Birds In Spring: This Is Your Brain On Myeloma
Published: Feb 21, 2012 4:06 pm
Say, how’s your brain working these days?
That’s a question for many cancer patients and survivors, but it is particularly one for those multiple myeloma patients who have had at least one stem cell transplant.
Getting a stem cell transplant is pretty intense.
First you start treatment with a cancer drug regimen, or radiation, to reduce the level of myeloma cells in your body and to get your myeloma into the best remission that can be accomplished.
Then you take drugs to make your bone marrow produce more stem cells and “mobilize” them into the blood for harvesting.
A few days before your transplant, you get a lethal dose (200 mg) of melphalan (Alkeran) – it’s called MEL200 among the transplant doctors. I say lethal, not because it could kill you on the spot, but melphalan targets and destroys your bone marrow. By doing so, it also destroys your immune system, making you a sitting duck for infection. Oh, and melphalan also gives you the plucked chicken look, since every single hair on your body falls out.
The stem cell transplant is just to rebuild your bone marrow that was destroyed by the chemotherapy. It is rather anticlimactic and takes maybe 20 minutes. They call it your new birthday, since it’s the day your immune system in reborn.
There is ongoing research into “reduced intensity” stem cell transplants, basically giving you a smaller dose of melphalan, but it’s not commonly used to treat myeloma yet.
This brings me back to the brain thing.
The question I raise is whether after you’ve been through all this, do you think, act, and feel differently than before? Do you react to things differently? Are there changes in your values? Are there changes in your mental abilities?
Take the last item:
Can myeloma or its treatment have a negative impact on your cognitive abilities?
No one considered the possible impact of chemotherapy on mental abilities until thousands of breast cancer survivors started speaking out, saying something like, “Hey, I don’t really think straight all the time any more.”
Thus, “chemo brain” entered our lexicon.
I’ve read estimates that as many as three-quarters of cancer survivors experience some change in their mental functioning, and that it can last for several years. Most of the research into chemo brain has involved women with breast cancer, so it’s a fair thing to be a bit hesitant to extrapolate the findings across all cancers.
But let’s talk about treatment for multiple myeloma specifically.
A transplant is up toward the top of the list as a stressful and traumatic event on your body, particularly one that you are doing to yourself on purpose. Unfortunately, the effect of chemotherapy on cognitive function is one of the least explored areas of transplant and high-dose chemotherapy.
I also suspect that all of the challenges you face because of myeloma can cause some significant cognitive and mood disturbances, perhaps even something akin to post-traumatic stress disorder.
I’ve chatted about this possibility with various myeloma medical team folks. One doctor commented that even though some patients say they are okay, they also say they “feel different.”
Can all that one goes through in dealing with myeloma, the disease itself and the treatments, make you a different person – spiritually, intellectually, and psychologically?
I start my conversation on this topic by talking about myself.
After my first transplant, I emerged with a greatly changed perspective about some of the significant things in my life. Some things just aren’t as important to me as they were before. Other things take a more important place in my view of the world than they previously did.
In addition, I quite possibly experience some chemo brain, and I am not always able to do things as easily as before.
I’ve never really experienced the depression- or “feeling down”-aspect of myeloma, but who’s to say that will always be the case?
One myeloma patient I know used to be one of the most positive people living with myeloma that I’d come across. But since he’s experienced some significant setbacks in treatment, and things aren’t working as he expected, he’s changed.
There’s frustration, depression, and anger there now – an edge to him that wasn’t there before. Anxiety and fear can do bad things to you.
Someone gave me another example of how this disease can change you: Take a truck driver in complete remission. He’s a “success story.” However, he can no longer drive a truck. He’s now on disability with income that’s maybe one-quarter what he was making before. We can make him a stereotype – maybe his wife leaves him, and he sits around, alone, drinking beer, and getting fat.
He looks in the mirror and doesn’t see “success.” Instead, he says, “This disease has destroyed me. It’s destroyed the person I used to be.”
From my perspective, I think that myeloma, treatment, and transplants can cause changes that are psychological, cognitive, attitudinal, and physical.
Are the causes of the changes chemical or biological?
There’s a little bit of research going on to answer this question.
For example, Shelli Kesler and her colleagues at Stanford University are trying to better understand what causes chemo brain. Her recent research shows that chemotherapy has a negative impact on cognitive function, but she was also quoted recently as speculating that the cancer itself could cause chemo brain.
“When you get a disease like cancer, it activates your immune system. Sometimes you can have increased inflammation for a really long period of time, and inflammation can affect the brain,” she said.
My additional thoughts on the topic:
Unfortunately, though, much of what I’ve written about here isn’t being addressed by the medical community in general.
For those of us who are transplant patients, we often find that we aren’t always able to function as well as we used to. Very little has been done in the post-transplant setting to understand cognitive dysfunction, post-trauma implications, stress, depression, and attitudinal and physical changes.
From an overall physical health perspective, the medical teams treating myeloma patients/survivors are doing a great job. The medical community has invested a lot in helping us “get better.”
Those things that help us get better, however, may be affecting survivors in ways no one anticipated in terms of stress and dysfunction – in ways that can impair recovery.
It would certainly be great if there could be more research about this, and perhaps some solutions.
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