Transplant

Hey all,

I thought I would update everyone on my progress. I hope this post finds all well.

I am now being cared for between Sheffield Hallam (Proffessor Riley, Dr Dalley and Dr Snowdon) and Chesterfield Royal. After I failed both Imatinib (resistance) and Dasatinib (Intolerance) it was decided I would be placed on Nilotinib 400mg twice daily leading into the transplant. Makes sense right ? I was a little wary as Ive had such awful side effects on the previous TKI's. Since Dasatinib failed Ive had my mind set on the transplant. Ive had the feeling, however, that there had been some debate about how to treat me and some doctors were reluctant to proceed with the transplant until they were sure Nilotinib would not control the CML indefinately. It made me feel a little uncertain and without direction although I do appreciate my case has been far from straight forward. The final decision would always be mine though and they would continue the preparation of the transplant until they were told otherwise.

Well this was soon cleared up. It took me 4 days to fail Nilotinib. Its best to give you a summery of my discharge notes as I think that explains what happenned best.

David was admitted at 22.05 hours as an emergency with acute onset of abdominal pain with nausea and vomiting. His symptoms had started at 12.00 hours and progressed quickly into epigatric pain with severe colic. David had been commenced on Nilotinib chemotherapy treatment 4 days ago for CML. Abdominal pain is a common regognised side effect of this treatment. On admission his observations were stable and he had some generalised tenderness in his abdomen. Abdominal X-ray and CXR was normal. FBC Hb 16.8 wbc 12.4 Neuts 10.4 plts 200. He required some morphine analgeisa for pain relief initially, but his symptoms settled rapidly overnight. He remained pain free and fully recovered on the 16/03/11 and was fit for discharge home. He will be reviewed again in clinic on 23/03/11.

My white cell count was elevated due to the vomiting and has since returned to normal levels. Epigastrium (epigatric pain) is the upper central region of the abdomen. Colic is a pain which starts and stops abruptly (I had to look these up for my own benefit). The pain was variable, hideous and occured anything between 30 seconds and ten minutes apart. I had this for 12 hours. Awful, truly awful experience.

Since this episode I found out my sister was NOT a tissue match. 4 potential donars have been found for me in the UK and two in Europe. I am currently on NO medication. When I go to clinic at Chesterfield Royal on the 6th of April I will be asked to make a choice between Hydroxycarbamide and Interferon. Dr Dalley (my transplant consultant) would prefer me to be on Interferon leading into the transplant. (Something about altering the genetic pattern of the BCR-ABL and increasing the chance of the graft being accepted). The landscaping business has had to be shut down (since the 6th of Feb due to the laparotomy/operation as I was told I couldnt lift for 3 months). All my work has been passed on. Because I have reacted so badly to the TKI therapy the doctors are very concerned that Interferon will make me terribly sick. Personally I am more concerned that it will make me depressed and suicidal as did the Imatinib. Unfortunately, there are few remaining options. At the moment I am strong, positive and keeping myself busy building my garden at home. I honestly dont want this to change.

Anything people can tell me about Interferon - Its side effects and how best to deal with them would be a great help.

Best wishes

David

Hello David,

I have not been on the site for quite a while, found it most useful when i needed information and support. Sandy was a star for me when i needed help.

I think it's right that you hear a success story with regards to Stem Cell transplants, so here is my story, but remember everyone is different, there are no golden rules, everyone does it differently.

I was diagnosed shortly after my 40th birthday nearly 4 years ago now. Started on the usual TKI's which went on for about a year. Non of them worked for me, and after about a year of not controlling the disease, transplant was mentioned. I personally had what they call a t315i mutation which stops the TKI's working.

Luckly my Sister was found to be a match and i was booked in for a transplant at the start of 2009. I was being treated in Birmingham by Charlie Craddock and his team. The transplant went well and after 4 weeks i was released. Things then went on a bit of a spiral with GVHD, I managed to manifest it in many places, when it finally moved into my liver and the truth is vertually a year after my transplant i was discharged from hospital into a hospice, the outlook was not good! However for whatever reason i am still here. I've been back to work since the start of this year and im looking forward to the rest of my life.

It has not been easy, but never give up. Take one day at a time, you can deal with it. Do not get to far ahead of yourself. Dont set any expectation apart that you are going to get better. There could be difficult times or you could relatively sail through it, As i said there is not set way of doing this. I think you have got to trust your doctors, i saw no point in agonising over decisions they are best qualified to make. Understand what is happening certainly, but you must trust there experience, nothing is absolutely certain, i am living proof of that.

So best of luck to you, if you want to speak then let me know.

Michael