Mohr’s Myeloma Musings: A New Chapter - Maintenance Therapy
There are several analogies that are used to describe our experiences living with multiple myeloma. The most common appear to be a battle, a journey, or chapters in a book.
The analogy that currently resonates the most with me is the one of chapters in a book.
The titles of each chapter of my multiple myeloma book are pretty obvious: Diagnosis, Radiation Treatment, Watch and Wait, Induction Therapy, and Autologous Stem Cell Transplant. The next chapter of my book will be entitled ‘Maintenance Therapy.’
In this column, I would like to share how I came to the decision to start this new chapter.
In my January column, I explained that one of my New Year’s resolutions regarding multiple myeloma is to become more educated and knowledgeable about the disease. I applied this New Year’s resolution when deciding whether to start maintenance therapy or to go treatment free until the inevitable relapse.
Before I began my study of maintenance therapy, I came up with five questions that I wanted answered by my independent study – and by my doctor – before I made a decision:
- Will maintenance therapy prolong time to relapse?
- Will it prolong life expectancy?
- How will it affect quality of life?
- What is the risk of secondary cancers?
- How long will the treatment last?
Taking this approach is quite new for me. In every decision I have made since my myeloma diagnosis, I followed the path my doctor suggested for me, with very few questions. And why wouldn’t I? Using a sports analogy, my doctor has pitched a perfect game in treating me. It was his persistence and diligence that led to my diagnosis. Through the various chapters described above, everything has worked as planned.
What motivated me to take this new approach is the fact that I have been treatment free for nine months since my autologous stem cell transplant last June. This treatment-free period was supposed to last six months. However, a bout with pneumonia at the end of November, followed by an allergic reaction (in the form of a rash) to the pneumonia medication – which lingered for six weeks – extended the treatment-free period. In any case, my myeloma numbers at each three-month checkup since June have been good. I feel great – better than I have felt in three years.
Naturally, the question that came to my mind as I approached the potential start of maintenance therapy in January was: Why is any treatment necessary if I feel good and my myeloma numbers are good?
Little did I know how difficult the searching and processing of information on maintenance therapy would be for me. This is due to three factors.
The first is my lack of interest in science-related topics – spurred undoubtedly by my poor academic performance in any science class I ever took.
The second factor is the fact that there is so much information on maintenance to consume and process. For someone not used to reading such material, this is not an easy task.
And last but not least, there is the fact that, as always appears to be the case with multiple myeloma, there is currently no consensus among myeloma experts on so many issues associated with maintenance therapy (if and when to start maintenance, which drugs to use, how long it should be administered).
I struggled through dozens of articles before meeting with my doctor for a three-month checkup earlier this month. After doing this research and meeting with my doctor, I was able to answer the five questions I listed above about this potential new chapter in my life with multiple myeloma.
I will begin maintenance therapy this week.
I have no doubt that maintenance therapy will prolong my time to relapse. Most of the literature I reviewed shows that time to relapse nearly doubles in patients who undergo maintenance therapy compared to those who choose not to.
Less certain is whether maintenance therapy prolongs life expectancy – which, by the way, confuses me. If maintenance treatment prolongs time to relapse, and one has to relapse before dying from the disease, doesn’t it logically follow that maintenance therapy prolongs life expectancy? Perhaps this is far too simplistic an approach, but I’m going to side with those studies that suggest there is a prolonging of life expectancy.
The quality of life question was important to me. Nine months without suffering from neuropathy and other side effects that can occur while on Revlimid (lenalidomide) and dexamethasone (Decadron) have been wonderful. The fact that my Revlimid dose will be reduced from 15 mg to 10 mg, and dexamethasone will not be a part of the treatment, eased the concerns I had about quality of life issues, despite increased risks of low blood cell counts and infections.
I also like my odds as far as the increased risk of a second cancer from Revlimid goes. Studies I looked at – which my doctor confirmed – show that the risk of second cancers lies somewhere between 5 and 7 percent. As an old basketball coach, I think about these odds in terms of a sports analogy. If you put a player on the floor who only shot 7 percent from the field, I wouldn’t guard him and would turn my attention instead to defending far more dangerous players.
The answer to the question of how long I would be on maintenance therapy was the one I feared most. The reality is that it could very well be for the rest of my life, or “until the risks outweigh the benefits,” as my doctor put it. A sobering thought considering the toxicity of Revlimid.
Finally, my confidence in my doctor and his team at the cancer center weighed heavily in my decision. I spoke previously about his success in treating me, and I would have a hard time disregarding his recommendation based on that record. The fact that my cancer center is a well respected cancer research center also factored into my decision.
So this new chapter in my book has just begun. Hopefully, it will be a lengthy one, with little of interest to write about, because the topic of the next chapter is likely to be the dreaded but inevitable relapse.
I realize that there seems to be little disagreement in the myeloma world about the heterogeneous nature of the disease. As a result, a one-size-fit-all treatment approach does not work in multiple myeloma, and treatment therefore varies significantly among myeloma patients.
