Myeloma In Paradise: When To Get A Stem Cell Transplant?
I would like to address a topic that almost all of us with multiple myeloma have to deal with at one point or another – when to get a stem cell transplant.
Many of you reading this have been through this procedure already. It is often prescribed soon after diagnosis for patients with advanced myeloma. Most of these folks didn’t have much choice in the matter; it was something that needed to be done urgently to give them the best chance of survival.
Others – and I am in this second camp – have the gift of choices.
I have clinically defined myeloma with a high M-spike and a high free light chain value. Luckily, I have very few myeloma symptoms and no bone lesions. I was initially treated with a combination of Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (Decadron) (VRD) for about 10 months.
The goal of this initial treatment was to get my M-spike and free light chain values down. Once that goal was achieved, I was to take a few months off of treatment and then begin the stem cell transplant process.
A funny thing happened on the way to the transplant … My doctors told me “No, not yet.”
The transplant center decided that my myeloma wasn’t advanced enough to warrant the transplant. Instead, the oncologist recommended that I go back on VRD and try to lower my M-spike further.
At first, I was strangely disappointed because I wasn’t pursuing the strategy I had been dead set on for a year and half. I came around, though, and realized that this was an opportunity for me to further take control of my own treatment.
As a more educated patient now than when I was first diagnosed, I have come to realize that we patients often have choices in this battle.
It is important that we understand these choices and push our health care providers to present us with all of our options.
In my case, I followed the transplant center’s advice and went back on the VRD regimen for about five more months. After that, we got permission from my insurance company (no easy task) and the transplant center to harvest my stem cells while I was still relatively healthy and put them in storage. The idea is that this harvest was easier because I had endured fewer cycles of treatment before trying to collect my stem cells.
This turned out to be accurate, as I was able to collect enough cells for two transplants in just one day of harvest.
That was almost a year ago now, and I have been on maintenance therapy ever since. I am putting off my transplant until it becomes obvious that maintenance is no longer working. I will keep this bullet – the transplant – in my gun until I absolutely need to shoot it.
This isn’t the course I thought I would take when I was first diagnosed, but I am happy that I have done it this way.
One of the basic tenets of myeloma treatment with novel agents and stem cell transplants is that these weapons tend to work best the first time they are used. Therefore, you must decide when to use them.
The basic options (I don’t profess to know every option) as I understand them are:
- Do the transplant – or maybe even two – right away, and combine it with intensive, up-front and post-transplant treatment, as well as some maintenance therapy, to go for the deepest possible response.
- Start with treatment to stabilize your numbers, have the transplant to deepen the response, and then decide about maintenance therapy afterwards – the most common plan.
- Start with treatment to stabilize your numbers, go on to maintenance for either a fixed amount of time, or until relapse, and only have the transplant at relapse – the wait-and-see plan.
Of course, each of these treatment plans has their logic, their supporters, and some detractors. I do not believe there is one “best” solution for every patient. Especially with myeloma, each case is different, both in terms of the disease and response to treatment.
In my case, I try hard to gauge what possible side effects each treatment entails, not just the survival statistics. I am always striving for quality of life, not just quantity of life. By holding back on the transplant, I am trying to use as little treatment as possible in order to keep some defenses in reserve. Since I have very few symptoms and my M-spike is under control (but not going away), I have this option.
I hope that by delaying my transplant as long as possible, I will maintain the quality of my life now and increase the quantity of my life down the road.
I am scared, however, that this is the “honeymoon” time of my disease and that I am damaging my body with the maintenance therapy. My concern is that this treatment is doing long-term damage for near-term results.
While the stem cell transplant is very invasive (it completely kills the immune system), most people seem to be able to cut down on treatment for at least a while afterwards. However, I’m wondering whether the transplant is doing as much long-term damage as the extra treatment that’s been avoided.
As I said before, I am reasonably comfortable that I made the right choice for me. I just wish I could get those voices in my brain to stop asking me if I’m sure!
When is the best time to do a stem cell transplant?
You need to decide for yourself.
Aloha and carpe diem.
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at.
Hi Tom. Can I ask what the percent of plasma cells in your bone marrow was when you started treatment? Did you have any anemia at all?
I am soon to have the 'why do I need to do this transplant so soon' conversation with my oncologist, who seems to have the 'hit it hard, hit it early' approach.
