ME vs. MM: Life After Dex
Perhaps the title of this column more appropriately should be "Life After CRD," since I've now completed 24 cycles of Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone (Decadron), commonly referred to as CRD, as part of a clinical trial for newly diagnosed patients.
However, since dexamethasone seemed to be the predominate source of my side effects, and because I liked the play on words, I went with the title as shown.
So, I've completed the clinical trial, I've reached stringent complete response, and I've won the first battle in my war with multiple myeloma. But make no mistake, this war is far from over and my next tactical decision has been to decide whether to continue with maintenance therapy.
The major advantage for going with maintenance therapy, which in my case would be 10mg of Revlimid taken days 1 through 21 of a 28 cycle, is the potential for extending remission. Results from three recent studies all show an approximate 18-month increase in the median progression-free survival (PFS) for patients on Revlimid maintenance.
Obviously, 18 months is a significant improvement.
There isn't enough data on CRD yet to determine the median PFS, but based on results to date, CRD appears to be providing responses comparable to, and possibly better, than Revlimid, Velcade, and dexamethasone (RVD) and to high-dose chemotherapy followed by stem cell transplantation, each of which have a median PFS of about four years.
Individual responses may be better or worse depending on a variety of factors such as age, depth of response, and the presence of chromosomal abnormalities. In my case, I have none of the negative factors, so I am hoping my response will be considerably better than the median, perhaps six years or better. Therefore, I might be looking at the difference between six years or seven and a half years of remission depending on whether I go on maintenance.
So what are the potential drawbacks?
First is the risk of secondary cancers from long-term use of Revlimid. One study found the risk of secondary cancer increased from about 3 percent to about 7 percent for patients on Revlimid maintenance. However, that increase was associated with patients who had undergone a stem cell transplant following treatment with high-dose melphalan (Alkeran). No evidence was found to show the risk of secondary cancer increased following treatment with novel agents as in my case.
Second is the potential effect of prolonged Revlimid usage. I've been on chemotherapy for two years, pumping my body with poison. Is there a possible long-term toxic effect if I continue with Revlimid? I brought this up with my doctor, and he indicated that long-term use of Revlimid could compromise my bone marrow and affect its ability to produce white blood cells and platelets.
Third is the chance of building up resistance to Revlimid. My doctor also confirmed that if I relapse on maintenance therapy, chances are I would be Revlimid resistant at that point, which would affect my options for my next line of treatment.
Finally, there are the side effects associated with Revlimid. Most notable of these are low white blood cell counts, low platelet counts, gastrointestinal issues, rashes, blood clots, fatigue, and possibly respiratory issues.
The potential for secondary cancers does not concern me much since the percentages are relatively low, and the risk does not appear to be an issue given my type of treatment. However, the potential for compromising my marrow's ability to produce white blood cells and platelets, and the risk of developing resistance to Revlimid and limiting my options for subsequent treatment are concerns.
I have thought about these pros and cons a lot over the last month or so, and the decision was not easy to make. In the end though, I have decided to go drug free and forgo maintenance therapy.
I should also note that before I made my decision, I also discussed it with my wife, since as my primary caregiver she is the one that will be impacted most besides myself if I relapse. This needed to be a joint decision, and she is behind it 100 percent.
I realize this is not the same decision someone else might make, but I would rather have six years without side effects, without the risk to my bone marrow, and without the risk of building resistance to Revlimid, as opposed to an extra year and a half of remission.
Perhaps six years from now if I relapse I may feel different, but I have made my decision, and good, bad, or indifferent, I will live with it.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I made the same decision Kevin. In addition to all of the things you mentioned in your post, I also wanted to feel normal again. I wanted to feel that my life was normal, even if it turned out to be for only a short time. I've never regretted my decision even though I relapsed after 3 1/2 years of remission from my first transplant. I'd make the same decision in a heartbeat.
Kevin,
We're all different in so many ways, with exception of the dreaded diagnosis: Multiple myeloma. I also chose to go drug free after my SCT for much of the same reasons as you and Pam. It's just so wonderful to breathe the free (of drugs) air and enjoy life while we can.
We'll see a cure soon. Hope its in time for us all!
Julia
Hi Kevin, I am also 'drug free' since April 2011, after 22 months of treatment. I was fortunate to be in a complete remission at that time and still am. I need to have my blood tested at least every three months though, in case the myeloma starts to creep back up again. Wishing you all the best for your health...hope your remission goes on indefinitely!
