My monthly M-protein numbers are in for April. They're up a little bit, but not by much:
In other news, I had a sudden insight a couple of days ago about my longtime breathing problem.
Readers with good memories will recall that this all started in 2013, after I tripped and fell on my chest. My breathing worsened over the next few months until it got to the point that I was gasping for breath just sitting down. I ended up in the ER, followed by a battery of tests from a pulmonologist which revealed nothing. In retrospect, I'm pretty sure that the cause was a couple of broken ribs that went undetected and which I aggravated over time.
My breathing improved steadily after that, but then I was diagnosed with multiple myeloma and went through several months of chemotherapy followed by a stem cell transplant. Those caused lots of fatigue and all of my health problems sort of blended together after that. My breathing problem had improved enough that it was still mild after the initial chemo was finished, but it got steadily worse over the years until recently, when it's become pretty bad.
Except for one thing: I don't have a breathing problem. I can breathe deeply and fully. I've been thinking of it as a breathing problem only because it started out that way and because even a small amount of exertion does cause me to breathe pretty heavily. But that's not a breathing problem, it's a stamina problem. And loss of stamina is a common side effect of cancer meds. Every single one I've taken—velcade, revlimid, darzalex, dex, and now pomalyst—warns of this. It is probably the most common side effect of cancer and cancer meds.
For some reason it took me five years to figure this out, but then again, none of my oncologists has suggested it either. So I guess I shouldn't feel too bad. In any case, what this means is that I can stop wondering what's going on with my breathing and instead accept that stamina deterioration is a pretty standard part of chemo meds that, unfortunately, has no remedy. That won't make me any better, but at least I can stop wondering what the hell is going on.
Amazing how doctors focus on treatment of disease and neglect to address the most mundane aspects of care that affect us as humans and more than just a collection of symptoms. Thanks for this update. Glad you're still kicking the M-Protein level down!
When I moved to VT, I started going to a small local rural health clinic (thank you, Bernie Sanders), where my doctor is actually a super-duper mutliply degreed, very experienced nurse who has no interest in becoming an M.D. She shares the practice with an actual M.D., who signs off on anything complicated.
The difference between this woman's care and any M.D. I've ever gone to is massive. I have to be a little careful not to complain about anything really small or she pelts me with advice and OTC recommendations and intensive questioning. ("Really, it's just a hangnail! I'm fine!")
I suppose if I develop anything really scary, I might want to consult an M.D., but she's also incredibly good at making referrals to specialists for this and that, if whatever the problem is happens to be beyond her official comptence.
One misbegotten specialist, a podiatrist, the only one in this network, unfortunately, prescribed a nasty drug for my mild toenail fungus that gave me just brutally painful heartburn (something I've never had before in my life). When I texted her briefly about it, she immediately prescribed for me a heavy-duty acid suppressant, and sees me every couple of months to see how it's going and advise me on how to proceed. Four months later, the problem is gone and I see her again in a few days to talk about how to tail off the drug.
IOW, she's been all in on getting my heartburn cured, and I suspect most "actual" docs would have been "Mmm-hmm. Try Tums."
OK, I'm on Medicare, and this clinic charges much less than most docs, so I can afford the co-pays to see her often for simple heartburn.
If you have the option, go for a nurse for routine health care!
I've always found that cheesecake is great for stamina.
It is simply motivating in a very straightforward fashion, and then afterward you can have a great nap, and then another pot of coffee.
The way that western medicine is set up--short appointments, tight specialties, no space for reflection, insurance codes to check off--the patient ends up having to be the one who thinks in a wholistic way. We become our own health detectives. I'm glad you figured out about the broken ribs and the stamina issues. I wish there was a good solution for you, but knowledge is power, and just having a deeper, clearer understanding of what is going on can be a relief.
Your daily posts add a lot to my life, like having a really intelligent friend I can turn to to get his take on things. I'm always amazed how much you get done despite such poor health. I am always sending all wishes for better health your way. Wishing you the best of everything! (Well, you are already covered in the cat department, so that's good.)
Not an MD here by any stretch of the imagination, and I have no idea what you've been advised in this regard, but do you get regular cardiovascular exercise? Certainly in my experience when I haven't been getting much for a while (eg the dead of winter) and then I start again, my stamina is sh!t: I'm exhausted by what should be just a warm-up. But after a week or two, it picks up again, and there's steady improvement to the point it's like night and day. (I sleep better too.) Idle thought ...
