dex. A couple of markers are still high, and I’m going to go four weeks and see what happens.

    It sounds like you had a rougher transplant experience than I. I began to feel better about T+30 and was back at work part-time after three months. Still tired, but I continued to improve, but it took several more months to feel almost my former normal.

  • Nick van Dyk said:

    First, thank you, Paul for sharing your story. And thank you to the other folks that have shared theirs.

    I am compelled to make a couple of points, if for no other reason than to offer a breadth of experiences that readers can draw from. These points aren’t tightly related in a narrative form, but I do think they are worth considering.

    First, I completely agree that we, as patients, must take ownership. That means understanding one’s biology, one’s disease, one’s prognosis, and the range of treatment options. Then choose a path based on confidence in your medical team, and stick with it. In the case of transplant (I’ll talk a lot about this), you should know going in if you are going to transplant, when, and why. Because it differs by protocol and purpose.

    Frankly, folks that are presented with the question of whether or not to transplant once they are mid-stream in treatment have not been served well by their medical team.

    In some types of treatment, the goal is to control the disease. Here, you use induction (which could include multiple classes and generations of novel agents) until it stops working or until CR is reached. If you reach CR, maybe you transplant, maybe you don’t. If you don’t reach CR, you probably transplant because induction alone isn’t enough. Personally, I’ve never understood the argument for a fixed number of induction cycles with this approach — if it’s working for three months, why not continue it? And if it’s not working after five, why continue it?

    In other types of treatment, the goal is to cure the disease, or at least eradicate as much of it as possible. This is the path I took, having been diagnosed at the age of 40 in 2008. I had ONE round of induction (granted, with a lot more chemo than most induction), tandem transplants, one round of consolidation with multi-agent chemo, and then three years of maintenance.

    This was the plan, decided up front, and it would have continued so long as there wasn’t dire complications or a failure to continue to reduce the MM. If I reached CR in one month or two years, this would be the plan. The reason for this is that it is believed MM responds to each of these agents, and if you hit it hard, up front, it will not recover. That includes enough maintenance to get rid of anything that wasn’t killed off in the initial onslaught.

    One thing we should also get straight is the idea that an auto transplant is really a transplant. It’s not. You are receiving your own cells back. An “auto transplant” is a rescue procedure to help the patient recover from high dose melphalan. An auto transplant is nothing more than high dose chemotherapy, with steps taken after that high dose chemotherapy to ensure that the patient doesn’t die.

    So in my treatment, I got one cycle of VDT-PACE, two cycles of melphalan, another cycle of VDT-PACE, and three years of VRD. A lot of medicine. Delivered in rapid succession so the disease cannot figure out how to escape one pathway before another one gets to it.

    As for the transplant(s)? Paul, I’m very sorry that you had such a rough experience but they certainly aren’t all like that. I had two, six weeks apart. I was VERY tired for two weeks. I had diarrhea for a few days, controlled with Immodium. That’s about it. I was on an airplane 14 days after my second transplant. I don’t consider them to be life-changing experiences at all. They were medical procedures that I had to go through in order to rid myself of this cancer.

    For what it’s worth, the argument that the disease is incurable holds less and less water these days — more and more studies from more and more places are triangulating around the concept that if one is disease free for 8-10 years, one doesn’t experience recurrence. It therefore follows that the goal must be to achieve CR and sustain it. Right now, not everybody achieves CR (although the “highest risk” patients achieve it more readily but cannot sustain it very long.)

    This brings me to a discussion of risk. “High” and “low” risk are nothing more than euphemisms. “High risk” means nothing more than “disease that typically does not respond to the agents we use against it in this particular program.” “Low risk” means nothing more than “disease that typically DOES respond to the agents we use against it in this particular program.”

    When I was diagnosed, many centers (not the one I went to) considered deletion 13 to be high risk. Now, we see that deletion 13 responds to Velcade. It’s no longer high risk. This isn’t because deletion 13 has any different impact on biology than it did 10 years ago — it’s because new medicines work to contain or eliminate that abnormality. Five years ago, the center where I had my disease treated made the observation that translocation 4;14 was not high risk. It’s currently debatable, depending on which center. But again, all that means is that 4;14 was responsive to the treatment that my center used/uses.

