This latest treatment plan I’m on has been a real humdinger, the hardest I've ever been on. It is a combination of lower doses of four drugs, but it causing some very unacceptable side effects. I’ve been ready to quit on more than one occasion. The first problem was that the Revlimid, even at a small dose, after 10 days, caused a small stroke affecting my left arm. It really is fully functional, though slightly weaker, and they told me at the hospital, where they thoroughly checked me out, that on a loss of functionality scale of 0-24 I was a zero, so that was very encouraging. Any weakness should heal up on its own as the rest of the brain compensates for the lost cells.
Now the Doxil is causing some heart pain and problems, which landed me up in the ER a second time. After a thorough bunch of tests again, at least I know it’s not a heart attack, but it is still worrying. I think the Dex along with the Doxil has affected my heart. Dr. Chen wants me to see a cardiologist and meanwhile has put me on a blood thinning drug (Xarelto) to prevent a further stroke. These drugs are pretty heavy duty. I asked Dr. Chen if we can switch to a different steroid other than the heavily stimulating Dexamethasone, and he said yes, so I'm looking forward to NOT doing that horrid drug any more.
When I told him I wanted to quit this protocol, Dr. Chen has explained to me that there are not a lot of options at this point to get rid of the plasmacytomas (small tumors) which have grown on various places in my body, including some organs such as spleen and duodenum. The ones that got ahold of the lymph nodes under my arm and were spreading fast were taken out by 15 radiation treatments, which have been a challenge to recover from, but it’s mostly healed now. My actual myeloma numbers are very very good, and what he told me is that the plasmacytomas are a mutated form of the myeloma cells, which don’t show up on the regular blood tests nor do they respond that well to the immunotherapies (CAR-T for instance, the latest thing, doesn’t budge them). So this four drug combo, which was also given to me by a myeloma specialist in LA, who independently has the SAME protocol as Dr. Chen to deal with this, is about the only path forward for now. So I MUST continue, but without the Revlimid. No more of that drug, ever, for me, don’t want to risk another stroke.
So this has been a real wild time these past three months. I’ve gone from feeling like I was in remission, which is what my numbers showed, to having a lot of tumors all of a sudden which I didn’t know about because they weren’t being picked up in the monthly blood test. And just getting into treatment for that, tolerating the treatment itself, driving myself to the 15 radiation days, arranging rides down to Dr Chen’s for treatments (quite a distance, and I can’t do it myself), etc. has taken all my available energy. I’m still somewhat in shock that this has happened and can’t quite get to grips with the sudden relapse. Especially because the blasted thing shape-shifted and wasn’t showing up via normal tests. It’s a real formidable foe, but together with my good doctor I’m convinced we can beat it. Dr. Chen has put more than one patient into complete remission from plasmacytomas worse than mine, and is confident he can do so for me. If I can just tolerate these darned drugs! Please pray that I can.