Pat's Place: A Myeloma Patient’s Reflections On Maintenance Therapy
More and more studies are showing that using maintenance therapy after a patient achieves a complete or very good partial response delays progression of multiple myeloma.
In this case, disease progression is the amount of time it takes for your multiple myeloma to return after it responds to treatment, also frequently called relapse. Maintenance therapy can be used following a stem cell transplant or after using novel therapies during the initial phase of treatment.
The jury is still out whether maintenance therapy can actually extend a patient's life, but delaying relapse is becoming pretty clear.
This should be good news, right? It certainly is good news that using thalidomide (Thalomid), Revlimid (lenalidomide), and/or Velcade (bortezomib) over an extended period of time is now proven to slow the return of multiple myeloma in a majority of patients.
Not so fast, though! Until the use of these drugs proves to extend my and my fellow multiple myeloma patients’ lives, what should we do?
I bring this up because I am hearing from a number of other patients who are resisting this shift to maintenance therapy as an ongoing treatment for multiple myeloma.
Some argue the greater toxicity from extended use equals negative side effects, which can lead to a poorer quality of life. And since it doesn't extend our lives, why take the risk? Not to mention that even with good insurance, maintenance therapy adds to the cost of our cancer treatment.
Others feel maintenance therapy studies seem biased. After all, they are sponsored by drug companies that could profit greatly if this becomes the standard of care.
When I was first treated in 2007, maintenance therapy was new and unproven. The suggestion by my medical oncologist that I stay on Revlimid—whether or not I underwent a stem cell transplant—is a primary reason why I decided not to transplant at that time.
My thinking was simple: Why go through the pain, discomfort, and risks of a transplant if I still needed constant chemotherapy afterwards?
But the choice of whether to use maintenance therapy doesn't just apply to post-transplant patients. Maintenance therapy is also being recommended for those who stabilize their myeloma without transplantation.
When—if ever—can myeloma patients stop their monthly treatments?
And if we choose maintenance therapy, how do we know it’s actually working? Who is to say the myeloma wouldn't have stayed dormant without maintenance?
Despite agreeing with all of the above arguments, I have chosen to stay on a reduced maintenance dose of Revlimid indefinitely—forty months and counting. Why?
First, because my insurance continues to pay for it—at least for now.
Second, although I do have some negative side effects, for me they are a small price to pay for the peace of mind I get, knowing I am doing everything I can to fight my cancer.
Which brings me to my final point: Who among us has the guts and determination to voluntarily stop maintenance therapy, unless there are money or side effect issues to consider? Who is willing to take the chance that their multiple myeloma will return sooner without monthly maintenance?
Some are, and I applaud them. But I guess not me!
It’s no wonder many of my fellow patients resent maintenance therapy. Many resent being forced to make such difficult decisions. They resent the cost, and they resent the inconvenience if they choose continued treatment.
But multiple myeloma therapy isn't like traditional chemotherapy our parents experienced during years past. For most of us, it isn't as toxic or uncomfortable as our fellow cancer patients must endure—even today—when battling solid tumor cancers like breast, liver, and lung cancer.
I prefer to think of this dilemma as a positive one—another treatment option for myeloma patients. Stay on maintenance, or don't stay on maintenance. Do whatever works best for you. Because without clear cut proof that using it extends our lives, this isn't a life and death issue—it’s a quality of life decision.
Feel good and keep smiling! Pat
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Maintenance therapy is the "new theory" in treatment of cancers in general, including tumor cancers. Our "at-home maintenance" oncologist/hematologist is dead set against any maintenance chemotherapy treatment. His opinion is also a "theory".
For us I think it was more about this utopian idea that we would be treated (SCTs at Little Rock) and go back to our life. It isn't about any of the things you mentioned although, we certainly discuss them. Its really, for us, more about still having to take pills, still having to recover from fatigue, edema, constipation, having a port in his clavicle, etc. Its really more emotional for us. Dave can't distinguish between a vitamin, an antibiotic, aspirin, or revlimid. To him its just another damn pill and he can be very angry about it at times. Once we were able to work through the emotional issues of, "WHAT? We aren't DONE!", we have been able to deal with it all much better.
As with most things Myeloma, the jury is still out, like "Twelve Angry Men", only we don't have Henry Fonda! However, we do have other heroes and thank god for them.
Its a dilemma for some of us deciding to do maintenance therapy. I have talked with so many people that had such a hard time with Velcade, Revlimid Dex etc. that in their minds the treatment was worse than the disease. Since I have to continue to work during treatments my decision not do maintenance was not based on how I felt physically with Revlimid but with how I felt mentally. When I was on Revlimid I felt fine but discovered that I was mentally way off. Too many things to mention here but I discontinued the use of Revlimid and had no further problems. My Oncologist and I chose instead to montor the disease as closly as possible. We check most everything every 2-4 weeks and look at the bone marrow about once per quarter. My first transplant was 7 years ago and at that time the standard treatment was Thalidimide and Dex followed by high dose chemo and transplant. I guess the bottom line for me is that we will monitor the disease and at the first sign that its active we will then begin treatment and hope that this was the right path.
