So phase one was attempted today, and it turned out to be a massively challenging day both physically and mentally.
Firstly I had to get a horribly early (and expensive) train to get to kings for 10ish! (Wasn’t that early, but a lot earlier than what i normally get up! ) I got there and saw the doctor heading up the research trial. We had a discussion about the trial and he explained how it was a 50:50 odds on whether I got the vaccine + DLI or just the DLI. I signed all the consent forms and then I was sent of to do all the blood tests and bone marrow harvest.
Janet got the first few attempts of the harvest… 3 holes made in my left hip – No bone marrow aspirate would come out. Then she tried my right hip, 2 holes made and still no aspirate.
Then Guy came to have a go again in my left hip. By now I’ve actually technically had the max dose of local for my weight, but they kindly agreed to give me some more! Luckily this time we managed to get almost 5mls of aspirate, but this was no where near our target. So Guy had another go, this time in the front of my left hip – No luck there.
Finally Janet persuaded one of the consultants to have a final go in my sternum (breast bone). This attempt was hilarious, the consultant was from the Netherlands and all the equipment here is completely different to what she was used to. Can’t really explain it, but she made both me and Janet laugh! Sadly though again all we could get out was a dribble. At this point we decided enough was enough.
So after 5 holes in my bones, and quite a lot of pain we ended up with 5mls of aspirate…… We were aiming to get 50mls as my blast level is low and we wanted to get as many blast cells as possible. The samples have still been sent to the lab to be tested, but we probably haven’t collected enough blast cells to be able to make the vaccine. And I’m completely gutted. I was so excited about this trial. I was keen to try something new. We know now that chemo will only get my into temporary remission, this was a chance to try something new and hopefully get some positive long term results.
One good thing to come of today is that I got my PICC line inserted. After the trauma of the morning this was totally painless and a very chilled out procedure. Once the local aesthetic was given I almost fell asleep!! So at least I’m now all ready for my chemo on Monday.
Now to prep for chemo next week, and of course to try and make the most of my last few days at home!! Any suggestions of things to do welcome!