Living For Lamingtons: Let's Talk Maintenance
Several months after I had my stem cell transplant, my doctor suggested that it would be a good idea to begin maintenance treatment with Revlimid (lenalidomide). He believed that maintenance was likely to lead to longer progression-free survival. I remember him saying that, in his experience, maintenance therapy often put the myeloma into hibernation. That sounded good to me – long-term hibernation, I hope.
He also explained to my husband Graham and me that he thought that the maintenance therapy might lead to longer overall survival. At the same time, he said that sometimes side effects related to the maintenance therapy meant that it had to be discontinued, as everyone reacted differently to this medicine.
I can't say that I was wild about the idea of maintenance but, as it was only for a year, I felt that I would go with the program. I had previously been imagining a 'drug-free' time where I could maybe 'forget' about myeloma, blood tests and medicines.
So the year went by and I coped fairly well with the regimen. But, of course, it was not a picnic in the park!
My neutrophils remained low, and I succumbed to infections from time to time. I entered the special gastrointestinal world of wavering between constipation and diarrhea; I still don't understand that waiver, but it is real. The neuropathy, which I had suffered from for many years, also increased a bit, but it was controlled quite well with Lyrica (pregabalin). I hated (and still hate) the sort of chemical tiredness that creeps up on me in the afternoon, but I have always tried to ignore it as best I can.
From time to time, I wondered if this treatment was really necessary. It could be that the myeloma was 'hibernating' on its own and that the Revlimid was an unnecessary extra. I read the many Myeloma Beacon articles and comments on the topic and again found lots of different opinions and treatment options. Clearly there were trials going on all over the globe and many dilemmas for doctors and patients.
The situation reminded me of the “Let's Talk” resources for children that I wrote for many years. These resources were designed to encourage young people to consider scientific dilemmas. Many of the activities used story lines and scenarios to engage the youngsters and help them to imagine the situations that society and individuals face.
And now I felt that I had a new dilemma all of my own, one that I shared with many people in the myeloma world. Pros and cons, advantages and disadvantages, no 'right' answers, all the points that I had been trying to bring out in my resources. Maybe I ought to write a new resource: Let's Talk Myeloma!
Once the first year of maintenance was coming to an end, my doctor said that he thought I should continue with the maintenance treatment, but at a reduced dose. He felt that I was doing well and that the potential advantages outweighed the risks. We talked about the fact that nobody could tell if I needed this treatment – nobody could tell if it was the Revlimid that was keeping the myeloma at bay.
Everyone seemed to feel that I was coping. I sometimes think that coping means something a bit different depending on which side of the 'little white pills' you find yourself upon. But of course I don't say much; I underplay the side effects because if this is the best thing for me, I don't want it to stop, do I? Dilemmas!
So now that the two-year mark approaches, I have to consider whether continuing further maintenance treatment, perhaps until disease progression, might be a good plan. But I'm not so sure. I've been very inspired by fellow sufferers who have a drug-free holiday.
I'm coping (!), but it might be so wonderful to have some time away from drugs, time to regain more of the 'old' Marje. I don't know how good it could be. In my mind, I feel it might be time for more fun, more skipping about, and more freedom to travel.
But is it a good idea?
Dilemmas, dilemmas, dilemmas!
Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi, my husband had a stem cell transplant 8 years ago. He had a 3-year honeymoon from any drugs. Then he went on dex (every 1 1/2 months - 4 days of 5 pills each day). A couple of years, later he switched to every 2 months. He really hates it, but his doctor is convinced that the longer he can leave taking Revlimid or some other drug, the better. A few months ago he found a plasmacytoma on his chest, so radiation. His blood is still great but his doctor is undecided as to what to do at this point. More treatment or wait and see.
There is no right or wrong about taking maintenance medications. You are NOT a statistic. Everyone responds differently to medications and doses, both good and bad. Quality of life does matter. It is not necessarily irreversible if you take a drug holiday and then change your mind. Only you know how those drugs make you feel, but you can measure results by blood tests (but maybe they would stay the same without drugs). I know that this rambling doesn't help either, it's just to assure you that you are not alone and that you are not going to die from taking a holiday.
Coach Hoke
Dear Marjorie,
I am in a clinical trial and one of the "advantages" is that there are fewer discussions as to what course treatment might or should take. This is all prescribed by the trial protocol. My induction therapy was Revlimid, and my stem cell transplant was in April 2012. The time came for the consultation regarding the next stage and possible randomisation to maintenance or no maintenance. At this point there was no sign of the disease.
My first thought regarding maintenance was no thank you, given the experience with the induction therapy pre-transplant. All trial patients have the option of stopping at any time. My consultant, however, talked up maintenance, saying daily treatment was only Revlimid and asprin. I did and was randomised to Revlimid maintenace. This started at 25 mg per day for 3 weeks and one week off with monthly blood tests before the next cycle. Progressively the dose was reduced by 5 mg each time the blood numbers fell until I have been stable at 2.5 mg per day for over 2 years. I am now at cycle 59 and counting. At no time has there been any sign of the disease.