After six months of Velcade I went into "Smoldering Remission. Therefore, the Dr decided since I was in remission, no need for a stem cell transplant. It has been a year and a half, I am still in remission with NO maintenance program and NO transplant. However, as we all know, it will more than likely return, but at least so far, I have been given a year and a half without receiving treatment of any kind. I am retested every two months and for some reason, I have been fortunate to continue to stay in "Smoldering Remission.
Thanks to all for your comments--very helpful! Lori, Dave gets angry about having to take more pills. Understandable! I'm angry that our myeloma docs don't know what works best and why--or when. When to take maintenance therapy and when to rest. When to best transplant. When and how to best use consolidation therapy. Worst yet, they leave the responsibility up to us. Isn't that their job? Pat
VERY thought provoking article, Pat.
Next week will be my 1 year anniversary of weekly maintenance therapy. My protocols call for 2 more years of a Velcade (2mg) infusion every Wednesday, 20mg of dex on that day and a regimen of 15mg of Revlimid (21 days on/ 7 days off). I also take daily coumadin, magnesium and phosphorus supplements, a multi-vitamin and occaisonal pain meds for vertebral issues not yet resolved.
Not many side effects: insomnia, handshakes from the dex on the day after. I've learned to take the dex when I go to bed, seems to work best for me. The Velcade, I presume, has continued to give me, very mild PN- toes and fingers. Also just below normal RBC counts. Should I reduce the bortezimib b/c of mild PN? It'll be one of my questions for my next 3 month check-up in mid Nov. My quartely Zometa infusion (4mg) seems to have produced none of the flu-like symptoms commonly reported. Low platelets ~ 70k from the Rev, I'm told.
If I didn't continue maintenance I think that I'd be a bit nervous about deviating from a plan that seems to be working well. I've mostly created entertainment for the last 25 yrs or so tand it's easy for me to see what the affects are when I take a umusical number out or change a costume, etc. But stop VDR & Z with no glaringly obvious problems? Love to know how low my dosages and frequencies could be. Call me a chicken.
I even like seeing my CMPs, chemistries, etc. from the weekly infusions & monthly SPEPS & UPEP from my specimens sent back to Little Rock. Show me the numbers!
Thinking about long term consequences are what makes my head spin at night. Oh, and the extreme COST of everything, don't you know?! Like you, I'm looking foward to good data. I guess that'll come from outcomes from folks like you and me and our MM warrior friends.
Thanks a million for asking the tough questions!
The answers aren't clear Pat, that's why a good doctor will give you ALL the options and maybe their opinion, but they can't tell you how to best proceed with all the uncertainties in what works and why it works for some and not others. Again, the patients of 10 years ago would think we are mighty lucky. But I empathize fully with your sentiments.
I'm 5 years post-SCT this month and have had no maintenance therapy for most of that time. I tried Dex as mainteance but had to quit due to mental side effects that kept me from being able to work effectively. I still have measurable disease, but it is only gradually coming back up and so it is not time to hit it again with the big guns. I am very comfortable with the "less is more" theory of treatment. MM mutates like the Borg and what doesn't kill it makes it stronger. I take a great deal of comfort in hearing about all of the different treatments that my particular disease hasn't seen and then mentally multiplying each one by the 3-5 year remission I hope to get from each when the damn thing starts to make another serious run at me. In the mean time I enjoy the lack of drug side effects. I also don't mind so much that the jury is still out in the mainteance vs no maintenance question, because that way I don't feel a need to second guess my choices.
I am following this with SERIOUS interest. I have been struggling with this decision since my ASCT April 2009. I have completed 18 cycles of Revlimid 10 mg 21 day cycle.
Lets put the money issue aside for a moment. Lets just talk about the chemo itself.
I can't decide if this is the "magic" pill or the one that's going to take me down eventually. I had a meeting with my oncologist a couple of months ago to discuss why I am still on REV vs someone like Kathy Giusti who no longer takes it for maintenance, and others (I don't want to name them right now but one is famous). My biggest issue was if Kathy Giusti doesn't think it's right to take it, then why would I think it's right. So does anyone know the real answer to that question?
The response was, and I believe this is true, that my MM was extremely aggressive and the doc was concerned that if I went off REV, it may not be controlled next time. I had started first in a clinical trial and didn't make it past the 2nd month. Velcade, dex, Doxil, etc. We had to go back to the "old" style nasty stuff DPASE for 2 sessions, 24x5. This was followed by ASCT. I have remained in remission since then.