Kevin,
Thank you for sharing your story. I know that is one tough decision to make. My husband just started on Revlimid maintenance so we will see how it goes. That is great that you and your wife made the decision and are in agreement. We've done that many times too over the past year in regards to different treatments/procedures. Best of luck to you and keep us posted! God Bless.
Liz
kevin
great summary of the pros and cons of of the Revlimid maintainance question and of course there is no right and wrong answer. The best you can do is process as much information as you can gather and than go with your best instinct as you have done. And than don't look back. Hopefully you won't have to make any more "myeloma related"decisions for a long time
Hi Kevin, congratulations for finishing a full 24 months of CRD and what a great result! I know the 24 months involved lots of travel, aggravation, etc. I hope and pray the MM never comes back and you can get this stuff out of your mind. CRD for many people has been like a miracle regimen. I think your decision was a wise one since you already had 24 months of treatment. My CRD trial at the NIH is less aggressive and involved 8 months of CRD followed by two years of Revlimid which I am now on. Good luck. You are a great inspiration and deserve the best!!! Terry L.
As I was reading, a question came to me: you cite 6 years as your likely median progression-free survival. Does that statistic take into account the fact that you have achieved a stringent complete response? Not sure that makes a difference, but I would assume it might.
I'm with you, by the way: I only had a very good partial response (not complaining, mind!) to Velcade/Dex through 4 cycles and an ASCT... but I too am flying clean these days. Holding steady, so I am happy. It has been almost a year and a half for me so far, and I am working hard at rebuilding my strength, stamina, and immunity in preparation for Round 2 (date to be determined)!
I also made the same decision to forego maintenance therapy with Revlimid for many of the same reasons, even though I achieved only a very good partial response after 6 months of Revlimid, Cyclophosphamide and Prednisone and an auto SCT. I was most concerned about preserving my future treatment options upon relapse.
Kevin, My husband has been chemo free since May of 2008. His MM specialist believes in letting folks go drug free to have as good a quality of life as possible. This is a hard decision to make, as are all decisions regarding MM, but, in my opinion, these novel agents can sometimes give longer remissions than autologous stem cell transplants do for some patients. Being chemo free and letting Tim's body get its strength back has been a good decision for us. Wishing you a LONG drug holiday.
Hi Kevin
Just a thought, but you might want to consider rev maintenance for awhile, perhaps 6 months or so, just to see how much it affects your QOL, and to mop up any residual cells that might be hanging around.
Frank
I had a SCT Sept 2011, and have been on Revlimid 15 mg. maintenance now for almost a year. The one thing that keeps me on it is the fear of relapse. I have been in remission for almost 2 years come September. I get my blood work done once a month (I'm taking Zometia to rebuild my bones in my spine)due to continued treatment and monitoring. I hate the yeast rash behind my ears, the itching rash that shows up after restarting the next cycle.
But am proud of your decision with your spouse. My husband goes to every Dr. visit with me and we make all decisions together.
I will keep you in my prayers. Be well, there will be a cure soon, I feel it.
Mary
Kevin,
I have been contemplating the same issues about maintenance therapy. I am on 10mg cycle you described after having had a SCT and being in complete remission. I seem to have chronically low RBC, WBC, platelet and hemoglobin levels that linger just below the normal expected ranges and occasionally rise into the normal range but do not stay there. I do seem to get sick fairly easily with the low WBC and it can be difficult to get over the bugs I get. As I write this I have a 103 degree fever. Even with the low RBC and hemoglobin, I feel better than I have in years, even going back a years before I was diagnosed with myeloma in 2011. I suspect I likely had myeloma for some period of time before it was detected. I cycled the 100 mile Tour of Palm Springs two weeks ago doing my first century ride and skied 4 days at Mammoth where I was able to ski from the top at 11,000 feet to the main lodge without stopping for rest. I had never been able to do that before. I still seem to get hit with bouts of fatigue though, is it drug side effects or just getting older? I do not know how I would be able to tell the difference.