So what are the down sides? I get tired and have afternoon sleeps at least every other day.
My consultant said that many patients found that cutting out cheese and processed meats helped with "control" because Revlimid hinders the digestion of these. It works for me and better than more drugs.
An antibacterial dose twice a week has kept infections down. and I have only had three sessions with powerful oral antibiotics.
So it is all tolerable and a lot less severe than many non myeloma sufferers have to undergo at age 72.
But what I cannot tell you is how I would have reacted/felt if I was not on the very low level of maintenance that treatment under the protocol has advanced to.
Even comparing the experiences of someone who has also had a fully successful transplant and not proceeded with maintenance will not be directly comparable, as we all react differently.
So in the end, logically, it is how inhibiting you find maintenance? If it is becoming too much, could you try a period without and see if you are markedly improved?
Hope this helps you with your choices and good luck.
Regards
Ray Ranns
Dear Marjorie,
Thanks for the very well written column. I am sure that many other readers too are not sure what to do about ongoing maintenance treatments. As myeloma patients, we are living in an era where new drugs are being used, and for new purposes too, such as maintenance.
I don't think that there is a clear answer, but I know that in my case, which does not follow what you went through so far, it has been nice to have had two drug-free holidays. The reasoning behind the two times I have been away from myeloma drugs, and still am eight years since diagnosis, were that in both cases I was in a good remission, and it seemed OK to take that chance.
The first break I had, starting in 2011, had to do with the fact that maintenance as such was not yet approved in Canada. So since I was doing so well, there was no justification in continuing the medications. That lasted for 3 1/2 years.
The second drug-free holiday had to do with being treated for a second cancer, and if I were to fall away from the remission, I would be able to go back onto treatments of some sort (not necessarily Revlimid).
So anyways, some of the advantages I can think of for not being on the drugs are that I have a chance to get stronger, less chance of more cancers developing, and away from the effects of dexamethasone. I realize that dex is not usually a part of maintenance though. In that regard, maintenance is a milder treatment than full treatments.
There really is no "right" answer. I've been on a 5 year drug holiday. Hope it lasts forever. I was on low dose dex for a couple of years, for maintenance. I also wondered did I need it and was it doing anything. Pretty much have to go with the doctors or your own "gut feeling". No one said any of this would be easy. Best of wishes with whatever avenue you pursue!!
Aloha Marjorie,
Your article hits me right where I live at this time. I have decided to stop my maintenance – for almost 6 months now – and so far my numbers remain good. Like you, though, I am always wondering if I am actually shortening my life.
It is a very difficult dilemma. The maintenance is relatively easy to tolerate, but it still has the side effects that you describe so well. I am thrilled to leave these side effects behind for as long as possible, but at what cost?
It would actually be an easier decision if the side effects were much worse because I would happily trade quality days for fewer overall days if those days were made more difficult by medication.
So for now I feel like I am rolling the dice by not taking the maintenance, but I am comfortable with this decision. I will keep monitoring my numbers, but I'm not going back until my blood says its necessary.
Carpe Diem!
Thanks for a great article.
Tom
Thanks so much Marjorie. This article is so on point. I just started Revlimid 10 mg daily last month. I have had only had a brief glimpse at some of the side effects, but I too think about the drug-free option a lot. I made the decision on my own to start maintenance therapy and wasn't persuaded by my specialists one way or the other. The "dilemma," however, lives on within me.
Dear Marett - Thank you for your comment and for sharing the treatment which your husband has had. I am not surprised to hear that he hates dex and was sorry to hear about the plasmacytoma on his chest. I can see that you are both facing your own dilemmas and I hope that things go as well as they possibly can. Best wishes.
Dear Coach Hoke - Thanks for pointing out to that you will not die from taking a treatment holiday! I think sometimes with all the chat about decisions you can forget that things are in fact reversible. I will bear that in mind in the months ahead. Thank you.
Hi Ray - I read your comment with great interest. I had not thought about this particular advantage of being part of a clinical trial and I was so pleased to hear that you have no signs of myeloma in your blood. I didn't know that Revlimid may hinder the digestion of cheese and processed meats. Actually I no longer enjoy these foods, and so perhaps that is the reason why. Thanks again Ray; I am sure many readers will find your comments helpful.
Dear Nancy - Many thanks for your comment. I had read about your recent drug-free break due to a second cancer. I think you are very courageous to even be able to say that the break due to another cancer was a 'holiday'! I wish you well for your recovery and hope that the break can continue. I was also pleased to hear of your previous three and a half year break. I am sure you enjoyed that immensely. Best wishes to you and your husband.
Dear Jim - Thank you so much for your good wishes. I was pleased to hear about your 5 year drug holiday and hope that it continues on and on. I think you are correct that it is best to go with the 'gut feeling' of the doctor.