I nevertheless would be interested in hearing how others arrived at their decision about whether or not to undergo maintenance therapy.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
For those interested in reading other Beacon patient columns and news articles on maintenance therapy, you can find all of them at this link.
Also, maintenance therapy is a frequent topic in the Beacon's discussion forum, and you can find a link to most of the forum discussions on the topic at this link.
Steve,
Good luck on the maintenance. I did not have a SCT but did induction-type chemo with Velcade, Revlimid, and dex [VRD]. I am on maintenance now with VD once every two weeks. With me, since I did not have an SCT, the original protocol was gradually backed down to what I am on now.
I have had continual treatment for 6 years, but it appears to still be working. The dex was and is the biggest one causing me side effects, but, at 8 mg once every two weeks, it is not that bad. I am still extremely active and intend to do some serious biking this year as well as a trip to Italy. I still work full time, so I find that I can handle the maintenance without any major lifestyle disruptions.
With just the oral Revlimid, you should have minimal lifestyle impacts. You might notice some fatigue, and you will have to watch out for rashes, but, other than that, the side effects should be rather minor.
Ron
Steve,
This article is very timely for me, as I am beginning my maintenance regimen tomorrow. I had my SCT in October, but, unlike you, I always knew I would have to do maintenance, although I could have opted out, which would have been against my doctor's recommendations. I have the chromosomal abnormality 1q21, so it is generally recommended by most experts that I participate in a maintenance program. Mine will be Velcade twice monthly, 5 mg Revlimid on a 21-day schedule, and 12 mg dex with the Velcade. According to my myeloma specialist, he would like me to continue with the maintenance for 3 years, if I can, and if I do not relapse within that period.
I am nervous about starting with chemo again, just as you are. Even though the dosages are reduced, I know it will have an impact on my body, and I hope I can tolerate it. I am just starting to feel somewhat like myself again after the SCT!
I wish you lots of luck with your maintenance, and that you have few, if any, side effects. I also hope you continue in your remission for a very, very, long time!
Hi Steve - I wasn't on what was called 'maintenance' therapy after my SCT, but, since I was not in a complete remission, my doctor suggested I take a low dose of Revlimid (without dex). From 15 mg, which I could not tolerate due to neutropenia, down to 10 mg, and eventually to 5 mg.
Because of low platelets and WBC, sometimes I took a 2-week break on the 3 week on / 1 week off cycle. Also, if we were going to be out of town, I could take an extra week off. I stayed on Revlimid for one year. After that, I was not on any chemo drugs from April 2011 to October 2014, a term of 3 and 1/2 years.
I think that the low dose of Revlimid did help me to have a longer remission. Revlimid was newly approved here – I was in the first cohort of patients to take Revlimid outside of clinical trials (and I did know people taking it on clinical trials at that time, and they thought it was a good drug, so that influenced my decision to take Revlimid).
Best of luck with the maintenance therapy. It sounds like you did a lot of good research before deciding on this route of treatment.
Steve, I have been on maintenance Revlimid (5 mg, 21 days on / 7 days off) without dex for five and a half years following an ASCT in April 2009, and I am still in CR.
I was at the very beginning of using Revlimid as maintenance, receiving my treatment at M.D. Anderson. I began on 10 mg without a break, which I think was the standard of practice at that time. After seven or eight months, the Revlimid dose was lowered to 5 mg, 21/7, because of neutropenia.
Over these past years, I've had the usual suspects of side effects - low blood counts, diarrhea, aches and pains, and, for the last two years, a $500 a month co-pay as I'm on Medicare now. However, I'm grateful for Revlimid. My oncologist does allow a break from it now and then when my husband and I take foreign trips.
I sure wish you the best. Lovey
It has been 5 years since my husband had his stem cell transplant. The last 2 years he has been taking dex. Initially, it was every 4 weeks - 4 days, 5 tablets a day. A few months ago, his doctor dropped the treatment to every 6 weeks, 4 days and 5 tablets a day. He is in complete remission and his doctor said that you cannot detect anything wrong with his blood. He does have side effects from the dex, but they are manageable.
Ron - You are right in predicting problems with rashes. I initially started maintenance treatment at the end of February, but a pretty significant rash developed on my back, so we backed it up till it was able to get cleared up. Interestingly, I had no rash issues with Revlimid during induction therapy. Have fun in Italy!
Ellen - I find it interesting how different the treatment regimens are, whether it be induction therapy, SCT, or maintenance therapy. Good luck to you in your new chapter!
Nancy - I can only hope that, like you, I can eventually get to three and a half years of being treatment free. I appreciate you sharing your experiences, as I consider you one of the veterans of The Beacon who always has pertinent comments to share that we can learn from.
Lovey - I am really interested to see how my body reacts to Revlimid alone without dex. Induction therapy for me was turning into quite an ordeal until my doctor cut the dex dosage in half. I hope your manageable situation continues.
