Not sure my case is at all typical, but it would be interesting if other multiple myeloma (MM) sufferers shared some similarities. As best I can tell, any symptoms of MM have been minor. The side effects of treatment drugs are a different story.
I was originally diagnosed with MM in August 2017 at the age of almost 75. So now, nearly eight years later, I guess I can call myself a cancer survivor. I probably owe my life to my prostate, for which I had an MRI that showed that the organ was okay, but my pelvic bones had numerous lesions consistent with MM. An interesting side note. My wife of 21 years died of MM in March 2003. Had we both been exposed to some causative environmental factor along the way? Who knows.
In February 2018, after four months of dexamethasone (Dex), Revlimid®, and something else I cannot even remember now, I had an autologous bone marrow transplant. The portion of the treatment after the cells (followed by chemo) were reintroduced to my body was not fun. For a few days, I felt very unwell. I was in the hospital for 17 days, and my caregiver (bless her heart) was with me almost all of the time.
I was in remission for about 18 months and then started Dex once per week, Pomalyst® (21 days out of 28), and Darzalex® every four weeks, a regimen that put me back in remission for a while, so I stopped taking the drugs. In about 12 months, the cancer was returning, so I started the regimen again but with Pomalyst® reduced to 14 days out of 28 to try and reduce the side effects. Principal of these were tiredness, weakness, and constipation (ugh). During this period, I had annual PET scans, one of which showed a lesion growing very close to my spinal cord. This rang alarm bells with my oncologist, and I was directed to the emergency room right away. After one night in the hospital and numerous tests, I had a two-week radiation session, which fortunately eradicated the mass. I had a second two-week radiation session about eighteen months later, as a couple of other lesions had grown noticeably big. About two weeks after the second session, I had a day when I could barely get out of bed. Fortunately, the tiredness ebbed, and I was able to get back to a more normal daily routine.
Let us talk about that a minute. Up until 2023, I had a lovely dog, Bear.
Bear and I went for a 40 to 80 minute walk every morning, and I believe that exercise is a key to counteracting and controlling my MM. After Bear died, I continued my morning walks, but now do about 30 to 60 minutes each day. This can be tough on tired and weak days (this would vary on a day-to-day basis). But I felt I had to push through those feelings and exercise through walking every day. I cannot stress how important I feel this has been for me. That, the constant help of my caregiver (Janet, we live together), and a great cancer care team are my keys to a continued reasonably good quality of life.
Recently, I once again came out of remission, and as a result, started on a new drug regimen. This involves a weekly shot of Velcade®, and a weekly dose of Dex, Zofran, and Cytoxan pills. Also, there are blood tests every week. Not sure yet whether this is working. About a month ago, I had a consultation with a specialist MM doctor at UCSF. The purpose of the conversation was to review my cancer history and to investigate whether I could or should be a candidate for a CAR-T cell procedure. He asked that I have a PET scan and implied that even at my age (now 83), CAR-T might still be appropriate.
So, that is the story up-to-date. We have not heard back from UCSF but do not expect to do so until after the PET scan (scheduled for early August). There are hurdles (medical, general fitness, financial) to be addressed before CAR-T could be contemplated. I believe I should be okay on the general fitness issue. I am not obese (6’1”, 205 lb., no diabetes, no high blood pressure, somewhat high cholesterol (but have had that my whole life). I take one calcium pill, one baby aspirin, and two Acyclovir pills (to avoid shingles) every day. I also have a Zometa infusion every 12 weeks. I know there are risks with the CAR-T cell procedure, but I believe the potential benefits out way them.
Ralph
multiple myeloma (MM)