Dear Tom - Thank you so much for your comment. I feel as if, very soon, we might be 'partners in crime'! Not exactly crime I guess but, as you say, rolling the dice! I loved hearing that you are thrilled to leave the side effects behind. Carpe Diem indeed!
Dear Colin - Thanks for your comment. I have been following your treatment programme through your posts in the Beacon's forum. I was very glad to see that you had 'made it' through! I hope that your maintenance therapy is not too tough, and that you do not suffer many side effects. We will share our dilemmas, and I guess that is part and parcel of having myeloma!
There must be a stronger word than "dilemma". The sleepless nights and time devoted to making decisions about maintenance therapy certainly deserves one.
My guy, diagnosed Sept.'14 with transplant Mar.'15, restarted daily 10 mg Revlimid this past Monday. He has been on a 40-day holiday due to a nasty bout of varicella zoster, virus which included a 5-day hospital stay. Presented as chickenpox with lesions unlike anything we had ever seen with a childhood case. Guess extremely low platelets will do that to you. He was a pretty sick man but antibiotics and antivirals brought things under control eventually.
During the holiday, he and I had many discussions about whether he should venture into the world of Revlimid again or take a longer break after a steady 2 year regimen. BUT what if the drug was keeping the myeloma at bay? Wouldn't it be nice to not have to deal with consistently low blood counts or antibiotics for various infections....as well just got the six months of ongoing meds and procedures behind us from the osteonecrosis of the jaw (ONJ) from Zometa when the varicella found him. But what if the drug was keeping the myeloma at bay?
The fatigue, the infections, the blood work, the fear of travel and crowds. But what if the drug is keeping the myeloma at bay? You are spot on, Marjorie. It IS a dilemma at the very least. Where did I put that crystal ball? Can never find it when I need it.
If taking Revlimid, standard here is to take an anti-viral, like acyclovir to prevent a shingles outbreak. Not a big deal as it’s cheap and has no measurable side effects. I had been on Revlimid for over 4 years before it lost its effectiveness. Now on Pomalyst (pomalidomide) and it is even fewer side effects than Revlimid. However, one still needs the anti-viral to ensure no shingles outbreak.
Dear Nadine, many thanks for your response. I agree with you 'dilemma' does not seem to be a strong enough word to describe the situation that we find ourselves in. I am so sorry to hear about all the issues your partner has, it sounds really tough going. I have had 5 mini bouts of shingles despite being on an anti-shingles medicine. It seems to be part and parcel of our condition. But, as you say, the real mega-dilemma is what to do about the Revlimid. Good luck to you both and I hope so much that your decision leads to better health.
Hi Eric, thank you for your comment. I am glad to hear that you are doing well on Pomalyst (pomalidomide) and that it has fewer side effects for you. That seems like good news for you and for many readers of the Myeloma Beacon. Best wishes.
Hi Marjorie, your story was very interesting. I'm in the process of stem cell collection as I read through your story today. Thank you for giving us fellow sufferers some insight.
Dear Dianna, thank you for your comment. I hope that your stem cell collection goes well and I wish you all the very best for the future.
Marjorie, I can't imagine what a difficult dilemma this is! How ironic that the most critical decisions we make in life usually come with so much uncertainty as to the outcome. Wishing you all the best as you decide whether you'll continue maintenance therapy.
This was a much appreciated article. Just this month I decided to take a Revlimid holiday after 21 months maintenance at 10 mg daily. I had just hit the wall with the side effects. I kept adjusting my diet this way and that way with no positive result. I became very reluctant to leave my house before mid-afternoon, and by then the chemical tiredness / poisoned feeling left me without much energy or desire to venture out. All my numbers are perfect right now, but as others have noted, you do wonder if you're stopping the very drug that has gotten you there. I made the decision to take a break, my doctor was supportive, and we'll continue to monitor closely.
A few takeaway thoughts:
I've felt a lot better having made the decision. Much lower anxiety. All the GI issues ramp up anxiety for sure.
We multiple myeloma patients are all in a world where there is risk in everything we do. There's a risk for secondary cancers with Revlimid. There's a risk the disease might come back sooner without it. So for a while, at least. I'll go with the risk that enables me to enjoy daily life more, something that's been in short supply for nearly four years. When the side effects threatened to ruin a long planned family outing to see Paul McCartney, I thought, "What's the point of all this if I can't do something I love that's otherwise completely doable?" So, at least for now, I feel relieved, and no matter what lies ahead, I've vowed to enjoy this time and never look back with regret.
Dear Tabitha, thank you for your kind comment and best wishes. I still don't know which way things will go but the ongoing discussion is very helpful. Best wishes to you and Daniel - I enjoy reading your column.
Hi Oliver, it was so interesting to read your comment and to hear of the path which you are following. I could readily identify with so many of the side effects that you were describing, and I feel that I can understand the decision you have made. I hope that the concert was fantastic and that you felt well. What a great treat. Whatever I decide, I will do my best to follow your mantra of not looking back with regret. Every best wish to you, Oliver.
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