Marett - Wow, I can't imagine taking dex for four straight days based on how I reacted to once a week. I think my family would have committed me to a padded room. Just goes to show that there are, as the saying goes, "A lot of ways to skin the cat" with this disease.
I had my auto SCT back in February of 2013. A few months after that, I started Revlimid maintenance - 10 mg/day, no dex. I went on it because my doctor suggested it and I hadn't really looked into the risks / benefits at the time. I initially had some concerns over the secondary malignancy issues, but ended up looking at it the same way you do, Steve. Also, I remember reading some study indicating that the greatest risk of secondary malignancy was for patients who'd been on both melphalan and Revlimid. The only melphalan I had was the one dose given immediately prior to the SCT, so I figure (or hope, at least) that my risk is lower than the 5 - 7% you mention.
I was also on Revlimid for induction therapy and had had no ill effects from it during that time, so I was confident that the 10 mg dose was not going to cause much in the way of problems. It hasn't so far, but I know that could change at any time. If it does, then I expect that we'll lower the dose, or I'll go off of it completely, and continue – as we all do – to hope for the best.
Aloha Steve,
Although I didn't have the ASCT, I have been on maintenance now for 10 months. I take 10 mg Revlimid and a different steroid, called methylprednisolone (8 mg every other day), that I seem to tolerate better than dex.
The regimen has been keeping my numbers in control, but not lowering them. I am able to continue my life relatively normally, but there are some irregular gastro troubles, chemo fog, and fatigue.
The side effects for me seem to come and go without the ability to predict. I wish I didn't have to take them, but it is keeping me going. That is what I am ultimately after.
Best of luck to you!
Aloha
Tom
Steve
Thank you! For three years now I've been trying to understand the exact same question you posed:
"Less certain is whether maintenance therapy prolongs life expectancy – which, by the way, confuses me. If maintenance treatment prolongs time to relapse, and one has to relapse before dying from the disease, doesn’t it logically follow that maintenance therapy prolongs life expectancy? Perhaps this is far too simplistic an approach, but I’m going to side with those studies that suggest there is a prolonging of life expectancy."
As to maintenance, I did my SCT in June of 2013 and was placed on Velcade only (because I'm 17p del) within 6 weeks. I improved from a VGPR just following my SCT to CR, with no M-spike measurable, within 3-4 months. By January or February of 2014 we had twice lowered my Velcade dosage, and then in February discontinued it altogether – not due to adverse reactions, but because I was getting such great results.
I have been myeloma med free ever since. From my initial diagnosis in January of 2013, through my induction period, and post SCT, I have remained a statistical anomaly. Obviously I hope to remain so, but I am also a realist. Statistics have a way of catching up with us sooner or later.
Aloha
Daniel
Thanks for another column, Steve. Like many of us here, I appreciate the time you take to share the chapters of your myeloma story with us.
About the time-to-relapse and overall life expectancy issue that you raise in your column, and which Daniel mentions, here's what I think is the way to think about it:
Your typical myeloma patient doesn't just relapse once. There is an initial relapse, a second relapse, a third relapse, etc.
Maintenance therapy can extend the time to the first relapse, without affecting life expectancy, by shortening the length of the later relapses.
In fact, this is what you see in most of the results for studies testing maintenance therapy. The time to first relapse is increased, but the time between the first and second relapse is decreased, and I suspect you would see the same thing when you look at time between second and third relapse, etc.
Basically, what you gain in the length of the first remission eventually gets lost by drops in the length of later remissions.
This doesn't mean maintenance is a bad idea. But it's how maintenance can increase "progression-free survival" without increasing "overall survival", to use the language your find in articles on the topic.
Steve, you said: "Wow, I can't imagine taking dex for four straight days based on how I reacted to once a week."
My husband hates taking dex. He tried the once-a-week dosage and went crazy. He felt like he was dexed all of the time. 4 days every 6 weeks allows him to live medication free for about 5 weeks. He takes about 4 days after to get over his initial 4 days. After this, he can sort of forget he has myeloma.
Mike F- It appears as if our situations are exactly alike, and I am buoyed by the fact that your maintenance therapy is going well. I think your comment "could change at any time" is very descriptive of what is always in the back of our minds with everything having to do with living with this disease.
Thomas - I am interested to see if chemo fog returns, as it was the side effect that disturbed me the most during induction therapy. Do you attribute your chemo fog to Revlimid or methylprednisone? I enjoy your columns.
Daniel - I hope your being being myeloma med free continues for years. Unfortunately, I think your statement of statistics catching up with us is true. Using the analogy I used in my column of the 7% shooter, on some nights, they end up shooting like an all state player.
Cheryl G - Writing these columns is truly enjoyable and somewhat therapeutic. Your explanation of time to relapse and overall life expectancy makes sense and is one that I didn't pick up on in my research. Thanks for clarifying!
MM patients are generally all surviving longer now, due mainly to the novel agents, than they did 10 years ago. Maintenance is primarily done with Revlimid, one of those novel agents. Sometimes dex is included but not always. I am getting a sense, in my reading, that many oncologists are moving toward triplet drug maintenance such as VRD, but at lower doses and longer intervals. The thinking is that MM has a harder time overcoming a 3-drug protocol than it does a single agent. This is all theory but it does make some sense. The 3-drug protocol has to be weighed against the toll it may place on the body. Can the body adapt to it or will it have a negative long-term impact on the immune system? These are questions that have to be considered.
I just started Revlimid maintenance March 9. Seems weird to be taking chemo again when ASCT was successful with the reaching of a complete remission. My doctor has stated that is will go on for 2 years as tolerated. This article and all the comments are very timely for me. I am so glad that the Myeloma Beacon is available and I have a group of people that understand this type of cancer and speak straight from the heart. My friends and family really believe that complete remission means cured and are not willing to acknowledge relapses and so this makes it very difficult to have the hard discussions about MM with people that I am close to. So I am glad to listen and learn from people that have been there and know the emotional impact of the diagnosis along with the impact of the disease and treatment on the body. Thanks for being willing to share.
Steve,
The way in which I arrived at the decision undergo maintenance therapy with my oncologist was essentially the same as the tough process you went through and came to the same conclusion as you did.
I started out on 10 mg Revlimid and stayed on that for about two years. Then I had a positive immunofixation lab result. My dosage was upped to 15 mg, which I took a few months, but went back to 10 mg because I was getting sick a lot. Then, early last year, my kappa free light chains started rising and the dosage was upped to 25 mg with 40 mg of dexamethasone, which sent my kappa free light chains back down to the low end of the normal range in just one cycle. Today I am still on 25 mg Revlimid and have been for about a year. I have not been getting sick as easily as I did earlier when I was on 15 mg, which really surprised me. Maybe my immune system matured some more. I went off dex in January because of increasingly difficult side effects.
I have tolerated Revlimid better than most people. I climbed Half Dome in Yosemite Park on 10 mg Revlimid. I have been on 25 mg for nearly a year now and never had the rash a lot of other people describe. Fatigue has been my biggest challenge, and I see the effects of Revlimid in my CBC lab results. It is normal for me to have low RBC, hemoglobin, platelets, lymphocytes and especially neutrophils. Just this month, the neutrophils count has become a problem. Two weeks ago, my level was 675/mcL, which is moderate neutropenia, and my Revlimid prescription was not renewed for the next cycle. Normal range according to my lab is 1,800/mcL to 7,700/mcL. I retested after my usual week off and the level only went up to 825/mcL. Still not high enough to start the next cycle of Revlimid so I am off for a second week. That has not happened before. In the past my neutrophils counts came up more than that after a week off.
For the last three months, I also have been having nucleated red blood cells, with levels varying from 0.1% to 0.5%. At the same time, my kappa free light chain has been going up again. It looks like Revlimid may have lost its effectiveness and I will be switching to another drug or probably adding dex back in, at a minimum. I will be meeting with my oncologist at the end of this month to go over all this and what it means. I am really curious about the nucleated RBC. For the longest time I had none. Then occasionally I would get 0.1%. Now for them for the last three months they have been on every CBC.
I hope your new chapter starts out as good as mine did. It is good to hear you have been doing well after the rough time you had during your SCT. I read your past post about how ambitious you were getting back to your normal routine after you were discharged from the hospital. I could not believe it. You are one tough guy.
Ron - I find it interesting how the different regimens that are used, not only in the maintenance stage of treating mm, but also in the initial induction therapy. I wonder if this is due to the heterogeneous nature of the disease, personal philosophies of oncologists / cancer centers, or a combination of both? I sense it is the latter. Thanks for sharing your thoughts!
Cheryl T - Like you, I am so thankful for The Beacon, as it has been my single best source of learning about mm since being diagnosed nearly 3 years ago. It looks as if we are on a similar timeline in our treatment plan. I don't think that people understand remission in mm. I have had several people tell me that they'd heard my ASCT was successful and are glad to hear I am cured. Oh if that were the case!
Eric - In hindsight, I would consider myself one foolish guy in rushing back to work, as I found I hit a wall – physically, emotionally, and mentally – after about 2 months and wonder if my bout with pneumonia and other respiratory ailments at the end of the year was due to my macho approach. I have learned from that and now have a better approach to taking care of myself. It will be interesting to see how long Revlimid is effective for me as my M-spike had plateaued and actually had begun a slight rise just before my ASCT. Continued happy climbing days!
I've had no maintenance since my SCT 2 years ago. I'm enjoying the freedom from side effects, but I accept I will probably relapse sooner than if I was on Revlimid.
The answer to the question about overall survival is tricky. One day we will each stop responding to the drugs which used to work for us. I consider that I'm saving my treatments up for when I really need them.
