I’m cheerful today, after visiting Mayo Clinic for the end of the 38th 28-day cycle of pomalidomide. IgG is up a paltry 3%, from 1170 to 1200 mg/dL, but M-spike is down a whopping 17%, from 1.2 to 1.0 g/dL. I don’t actually believe that my monoclonal proteins dropped that much, because last month’s figure was a medical impossibility (higher than IgG), but it feels good anyway. See, it doesn’t take a lot to make me happy. We celebrated with a couple of bowls of kettle-popped organic popcorn.
STABLE is the proper description:
The myeloma is stable. IgG has varied between 923 and 1350 mg/dL since July of 2008, two and a half years. I just want to stay on this regimen forever, running marathons and otherwise enjoying life. It doesn’t work that way, but so far pomalidomide has given me nearly three years of normalcy.
When pomalidomide fails, what’s next for me?
Every treatment fails eventually – that’s a dependable feature of myeloma. Apparently, though, I will have plenty of options. I’ve had thalidomide, pomalidomide, dexamethasone, and low-dose naltrexone so far, no other doctor-prescribed treatments. There are Velcade studies at Mayo right now, and Carfilzomib, plus several new agents which work in magically new ways. Dr KDS mentioned Phase I, II, and III trials – lots going on, and I might be eligible for several of them. I’m feeling good about the future.
We even discussed bone marrow transplant, but I’m not sold on that, for me. I have a slow-moving variety of myeloma, and I’m hopeful that it can be managed by using the existing treatments in a serial fashion and, perhaps, by taking advantage of new ones as they come along. The cure for myeloma is to live long enough to die of something else, and that’s my plan. Meantime, life is to be lived!
What About Secondary Cancers?
There is new evidence that long-term treatment with Revlimid, such as Revlimid maintenance after a transplant, may result in an increased risk of second primary cancers including lymphoma, leukemia, and solid tumors. The risk is still low, perhaps less than 5%, but studies seem to show that it is somewhat increased compared with people not on Revlimid maintenance. Doctors are trying to quantify this risk now, to determine whether it says anything for or against long-term maintenance. The Myeloma Beacon has a very current article on this issue.
So what about pomalidomide? Thalidomide, Revlimid (lenalidomide), and pomalidomide are all immunomodulatory drugs (IMiDs). They all “modulate” the immune system, suppressing it to some extent, in their multi-pronged campaign against monoclonal plasma cells.
THE FOLLOWING ARE THE SUPPOSINGS OF A NON-DOCTOR. READ AT YOUR OWN RISK: We know that an important role of the immune system is to kill cancers before they can get started. The DNA of a cell goes wacko (technical term) for whatever reason, say a coincidental zap from a gamma ray that left the star Alpha Centauri 4.2 years ago, or a treatment by an alkylating agent like melphalan, or a radiation treatment for something, or even a PET scan. The immune system detects the wacko cell and swats it down. Game over.
If the immune system is suppressed, however, maybe it wouldn’t detect the wacko cell, or maybe not until that naughty cell has multiplied and the group has become too strong and adaptable for any immune system to swat it down. Thus the drug doesn’t actually cause the cancer, it simply opens the door for it. Again, this is all supposition; I am not a doctor.
If something like that is happening, though, we might see secondary cancers in people taking other IMiDs like thalidomide, if we look, and eventually perhaps in those of us taking pomalidomide. Dr KDS says that there really is no information on that last point yet. Pomalidomide is too new. I don’t know if anyone has yet looked at the information that does exist. But I do know that I’ve been on pomalidomide for nearly three years now, and that easily qualifies as long-term treatment. There was no transplant, but this is maintenance nonetheless.
How Do We Fight Secondary Cancers?
Job One, of course, is to discuss this with our doctors, and keep ourselves up to date.
Job Two, in my opinion, is to live a healthful lifestyle that fights cancer. That is a huge subject covering nutrition, exercise, sleep, addictions, and much more. It is, however, more or less in our own control. We can influence our own futures and make it more likely that we’ll be here for our grandchildren. I’ve been thinking about writing a book about this (of course there are books out there already), and may blog about it, but here are some simple principles:
Nutrition: We simply avoid eating anything that does not contribute to health. Does soda contribute to health, or a jelly doughnut, or french fries? Of course not! So we choose a healthful alternative, like charged water, a slice of organic whole-grain bread with a little organic raspberry jam, or a banana. Further, we go for the very best foods, especially fruits and vegetables, organic where suggested by the “dirty dozen” lists. Good nutrition contributes in two ways: (1) we avoid ingesting foods that cause cancer, foods full of pesticides, bad fats, and empty sugars; and (2) we do eat high-quality foods containing nutrients that our bodies need to build a competent immune system, including antioxidants and other micronutrients. We are what we eat.
Exercise: Some is good, more is better. A good goal is a half hour, five days a week. We three try for an hour and usually make it. A balanced program, aimed at improving overall health, will include some resistance training (muscle building) and some aerobic exercise, with the prior advice of a doctor of course.
Sleep: How can our health be at its best if we shortchange ourselves on sleep? Studies show that most people need eight hours, some more and some a little less. One test: if I need to use an alarm clock to wake up, then perhaps I’m not getting enough.
Smoking: Oh, for God’s sake, if you still smoke, do whatever it takes to stop. No excuses – it’s killing you and everyone around you. Rehab if necessary. If you live with a smoker, move out.
Overweight: Overwhelming evidence points to overweight as a serious cancer risk. If you are obese (BMI 30+), or even overweight, please find a way back into your bathing suit, whatever it takes. This will require a serious lifestyle change – you will fail if you think it might not. Talk to people who have done it.
We three have followed these principles for years now. Does that mean we won’t get additional cancers? No, it means that our risk is lower than it would be otherwise. That’s all that any of us can do.
Some Current Test Results: