I'm more than 5 yr out from bone marrow transplant. See other blog for the rest
Monday, July 23, 2012
What me worry?
This last appointment in Brisbane was a bit of a drag. First we
got up at 3:30 left home at 4:15.
I did all my intra gram then The nurse got Doc Shoozenbootzen in. He apologized for delay in starting interferon because the trial people led him to believe I was good for the trial. Just other people got in first. He then went on to do the BMA (butt stab) and that went well... I'm told. There was a moment when doc was prepping my back and the nurse was waiting to get his attention to answer the question about how much " dazzle" to give me, but he was telling a story to Bluey and our pal... But he was getting on with his prep and soon there would be pain! I grabbed her arm and said put it in! That stopped the story enough to get "give him half" . Then I told her that was good but I needed to relax as one time he had to tell me "Chris, Shutup and go to sleep". Doc says what? So I tell the story again.... There's a pause as he is remembering then he says " give it all to him" Sweeter words I have never heard! So I know nothing for sure but appaeartntly I was a laugh riot and many people came to visit. I get the results at the end on the week in a Sypke call.
In the talk before I was stabbed he also told us a bunch of things.
Interferon would be on PBS.
I will start interferon Monday and do it three times a week.
Flue symptoms , worst for first month
We should do it for 8 weeks and if no change then go on to next treatment plan as it means that it is not working.
He also told us that the current drop in red cells is either..
1. Part of my immune system kicking the fibrosis clones and after they are kicked there is an aplastic phase where there is a vacuum and the cells are down. Then they get ramped up again.
2. The fibrosis has advanced to the place where the fibrosis is interfering in cell production.
He thinks it's 2
We will know the interferon is working when two things happen.
1. the GVHD is unleashed with its various side effects, but it would attack fibrosis clones.
2. The interferon will attack the clones directly.
If after 8 weeks we get no results then we stop the interferon and go on to either DLI or second transplant.
This also means we have to decide that since we are bringing Rick then do we do just the DLI or go straight to BMT. They can harvest for both in the time trip DLI cells fist then transplant cells. But these are decision for later.
Remember a few appointments ago I was by myself and I was trying to think about what Bluey would want to ask and he said " she would ask me should I worry" and he answered no " and two, Do you have a plan" and he said yes. Remember that?
So we have justbheard allnthis stuff about missing red cells and interferon maybe not working and I'm a bit nervous about the BMA and then I ask, as a smart ass, "should Joyce worry?"
He says Yes.
Then starts to stab my butt.Hmmmm
More later.
Chris
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