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Just joined the forum - imminent SCT
Hello everyone
My name is Nigel and I have just joined this forum. I am aged 57, I live in the West Country and am diagnosed with MDS with complex cytogenetics. Fortunately, I keep pretty well and I now have a provisional date for admission later this month to Kings College London for an SCT.
My MDS story unusually starts some years before diagnosis because in about 2006, my sister was diagnosed with MDS. (Despite the very best of care and specialist treatment at King’s in London, her condition became AML and she sadly died in 2011, aged just 57)
Then in early October 2014, I had a routine blood test because I had developed acute Psoriasis and was feeling really washed-out and suffering night sweats.In the following December I had my own MDS diagnosis,
I have since had 6 cycles of Azacitidine locally but obviously the SCT is new stage altogether.
I await this stage with some trepidation but remain positive. I look forward to reading more information on this forum.
Nigel
My name is Nigel and I have just joined this forum. I am aged 57, I live in the West Country and am diagnosed with MDS with complex cytogenetics. Fortunately, I keep pretty well and I now have a provisional date for admission later this month to Kings College London for an SCT.
My MDS story unusually starts some years before diagnosis because in about 2006, my sister was diagnosed with MDS. (Despite the very best of care and specialist treatment at King’s in London, her condition became AML and she sadly died in 2011, aged just 57)
Then in early October 2014, I had a routine blood test because I had developed acute Psoriasis and was feeling really washed-out and suffering night sweats.In the following December I had my own MDS diagnosis,
I have since had 6 cycles of Azacitidine locally but obviously the SCT is new stage altogether.
I await this stage with some trepidation but remain positive. I look forward to reading more information on this forum.
Nigel
Comments
I'm sure you'll find lots of useful information here and possibly one or two things that might give you concern. However your attitude is the right one to take and you must stay positive throughout, even though at times that will be challenged.
Your experience with your sister has possibly given you some indication of what to expect and is no doubt the cause of some anxiety for you to go through the same. I'm sure though that even in the space of 10 years since your sisters diagnosis the treatments and care have moved on and yours will be a success where sadly hers wasn't.
You mention that you generally keep well which is a good thing and I urge you to keep exercising as much as you can. I fell foul of being lazy during my recovery and spending too much time in bed or laid on the sofa. As a consequence my recovery was very slow and it took a long time to me to regain my strength.
Nutrition is also important and you need to try and keep eating despite the sickness the transplant process will more than likely cause in the early days after the transplant. you can probably expect your taste to change, so it is a case of finding things that still taste good and that you can tolerate in those early days.
If you have specific concerns or queries please ask away. There are several others who have had transplants for MDS and they will be able to pass on their own experiences.
Above all though keep in mind that we are all unique and that everyone's experience will be different, so what someone might have found difficult for them might be less so for you and so on.
All the best for your treatment and please keep us up to date ion your progress.
Steve
Welcome to the forum, I'm sure you will find it helpful.
Sorry to hear about your sister's experience and now your diagnosis of MDS. However it does sound that things are being addressed and I'm sure that the SCT will be a success for you. Transplant is a big step and I'm sure you will have been fully briefed. It is a long and slow recovery but be patient and stay positive and you will be fine. Also not everything you will have read will necessarily apply to you.
I was diagnosed in early 2012 with hypoplastic MDS and had an unrelated donor transplant in May 2012. I was 63 years old and like you had a routine blood test in late 2011 which picked out a lower than normal platelet level. Further blood tests showed the platelet levels continued to drop, my local hospital carried out the bone marrow biopsy and samples were sent as routine to our local cancer hospital, The Christie, Manchester. Bone marrow failure was diagnosed and I was referred to The Christie, by which time platelet counts were heading towards single figures. I had no symptoms other than one unexplained bruise on my leg. I was reasonably fit, I was working, self employed 3 days a week doing a job I really enjoyed. My wife and I had a busy social and leisure life. Our family had grown up and we helped out with child care for our grandchildren.
We were told on the first appointment that in my case there was only one cure and that was a SCT. To say we were shocked was an understatement and platelet transfusions began immediately. The whole process towards transplant moved very quickly for me, I made the decision to retire. A donor was found very quickly, we managed a few days away in the Lake District before transplant then went ahead with the treatment.
Transplant has been a success, there have been many ups and downs but in three weeks I will be celebrating 4 years post transplant. Anthony Nolan have been really helpful for me in my recovery, and helped me to meet my donor which was a special occasion.
Steve is right with his comment that we are all different therefore our experiences will differ. We are here to support each other so if we can help then please get in touch.
Best wishes
Peter
Nigel