Well, for me …
I know many patients have true fear and much trepidation regarding anything to do with chemo and/or the stem cell transplant program. I didn’t have those feelings; I was excited because it represented real hope to me. Once I was accepted into the program, you couldn’t wipe the grin off my face!!!!
I’d been on weekly IVIG for a few years. Before that, tried a combination of timelines and the weekly was the only thing that kept me working. However, the pain continued to increase and the IVIG became less and less effective. I had a very short trial of steroids – but didn’t do well on them. I also tried Immuran without results. The only two treatments left to me were plasmapheresis and/or chemo. So I could keep trying different conventional treatments or go for the brass ring, the stem cell transplant! I was already a couple of years into treatments and continued to slowly get worse …
So I really, really looked into the program. I learned that the equipment used to harvest stem cells is identical to that used for plasmapheresis … so I was being offered to start off with 6 plasmapheresis treatments or I could go into the stem cell transplant program and have a similar procedure done – once. Hmmm, one time vice a minimum of 6??? Liking the sound of this!
I was also told by my doctor that plasmapheresis would probably not be enough, and I would most likely be on chemo within 6 months. I’ve read here on the forum that treatment usually consists of at least 6 chemo treatments. The stem cell transplant process has you on chemo one day prior to harvesting and then 7 days in the hospital prior to the actual transplant for a total of 8 chemo days.
I weighed all the factors and I really liked the idea of getting it all out of the way in a matter of weeks instead of trying additional treatments for an additional year or so … I didn’t feel the stem cell program was nearly as scary as continuing with trial and error treatments that may or may not work!!! Even though I worked up to the Friday before I left, the fact that chemo was an attractive alternative, should tell you how bad I felt and how badly my life was impacted by CIDP.
As far as your neuro telling you the risk is greater than the benefit … how can she know if she’s never heard of Dr. Burt? I challenged my neuro on that thinking and he did do the research and changed his opinion completely.
I had no problem with the chemo – didn’t get sick. I cannot say that about others. There were 9 autoimmune patients going through the stem cell transplant at the same time. A few of us never got sick, a few had a rough day or so and a few were sick most of the time … the one thing we ALL agreed is that, regardless of hurling or not, it was all worth it. It really is over faster (and in some ways slower – haha) than you think.
But for me, the bottom line is that I am way more afraid of CIDP than I am of chemo and so I went into this fully excited and happy – like a little kid on Christmas morning. Hope is a giddy thing!!!