    This is an individual disease, and factors like one’s age at diagnosis and one’s general health at diagnosis play huge factors, as does one’s disease biology. If one has “high risk” disease today (meaning, disease which isn’t going to be killed through application of existing agents) then that implies a different treatment plan than one who has “low risk” disease today. But even though it’s an individual disease, one needs to understand treatment philosophy and have doctors that have intent and purpose behind their approach. If a doctor says “I’m going to give you Revlimid for six months of induction because that’s the ‘standard of care’”, look out. That means they don’t know why they are doing what they are doing.

    Instead, you might find one doctor that says “we can’t cure the disease, but using a variety of induction drugs to achieve CR will accomplish X, and we then either transplant or don’t based on Y and Z, and that will lead to outcomes A and B, and in recurrence we then do X.” You might find an alternative doctor that says “we can cure a large portion of low risk patients by doing A, B and C, and in the unlikely even it comes back, we do X, Y and Z.” And then you would choose, based on your own personal preferences, which way to go.

    Anyhow, just some thoughts.

    For me, personally, I am more convinced than ever that cure is out there. Just in the last week, studies from Italy (published via the NIH) and Spain (referenced here at the Beacon) both demonstrate a plateau after 8-10 years of remission: that is, patients that have sustained remissions of that length very rarely experience disease recurrence. There is cure out there.

    Unfortunately, right now it doesn’t exist for everybody, and it’s very aggressive therapy that’s generally required to get there. So we need to continue pushing for newer, more effective treatments that overcome the entire range of chromosomal abnormalities (thus eliminating “high risk”) and ones that don’t require aggressive chemotherapy regimens like mine did.

    For me, personally, I’m happy to be five years in complete remission with no minimal residual disease. I can’t say I will breathe totally easily until I get to that 8 year point, but I also don’t live my life with a Sword of Damocles over my head. It’s all good. Life is a wonderful gift, doled out on a daily basis.

    Good health to you all!

  • R said:

    Nick:

    With all due respect, you are all cue’ed up for “cure”, such that it colors everything you do, or see, relating to multiple myeloma.

    You certainly have had good outcomes so far — early yet, as multiple myeloma goes — and may you have a long, 40+ year remission and be hit by a bus crossing Wilshire Boulevard when you are 80 and chasing a young blonde female with a bottle of Viagra in your hand!

    However, not everyone has the line up of celestial bodies — genes, insurance, the family support, the money, the biology, and the flat -ss luck — to be able to pick up and park themselves at a transplant center for 6 months or longer and say “Do what you will”. In fact, very, very few people can (or want to) uproot themselves in that fashion. Those that do are truly deflated when all their luck is to no apparent benefit.

    Sam Walton couldn’t — that is why he gave big bucks to the University of Arkansas. He had a growing giant to manage (Wal-Mart). I’m sure his beloved ’76 Chevy pickup would have carried him safely to Little Rock, from Bentonville and back. Yet the disease still got him.

    The treatment point is this: There is a balance of “quality of life” versus the relatively impossible uproot of your life for a year as a “guinea pig”.

    I’m extremely glad you are enjoying good health and stable income. However, common empathy compels most folks to recognize the current limitations inherent in treating this disease. In that fashion, I think Paul’s comments express a relatively common frustration with this current process. Paul writes about it well … and honestly.

    I am glad you have done well. You are a rarity. Congratulations.

    However, I admit I am also bewildered by your reliance on your experiences as coloring the “Cure v Control” paradigm. This disease presents in many different fashions. Most folks can’t even dream of “Total Therapy I, II, III, IV” based on considerations completely outside of medicine.

    Call it the “luck of the draw”. Not everyone has the perfect line-up of assets, astrology, situations, time, family, etc., to pursue “cure” as a guinea pig. Most of us wait urgently for the development of less invasive measures, while going about our lives, as simple and as modest, as they may be.

    - A nasal spray with an anti-viral load to control / eradicate MM?
    - Modified CART applications, reduced to a simple infusion — ala our monthly Zometa IV infusions?
    - etc.

