Sarah Reakes: My Imminent Stem Cell Transplant Treatment
Posted: 16 Jan 2015 11:34
Hi everyone,
I have not posted for quite some time as my MDS, diagnosed in June 2011, was a low risk variant (5q-) and I have been on wait and watch until very recently with no treatment, and so I have been quietly getting on with my life.
However as a result of asking for a referral to another hospital and having a routine bone marrow biopsy carried out, I was told on 25 November 2014 that my MDS, showed I had 15-20% blasts and therefore had now progressed to a high risk (IPSS score of 5) giving me a prognosis of 18 months at best.
I was told that my only curative option was to have a bone marrow transplant and following many weeks of tests to check that I was fit enough to go through the transplant process, and tissue typing of my siblings to find a donor, I have now reached the stage where I am due to start my intense chemotherapy next week to destroy the leukemic blast cells to put me into remission before proceeding to the conditioning chemotherapy prior to the transplant itself. I have been very fortunate in that Nick, my twin brother, has been confirmed as my donor match which should improve my chances of the Stem Cell Transplant being a cure.
All this will take many months and throughout the process, my immune system will be severely compromised and I will be very vulnerable to infections, and so I will either be in isolation in hospital or at home, so it will be very easy for me, and Simon my husband, to become quite cut off from the outside world.
With this in mind, and as a way of keeping in touch with family and friends far and wide, I have set up a blog where I (or Simon on my behalf) can post a daily journal to let everyone know how I am getting on. Previous transplant patients set up similar blogs and I followed their stories and I found their postings incredibly positive, uplifting and informative and it has helped me no end in facing my imminent treatment in forewarning me of what to expect and how to prepare for it.
I will not be able to respond to individual postings but it will be extremely helpful to me to know that there are family, friends and fellow MDS sufferers, out there who care and are willing me to get well. You really can't have too much of it. The Caring Bridge link to the website is: www.caringbridge.org/visit/sarahreakes and I have set it up before being admitted just so that I can see that it is up and running okay and it’s one less thing to worry about once I’m in hospital.
I am booked to go into Bristol Haematology and Oncology Hospital next Tuesday 20 January, but I will have to phone the ward on Monday to check that they have a bed for me. I have prepared an overview to my blog which does give you some idea of what my treatment plan will involve. It will be a case of taking it a day at a time, but I have had the added benefit of insider knowledge from the likes of Jayne Snell and John Watson who have both had Stem Cell Transplants and are doing great two years on, and their knowledge and words of encouragement have been so valuable to me. They also set up Caring Bridge blogs which I followed, and they found the love and support of family and friends key to their recovery, and coping with the isolation and rigours of the treatment.
I look forward to you visiting my blog and I will do my best to post regularly to keep you up to date with my progress.
Love and best wishes to you all.
Sarah xxx
I have not posted for quite some time as my MDS, diagnosed in June 2011, was a low risk variant (5q-) and I have been on wait and watch until very recently with no treatment, and so I have been quietly getting on with my life.
However as a result of asking for a referral to another hospital and having a routine bone marrow biopsy carried out, I was told on 25 November 2014 that my MDS, showed I had 15-20% blasts and therefore had now progressed to a high risk (IPSS score of 5) giving me a prognosis of 18 months at best.
I was told that my only curative option was to have a bone marrow transplant and following many weeks of tests to check that I was fit enough to go through the transplant process, and tissue typing of my siblings to find a donor, I have now reached the stage where I am due to start my intense chemotherapy next week to destroy the leukemic blast cells to put me into remission before proceeding to the conditioning chemotherapy prior to the transplant itself. I have been very fortunate in that Nick, my twin brother, has been confirmed as my donor match which should improve my chances of the Stem Cell Transplant being a cure.
All this will take many months and throughout the process, my immune system will be severely compromised and I will be very vulnerable to infections, and so I will either be in isolation in hospital or at home, so it will be very easy for me, and Simon my husband, to become quite cut off from the outside world.
With this in mind, and as a way of keeping in touch with family and friends far and wide, I have set up a blog where I (or Simon on my behalf) can post a daily journal to let everyone know how I am getting on. Previous transplant patients set up similar blogs and I followed their stories and I found their postings incredibly positive, uplifting and informative and it has helped me no end in facing my imminent treatment in forewarning me of what to expect and how to prepare for it.
I will not be able to respond to individual postings but it will be extremely helpful to me to know that there are family, friends and fellow MDS sufferers, out there who care and are willing me to get well. You really can't have too much of it. The Caring Bridge link to the website is: www.caringbridge.org/visit/sarahreakes and I have set it up before being admitted just so that I can see that it is up and running okay and it’s one less thing to worry about once I’m in hospital.
I am booked to go into Bristol Haematology and Oncology Hospital next Tuesday 20 January, but I will have to phone the ward on Monday to check that they have a bed for me. I have prepared an overview to my blog which does give you some idea of what my treatment plan will involve. It will be a case of taking it a day at a time, but I have had the added benefit of insider knowledge from the likes of Jayne Snell and John Watson who have both had Stem Cell Transplants and are doing great two years on, and their knowledge and words of encouragement have been so valuable to me. They also set up Caring Bridge blogs which I followed, and they found the love and support of family and friends key to their recovery, and coping with the isolation and rigours of the treatment.
I look forward to you visiting my blog and I will do my best to post regularly to keep you up to date with my progress.
Love and best wishes to you all.
Sarah xxx