The explanation given is one worth mentioning here. Each of us is individual, and we have different forms of MM. For example, I am IgG Kappa myeloma T4:14 positive. The other thing worth mentioning is that while I was in the clinical trial, they obviously tested me thoroughly 3 days a week and when my MM returned, it did NOT, I repeat NOT register in blood or urine. I just got a new tumour in my back that grew faster than anyone expected.
I would also like to make the point that I am in one of the best hospitals in the world, and in my opinion, I have one of the best doctors in the field. I'm not just talking about personality; it's also the research in which they are involved, papers published, thorough, understanding, never rushes me, willing to discuss anything any time, and the list goes on. So I trust her.
Having said that, of course, the details above make it clear that we don't have enough data. But we have to admit - we've come a long way baby!
So here's my thought. Until we find out otherwise, I am working on changing my ATTITUDE. I think attitude plays a major role in our healing anyway, but in this case, I need to learn to believe that this pill is keeping me alive so I can enjoy my kids' weddings and maybe even grandchildren.
I would love to get off REV, but my thought is as follows. Each of us is so unique that only we and our onc can help us determine the solution that is right for us. Even then, they can only do their very best. The challenge of course is that making a wrong decision may result in it being our last major decision.
Please keep this discussion going. I need to hear any and all info on this because I'm also seeing an ND and he feels that until I'm stronger, I should stay on it anyway. My body is working to recover from the ASCT even 18 months later. I want to have all my thoughts organized and data in place once I know my body is strong enough. Then, and only then, will I consider getting off my "magic" pill.
In the meantime, seeing an ND that has the equipment to measure your blood and other fluids is important. They can assist to mitigate the side effects, while ensuring you don't take anything that will counteract REV and/or stimulate your immune system which would be counterproductive. Mine is VERY conservative and won't prescribe anything unless he is 100% certain that there will be no problem with that.
Ok - nuff said for now. Please Please Please keep this subject top of mind. We all need to know how to handle this important life and death decision. The more information we have, especially from people that have experience with REVLIMID, the better we can help each other.
I'm also willing to design a GOOGLE form to enable us to maintain a simple chart (private of course) of data so we can better monitor our group's results. For example, for those above that chose not to take maintenance therapy, what good is that if we don't know what type of MM they have. I would even like to know what other things they might be doing such as juicing (I do that), supplements, curcumin (like Margaret whom I adore though we have never met) etc.
Pat, let me know if you want to work on something like that. I think it would be awesome to have such data at our fingertips since we all plan to live for another 40+ years, we could be good test subjects
Wishing you all health, vitality, and long life,
Your MM buddy,
h
Wow! I'm out of touch traveling for a day, I come back and look at all of these great reponses! Let me unpack and get settled in--then I can respond more carefully. Great comments, all! Pat
I just mentioned I had been traveling. I was speaking to a support group in Pennsylvania. We talked about maintenance therapy some. I can share this: Overwhelming feeling of the group was not pro-maintenance. Not scientific. Not even necessarily right or true. But no one wants to believe there is "no end in sight." No one wants to learn (like a diabetic, for example) they will need medication for life. But that is the direction our cancer therapy is heading. Like Lori said, "the patients of 10 years ago would think we are mighty lucky." Just what I said, Lori: " I prefer to think of this dilemma as a positive one—another treatment option for myeloma patients."
But as the Rolling Stones sang, "we don't always get what we want!" Taking long meds long term sure beats the alternative!
I understand Jan's point that there is an advantage to all of this:
"I also don’t mind so much that the jury is still out in the mainteance vs no maintenance question, because that way I don’t feel a need to second guess my choices."
This is a great attitude to have--but I still would like to see more data to help point us in the right direction.
Take a moment to re-read Sean's comments. His feelings are well thought-out and ring true.
Hanna, let me re-visit your ideas tomorrow. Thanks for reading and taking the time to contribute everyone! Pat
I was diagnosed stage III M/M in in aug. of 07 after tandem stem cell transplants I went into remission. I have been on monthly treatment of valcade and salumetdral. So far so good. My protein levels remain very low. I would not stop them. I know the longer I live, the better the chance for newer treatment to be developed. I do feel that these monthly treatments will add to my longevity. I am very lucky to have a "super doctor" on the cutting edge at Northwestern Mem. Hosp. in Chicago.
Jake-
Most myeloma experts would agree with you. I'm still going to go "cold turkey" and not use maintenance after my upcoming SCT.
Only thing that could change my mind is if SCT doesn't place me into CR. Then, after I get over my disappointment, I might reconsider.
