by DanielR on Sat Jun 21, 2014 5:28 pm
Since we haven't heard from Steve since the 11th, I am assuming that his experience of his SCT is akin to mine: miserable. Someone else mentioned the nausea, but I don't feel like this symptom has been sufficiently emphasized. The nausea from the transplant process is bad enough in and of itself, but when combined with the IV food, it becomes God-awful. The IV food makes your urine reek!!! So every time I had to pee, which was constantly, the smell would make me retch anew. FYI, I am not someone who has ever been prone to nauseousness until this procedure.
The quick dissolve onsdansetron [Zofran] is great for mild nausea, but for what the transplant patient has to deal with for the first week or two post Transplant, only Ativan [lorazepam] is effective. Fortunately they will inject it directly through the Hickman port. I found that 1/2 doses on a more frequent basis worked best.
As bad as the nausea was, it was the diarrhea that was the most excruciating. They had warned me about the pending diarrhea but for the first 2-3 days post transplant I really didn't have any. I thought I was in the clear. The nurses warned me otherwise, but I really thought I would be the exception. Wrong! Be sure to ask for the medicated wipes when it starts!
My last warning is the low-bacteria diet they force you on. Just imagine normal hospital food. Now make it 10X worse. I found out that while I was enduring all of this that the children's floor for transplants was experimenting with letting them eat whatever they wanted. So look, I'm not necessarily recommending that anyone follow my example here, but by the 4th day I started having someone sneak outside food in; it was a Godsend! I wasn't unreasonable. I made sure it was food that was thoroughly cooked. I did admittedly gain some notoriety at COH when I got caught with the chili rellenos from an on-site vendor, but it was so worth it.
I just remembered another rather unpleasant aspect. They don't allow you to brush your teeth. So they give you these little cups of something that's supposed to help clean them. The problem is that it added significantly to the aforementioned nausea. Again, follow your own dictates, but I used a soft toothbrush I had managed to get past the "guards". I can't recommend it enough!
I know I'm not painting a very pretty picture here, but, I'm sorry, SCTs are not pleasant! Admittedly, it is worse for some people than others. I do wish someone had warned me about some of the above.
So, for anyone considering whether to get a SCT or not, be sure to read Dr. Berenson's work. He gets as good a response with a no transplant approach as do the clinics recommending 2 transplants within 30 days. I wish I had known about his research before I'd made my decision. I might still have decided to get the transplant, but, then again, I might not have.
I had responded miraculously well to the RVD protocol pre transplant. I actually do mean miraculous. I went from knocking on death's door with chromosome 17P deletion, IgG Kappa, and M-spikes all off the charts, combined with a massive systemic infection. None of my doctors expected me to live. That was December of 2012. Today I'm off all multiple myeloma meds. My RBC remains below normal, but everything else is within normal ranges.
Would I be in this place if I had decided against the transplant? Obviously I cannot know.
Best to Steve and all suffering with multiple myeloma, as well as their caregivers -- thank God for my wife!
Personally, I have no preference for one school over the other. My choice was primarily based on the fact that I live within an hour of U of M which allowed me to go home for recovery after my stay in the hospital. I cannot complain about my treatment there. It was top notch and the staff was very attentive to any and all needs that I had. 