    I’m sure this is not news to you.

    Regards,

    R

    P.S. – Buried a schoolmate this week at 53. Chris looked just like Charlie Harper ( 2 1/2 Men) when healthy. Lung Cancer. He underwent extreme treatment(s). Chris looked 90 years old last week. Cancer just sucks!

  • Nick van Dyk said:

    With respect, “R”, and with appreciation for the intent of your comments (including what I will take as earnest goodwill with respect to my health), some of them deserve push-back.

    You are correct that the fact that I think a given therapy offers an opportunity for cure colors my viewpoint. It should color EVERYBODY’s viewpoint, insofar as it should affect how they think about their options.

    I make no claims that it’s for everybody. Age is a primary consideration — not so much from toxicity of treatment but from whether or not it’s enough, at age 70, say, to get 7-8 years from novel agents without going through a whole lot more to get another few years in one’s 80s. Health is a primary consideration.

    Some of your other considerations are less valid than others. Arkansas sees more patients than any single center in the world. They see people with good insurance, they see people with medicare, they see people with no insurance. They have compassionate assistance. This isn’t some insane Lorenzo’s Oil type thing that only six people in the world qualify for.

    If somebody is too inconvenienced to spend a few months away from home to potentially cured of a disease that is otherwise fatal? I’m sorry — that’s not a reason to be dismissive of the therapy. This is not a convenient diagnosis. Cancer is inconvenient, undignified, and altogether sh*tty. I’ve seen people without families do just fine in Arkansas. ANY health situation is easier with a supportive family. Plain old get-treated-at-home-myeloma is crappy without a supportive family, just like get-treated-in-Arkansas-myeloma is. It’s not like you can’t do Total Therapy unless you have three people crowded around you at all times.

    Similarly, the line-up of genes requires no celestial intervention. 85% of patients do well on Total Therapy. There’s nothing special about me, other than I was young enough to benefit from cure.

    And with respect, again, the argument about being a guinea pig held little water in 2008 and far less now. There are too many doctors now admitting that cure is out there for it to be discarded as random testing. There is too much data in support of what they are doing. There are too many long-term survivors.

    It is not for everybody. I can’t be more clear about that. But it should be investigated by every newly diagnosed patient, with a full understanding of what it purports to offer and why, and then that patient can make a determination of what that person wants to do. To dismiss it as insane testing with only a tiny hope of qualifying for it and instead devolve into a discussion about how the entire fabric of one’s universe is irreparably shredded when one undergoes a transplant is a disservice to the newly diagnosed.

    Paul writes about his experience well, and honestly. I write about mine, and write about it honestly. I’ve known too many people that handled transplants without issue to agree with Paul that it is a devastating experience. It is for some, and I’m truly sorry for them, Paul included. It probably is a grueling experience for a higher number of patients that are treated by doctors that don’t do a lot of them — hence my urging to see a specialist that does a hundred of these a year or more. Inconvenient? Well yeah, it’s an inconvenient disease. I make no apologies about suggesting that if you have a life-or-death medical diagnosis, you take whatever measures are necessary to fight it. That seems like common sense.

    Most newly diagnosed folks can do far more than dream of Total Therapy. Most folks who are young enough to benefit from the difference of cure versus control, and who are otherwise healthy, can get it done — whether at Arkansas or Huntsman or Iowa or Michigan or St. Louis or elsewhere. I could have had it done locally in Los Angeles, had I wanted to.

    We are more empowered as patients than you give us credit for, I think.

    I came back here to make this comment at the urging of a good friend — oddly, one with whom I exchanged very sharp words some time ago, but who now understands me as I understand her. I dunno what it is about the Beacon forum, but it sure brings out the dust-ups in us! :)

    Let’s all remember that myeloma is the enemy, not each other.

    Peace and good health to you, R, and to all the rest of you.

  • Cheryl G said:

    I’ve appreciated this comment thread a lot, and I am glad Paul shared his opinions and experiences in a way that sparked such discussion. I suspect that I am not the only one here, however, who would prefer that, as the comments continue, they focus on issues, experiences, and perhaps evidence, rather than being veiled (or not so veiled) personal attacks.