I discussed with my doctor how long to stay on Revlimid, past the two year period that most of the trail studies covered? There is no clear answer. Our plan at this time is to stop after 24 months if I stay stable and there is no change in my status. My thinking at the time is that I possibly may have already extended my remission period after having been on Revlimid for nearly two years, but it may be more beneficial in the long run to not develop drug resistance with long term use Revlimid. I also worry a bit about the 7% chance of secondary cancers from Revlimid maintenance use after SCT that some of the studies found. I believe this was over a two year period, so if one is on Revlimid for 4 years does that probability rise to 14%, and six years would be 21%? I do not know if any knows the answer to this yet. If all goes to plan and I come off Revlimid I look forward to going drug free, except for Aredia every three months. Hopefully the numbers on my CBCs will fall back into normal range and I look forward to seeing how that feels when I am already doing so well even with low numbers. It is becoming easy for me to forget that I have myeloma and that until a practical cure is found and available that I will likely be facing this demon again in the future. Many people I know think I am cured and this is behind me for good when they see how I have been doing despite what I have told them. It would be really hard to go through this again after having a high quality of life and hopefully a long remission.
Hi my name is Vanetta I was dx with multiple myeloma in 2003 I had a autologus stem cell transplant since then I was cancer free now it came back and now Im receiving Kyroplis i think thats the name and today was my 1st dose and I feel good about it, I was in the best of health I played sports. vollyball, softball, baskeball,and baseball on a professional team and I golfed and I am African American, I also worked in the emergency room for 10 years now I work in a psych hospital but I never would of thought that it would come back but now I have support a beautiful husband who hates hospital but he goes with me anyway, so I just wanted to share that with you.
Pam, Jubyanne, Nancy, Snip, Scott, Denise,
I was quite surprised to read the responses from each of you and that you had also decided to go the drug-free route. I honestly thought the majority of people would have chosen maintenance in order to extend their remission, particularly since it seems once you relapse subsequent remissions get shorter. It is heartening to hear that you all seem to hold fast to your decisions and in most cases it has worked out well.
Snip,
My six year estimate for progression free survival was basically a conservative estimate with respect to the medians for RVD and SCT and the factors that can extend survival, such as reaching sCR. My column last August explored this, though more from an overall survival standpoint then progression free survival. Applying similar illogic here, I'm actually hoping I might go as long as eight or nine years, though six seems more realistic.
LizR,
I hope the maintenance goes well for your husband. This a decision each of us needs to make for ourselves, and there is no right or wrong decision, just as you said, a tough one. Glad to hear you and your husband are working through this together. I cannot say enough about having my wife/caregiver is there to support me.
Arnold,
With as much as you've been through, I imagine there have been many tough decisions for you. I agree with you - do the research, make the decision, and don't second guess.
Terry L,
The CRD has indeed been a lifesaver for me. I also found out from my doctor that I was one of only a very few in the trial that were able to make it through the entire study without having to have my dosages adjusted - hopefully that bodes well for prolonging my response. Good luck with your maintenance.
FrankH,
My doctor suggested the possibility of going on the maintenance for three months until my first quarterly check-up, then deciding whether to continue or not. I considered this option, but knew I did not want to continue maintenance for a prolonged period, due more to the risks I mentioned in my column than the QOL, so decided to go drug-free now.
Mary,
The fear of relapse is definitely a big consideration. As I mentioned in my reply to several of the others above, I expected most people would choose to go with maintenance for that reason. I hope you remain in remission for a long time.
Eric,
I have had practically the same issues with cell counts, fatigue, and illness throughout my treatment period. It's only been a week since I ended treatment, but I am already feeling better (except for getting my port out) and I hope to see continued improvement as time goes on. By the way, while staying on Revlimid beyond two years may increase the chance for secondary cancer, I doubt that doubling the time doubles the risk - I wonder if that is being researched.
Vanetta,
Thank you for sharing your experience, and I am sorry to hear that you have relapsed. I hope the Kyprolis (Carfilzomib) works for you, it sure worked for me. As active and athletic as you are, I have to think that will help your chances of handling the treatment and obtaining a response. It's great to hear you have such a supportive spouse - it sure helps as you're going through all this. Good luck.
It is not an easy decision, to make! I have been "drug free" since my SCT transplant June 2010. (did high dose pulsed dex + Velcade as my induction). The maintenence available for me was thalidomide and I just didn't want to keep living with med side effects since I am very sensitive to medications. In the last year and a half I have really been working at getting back into good physical shape (loose the dex weight etc.) I've gotten married, bought a house, came back to work full time, gone to Europe, and just have been trying to make the most of my health. I feel better now then I did for several years before my diagnosis.