But none of us knows the answer - there is no right answer. Most important is that we are happy in our own decisions (and that we live as long and well as possible!)
Steve,
I believe that you rushed out there too quickly too and I would not recommend what you did to anybody and after a SCT I think very few people would even contemplate it anyway. “Tough guy” was probably the wrong word for me to use. What I was seeing and trying to say was the will to not let myeloma completely take over your life is strong in you.
Also just for clarification, I went up the back side of Half Dome using the cables like most people do and not the front side. Still it was a 16 mile round trip and 4000ft of elevation change and the views are amazing. It was my first time doing that. I like telling that story so people know that that if all goes well after a SCT and while on maintenance therapy or not that it really can be a “golden period” or chapter in myeloma treatment where life can essentially be almost like it was before myeloma, at least for a while. Do not squander it away fritting over myeloma every day. I do not see you doing that.
Steve,
I am a newcomer to the Beacon. Even though I was diagnosed with MM in November 2012, my disease has been in control of my body, time, and energy to the extent that reading and research took a back seat to just getting through the day-to-day treatment protocols. I have been through a hip replacement, multiple bouts with RSV, cataracts, and other eye infections, and a total of 3 SCTs!
My last SCT (unrelated donor) was in May 2014. I am now dealing with GVHD. I haven't read any posts from anyone beginning maintenance after an allogeneic SCT. My doctor said Revlimid is not used after donor transplants. Carfilzomib [Kyprolis] / dex and Zometa are my only options. The side effects are brutal. Is anyone experiencing post allo maintenance treatment? If so, what are the med protocols and how is it working?
Hi Teresa - There are much less research regarding maintenance therapy after allogeneic (donor) stem cell transplants than there is regarding maintenance after autologous transplants. A key reason for this is that allo transplantation for myeloma is just much less common than auto transplantation.
Because of issues such as graft versus host disease (GVHD) and the importance of the graft versus myeloma effect, maintenance after an allo transplant has to be considered very carefully, and you should make decisions about it in close collaboration with your myeloma and transplant specialist(s). Likewise, the results of studies looking at maintenance after auto transplants really are not applicable to questions about maintenance after allo transplants.
If you'd like to hear from people who may have had maintenance after an allo transplant, we would suggest posting a question in the Beacon's discussion forum about the subject. There already is at least one discussion there about maintenance and allo transplants in the forum, but feel free to start a new discussion, if you wish.
You can find all discussions in the Beacon forum related to allogeneic transplantation by going to this link.
Good luck!
Alex - I think your final statement, "Most important is that we are happy in our own decisions (and that we live as long and well as possible!)" is the best possible advice that can be given to anyone afflicted with this disease. Thanks for sharing!
Eric - I think that it is a natural reaction for anyone with any level of competitive nature to try not to let myeloma completely take over their life. I felt so good and so full of energy after being hospitalized for 16 days with ASCT that I mistook that for being back to normal. All of us with mm have a "new normal" which I believe we have to keep in mind. Cable or no cable, mm afflicted or healthy, climbing anything higher than the top of an extension ladder is impressive to me.
Teresa C - I am glad you have found The Beacon. It is a wonderful resource for those of us with mm and I am certain you will get answers to your questions. I know little of allos except that a close friend of mine had one (not for mm), and from that I can only surmise that it appears to be a far more difficult procedure to deal with compared to an auto.
Dear Steven and all,
This is exactly where I'm at now and really appreciate the thoughtfulness of all the comments. I have been reading these articles since my diagnosis last April but haven't weigh in - just taking it all in - but I do need help in this decision. At 55, in perfect health until this - all of the medical drama has been a bit overwhelming. Radiation to get rid of the T-11 tumor that started this chapter in my life, induction with RVD, SCT in September and currently off the meds with a VGPR response. All labs are great except they can detect the M Protein in my urine - but too small to measure and I'm feeling like myself again. Did OK with the Valcade except for the neuropathy that is pretty much gone - Dex was manageable but the Relivmid started to shut down my liver, so was discontinued - liver is fine now. Since most maintenance therapy include Relivmid - I have to look at different options since I'm ineligible for a liver transplant. We are looking at some of the antibody drugs such as Elotuzumab and wondering if any of you folks have input on this line of therapy?
I have a wonderful support group but I must say that reading and learning from all of you gives me a great deal of comfort and information that my love ones can't provide.
Steve,
From the beginning, I had reservations about maintenance therapy, but decided to start maintenance therapy 4 months after my SCT. I've been on Velcade maintenance for 15 months and have been struggling with whether to continue maintenance therapy until relapse, or after two years of maintenance therapy. The two-year period comes from the fact that, as I understand it, maintenance therapy started as a one year activity (or, as you state,"chapter") in the myeloma book, and then graduated to a two-year period. Today, many myeloma specialists recommend continuous maintenance therapy.
