I put an awful lot of trust in my doctors, but I realize that they’re only human. They see hundreds of patients, and probably don’t think about me much after they leave the exam room. I take it upon myself to find out as much about my disease and its treatments as I can, and I don’t blindly follow any doctor’s advice. I have to understand what’s being done and accept the risks. When I see others getting less than standard care or outdated treatments, I have to speak up. I have an acquaintance whose treatment is MP, which makes her feel sick for the duration. She’s lost weight and has a poor quality of life. The suggestion to switch to thalidomide was rejected because her doctor doesn’t use thalidomide due to the problems it causes. The individual specifically mentioned the birth defects. This person is in her 80s! Of course thalidomide has side effects, especially at higher doses (Celgene says that certain side effects, such as peripheral neuropathy, are dose related). I just can’t forgive a doctor for not trying it with a patient that has such a miserable time with MP.
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Just food for thought. And by the way, I’m SO HOPING you get your Collie back soon, soon, soon. I just know you will, too.
I can understand your point of view about your acquaintance’s treatment, certainly. I don’t think I quite agree with you, though. With bitter experience, I’ve come to believe that second guessing an experienced MM doctor probably isn’t going to be indicated — at least not definitively. I think treating this disease is almost as much art as science, and with a talented and experienced doctor, it may pay dividends to rely heavily on his or her experience in treating myeloma.
My Mother, at 80 years old, was treated with Thalomid, and then Thalomid and dexamethasone ineffectively. I sometimes think now that I’d rather have had the doctor choose a more aggressive approach like MP or cytoxin infusions (for the second time). See how our points of view on the same treatment approach are so different?
Obviously we all wish this disease had more clearcut and effective treatment options, but the belief I’ve come to is that each case can be (and is often) extremely different from many others, and it’s the experienced doctor who most certainly is in the best position to discern the particular trends and best approaches under different patient circumstances.
At least that’s more how I’ve come to think about it after a year of reading every thing under the sun about MM while supporting my mom’s battle with this disease. There may come a time for your acquaintance when the Thalomid is the indicated treatment, but if she’s tolerating the MP, from my point of view that’s a good thing. It’s good that she’s still a candidate for MP, and it’s good that she is tolerating it.
My mom’s and my experience with MM is that it can get completely out of control very quickly. To me, especially for someone who’s older, keeping an iron grip on the myeloma at all times is a very good idea. I think of MP and cytoxin as more iron-grip type of treatments. From our experience, Thalomid is not nearly as causally tied to beating this MM monster down. At least not something you can depend on with certainty if the disease is becoming very aggressive.
Like I said, just food for thought : – ) Hope our experience is of some benefit to you in your fight with myeloma.