Myeloma In Paradise: Sometimes You Just Endure
I am writing today under the old adage of “misery loves company.” I don’t want you to be miserable, but I just need to share with somebody who understands.
For those of you currently enduring severe myeloma symptoms or treatment side effects, please forgive me for sounding like a spoiled brat. However, there are many of us who experience myeloma like a dull constant headache, rather than a migraine. And that constant ache is a hassle (although I’m sure those of you with a migraine would trade for it in a minute to get rid of the migraine).
After three years of relatively painless (both figuratively and literally) treatment, I am hitting a rough patch with this cursed disease. Nothing like what many of you go through on a daily basis, but difficult nonetheless.
I find it very frustrating that, just when I start feeling like I have the “new normal” under control, I wake up feeling like I’m hitting a major bump in the road. I guess that’s just the nature of what we all are going through. Living with myeloma is like a marathon roller coaster ride.
Thankfully, my disease has never been very debilitating. I am one of the lucky ones who happened upon the diagnosis through a blood test while searching for the cause of a regularly occurring bout of colitis. It turns out, by the way, that colitis can indeed be caused by myeloma, due to the lack of immunoglobulin A (IgA) that my disease causes. This immunoglobulin helps protect soft wet tissues in our body, such as our mouth, stomach, and intestines. Since I have almost no IgA in my body, I am susceptible to such colon irritations.
Other than my colitis and a little more fatigue than is normal, I have had no other myeloma symptoms; no broken bones, no lesions, and thankfully no spinal problems. I often have had to remind myself why I am undergoing treatment at all. Unfortunately, the bone marrow biopsies repeatedly confirm that this is necessary.
Indeed, the treatment has been far worse than the disease in my case. After first playing watch and wait for a year following my diagnosis, I endured 10 months of induction therapy with Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (Decadron). I then enjoyed an almost six month “treatment vacation” to get my stem cells ready for harvest in preparation for a future stem cell transplant. After a successful harvest, I went to maintenance therapy with Revlimid and methylprednisolone (a different steroid). I am still on this therapy to this day.
While the treatment cocktail has been less than enjoyable, I would say I generally have tolerated it quite well. While on the drugs, I have been mostly able to maintain an active lifestyle and have been able to continue, at least in a reduced capacity, with my work. What nobody other than my family gets to see, though, is the exception to the word “mostly.”
As with most folks, every cycle for me has its ups and downs. The week off of Revlimid (and, for the first 10 months, Velcade) is usually the best. We all know the joy of dexamethasone. Although methylprednisolone is easier for me to handle, it still leaves me unpredictably moody. I try to plan for the times I am going to feel bad, but they don’t always come when they are “supposed” to.
After a year on maintenance therapy, I started getting exceptionally fatigued during the last days of the Revlimid cycle. I was taking a one- to three-hour nap almost every afternoon! I also developed a heart arrhythmia that was causing me to be short of breath after a couple of months of maintenance – again at the end of the treatment cycle.
My doctor took me off treatment right away, and the arrhythmia stopped within about five days. But it certainly slowed me down for a while. After that, I was given a six-week holiday from drugs, and I felt awesome! After over a year on maintenance, it was great to feel normal again. I forgot what it felt like to not be on drugs. Of course, my blood work the next month wasn’t very good – got to keep “mowing the grass” with that Revlimid – so I had to start treatment again.
This time, my body recovered some equilibrium, and I tolerated the drugs much better than before. I felt so good that I was doing lots of work around the house (my wife was thrilled!), fishing, hunting, and playing golf.
What a great break from being sick!
As we all know, the good times will always come to an end. And I was no exception.
During this latest treatment cycle, I have not only rediscovered my old friend fatigue, but I am also enjoying diarrhea severe enough to cause me to stop solid food altogether. Whether this is due to the myeloma-inspired colitis or a Revlimid side effect, I am not sure. No matter the cause, I’m pretty miserable.
It’s interesting how quickly we humans take the good times for granted. We quickly forget about the bad times and expect the good times to roll forever. I have read that this is a survival mechanism we have adopted to cope with life’s hard knocks. I can see how valuable that is.
I get by with the knowledge that I will have more good times ahead. I try hard to use the down time productively, but it seems like such a struggle sometimes.
For now I will just endure.
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 .
Hi Tom!
My husband has myeloma and is currently undergoing ASCT. He is in the "nadir" with the unpleasant chemo side effects, waiting for the day when he begins to feel not "wiped out". I wanted to send him something to help him through this time and I came across this quote:
"When you come to the end of your rope, tie a knot and hang on." ~ Franklin D. Roosevelt, 32nd President of the United States of America
I think that about sums it up for all myeloma patients, and their caregivers! I empathize with how you feel right now. It's frustrating, but you have learned to be resilient and good days will come again. Take care and I wish you well!
Tom - If your diarrhea is that severe, it should be addressed by your doctor. If it is due to the Revlimid, there is a cholesterol medication that may help you. If it is due to your ongoing colitis, it should be addressed by a gastro. No need to be a hero! There are no extra points for suffering. Many people have GI problems on the forum. Please feel better soon!
Aloha Ellen,
Thank you for the advice on my GI problems. I have had the colitis long enough to know that the only real solution for me is to stop all food. If it seems to become a regular issue from the Revlimid, you are right, I need to ask for a solution. I haven't had prolonged diarrhea ever before from the Revlimid. It just comes and goes.
I am keeping my eye on it.
