Don't know what dose you're on Torch, but take it easy coming off them. ease off them slowly.
Sounds weird but as long as it's working
How are you feeling for tomorrow?
Ok so went today. Good news is genetic mutation which caused disease has gone. Other news is they still believe I do still have the disease but the graft (the transplant) is keeping it at bay. So the upshot is as long as the graft keeps working I should be ok.
My bone marrow is 96% donor and 4% me and my immune system is 93% donor and 7% me. Both within acceptable tolerance level. I have also taken on the blood group of my donor. Weird.
He'd probably want his own bone marrow put back!Imagine if you discovered SBK was the donor
Good to hear. Enjoy your day up the match and fingers crossed the good luck continues.Ok so went today. Good news is genetic mutation which caused disease has gone. Other news is they still believe I do still have the disease but the graft (the transplant) is keeping it at bay. So the upshot is as long as the graft keeps working I should be ok.
My bone marrow is 96% donor and 4% me and my immune system is 93% donor and 7% me. Both within acceptable tolerance level. I have also taken on the blood group of my donor. Weird.
Ok so went today. Good news is genetic mutation which caused disease has gone. Other news is they still believe I do still have the disease but the graft (the transplant) is keeping it at bay. So the upshot is as long as the graft keeps working I should be ok.
My bone marrow is 96% donor and 4% me and my immune system is 93% donor and 7% me. Both within acceptable tolerance level. I have also taken on the blood group of my donor. Weird.
Hope you're still doing well. Does this mean the donor immune system is fighting the disease off? Is the hope still that you get to a stage where the disease is completely gone or is it a case of controlling it?
Hope you enjoyed the game last week and that you have many more to come.
Don't know to be honest. Because it is rare I don't think they know how it will behave. I have to have another bone marrow biopsy this week, plus a full CT scan, bone density test and normal appointment with consultant. In a couple of weeks I have to start a weekly dose of treatment to stop viral infections such as glandular fever, etc which apparently I am susceptible too now I've had a transplant.
Is that forever or just because it's so soon?
Finally got the all-clear yesterday, the disease has completely gone.
Just got to take it easy for another couple of months then I can think of going back to work, though it will only be about three hours a day initially.
Consultant said he was pleased as my strain of leukaemia is not only rare but can also be extremely aggressive. It is the first case they have come across and so they were making the treatment up as they were going along, but it seems to have worked which is the main thing.
Still have to attend weekly clinics to keep an eye on my blood counts. My dependency on the steroids (I am currently a bit of a moon face) and the anti-rejection drugs is going to be slowly decreased to let my new immune system fight the good fight. As it happens I had a cold and a cough this week, the first since I was diagnosed last October and my system fought it well. It is down to the transplant now. As the consultant pointed out I had mine three months ago but you cannot be confident a transplant is successful for three years, so a long way to go.
Finally got the all-clear yesterday, the disease has completely gone.
Just got to take it easy for another couple of months then I can think of going back to work, though it will only be about three hours a day initially.
Consultant said he was pleased as my strain of leukaemia is not only rare but can also be extremely aggressive. It is the first case they have come across and so they were making the treatment up as they were going along, but it seems to have worked which is the main thing.
Still have to attend weekly clinics to keep an eye on my blood counts. My dependency on the steroids (I am currently a bit of a moon face) and the anti-rejection drugs is going to be slowly decreased to let my new immune system fight the good fight. As it happens I had a cold and a cough this week, the first since I was diagnosed last October and my system fought it well. It is down to the transplant now. As the consultant pointed out I had mine three months ago but you cannot be confident a transplant is successful for three years, so a long way to go.
great news Torch - fingers crossed the transplant works in the long run. Have a great weekend with your family celebrating the news and hopefully 3 points!!
Amazing newsFinally got the all-clear yesterday, the disease has completely gone.
Just got to take it easy for another couple of months then I can think of going back to work, though it will only be about three hours a day initially.
Consultant said he was pleased as my strain of leukaemia is not only rare but can also be extremely aggressive. It is the first case they have come across and so they were making the treatment up as they were going along, but it seems to have worked which is the main thing.
Still have to attend weekly clinics to keep an eye on my blood counts. My dependency on the steroids (I am currently a bit of a moon face) and the anti-rejection drugs is going to be slowly decreased to let my new immune system fight the good fight. As it happens I had a cold and a cough this week, the first since I was diagnosed last October and my system fought it well. It is down to the transplant now. As the consultant pointed out I had mine three months ago but you cannot be confident a transplant is successful for three years, so a long way to go.
Amazing newswe can stop being nice to you now and back to calling you Tim Fisher!
Fantastic news Torch, does this mean I can uncross my fingers as they're starting to ache:emoji_fingers_crossed:Finally got the all-clear yesterday, the disease has completely gone.
Just got to take it easy for another couple of months then I can think of going back to work, though it will only be about three hours a day initially.
Consultant said he was pleased as my strain of leukaemia is not only rare but can also be extremely aggressive. It is the first case they have come across and so they were making the treatment up as they were going along, but it seems to have worked which is the main thing.
Still have to attend weekly clinics to keep an eye on my blood counts. My dependency on the steroids (I am currently a bit of a moon face) and the anti-rejection drugs is going to be slowly decreased to let my new immune system fight the good fight. As it happens I had a cold and a cough this week, the first since I was diagnosed last October and my system fought it well. It is down to the transplant now. As the consultant pointed out I had mine three months ago but you cannot be confident a transplant is successful for three years, so a long way to go.
Delighted for you mateFinally got the all-clear yesterday, the disease has completely gone.
Just got to take it easy for another couple of months then I can think of going back to work, though it will only be about three hours a day initially.
Consultant said he was pleased as my strain of leukaemia is not only rare but can also be extremely aggressive. It is the first case they have come across and so they were making the treatment up as they were going along, but it seems to have worked which is the main thing.
Still have to attend weekly clinics to keep an eye on my blood counts. My dependency on the steroids (I am currently a bit of a moon face) and the anti-rejection drugs is going to be slowly decreased to let my new immune system fight the good fight. As it happens I had a cold and a cough this week, the first since I was diagnosed last October and my system fought it well. It is down to the transplant now. As the consultant pointed out I had mine three months ago but you cannot be confident a transplant is successful for three years, so a long way to go.
Amazing news, congrats.Finally got the all-clear yesterday, the disease has completely gone.
Finally got the all-clear yesterday, the disease has completely gone.
Just got to take it easy for another couple of months then I can think of going back to work, though it will only be about three hours a day initially.
Consultant said he was pleased as my strain of leukaemia is not only rare but can also be extremely aggressive. It is the first case they have come across and so they were making the treatment up as they were going along, but it seems to have worked which is the main thing.
Still have to attend weekly clinics to keep an eye on my blood counts. My dependency on the steroids (I am currently a bit of a moon face) and the anti-rejection drugs is going to be slowly decreased to let my new immune system fight the good fight. As it happens I had a cold and a cough this week, the first since I was diagnosed last October and my system fought it well. It is down to the transplant now. As the consultant pointed out I had mine three months ago but you cannot be confident a transplant is successful for three years, so a long way to go.
Great news Torch. After what must have been months of worry and uncertainty for you and your family, it's surely the news you have all been waiting for.
One day at a time I suppose and very best wishes both now and for your future.
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