Your choice is a great one--and I'm glad you are committed and feel good about it! Pat
The jury is still out -- however, to me, the point/purpose of a stem cell transplant is to get OFF treatment & let the body heal, let the immune system work again. I realize that the B cell has myeloma being put back in even after pre-treatment, but it will take awhile for the myeloma to reach a critical stage for treatment again. The myeloma expert where I am planning a second ASCT this summer is suggesting "interferon or velcade weekly" maintenance. I don't agree at all, & will forego anything if he is predicting a "18-24 month" time off. I would rather enjoy my freedom from the hook ups once a week. There is no significant data that says any maintenance will extend life. Just give you a few more months MAYBE to time to progression. Everyone's different & the genetic markers MAY determine each patient's story after transplant. Suzanne
Interferon? Is the guy a witch doctor? Velcade weekly is standard of care. So is thalidomide or Revlimid at very low dose. No dex. I'm not a doctor, but agree with your plan--and your reasoning is sound. Good luck, Suzanne! Pat
Pat: Just reread this post, since we will consult with my honey's oncologist next week to determine the next steps. Bob was diagnosed 10/7/10 and on 4/7/11 (exactly 6 months), we got the wonderful news that he's in remission!
Bob will not undergo a SCT. It would be great if he could have a few months without treatment - but he'll do whatever the good doctor suggests. Anything that will keep the beast at bay, we'll be willing to work with.
He has had minimal issues because of the Velcade/Dex (other than neuropathy).
Just keeping our fingers crossed for many, many months of remission.
Thanks for keeping us informed!
Sarah
Sarah-
I'm so happy for you and Bob! Best of luck and let us know how things are going from time to time- Pat
I decided to search the internet for information about maintenance therapy and am happy that I found this site. I absolutely hate the way I feel while taking Revlimid. In fact, I feel as though I am swallowing death each time I take a pill. I am seriously considering discontinuing the maintenance therapy. Revlimid makes me feel hopelessly tired. No amount of rest or sleep improves the symptoms. My mind races and I experience endless thoughts of hopelessness and futility. I have severe abdominal cramps as well, The symptoms begin within 24 hours of beginning the Rev and continue for about 48 hours after I stop the med. My dose has been decreased from 25mg to 15mg and now I take 10mg. The physical symptoms have decreased with the decrease in dose but not the emotional/psychological ones. I have taken zoloft in the first year of my dx. Zoloft helped the depression but blunted all my feelings. After a year, my local onc and I decided to taper the dose and stopped Zoloft all together. I have done well for about a year as far as depression goes.
Generally, I am a positive, up beat person. Before MM, I had endless energy, ideas and interests. My work required long stressful hours(high risk OB) and I loved making a difference in the lives of women and their families - even if the outcome of a pregnancy was heartbreaking. I do not work now as my compression fractures of the spine prevent me from sitting or standing for prolonged periods of time. My pain is controlled by fentanyl patches.
I do not have a close relationship with my oncologist at Mayo. He knows the literature regarding MM but has no compassion. He is defensive in his approach to questions. It would be so much more helpful to feel that he and I were in this fight against MM together.
Mike wrote in Nov 2010 that he was "mentally way off" but did not elaborate. I would really like to hear from him and others about their emotional/psy concerns with Rev. There is nothing listed on the inserts included with the drug or on side effect web sites. Sorry for the long comment. Paula
Paula,
We're very sorry to hear you aren't feeling well on Revlimid and hope your doctors are able to help you develop a treatment plan that doesn't cause these feelings of hopelessness.
You may be interested in reading one of the discussions in the Beacon forums about Revlimid side effects:
http://www.myelomabeacon.com/forum/side-effects-of-revlimid-as-maintenance-drug-t172.html
A few other people have mentioned depression and have wondered if it is linked to Revlimid.
Feel free to share your story there as well. Hopefully some people can offer helpful suggestions.
Paula-
Are you taking any dexamethasone along with the Revlimid? Just checking. If yes, drop it! If not, maybe add a bit of dex and drop Revlimid to 5 mg and maybe go 14 days on/14 days off.
I'm not a doctor, but if my therapy was for maintenance only, why not stop? Let me back-up. Find another oncologist. It can be at Mayo. Ask to be re-assigned. They will do that for you. I would consider saving Revlimid for an RVD type combo when your myeloma becomes active again and/or your numbers start to move up sharply. The good news is the Revlimid is working! I so understand how you feel, but if life isn't worth living, it is definitely time for a change! Get help! Be assertive! This is YOUR precious life we are discussing here! Good luck and please keep us updated- Pat
Paula,
Hang in there. Nothing wrong with finding yourself an oncologist with more compassion. You need a great support team starting from the top on down. Look into it. We need you to be strong and positive. We are all in a fight here that we must overcome and win. I don't know you personally but I know what your feeling. Be strong,have faith and think positive. You have my total compassion.Your life is very precious,don't ever forget it.
Nelson
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