Hi there,
I was dx with myeloma in 2011, I had a autologus stem cell transplant at the end of 2011 and I am now in complete response. I chose to do the revlimid maitenance, but my body did not like it! I took 10mg of revelimid for roughly 2 months and I had to be taken off, due to extremely low RBC, WBC and platelets. I am now struggling with low counts, due to the revlimid. Doctor says, there is nothing they can do to help platelet counts to go up. I am on Aranesp to help the production of RBC. Happy to be off that nasty poison, but there are days I wish my counts were normal and wish I would have said no to the revlimid in the first place.. For now, I am cancer free and glad to be alive! Good health and happiness to you all!!!
Lys2012,
It's great to read how much you're life is moving forward - I think being drug-free helps. I hope you remain in remission for a long time. European trips appear to be popular with patients that reach remission. I've read of quite of few, and my wife and I are in the process of planning a European river tour along either the Rhine or the Danube.
Judy,
Sorry to hear the Revlimid caused such issues and that now you're struggling to recover. As I mentioned in my column, the low cell counts and platelets are one of the reasons I chose not to go with maintenance therapy. Does your doctor think this is a permanent issue, or should your counts recover now that you're not taking the Revlimid?
I have been off revlimid since July but am still on Velcade and Dex. I am scheduled to go back to my onclologist on March 11 and at that time will have the latest FLC Assay. I am hoping to have a discussion with him to continue to back down my maintenance. I am hoping velcade once every 3 weeks and the dex down to 8 mg once every 3 weeks. Slowly backing off hoping to lead to drug free. Four years is a long time to be on this stuff.
Kevin, I wish you the best. I sure hope you can stay drug free indefinetly.
Ron
Just a note for Judy above. Your story is almost identical to mine, including the dates! I went on Revlimid 10 mg po maintenance three months after my ASCT; no dex. But I did not have any side effects except for hand cramps and mild neuropathy. Now I am back on active treatment with the BiRD protocol due to rising serum free light chains, and it appears to be working. My CBC dipped moderately, so I started on Thymucin and arabinogalactan powder, which worked great to get all values up, incl. platelets!
I am a doctor, but cannot recommend specific protocols for it. Seeing a certified naturopathic oncologist is a good idea. I am providing this info in the hope of helping you save on adverse effects and costs. Best wishes! Jan
Kevin,
As of right now, my oncologists believes this is how it's going to be for me. I'm juicing, trying immunity based vitamins.. Hoping my body will wake up and try to recover. One option, is to inject my remaining stem cells I have in storage. We have not got there yet, but that my be an option.. I just wonder, if and when the time comes for another transplant, will my body will be able to produce stem cells if its damaged now? I'm trying to be positive and hopeful for now.
Ron,
I agree, four years is a long time. Have you noticed any long-term effects? Also, what is your reasoning (or your doctor's) for staying on the maintenance so long? Had you tried going off it at some point and noticed your counts going back up? Good luck with getting to the point of being drug free.
Jan,
Sorry to hear your FLCs started going up again. Hopefully the BiRD protocol will continue to bring them back down and keep them there. You're mention of Thymucin and arabinogalactan powder was interesting. I am currently investigating natural supplements and not heard of these before.
Judy,
When my oncologist mentioned there was a risk to the bone marrow and its ability to produce white cells, etc. I assumed it was reversible. I did not even think to ask him if it might be a permanent problem. Glad I heard from you, though I'm sorry that you're having the issue. Hopefully you can find a way to the counts back up – Jan's solution may be worth investigating.
Kevin,
Thanks for the response. I have never been drug free. The protocal has been backed down but never zeroed out. The reasoning by analogy is similar to a person with HIV. With HIV a cocktail of drugs keeps the disease at bay but it never completely goes away. If the patient stops taking the cocktail of drugs the disease will likely begin to progress again into AIDS. Similarly, using the cocktail approach, MM is kept in check, potentially indefinatly. The concern I have is the risk to the bone marrow as your oncologist has pointed out. My oncologist says it is a balancing act. Keeping the treatment high enough to keep the MM in check but not so high as to permanently damage the marrow. I am not sure where that balance is. I am not sure anyone is. Logic tells you that indefinatly taking these drugs, even at reduced levels has to have some kind of long term impact. Right now it appears to be working for me but I intend to push for further reductions in the drugs.
Ron
Kevin J and Terry L -
I need to make a decision about joining the 8 month CRd trial for newly diagnosed, untreated MM patients at NIH. I have kidney damage from the MM, but i don't expect the level of damage will keep me out of the trial. Assuming your experience was at NIH, can you comment on how well you were cared for by the team? Also, is there anything you wish you had known before going into the trial. Any other thoughts? Thanks. Don
Don,
My clinical study was through the University of Michigan, and was for newly diagnosed patients with active MM. The study is due to end very soon - I was one of the last few patients accepted into the study. Terry is being treated through NIH in a study for patients with smoldering MM and could provide more information on it. From what I've read, most everybody has only good things to say about NIH. I will send Terry an email about you in case he does not read your posting to my column.