Best wishes,
RT
My dad is in the exact same spot - to transplant or not to transplant - and leaning toward waiting. When pushed, his MM specialist said he'd do it in first remission if it were him, but if waiting was truly crazy, he'd tell us so. Here's some important factors about my dad, but we're not sure how that translates to the timing of transplant -> He's 59 and in otherwise excellent health; He was diagnosed at ISS Stage 2 (just under 3), DSS Stage 2A (no kidney impairment or bone damage); he is in his 6th cycle of RVD and has reached CR, although we won't know how deep until his biopsy at the end of this month (hoping for sCR!); and he's IgA with t(4;14) translocation; due to these cytogenetics, the MM specialist would put him on RVD maintenance if he chose not to go to transplant.
What to do? Like you, Tom, my dad really doesn't want to disrupt his life so much right now when he's feeling pretty darn good. But what about the toxicity from being on RVD for potentially years? Will that make him refractory to Revlimid and/or Velcade sooner than transplanting and going on a 1 or 2-drug maintenance?
These are questions my parents will be asking the specialist at the upcoming meeting to re-stage and get the new bone marrow biopsy done.
If there is no known right or wrong answer, how do you not look back and question "What if?" It's probably more important for the patient to decide treatment and not look back, but it's stressful for me as a secondary caretaker.
Sorry for the long post! Perhaps this warrants a forum discussion.
Hi Tom. Very nice article. While we are at different points in our myeloma journey (I have been a very "high risk" smolderer since diagnosis in 2009 and have received no treatment other than Zometa since then) and I have not yet been through a transplant or been forced to decide whether I should have one, I can relate to the underlying issues that the transplant decision requires you to face: (1) having various choices relating to both the timing and type of treatment, (2) weighing quality of life vs. quantity of life (and not really knowing which treatment option(s) will extend/improve either of them) and (3) trying to be as comfortable as we can with the decisions we make while understanding that many others (including oncologists who have spent their careers studying this disease) would choose a different approach (because there are so many approaches and often completely conflicting viewpoints!).
I realize I will continue to struggle with these issues and am appreciative of the fellow patients like you who can share their experiences and help those of us who follow make more informed decisions.
Hi Britt,
Thanks for your comment on Tom's column. Please feel free to post a question in the forum about your father's situation.
As you might expect, there are A LOT of transplant-related discussions in the forum -- this link will take you to a list of almost 400 discussions on some aspect of transplants for myeloma patients.
A number of people in recent months have asked questions in the forum similar to the one that you and your family are asking. Here are some links to some of those discussions. Others who participate regularly in the forum may be able to point you to additional discussions there that they have found helpful:
"Experiences with not doing an early stem cell transplant" (Jan 29, 2015)
"Stem cell transplant or not?" (Nov 8, 2014)
"Is it best to have a stem cell transplant done upfront?" (Oct 12, 2014)
"Should I do an early stem cell transplant?" (Jul 24, 2014)
Aloha RT,
My % of plasma cells was about 35 when I started treatment. I have had undiagnosed slight anemia for decades (maybe MM?). It has not gotten better or worse since treatment began. Good luck in your decision.
Brit & Jason - As the Beacon Staff has pointed out, you can find more experiences in the forum. I think though at the end of all of our research there still lies more questions.
Maybe that isn't really a bad thing though. If one approach was clearly inferior it would have been eliminated by now. I like to see it as different good ways to get to a similar end point. Kind of like too many good options at a restaurant. If the prime rib was clearly better than the crab legs it would be easier to know which one to order. Since both are very good you won't go horribly wrong with either order.
Maybe I'm just hungry!
Aloha
Tom
Tom,
I'm not exactly qualified to respond to your query since I've already had my SCT. However, my experience may help to persuade you (or not). In some ways, I was more fortunate than you; in others, far less so. I was so high risk, and so weak, and so sick, when I was first diagnosed that I didn't feel like I had the option to even consider getting a SCT or not. I was diagnosed in January of 2013, and had my SCT in June of the same year.
My response has been incredible. I had an initial VGPR that deepened to a CR within very few months. Since I was deletion 17p, I went on Velcade maintenance only for another 7 months. I have been off all myeloma drugs for almost 1 year now and my lab work is still positive.
Seems like I'm arguing for a SCT here, doesn't it? Well, not exactly. I had responded exceptionally well to the VRD therapy for 6 months prior to the SCT and was feeling pretty strong. While everyone responds differently to SCT, mine was a rather difficult ordeal.
Gaining back any strength or energy post SCT has been very difficult. In fact, today, 27 months post transplant, I have less energy than that period just prior to the procedure. No one seems to know why for sure. I was healthy pre transplant, I'm healthy post transplant, yes, there is that pesky low level anemia, but that just doesn't seem sufficient to account for my extreme energy depletion.
