My current doc/oncologist calls all alternative treatments done by quacks. He hardly answers our questions about other treatment possibilities and even interrupts us to where we can barely finish a sentence. My husband finally asked him not to make fun of us, that we're simply desperate and need answers. We're not doctors and know everything like he does. He didn't say that last sentence. I'm just frustrated, and so is Karsten. Anyway, he's a good doc, but he's overworked, which is why we keep running into all this miscommunication, having to postpone appointments, etc. And now he's suggesting more chemo and radiation.
Because he already gave me chemo that would "kill a healthy person," I'm refusing to do anymore. I mean, if that chemo didn't do the trick, why would another "brand" help? The chemo never helped the tumors. I will, however, do the radiation. I have a feeling it was the radiation that actually cleared the tumor in my head, and not the stem cells.
The doc said it would take a couple months to be able to see whether or not the radiation worked or not. We weren't able to wait that length of time, so we did the radiation, the chemo, and the full-body radiation, and then the bone marrow transplant (which I found out later was/is actually a stem cell transplant from an ADULT donor; they said they use the term bone marrow because "stem cell" has such a negative implication, where folks assume we're using embryonic stem cells, which I would NEVER do). Anyway, now that the transplant is done, I can see that the tumor in my head is nearly gone. But now I have a tumor on my spine?! Why would the stem cells attack the tumor in my head, but not in my spine? It doesn't make sense. So, that's why I think the radiation took care of the tumor in my head and not the stem cells.
Another reason I think the radiation took care of my tumor is because the stem cells are being suppressed by all these drugs I'm on. The doc is very fearful of graft vs host disease (where the stem cells might attack me), so he wants to prevent that, and he does that with these drugs. I kind of feel like the stem cells haven't even had a chance to WORK. But hey, I'm not a doctor, so who knows. I also think it could be these drugs that are causing my liver to skyrocket in enzymes. The liver biopsy tests came out negative for the graft vs host disease, but the doc felt certain I had it because of my liver enzymes going up. Isn't it possible my liver is acting up because I eat pills for breakfast, lunch and dinner?!
I say all this, but what do I know? My doc has 30 (yes 30) years of experience, while I have none.
I'm just in the worst position I could possibly be in. The alternative doc will want to up my immune system, but then we run the risk of my (the donor's) immune system attacking me (which this doc is aware of; he's had experience working with stem cell transplant patients). And what's especially scary is that graft vs host disease could kill me and could rear it's ugly head overnight. I could wake up with a major case of it. At the same time, these new stem cells are what we've counted on to kill the cancer!
What to do, what to do?
Although my doc suggested chemo, he only hooked me up with the radiation people. I don't know if that means he's not going to do the chemo, or if he's going to do it later. He hasn't communicated anything to us. Oh, and that meeting I told you he was planning to attend to talk to the whole oncology team about my case, he never made it to. Do you see my frustration? sigh
If I do nothing, this cancer will eat through my spine and make me lame from the waist down and eventually kill me. If I go with the alternative doc, I could get a bad case of graft vs. host disease, and that could kill me, OR it will get this new immune system working to where it attacks the cancer and not me, and I'd be CURED. Or, I could just go with the radiation treatments and hope/pray that works and see what happens and hope/pray that eventually my new immune system will kick in despite all the immune suppressant drugs (btw: I got cancer from immune suppressant drugs to begin with!) and kill the cancer.
What a mess I've become.