Continuing on from my blog entry about the clinical trial drug SGN35, I mentioned that I had the very difficult decision whether to decide to go for a bone marrow transplant. The SGN35 drug got me to remission for the first time in 7 years, but it was guessed that if I didn’t follow this up with harder-hitting treatment to attempt to keep it there, that I would most probably only live for about 3 years.
Unfortunately there weren’t many statistics available, for someone in my position, to look at. Many people have had bone marrow transplants, but it is highly uncommon for a patient with Hodgkins disease to get to the stage of needing one. It is one of the most curable cancers. Trust me to have a very rare stubborn version of it! The only statistics I could be told about were for other cancers and people with a completely different treatment history than mine. The survival rate for a bone marrow transplant is getting better and better, but I was told it was about 30%.
I had a stem cell transplant (from my own stem cells which were harvested a few months before the procedure) in 2005. The chemotherapy leading up to the transplant would be very similar for the bone marrow transplant, so I kind of knew what to expect. What I didn’t know was how different it would be after receiving the donor’s cells. There are ideally 10 things they need to match in a donor. Transplants can go ahead with an 8/10 or 9/10 match, but 10 is obviously the best. Two matches were found out of 11 million people on the Anthony Nolan Register for me. One was pregnant, so couldn’t be a donor at the time, and the other was a 43year old German man who thankfully agreed to donate his cells. He actually ended up being a 12 out of 12 match, which made my chances even better.
The intensive chemo beforehand was utterly horrible, and receiving the cells (21st September 2011) actually only took about 30 minutes, through a drip, into the Hickman line which I had in my chest for just over 8 months. The recovery was (and still is) a very long process. After my stem cell transplant in 2005 I was in hospital for only 9 days, and each day afterwards I got better and better. This time round I was in hospital (in a little isolated room) for just over a month, and I only noticed a bit of progress after about 3 months and it was extremely gradual. It is a huge balancing act trying to get someone else’s cells to agree with your body and not kill you. Luckily things have been going ok and in January 2012 I received my first scan results since my transplant which showed that there was still no disease present.
I continue to recover from the transplant and still need regular blood transfusions, as my new bone marrow isn’t producing red blood cells just yet, but I am beginning to do a few bits of work again and still slowly trying to get my energy back.
I kept a Journal every day during my time in hospital, and regular updates ever since being discharged. I am still updating it from time-to-time, when more results become available, and with any new advances in my blood. Here is a link to my Caring Bridge Journal, where you can read about the lead up to my transplant, the transplant itself (Day 0) and right up to the latest.