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I am looking for my sombody who has it in their heart to share their experiences with my Dad?
Hi there,
I would like to start by introducing myself, My name is Rachel and I live in Godmanchester.
My Dad has had AML twice now and now still has CML, he has had chemotherapy both times for the AML and responded well and went into remission for ten months after the first time, so now his heametology consultant has asked him to gain as much information as possible as if the bone marrow he had done last week comes back that the chemo has made improvement then he would suggest a bone marrow transplant as the next step. He is 63 and also has suffered from angina attacks and had a stent put in at Papworth hospital roughly 2 months ago.
My dad has said to me that he wishes he could speak to somebody in the same situation or that has been in that situation before as he would like to know their experiences, hence the reason for this post. I will be signing him up to this Anthony Nolan website when he is feeling a bit better and has the concentration to learn how to use this tablet that I'm using to do this as he isn't too great with technology. Lol.
My Dad, my family and I would be very greatful for any responses.
Wishing you all success, love and happiness
Thank you so much
Kind regards
Rach
X
I would like to start by introducing myself, My name is Rachel and I live in Godmanchester.
My Dad has had AML twice now and now still has CML, he has had chemotherapy both times for the AML and responded well and went into remission for ten months after the first time, so now his heametology consultant has asked him to gain as much information as possible as if the bone marrow he had done last week comes back that the chemo has made improvement then he would suggest a bone marrow transplant as the next step. He is 63 and also has suffered from angina attacks and had a stent put in at Papworth hospital roughly 2 months ago.
My dad has said to me that he wishes he could speak to somebody in the same situation or that has been in that situation before as he would like to know their experiences, hence the reason for this post. I will be signing him up to this Anthony Nolan website when he is feeling a bit better and has the concentration to learn how to use this tablet that I'm using to do this as he isn't too great with technology. Lol.
My Dad, my family and I would be very greatful for any responses.
Wishing you all success, love and happiness
Thank you so much
Kind regards
Rach
X
Answers
You'll find plenty of support on here from people who have been through transplants and others who are at a similar stage to your dads. It sounds like he's had a tough time and is no doubt apprehensive about the transplant. I hope we can help support you and your dad through this tough time.
I had a transplant in January 2011 to complete my treatment for ALL at the age of 46, so a little younger than your dad, though I know there are others on the forum who are of a similar age and have had the same condition, so they can perhaps help with their experience of the treatment of the same condition.
Please do encourage your dad to sign up, and both of you should feel free to ask any questions you have. We can't give any medical advice, but we all have a wealth of experience about how it feels to go through the transplant process. It really does help to talk to others who are in the same boat or who have been there. It helps you realise you are not alone and that that things can get back to normal eventually.
Good luck to your dad, and please keep in touch through here to keep us updated and ask questions if you need to.
Steve.
My daughter has now signed me up so thank you for your reply.
My name is Richard and what I would really like to know, is how it actually felt when receiving the transplant? I am apprehensive about it yes, I'm not worried about the chemo or losing my hair or feeling and being sick with the runs, I'm worried that the transplant will not work. I have heard of others who have had to have 3 or 4 transplants before so this does worry me.
Once again Thank you very much
Best wishes
Richard
I had my transplant just over a year ago, and can reassure you that the actual moment of receiving the new cells is very easy – almost an anticlimax! For me it took about half an hour via a drip into my Hickman line, and I didn't feel anything different, at least physically.
Psychologically it's a different question, of course, as that's the special moment that is giving you the best possible chance of getting over your illness – I decided to make my 'Day Zero' a celebration, so my wife and dad brought in party hats, a big Zero balloon and some sparkling cordial! I always like to focus on the positives and so concentrated on the opportunity the transplant was providing :-)
As far as I understood it, the chances of the transplant itself not working (the cells not engrafting) are relatively low among the general risks associated with having a transplant, particularly if a good match has been found; and even if it doesn't take as successfully as hoped, there is the possibility of donor lymphocyte infusions (more cells from the donor) to bolster the transplant. A couple of friends have needed this and are now both doing well.
Hope that helps a little; do keep posting and asking, and know that we're all cheering you on!
All the best,
George
I've replied to your other discussion, but George has said similar to me that the actual receiving of the new cells was actually a none event in the end. The hardest part is the recovery afterwards and the waiting game to see whether the transplant has grafted.
That is as much, if not more a psychological battle as a physical one and whilst you feel weakened by the process, the effect on you mentally is every bit as tough. It is really hard to feel positive, particularly when you are feeling really poorly, but please don't give up!!
I like Georges idea of celebrating 'Day Zero' and that is something you could carry on throughout your recovery. I've said to others at various times that they should celebrate every milestone in their recovery, such as your cell count growing, going home, reducing your immuno-suppression, Day 100, and so on.
You also have the benefit of this forum to back up the support you will get from your family and friends, so please consider us your extended family and call in from time to time to let us know how you're doing and share your concerns. you'll find many helping hands and supportive voices here and we're all rooting for you.
Good luck with your treatment and please do stay in touch.
Steve
Got your message, thanks for that. At the moment I am waiting for another bone marrow biopsy, the one I did last week came back inconclusive due to a mix up at Addenbrooks hospital, along with 4 others. Once again thanks I found it most encouraging
Richard
Hi Steve,
thanks for your last message. At the moment I am waiting for a fourth Bone Marrow biopsy, the last one was inconclusive, Hopefully it will be next week. Will keep in touch
Richard