Apparently, this is not an terribly uncommon reaction to a SCT, though I don't see much mention of it in these forums. So, if I had a choice as to get a transplant, or forego it, I would almost assuredly forego it as long as possible.
Research seems to suggest that longevity rates are the same with or without the transplant. I do feel compelled to add that I have always had difficult side effects from meds and vaccinations. If that is not true for you, a transplant might be more worth considering.
Hope this helps some.
Aloha,
Daniel
Hello Tom, thanks for your column. I am also not qualified in any way, but I can give you my own experience.
This month 2 years ago, I had my autologous stem cell transplant, a half year after MM diagnoses. I asked my 2 oncologists if a transplant was necessary, and both their answers were that there was not really an option if I wanted to live. At 55 years of age, you are not going to argue. I had bone damage, a kappa / lambda ratio of 192, 70 % MM in my bone marrow biopsy, and my M-spike could be detected in my urine.
After my transplant until this day on top of the damage already done, I got a blockade of 85% in one of my smaller hart arteries. I went from an almost complete shutting down from my kidneys in week 2 post transplant to a chronic kidney disease now. My once perfect lungs are in need for an inhaler and my gastronomic tract is permanently damaged.
I am not willing to go for another transplant, to be honest. For me, it came with a lot of complications. I also know people who did really well with a transplant. I think that, whatever path you will choose, it never comes with a guarantee. GOOD LUCK.
This is such a difficult treatment decision. I was diagnosed in April 2014 and began treatment almost immediately. I am IgA kappa light chain and my reading was initially over 12,000. My oncologist's plan was for upfront transplant. I consulted with several myeloma specialists and it was far from unanimous. It was one of the hardest decisions I have ever had to make. I underwent transplant in early October. Going into it, I had negative bone marrow, PET/CT, and normal light chains and ratio. Faint IgA kappa on immunofixation. No M-spike. Mildly anemic. Induction was RVD with Revlimid reduced to 10 mg due to mildly elevated creatinine (1.2 - 1.3) from light chain damage. I have 1q21 addition which some docs consider high risk. I am just turning 60 this month. Otherwise healthy. Prior to illness avid exerciser.
So here I am 5 months post transplant. Normal PET/CT and bone marrow. I have had oligoclonal banding of IgM and IgG, both kappa and lambda, with M-spikes ranging from 0.1 to 0.05 to too faint to quantify and to 0. My last bloodwork was odd. With lambda at 50 and kappa at 8. I was recovering from a dental infection -- 2 extractions and 10 days of Zithromax. My doc thought that might be the cause of the light chain results.
I guess my point in writing all of this is that the transplant can produce unexpected lab results that can be disconcerting. As far as how I am feeling, I would definitely say that I am not myself. Fatigue and GI upsets are common, especially nausea. I am starting maintenance RVD next week. Velcade twice per month with 12 mg dex IV and 5 mg Revlimid 21 days on 7 off. I have to say that I am always amazed by people who have the stem cell transplant and go back to work after 30 or 60 days or when they say they feel great! I did not have any serious complications and was out of the hospital after 16 days, but I am a far cry from my pre-transplant self.
I just saw my oncologist today, and he is comfortable with my decision to wait on the SCT. I started out with 50% malignant cells and lambda at 4500 exactly one year ago. I started out with Revlimid 25 mg and dex 20 mg, but that didn't work very well for me. We added weekly sub-q Velcade in June and that did the trick. Lambda numbers have been in the normal range for the past 4 months and continue to go down. Cancer cells were at 0.2% on last bone marrow biopsy in December. He says in my case there is no clear answer, so waiting is just as good at this point as doing the transplant. We're going to do do another bone marrow biopsy in June and see if maybe the 0.2% has gone done to 0. If it goes up, we'll talk transplant. If it goes down to 0, we'll probably go to Velcade every other week and drop the Revlimid and dex.
Reading Ellen's comment about being a far cry from her pre-transplant self makes me wary of jumping into transplant unless I'm really clear that it is the only good option. At this point, while I am tolerating meds well and feeling strong, I think watchful waiting is my best option.
Thank you, Tom, for this very insightful article. Coincidentally, you and my husband share some of the same factors with your multiple myeloma diagnoses. After four cycles of RVD and panobinostat, my husband went through stem cell collection and was able to gather enough for two transplants. Like you, he decided to delay a stem cell transplant after discussing the options with his myeloma specialist, although he had expected to go through the transplant right away. He continued with four more cycles of RVD and panobinostat and is now on maintenance chemotherapy of slightly lower doses of Revlimid and dexamethasone along with the panobinostat. So far, though, he has only achieved a VGPR. There is a very low but persistent M-spike.