I have relatively mild side effects, so side effects do not weigh in on my decision to continue therapy right now.
The thoughts in your column have convinced me to continue with maintenance therapy until relapse. I, too, respect my myeloma team who believe that continuous therapy will enhance my life. As they often state "they are trying to keep me alive long enough so I will be around when a cure is found." I'll try my best to live up to their expectations.
Steve,
I went the clinical trial route. It's been a little more then 2 years since I was told I had myeloma, and it will be 2 years in May / June time frame that I had my ASCT. Maintenance began 3 months after ASCT with RVD, for 6 - 8 weeks, then a BMB in December, and 10 mg of Revlimid starting in January of 2014. I feel great, suffer from colds for a longer period, but other than that really no issues.
Dear Steve,
Thank you so very much for your column.
Treatment for mm is complex! I was diagnosed in August, 2013. I've been on maintenance Velcade 2x monthly since my SCT in February, 2014. Started June 2014 with Velcade. Doing very well and am in complete remission.
Thoughts on the future: I'm sure hoping for the best and so thankful for the care I get from my doctor and team.
I really appreciate the comments from others about their treatments. I learn a lot and gain support not available elsewhere.
SB
Erin - I think that everyone who reads The Beacon would agree that it is a great source of information and thus, comfort. I would suggest you post on The Forum under Treatment and Side Effects as you might get additional advice there. Good luck in your search for an alternative to Revlimid.
Paul A. - My doctor has also used the phrase, or something similar to, "keep me alive long enough so I will be around when a cure is found". I love your statement of trying your best to live up to their expectations.
Jack - Like you, my suffering from cold / bronchial infections is deeper and more prevalent. I have learned that, as soon as I start feeling something coming on, to go immediately to my family doctor, rather than play macho man and think I can gut it out. I hope you continue to feel great!
Slyvia - The value of having confidence in one's medical team and having a great support team can't be overstated, but, like I commented to Erin, also having a resource like The Beacon sure helps us in many ways. I hope your CR is long lasting!
Steve, Thank you so much for this month's column. It comes at a point when I am just about starting my SCT process. Your six bullet points summarize precisely my own ponderings about the eventual maintenance process. I just could not come to any cogent understanding about all the issues for the very reasons you stated. So, thank you once again. Well done.
I do have one question to pose to you. You say that you now know to go to your general physician as soon as you sense a cold is coming on. How does your physician handle this situation? Does he know enough about myeloma not to be frightened off? Does he feel comfortable in prescribing antibiotics? I find that my non-myeloma doctors know very little about myeloma and are reluctant to prescribe in fear of interfering with the chemotherapy. I do not censure them for this. It is, after all, a rare disease. On the other hand, I have the impression that my myeloma specialist really expects me to seek help from outside doctors when I come down with a respiratory problem.
Will be grateful for a response from you.
Masha - Fortunately, my family doctor has previously treated a patient with mm, so I trusted that he was aware of all of the issues associated with mm. My oncologist made it clear that I should feel comfortable seeing my family doctor for "routine" illnesses. The James Center has an excellent medical website that enables patients to communicate with their medical team. I always inform my medical team of any visits to my family doctor and what he has prescribed. They always get back to me within hours and, fortunately, have always supported what my doctor has done, even when I had pneumonia. I am truly blessed by a great general physician and a great oncologist and medical team.
Steve,
This was a great column, as apparently many more people think. I have not gone through maintenance. Since my SCT 2 1/2 years ago, I have been chemo drug free, which I enjoy. I know that will change someday.
To Masha I would like to say that my internist did not know much about myeloma when I was diagnosed, but he is very willing to learn. I go to him for the usual non-myeloma things. I like to tell him I am educating him in case he has another patient with myeloma. As it turns out, he has another patient now who has had an SCT, so he is more aware of what this patient can or cannot do in some instances.
Thank you Steven. Have posted the question.
Steve, thanks for an excellent article. I wish you the very best of luck as you start maintenance. I have just completed two years of Velcade maintenance therapy following ASCT, and have thankfully maintained at least a very good partial response. I will be meeting next week with my oncologist to discuss my maintenance options going forward, including whether to discontinue maintenance and just wait and watch for relapse. I would be very interested to know if any of your readers have experience remaining on Velcade maintenance for more than two years, or have switched from Velcade to another drug after 2 years. Thanks again.
Joyce - Thank you for the kind comment. I envy you and seriously contemplated not doing maintenance until relapse due to being chemo free for 9 months. I hope I don't have cause to regret my decision.
Erin - I am sure you will get responses that will help you.
David - I will be interested to see if my term of maintenance is shortened from "for the rest of your life or until the risks outweigh the benefits". Hopefully, new research or new drugs will bring not only that change but many more positive changes in mm treatment.
Steve, thank you for this informative column. I agree that the complexity of this disease brings diverse opinions on how it should be treated, especially from the medical community. While it is good to have options, sometimes they are accompanied by overwhelming decisions. I applaud your efforts to be your own advocate and educate yourself on treatment options. It's the ultimate "due diligence" for yourself and your loved ones. Good luck with maintenance therapy!
