Myeloma In Paradise: A Tale Of Two Toms
I have been struck lately at how clearly I am leading a double life.
In my “healthy life,” I am fun-loving, cheerful, outgoing, and almost always trying to grab the golden apple with both hands. I am able to combine work, fun, and family into a package that I’ve rarely ever been happier about.
In my “myeloma life,” I find myself standoffish, reserved, and looking forward to my next nap. I am usually a bit frumpy and grumpy and not very fun to be around. It is not somebody I enjoy being, so I usually try to stay a little more isolated.
It’s the bitter irony that is multiple myeloma that I have to learn to accept both Toms. When somebody who hadn’t seen me for a while recently asked me how I was doing, I had to tell him that I was amazed at how much more I am enjoying my life now that I probably have an upcoming expiration date. I also told him that I was a bit ashamed that it took a diagnosis of an incurable disease for me to find this enjoyment.
This joyful Tom almost immediately forgets the pain and discomfort of the unhealthy days and focuses on enjoying time with family and friends. I have been accused recently of burning the candle at both ends, to which I gladly admit full guilt. I am having so much fun when I’m this Tom that I have to do some things that are not fun once in while (work!) just to break up the fun monotony. What a problem!
The good times slow down considerably when I’m suffering the effects of my multiple myeloma treatment. I’ve been on maintenance therapy for about two and a half years now and the dividing line between the good and the bad times is becoming ever more clearly defined.
Like many of you, I am on maintenance therapy. In my case, the maintenance regimen includes Revlimid (lenalidomide) and a steroid. I take the Revlimid for 21 days, followed by 7 days off. The steroid I take, methylprednisolone, is a low regular dose that I continuously take every other day with no week off. Again, as many of you can attest, the Revlimid dictates which Tom will be answering the door on any given morning. The steroid I take has no effects that I can notice anymore. I find it much more tolerable than dexamethasone.
I have become very predictable.
On days 1 to 7 of each treatment cycle, I am pretty much feeling my best. Having just come off a week of detox from the Revlimid, I almost always feel good. I end up doing the most during this week and try to schedule my life accordingly.
On days 8 to 15, I am still feeling pretty good, but the Revlimid is starting to make me feel a bit loopy. I can usually power through this feeling and get a lot done with a little more effort. I’ve noticed that I can feel the effects of the Revlimid after only a couple of doses, but the chemo brain remains tolerable for quite a while.
On days 16 to 21, I am getting a bit overwhelmed. My fatigue is becoming so pronounced that I am easily taking a nap in the middle of the day, something I have never been able to do in the past. I am also usually feeling the gastrointestinal effects the most during this time. Keeping a toilet and a large jar of antacids handy is usually a necessity – especially the toilet. I find it very hard to keep my focus during this time. Occasionally my mind will just drift off in mid-sentence, which I find a bit unnerving. It is not my typical behavior. Of course, all of these other symptoms are what contributes to the grumpiness. Being grumpy probably bothers me the most, as it is often taken out on my poor family.
Most people rarely see this bad side of me. When I have to work during this time, I screw a smile on my face and try not to act too stupid. I am usually able to control the diarrhea with Imodium (loperamide) in order to get through long drives and meetings. If I’m not working, I don’t do a whole lot of other activities. I just don’t feel well enough to try and enjoy myself very much. When I do see friends during my bad days, I try to hide my discomfort as best I can. No reason for everybody to feel bad.
My week off (days 22 to 28 of each treatment cycle) is really the most telling of the tale of two Toms (that’s a tongue twister!). The first two or three days of my off week, I am still feeling my worst and would prefer to be left alone to sleep it off. By day three or four, though, I am rapidly coming out of the fog and really looking forward to feeling good. I find the end of this week is the best time for a party, dinner with family or friends, or a more complicated project at work. I am always amazed at the turnaround my body makes in just a few days’ time.
You can almost draw a line on the calendar dividing the bad from the good.
What I find the most fascinating is my brain’s ability to forget the recent difficulties and focus on the positives. I can hardly remember the bad days at all, but the fun times are in vivid detail!
I sure am glad the good days still outnumber the bad. I know this won’t always be true, so for now at least I’ve got a candle to light – twice.
Aloha and carpe diem.
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Very informative article Tom! I really like your day-by-day account of the two Tom's. It is very interesting how you can so clearly characterize the effects of your maintenance chemotherapy. I noticed that my husband shares many of your experiences. I have learned to just roll with his current situation. I try not to make too many commitments with friends and family lest I have to cancel at the last minute. Everyone seems to understand that there are good days and not so good days. Keep that candle burning!
Tom, have you tried using Questran (cholestyramine) for the Revlimid-induced diarrhea? My oncologist doesn't want me using Imodium for longer than 2 or 3 days; however, Questran can be used each day and works like a charm. It has been a lifesaver for me. Each packet contains a daily dose of 4 1/2 teaspoons of powder. I need only 2 1/2 teaspoons mixed into 1/2 cup of fruit juice each morning. Best wishes.
Thanks so much Tom for your informative and interesting article. I've just started Revlimid and my experience is like yours right down to the diarrhea and fogginess. My physician first started me on 25 mg, but I developed lots of side effects that were not sustainable. After a few weeks off to recover, I started on 10 mg, which I tolerate well enough to stay on it. My second cycle of Revlimid is coming in 2 days, but it will have to wait until I enjoy the rest of my 7 day respite.
