(Beginning of March):
So..I guess I should update this blog then...
I know I'm not winning any awards for keeping people up to date...please forgive me.
Today I start maintenance chemo, I will be getting Carfilzomib 2 days a week, every two weeks..
About 30 days ago I finished 5 months of chemo treatment which was Dexamethasone, Cytoxan and Carfilzomib. Also 30 days ago I had my 5th DLI, this time however it was about 10 times larger than the previous one.
Didn't quite finish writing that post, so here I am March 28th with more information and another attempt to update...
A couple of things I want to mention having just read my last blog entry. Carfilzomib is in fact the new Valcade. The new Revlimid, should I choose to use it, is Pomalidomide, just thought I should sort that out.
I did end up having 5 rounds of treatment because BMT dragged their feet a bit on deciding how to do the DLI. It was decided that we would contact the donor and ask for more fresh cells. I think the main reason for the this was my adverse reaction to the stem cell preservative DMSO many moons ago when I got a DLI in NYC.
The decision to give a much larger amount of T-cells was made by Dr McGuirk because my best hope of longer term survival is GVT (graft versus tumor effect) which is when the T-cells or fighting cells attack the cancer cells in my body. There is a danger of there being too much of a fight between
my cells and the donor cells which is called GVHD (graft versus host disease). This is an age old balance with stem cell transplants, and I feel this is already too much information and you're falling asleep.
Lets just say GVHD kills a lot of people and causes all kinds of problems acute and chronic so it can be just as much of a problem as cancer.
The trial I followed for 2 years was trying very hard to find out how to get GVT without any GVHD. However after 4 DLI's, which were done in the hope of creating GVT, this had not happened and my disease had returned. So with a view of giving a lot more T-cells and hoping to be able to manage a small amount of GVHD (which brings with it GVT) it was deemed a worthwhile risk and the hope of a longer remission.
...and so far no GVHD, so I might get more cells in the future. I've been told the window of when
GVHD can happen is 4-8 weeks post DLI.
So as of today March 31st 2015, I feel pretty good. I tested positive for RSV about 10 days ago but got over it in a couple of weeks (and no pneumonia) which is good for me.
Dr Lipe told me about a new test called 'flow cytometry' which is done to the bone marrow biopsy. It detects 1 in 10,000 cells vs the old test which detected 1 in 1000. So I requested a BMB and the results came back negative which is great! It means I'm in remission (as per the new more sensitive test) and I can continue with my planned Carfilzomib maintenance.
Another continuance...
April 14th
So busy day today, I went into clinic for maintenance and when I saw McGuirk he confirmed what Kristy and I had thought, I have chronic GVHD in my mouth (looks like a rash, feels like sunburn at the moment). To check if it is in my lungs (which is a bigger problem) I did a number of tests, starting with running up a few flights of stairs and checking my HR and O2 in my blood which were both fine. I also had a CT scan of my lungs and then a pulmonary function test (PFT). Both of these tests came back fine, which is a huge relief!
Over the past weeks I've done some running (not much) and been on the trainer in the basement 30 minutes at a time. On chemo days and for a couple of days after I feel too tired to work out but the rest of the time is fine.
So all in all, things are going in the right direction. Hopefully a little GVHD means a longer remission and having 2 weeks between treatments means my strength can continue to improve...which will be helpful as our new baby girl is due in 8 weeks!