Steve, as someone at the beginning of the MM journey, and looking down the pipe at a possible ASCT, I really appreciate your columns.
Would love to here more about your recovery from ASCT. Are you still off work? Beside bronchial infections, are you dealing with any memory loss or concentration problems that would make it hard to go back to work?
One of my big concerns about the transplant is whether my brain will still be functional enough to continue doing systems work. My work is complex, requiring me to hold many details in my mind. It also requires a lot of concentration.
RT
Steve,
I am part of the Myeloma XI Trial in the UK which, among other things, is basically set up to decide whether there is a clinical benefit in maintenance as against no maintenance. I was diagnosed September 2011 and had the transplant in April 2012.
Because of the reactions with dex, I had almost decided not to be randomised for maintenance, but was persuaded by the regimen of Revlimid only. My maintenance started at 25 mg and went down in 5 mg doses as my body couldn't stand it (I think they now start at 15 mg).
I have been progressively reduced to 5 mg every other day (i.e. 2.5 mg), but my immune system is now almost normal and there is currently no sign of the disease. So my point is that maintenance can be adjusted to obtain a balance. I have had a total of 26 maintenance cycles, of which the last 10 have been at this low dose.
RadiantTiger,
My brain still functions as it did and, on the odd occasions I have had a commission recently the ability to hold all the considerable necessary detail to undertake the brief is still there. But I am now 70 and this means that, in parallel to being capable of analysis, I find myself in a room and I don't remember why I came there. This element is just normal ageing. You will find that you get tired and I have to have an afternoon sleep every third day. If you are a consultant and don't need to commute, you will be less affected. Best to plan for a four day week.
Good luck
Ray
Tabitha - It is embarrassing how ignorant I am about a disease that will probably be the cause of an earlier than anticipated death. I still have the utmost confidence in my oncologist, but I just want to have a clue as to what he is talking about and what others write in The Beacon.
Radiant Tiger - I was very fortunate in my recovery from the ASCT. 5 days after discharge, I went back to work (school superintendent), working 3 hours initially and gradually expanded that to a full day within a few weeks. For the first two months, I felt great – mentally, physically, and emotionally. At about the end of the second month, I noticed a drop in energy level, and over the course of the 9 months have noticed that my cognitive abilities are not what they were. I don't know whether this is the lasting effects of chemo drugs, fatigue, or just getting old. I also fatigue much easier now.
I have always been susceptible to colds and bronchial infections, and have finally learned that, as soon as I start feeling as if I am coming down with something, to see my family doctor immediately. That has been a good move on my part. I have found the best remedy for those times when I lose concentration or aren't functioning mentally is to go for a walk, drive, or just change what I am doing. I have taken off about 6 days of work since the transplant, most of that coming when I had pneumonia.
In hindsight I think my rush back to work was a mistake and would advise anyone to take their time and once back to work be willing to listen to your mind and body and give yourself a rest when needed.
Ray - Thanks for the info and advice. My maintenance regimen calls for 10 mg per day, Revlimid. I am hoping that the fact that I tolerated it fairly well during induction therapy bodes well for me in regards to side effects.
Radiant Tiger,
I can say that, in my case during my induction therapy treatment, I certainly had some cognitive impairment and difficulty concentrating, no doubt about it. I was on a lot of drugs at that time. Velcade, hydromorphone, morphine, and off and on various anti-depressant drugs taken to try and help with the neuropathy. I think it would have been a real surprise if I did not have some cognitive impairment.
And during the SCT while in the hospital and afterwards, I was taking a lot of drugs for nausea that are also used as anti-seizure medications etc. I brought a lot of magazines and books to read but got through little of it. I found that I would read a page and could not remember what I had just read.
When I was released, I went to pay the bills that had accumulated at home and found I could barely write my signature; my hand writing looked like I had Parkinson’s disease. I could converse with people just fine, though. It was when I tried to concentrate on reading that I really noticed the impairment.
In time, a lot of this cleared up and I went back to work as a test and evaluation engineer for missile and gun systems for the Navy. Since then, I have been on maintenance Revlimid for 3 years. I feel my memory is not quite what it used to be, and so is my cogitative thinking, but still good enough that I can do my job and nobody has really said or noticed anything that I am aware of.
Some days, though, I feel as if I am just not there and I can tell my thinking and ability to concentrate is better on other days. If I take a break for a few weeks or more from maintenance therapy, it does feel as if a little bit of a veil or fog has been lifted that I was not aware was there. Other Beacon contributors have said the same. Then again I am getting older so come gradual decline over the years can be expected from that too.
If you end up taking dexamethasone, I think you will find it can significantly affect cognitive thinking between the day you take the drug, which is fine, and when you come down off of it and have the crash before the next dose, where you may feel wiped out mentally. I found I had to plan what I did through the week around dexamethasone and do simple tasks on the wiped out days.