I'd also recommend some regular aerobic exercise if Kevin's doctors think it will be all right and if he's up for the effort.
A few years ago I had troubles with my stamina and went back to doing a little bit of qi gong, the 8 pieces of brocade and the 6 healing sounds, both of which can be learned online through Youtube in a variety of ways. When I did them again, my problems with stamina went away and have, so far, stayed away.
A simple breathing exercise can automatically relax your autonomic nervous system. Breathe in through the nose and breathe out through either the nose or the mouth. Inhale for a count of 2 and exhale for a count of 4, or multiples thereof. This 1-2 breathing practice relaxes the vagus nerve and the autonomic nervous system.
May these ideas be of use to you.
That sounds like small good news, but good news all the same. I'm happy to hear it.
Happy to see you're staying healthy. I want to be reading the day you report your cure.
On the stamina subject -- I was a middle distance runner in high school, and running was my main form of exercise for many years after that. As life got more complicated, I laid off my workouts for various periods of time, but was always able to get back on track when I felt it necessary. Starting a few years ago, though, I found I couldn't catch my breath long enough to run 200 yards. Doc says I have "the heart of a 20-year-old," and chest x-ray turns up no lung issues. In other words, there's nothing "wrong" with me except I can't breathe. I've had a couple of chest/rib injuries over the years (like you, Kevin), but my current condition did not seem to stem from those. And I have not undergone chemotherapy. My choices seem to be to start going to specialists and have a bunch of tests for which I'll probably have to pay out of pocket, or just hold my peace.
Again, good news on your M-Protein level. If I were in your place, I'd consider it a victory just to be breathing at all.????
Hopefully some new treatments will help.
https://www.pfizer.com/news/press-release/press-release-detail/pfizer-initiates-pivotal-phase-2-magnetismm-3-trial-bcma
The initiation of MagnetisMM-3, our pivotal trial, is an important step in our robust and accelerated development program for elranatamab,” said Chris Boshoff, M.D., Ph.D., Chief Development Officer, Oncology, Pfizer Global Product Development. “Bispecific antibodies hold promise as the next potential breakthrough in the treatment of multiple myeloma. We are highly encouraged by early data with subcutaneous elranatamab, which was discovered and developed at Pfizer and designed to enhance safety and convenience.”
At the Virtual American Society of Hematology (ASH) Annual Meeting and Exposition in December 2020, Pfizer presented encouraging data from an ongoing Phase 1 trial of elranatamab (MagnetisMM-1) demonstrating manageable safety and high response rates in patients with relapsed/refractory multiple myeloma including three patients whose disease relapsed on or progressed after prior BCMA-targeted therapies. At the highest dose level, which informed the dose selected for the Phase 2 study, 83% of patients achieved a clinical response. Safety was manageable across all subcutaneous dose levels with no dose-limiting toxicities observed.
Bispecific antibodies are a novel type of cancer immunotherapy that bind to and engage two different targets at once. One arm binds directly to specific antigens on cancer cells and the other activates and brings a person’s own T-cells from the immune system closer to kill the cancer cells.
Were you describing it as a breathing problem or a stamina problem to doctors? If you were having trouble breathing they might not think about stamina since 1) as you say, common and 2) you weren't bringing it up.
Glad that the numbers are staying low. Now that you know it is a stamina problem, it might make exertion and exercise easier.
Curious if you have had a sleep study done. Could start with a simple oximeter tied to a wristwatch type recorder done at your home to see if your breathing stops or slows. You may have great O2 saturation and still just forget to breathe when sleeping resulting in a loss of energy. Not saying the drugs do not affect your energy, just that there might be a 2nd contributor.
Not a Doc. Just had similar issues. My opinion is worth its weight, but so easy to determine if there is a secondary issue.
Well, hmm. Since we are all having this armchair medical discussion about breathing problems, I will offer my opinion. I, too, am a myelomiac, Dx in 2007. All the drugs you mention are associated with DVTs and pulmonary embolism. PEs often present themselves as shortness of breath, or to be more specific, a lack of stamina. The slightest exertion can leave you breathless. You can breathe deeply, but you do not get oxygen to your lungs due to emboli in your breathing tracts. Might be worth scrutinizing your symptoms to eliminate any possibility of DVT or PE.
Great news on the M-spike!