Like you, my husband is concerned about quality of life and, at this point, he can tolerate the minor side effects from the chemotherapy. Your article enabled us to take another look at the options and feel comfortable with his decision to delay stem cell transplant until relapse. We are still feeling our way through the research and literature on multiple myeloma and so appreciate reading about your situation and experiences since you are a bit ahead of us in this journey. We look forward to hearing more from you and expanding our knowledge of treatment options and their side effects as well as long term expectations.
I struggled with the decision and ultimately decided to have the transplant because I didn't want the question to creep into my head. I don't believe in living life with regrets, and I didn't want to get on the back side of this disease and regret not having tried the transplant. The hematologist said do it, and the oncologist said with high risk disease there's no right or wrong answer.
What comes next is the big question. Before having the SCT, the oncologist said there was 1-2 rounds of VRD as consolidation and then move to 2-3 years of maintenance. Both the hematologist and the oncologist agree on maintenance. We'll see about consolidation therapy in a couple of weeks.
Aloha Daniel, Christel, and Ellen - Thank you SOOO much for sharing your stories chronicling your challenges with your post SCT health. I am sometimes too much of an optimist and had forgotten (conveniently) that the SCT sometimes causes other problems that didn't exist before. I hear so much about the success stories and people who ride their bikes home from the hospital (my exaggeration) that I had forgotten the very serious possible consequences.
I think that many of us are wired such that we more easily forget the negative and give the positive a greater emphasis than it deserves. I knew there were potential negative consequences of the SCT, but I don't think I could have named them before now.
We all need to be sure we are as informed as possible about this decision and perform our due diligence to get the most up-to-date information. I know I have some work to do before I take this important step.
Aloha
Tom
Peggy and Patty - Lets hope we can continue to tolerate the meds for a long time to come and find them to be effective!
Lori - You make a good point about another big decision. I try not to take my chemo for granted. I am always wary about any changes. Good luck to you!
Aloha
Tom
Here is an article that is well worth reading when considering to have a SCT, or not.
M Gertz & D Dingli, "How we manage autologous stem cell transplantation for patients with multiple myeloma," Blood, August 2014 (link to full text of article).
Best,
Steve
Maybe this can be of help. It is an interesting pro versus contra ASCT by myeloma specialists Dr. James Berenson and Dr. Sergio Giralt:
To Transplant or Not To Transplant in Multiple Myeloma," Clinical Advances in Hematology & Oncology, May 2014 (link to full-text PDF)
Have a safe multiple myeloma JOURNEY.
Tom, I know the decision is a tough one and everyone is different! In my case, I had an IgG level of 3,600 and a large plasmacytoma on my hip (iliac) and was under 50 years old. Went from jogging, etc, to being hardly able to walk. And no chromosome abnormalities, in my case. We tried Velcade and dex, but it only reduced my count for 2 months and then the IgG continued up.
Then used Revlimid (10 mg) and dex and went into remission in 2 months.
We then decided to harvest stem cells and collected enough for 2 transplants in 1 day (12m). 25 days of radiation followed on the plasmacytoma.
One month later I had to decide transplant or wait. I said I am ready, prepared, and let's go. I am now 80 months into my remission. No maintenance and hoping, just maybe, that we "cured" it.
I still read the Beacon daily and keep up to date with the medical findings and new drugs, just to be knowledgeable and in case this myeloma decides to reappear someday.
Good luck to everyone, it's a decision we need to make.
For me, there was no choice. I was told I was being induced with chemo for 5 cycles and would then have a transplant. A big factor is my young age when diagnosed (32) and the best odds at long survival (sounds morbid) were with transplant. Novel therapies were still that, new! Not as many options as there currently are in myeloma therapy.
I did my chemo for 5 cycles and had a very good response, then started preparing for my transplant (harvesting stem cells) after my induction. In the one month off treatment, my numbers started creeping back up. I did not reach a CR before transplant. After my transplant, my numbers were not at zero, but slowly went down. At my 4 month follow-up, I was at CR and stayed there for 4 years! My numbers have been creeping up slowly for about a year, but I am delaying starting treatment again for personal reasons, and my doctor thinks I can coast for maybe another year if I'm lucky. So 6 years drug free post transplant would be a pretty good outcome I think!
This disease is so individual, you really have to look at what is best for you, and not what the majority say is right.
I already know my future treatment plan, and, yes, it includes a second transplant!
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