I do not mean to be a Debbie Downer with all this, but I thought I would share this with you and anyone else who has jobs or any situation that requires them to have good cognitive thinking and concentration to set realistic expectations and so you can plan for what may be ahead.
Steve,
I had a tandem ASCT after 4 months of induction with CyBorD. Finished up my second ASCT on Christmas Eve. In complete remission now. After much research and discussions with both my local oncologist / hematologist and my myeloma specialist, who trained at Little Rock, we all decided my best opportunities was to continue my journey with a maintenance monthly plan. I believe that is the right plan for me. So far I have had zero side effects, back to work full time. Living my life to its fullest now, making new memories as long as God allows me to.
Thanks, Ray, Steve, and Eric, for your feedback on brain issues. Glad to hear, Eric, that you were able to return to your job, which sounds like it requires quite a bit of brain power.
This feedback is helpful for me in managing expectations. No, I'll never be the same as I was, but I have a bad disease and I just have to make the best of my situation. Induction therapy is kicking my ass! (In week 5 now.)
And thanks, Steve, for reminding me what questions I need to ask my oncology team about their maintenance plan for me. Have been focused on many side effects for induction, but the transplant is now looming.
Eric - You give great advice to Radiant Tiger, and I can second almost everything you say in regards to the change in mental / cognitive ability, as what you share is so similar to my experiences. You inspire me - if you can still work as an evaluation engineer for missile and gun systems for the Navy, I can surely run a school district! Thanks for all of your sharing on my column.
Randy - You are a better man than me - don't think I could do a second ASCT. Making new memories is what I am all about now, so that, when the tough times come, I have joyful things to reminisce about.
Radiant Tiger - I hope your induction therapy situation improves. I went through a tough time, too, but after my oncologist adjusted my dosages, things improved considerably. You might want to have that conversation with your oncologist.
Hey Steve,
I, too, am starting to write the new chapter called "Maintenance Chemotherapy" in my MM book. The first few paragraphs, like yours, have revealed my interest in researching the pros and cons of a maintenance chemo regimen, and navigating the lack of clarity among "experts" on the issue.
At the moment, I am following my doctors recommendation to continue on a 5 mg Revlimid / monthly Velcade shot chemo cocktail following a spring of 2014 SCT and a pretty intense VRD consolidation for six months after that. However, the thing that keeps nagging me is the same thing that you said you are confused about concerning relapse time versus overall life expectancy results.
Honestly, since I am only 49 years old (I still have a month to go before I'm 50, so I'm milking it all I can), the only thing that matters to me is life expectancy! I wanna see my 12 year old daughter get married and have kids! If I can make it that far, I'll be a happy camper!
Therefore, I am concerned that, since cancer has such a diabolical way of learning how to adapt to and eventually prevail against certain drugs, will a maintenance regimen allow my cancer to learn how to adjust and mutate against these chemos, ultimately rendering them ineffective?
Surely, the maintenance dose will prolong a relapse, but if it is building the cancer's "immunity" (what an oxymoron) to the chemo, and then there are no other effective drugs to fight it, does it really help in the long run?
I have yet to answer this question! Maybe someone here might be able to shed some light on it. Like you said, everyone's MM book reads in a unique and individual way, and until there is a consensus among the experts, we will just have to trust our own physicians and. more importantly. our own bodies to tell us the best way to fight it.
Good luck to all of you in this epic battle!
Hi Steve,
I hope your maintenance therapy is going well. We had our ASCT within a month of each other and I started my maintenance therapy in October. I was on 10 mg of Revlimid, thinking that this would go well because I had no problems during my induction therapy. I was wrong. It left me with low blood cell counts. I had to get two rounds of Neupogen and get put on antibiotics. My local cancer doctor put me on 5 mg of Revlimid and after getting more blood work done I had neutropenia and had to get 3 more rounds of Neupogen and more antibiotics.
I then had an appointment with my doctor down at the James and his recommendation was to discontinue maintenance therapy. He feels my quality of life would not be good! I would be susceptible to catching something that could kill me. He also said there is no proof that 5 mg does any good. I find this interesting after seeing other people on that dose. I guess after the ASCT my body has changed. I have confidence in my doctor and would rather feel great and be able to live my life until the inevitable relapse. That is the scary part, but something I know I have to deal with.
Wishing you all the best.
Sherry
Hi Sherry - I have really just started maintenance therapy. It was delayed due to a rash that I got when I initially started. I am on 10 mg also and have found I am not tolerating it anywhere near as well as during induction therapy, where I had no issue at all. Neuropathy has intensified to the point that at times it keeps me up at night and I have had regular bouts with fatigue. Like you, I attribute this to the changes that have occurred in my body since the ASCT. I have not had any blood work done since starting and my next appointment isn't until early June.
I hope your family is doing well and things get better for you!
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