Hi Don K., Kevin alerted me to your post. I am registered in the MB forum under terryl1 and you can send me a private email if you want.
The NIH has two CRD trials...one for newly diagnosed symptomatic myeloma and one for SMM. I am in the newly diagnosed trial. I finished the 8 months of CRD and now am on maintenance. I am doing very well.
The care at the NIH is top notch. They have some of the most advanced equipment, imaging, MRD techniques, etc. in the world. Dr. Landgren, the chief of the MM section, is one of the leading myeloma doctors/researchers in the world. He is also a great guy and spends lots of time with his patients. He gives you his phone number and email address if you ever have a question. He quickly and fully responds. I wouldn't be surprised if he and other researchers at the NCI (NIH) come up with a functional cure sometime in the not so distant future.
I have been very happy with my care there and chose the trial even though, like Kevin, I had a lot of travelling to do. If you have more questions, send me a message. Terry L.
I was taking Revlimid (started at 25 and dropped to 15 mg) for a year in a clinical trial for another type of cancer (Kaposi Sarcoma). I am and am now in the same situation of needing to decide if I should continue in a maintenance mode or take a break. (I have previously done 5 series (a total of 50 sessions) of Doxil in the 4 years preceeding. I have been off Revlimid for 2 1/2 months and am enjoying the absense of side effects (sleep issues, fatigue, etc). Like many of the others here, I was never told that the problems producing white cells may be permanent or that there is a potential to become resistant to Revlimid (though that is probably the case with any drug).
Hi Kevin, such an a relevant post to me, as I have recently come OUT of remission, after "standard" MM treatment and maintenance follow up.
I am considered "high risk" MM, but do not have any bone involvement. I read with great interest your comments regarding various treatment and maintenance options and potential consequences.
In 2010, I had a "successful" experience with Rev(10mg) + Dex(40mg) for 6 months, then 1 IV infusion of Cytoxan preceding my AutoSCT (with high dose Melphalan). I reached CR (complete response/remission) Aug 2010 and opted for 18 months of maintenance Rev at 5mg. All went well and I was taken off Rev maintenance summer 2012.
I enjoyed being treatment free, then about 10 months later, my MM numbers started to rise, then double, and here I am now, back on Rev(5mg) and dex (20mg). Thankfully my oncology team never stopped monitoring me, so the relapse was caught early.
Although my MM #s have decreased since being back on Rev/Dex since Nov 2013, my #s have currently flatlined, so we will be increasing Rev to 10mg in March 2014. Personally, I think if I had been continued on the Rev maintenance, I might not have come out of remission? Who knows! Just my opinion. I actually do fine on the current low dose Rev and weekly Dex.
Wishing you and all the other readers and commenters all the best, and in reading your bio, we're around the same age, and here's an interesting connection, my dad was an aerospace engineer too (worked on Apollo 8 back in the day)
Thanks for a great column!
Julie
I was diagnosed in Sept 2013 at 63, had a dex Velcade induction and am in complete remission, but have moderate to severe neuropathy in my feet. (Taking gabapentin 2400 mg daily) Next week I am starting the routine for stem cell collection. Although I am supposedly a good candidate for ASCT and I have read most of the articles I can find on ASCT I am not convinced it is worth the expense or the benefits although my husband disagrees with me. I will have him read your article though. I couldn't determine if you had an ASCT or not. I guess I am still weighing pros and cons to ASCT and the fact that with or without it you would still be on REV maintenance. Can anyone shed a bit more info or guide me to more sites to help?
Bridgett:
Please review the Mayo Clinic "Stratification of Disease/Treatment protocol for MM". It came out in early 2013 (?) , and it provides some valuable insights into the stem cell debate and treatment options.
I was Dx'd in May 2012. Went thru Induction w/ Velcade /Steroids. I later donated and/or collected (Aphoresis) enough SC's for 4 ASCT procedures, but they are frozen. I declined ASCT "upfront", and am on Revlimid maintenance, and I'm doing well (VGR), 0.2 M Spike ... or less, for a year.
Gabapentin never worked well for me, despite high dosages. Elavil (amityptilline) works much better for me (off-label use). Velcade induced PN is a ... real itch!
Good luck.
R
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