Susan - I love that quote - I haven't heard it before. I am hanging on and now feel much better than I did when I wrote that article.
Thank you!
Tom
Hi Tom, I've gone back and read your columns from the beginning and feel I know you better. I have to tell you that I admire very much how you have adjusted your life to put first the most important things. You were able to remove much of the stress and concentrate on your health and your family's welfare. You are a shining example of how to deal with the lemons life deals us and make lemonade for as long as you can. Keep up the good attitude and that should be a long time. I look forward to many more of your articles.
I am just starting smoldering and am much older than you. The hardest thing for me is the unknown as have been healthy all my life and didn't expect this. Reading the accounts of much younger ones is good to keep my mind off myself.
My thoughts and prayers with you on your journey.
Marti
Hi Tom, I develpoed horrific diarrhea with Revlimid only to discover it made me lactose intolerant. So I stay away from dairy, but when I want to enjoy it, I use lactaid over the counter chewables. I recently started having problems when I have eggs for breakfast, especially fried. So no more eggs for me. I wish you the best of luck!
I have followed a path similar to your with MGUS for 5 years and now on chemo treatments for 3 years. No problems with bones. MM shows up in bone marrow test and monthly immunoglobulin numbers, which bounce around 3000. I'm on Revlimid again after stopping a year ago when it caused a leg blood clot; the clot was over a foot long. Blood thinner (Eliquis) took it down and I continue use while on Revlimid. The latest is now body rash. Was getting weekly chemo with dex / Cytoxan / Velcade but just change to every two week and dropped the Cytoxan. These treatment hit me hard for 3 to 5 days after. Have not consider stem cell because of age.
Good to follow your columns because of our similar finding. Peace be with you.
Thomas
Have you tried probiotic supplement for the colitis / diarrhea? I use it regularly, and I have been on Revlimid for over 2 years. The chemo cocktail maybe damaging the good bacteria flora in your gut. Getting this restored will add a lot to your immune system also. Take care
Aloha,
Thank you for your kind words and suggestions.
Marti - You are too kind! I struggle with doing the right thing every day. I also found comfort in reading other's plights here that are worse off than myself. It has shaped how I deal with my myeloma. I'll keep writing and lets hope we can commiserate with each other for MANY years to come.
Joanne - I will pay attention to my reaction to dairy. I have never had a problem before, but this bears watching. I hope eggs don't become a no-no! We have our own chickens and their eggs are delicious.
Larry- I too got the body rash from Revlimid, but am tolerating it with out rash at 10 mg instead of 25 mg. There are many in the same boat as us. Keep up the good fight!
Eric - I haven't tried the probiotic prophylactically yet. I did use some pro-biotic drink right before I got better from this last bout. Unfortunately I also changed a bunch of other things (including concluding my Revlimid cycle) at the same time so I can't tell what was effective. I am very careful about giving credit to any treatment unless I can isolate and repeat the response. I will talk with my doc about the probiotic. Thanks for the suggestion.
Thank you for your responses! I love to hear from you.
Aloha
Tom
I'm glad you've been able to handle the side effects. Recovering from my stem cell transplant, I'm reminded constantly that my myeloma is still there, lurking below the surface. That's the hardest part for me. You're still early enough in the journey, hopefully, not to get to bent out of shape over it all. Here's hoping it stays that way!
Aloha Pat,
When you are in the middle of your suffering, it is hard to remember the times when you weren't. When you are feeling well, the suffering seems very distant.
I think I need to plan for the downtimes better by setting up some strategies to remind myself that the suffering will end.
Thanks for your inspiration!
Hang in there.
Aloha
Tom
Tom, I was going to mention probiotics as well. I am also IgA and, looking back, I was diagnosed with IBS years ago. Wonder now if it ever was. My symptoms went away with daily probiotics. I'm also wondering why you haven't had a SCT. Wouldn't that offer longer drug-free holidays? Aloha! Would love to go to Hawaii some day!
HI, Tom!
I hope that you will get through this rough patch very soon. Had to share this quote with you. I like it. Winston Churchhill said: "When going through hell, keep on going."
Thinking good thoughts for you.
Aloha Gardengirl and Sylvia,
That is a great quote Sylvia. Got to share that with everybody having a hard time. It actually says a great deal!
Gardengirl, I haven't had my SCT yet because my maintenance is holding my cancer load at bay. My doc and I agree to wait and fire that bullet once I need it. For now the maintenance therapy is working and I am tolerating it well enough not to require the long treatment holiday. I may start on the probiotic here shortly. Thanks for sharing your experience!
Aloha
Tom
Good article. I had chickens but my Doc said to get rid of them because of the chance of disease.
I have a question you may be able to help with. Are there any resources for comparing our monoclonal protein numbers? When diagnosed my Doc said mine were above 5000 (5.00) and they quit counting at 5000. My initial treatments got it down to 200 (0.200) and have ranged fro there to 700 and back to 400.
It would be nice to see data regarding the Mono-protein number and its significance.
This reminds me of the old saying (and this is from me to you, and not you to me): Don't let my difficulties (miseries, tragedies) make you feel like yours are undeserving of consideration. I constantly have coworkers talk about something that has happened to them and then quickly apologize, saying "of course, that is nothing like what you are dealing with." I tell them not to minimize what THEY are dealing with!
Aloha Bo,
I'm sorry I don't have the answer to your question. Sounds like an excellent forum question to ask.
Aloha April,
Thanks for reminding me that even my simple problems matter to me. Your selflessness is inspiring. Hang in there!
Tom
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