Definitely no breathlessness now!
Thanks Alan, hopefully I will make it around the full route! My main motivation for doing it is to prove there is life after such horrible illnesses. I found this forum after I had my transplant and it is a good positive community. When I looked at other forums when I was diagnosed I found them all quite morbid and lacking anything positive. My best advice is to stay positive, ask questions if you have any concerns to the medical staff and if something isn’t right tell the medical staff about it. All the best
I thought I’d shine a little bit more light at the end of your tunnel of uncertainty. I was diagnosed with Acute Myeloid Leukaemia April 2008 @ 47. Received my brothers Stem Cells in August 2008 - if you’ve done your maths right, I’m 14 yrs 4 months Post Stem cell transplant.
It’s tough, but listen & follow what your team tell you.
Life does return to normal, but be prepared to take baby steps.
The best piece of advice I received was to put on as much weight as possible prior to transplant.
Thanks for your response and I appreciate your comments very much. Wow 14 years and 4 months ago thats brilliant. Yes i will listen to the team and already preparing myself for it to be a slow process. Quite a few people have said now about putting the weight on prior to transplant, think this is what ill do to.
So sorry to hear about your diagnosis and rapid start to treatment ( Azacitidine presumably?).
I’m quite involved with Myelodysplastic syndrome (MDS) UK which is a support charity for people with Myelodysplastic syndrome (MDS) and CMML. We recently put on a webinar about stem cell transplantation led by Dr Victoria Potter who is one of the leading stem cell transplant professionals in the UK; she is based at King’s College Hospital, London.
In this recording, not only do you get a really clear explanation of the process of Stem cell transplant, but there is also a Q and A afterwards and can watch and listen to the experiences of many people who have had a transplant. We had some wonderful reviews afterwards so I hope you would also find it helpful.
There is plenty to read up on about transplants, as has been mentioned, but it can probably get a bit overwhelming? As others have said, you have your young age on your side so I do hope all goes well for you.
Here is the You Tube link;
All best wishes
Yeah your right its Azacitidine. Start round 2 on thursday.
Thank you so much, ill get a watch of this, which im sure, will give me more of an insight into the stem cell transplant.
Please keep me updated with any other webinars/ news/publications
Hi Alan just wanted to ask how things are going for you. Trust all is well
Happy new year to you.
Im doing ok thanks. Just finished my second round of Azacitidine on the 23rd Dec. Just had bloods taken today to see if i neeed a blod transfusion this thursday.
How are you? Hope your well.
How are you doing?
My partner is almost identical in terms of circumstances with your condition she too is 42 and was diagnosed around 5 weeks ago. I really think she may benefit from hearing from you would this be possible
Hi @Amager a great big welcome to our forum, I am so glad you have found us, you are obviously very caring.
Perhaps your wife might post on here if she feels she would like to.
I think everyone processes and deals with things in their own time and way.
One of the joys of this forum is that it is here for both of you.
Also although our stories might have many similarities we are all very special individuals and treatments are now very much targeted to the individuals.
How are you doing?
Just give yourselves time and be very kind to yourselves.
If your partner need to talk I’m more than happy to try and help out.