I am just curious as to the benefit of maintenance if it makes you feel this way. I am currently only on Zometa every quarter. Admittedly, I have days as you describe, just not in a predictable sequence or as often. Maybe therein lies the benefits of maintenance and a subconscious feeling of doing something to slow the beast down.
But as you said, whilst the good outweigh the bad, then we are in front. Long may it last.
Aloha Vicki – I also often question my maintenance therapy, mainly because I am otherwise symptom free. Unfortunately, my free light chain levels rise pretty quickly when I am off of the therapy. I have accepted that myeloma will cause my death significantly faster if I don't treat it. I treat it and try to approach each day with what I have to work with today and not focus on what I don't have.
Barbara – Hang in there. The 10 mg dose was a lot easier for me as well.
Katie – No, I should look into the Questran. I don't use the Imodium continuously, but the Questran might be better.
PattyB – Sounds like you have the right attitude! Your friends will adapt when you can't make it. Carpe Diem!
Tom - Great article. I'm on Revlimid non stop, no breaks, so some days are more of a challenge then others. I try to watch what I eat to keep the diarrhea in check. Sometimes it works, and others it doesn't. I push though work on those days where I become tired. Otherwise I feel great.
Tom
Revlimid, long term, takes some persistence. The first few months came with a "chest cold" each month. That stopped after abot 3 months. My dose is 25 mg and I have been taking it for 3+ years. I noticed early that after starting a new 21-day cycle I started getting itchy on my head and ears. Skipping a day's dose at this point cleared that up and the rest of the month went smoothly. The 3rd week of the cycle always came with more tiredness. That was basically the process for the last 3+ years and continues. To combat digestive issue, I use regular doses of probiotics and some herbal supplements. Also, the dex dose is 20 mg once per week. Long term Revlimid was very effective for me at keeping the M-protein under control, and giving me a fairly normal life. It has started to lose some of it effectiveness recently, so it has been combined with 2 weekly infusions of Kyprolis. This drove the M-protein to near zero, so here's hoping for another good run.
Take care and keep writing great articles for the multiple myeloma community
Thanks, Tom, for saying that you can't remember really the bad days, but the good days are in vivid detail. I feel the same. I just say to myself that my Velcade maintenance is right on schedule - tired right after the injection with some insomnia, too, but all gets so much better as the days in-between pass. Thanks for your upbeat column. Aloha from NC!
Tom, Thank you for this. I have printed this article and refer to it as I look at the day. Even though I have been using Revlimid off and on for 5 years, I do believe the side effects are worsening. I am going to look into Questran now for the diarrhea.
What captured my interest was your attention to your mind and how it works as you progress along the days. My 7 days off remain my most precious. I'm not sure how the Empliciti complicates my recovery. Maureen
Hi Tom, Thank you for the very accurate description of the effects of Revlimid maintenance therapy. I too have very similar effects from the drug. I have been on Revlimid (2.5 mg), 21 days on, 7 days off, for almost 5 years. I took 25 mg with dex and Velcade prior to having a stem cell transplant. After the transplant I was put on 10 mg, followed by 5 mg and finally 2.5 mg because it was causing a pretty good rash mostly on my legs. I took my first pill last night for the 21 days on and I already had a light case of diarrhea this morning. A lot of the effects that you talked about, I never really paid a lot of attention too, but I too have many of the effects that you have. One of the side effects that I have is that I could sweat in a snow storm. I live in South Mississippi and the summers are hot and humid, winters are mild. I can work outside in the winter and work up a serious sweat, in the summer forget it. I can handle the sweats as long as I survive a little longer. Thanks, Tom.
Aloha Greg – I sweat like a stuck pig! It didn't occur to me that it might be aided by these drugs. Good observation! I agree with your observation – the hassles are worth it when you consider the alternative is death. Keep a towel handy for the summer and enjoy the beauty of the still days.
Maureen – Let us know how the Questran works for you. I am not sure it is worth it to me to add another drug to my diet right now. My bowel issues are tolerable; for now. I would also be interested in your observations of the Empliciti once you have any. We are all pulling for you!
Sylvia – I just gotta keep looking for the positive. Its just how I am wired. Glad you can see past the dark days as well! Keep your chin up!
Eric – I am happy to hear of your success with the Revlimid. Let us know how the Kyprolis works for you. Good luck!
Jack – You are the first I have heard of that takes Revlimid with no breaks. That sounds really challenging! I am glad it works for you. We all have to do what works for us. Keep up the good fight!
Aloha
Tom
I was diagnosed with multiple myeloma the end of January, 2016. The similarities are there – pain in the right side, hip, leg and so on. I take thalidomide, 100 mg daily, at 8 pm. It put me to sleep and dream, sometimes about my 62 years of my life and some that didn't happen yet. I also take the aspirin daily, and the steroid (dexamethasone). I have noticed that my myeloma specialist only concentrates on the treatment, but the side effects not so much. My side effects from thalidomide are the opposite as you (constipation); the other effects are the same – zero energy, pain on my knees when going up stairs, and tiredness. I rely on my regular doctor, who is also a cancer survivor, she helped me bring my body back to a level close to normal.
I live in Costa Rica, and my family, except my wife, had me for terminally ill when they learned I have bone cancer. Even my lawyer, God bless him, wanted me to write a will. But now after 5 months of treatment and recovering, I see the light at the end of the tunnel. This illness is nothing more than a chronic illness and with the progress of medical sciences, good doctors and personal discipline, we all can beat this cancer. Keep up the good words and bless you for your writings.
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