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what an awful and unfair thing.Sorry to hear this OP. My wife is now 20 years since initial diagnosis of AML and 17 years since a bone marrow transplant. She ran her first London Marathon 2 years ago and will run again next year for Anthony Nolan.
As has been said above treatment has changed hugely with many advances over the last 20 years.
I wish you and your family all the best for the coming months/years.
As has been said above treatment has changed hugely with many advances over the last 20 years.
I wish you and your family all the best for the coming months/years.
t sometimes. Sorry to hear this, as has been said, outcomes for childhood AML are vastly better than they ever used to be, though the treatment is tough.
I was diagnosed with AML two years ago, treated with chemo and achieved remission. I then relapsed in July last year but achieved a second remission and had a donor stem cell transplant in October. Things are looking up, I still get very tired and am dealing with a new 'normal', but am disease free so far. Children generally come through even better. A friend of mine has a now 12 year old who was diagnosed with AML at age 5, and is now absolutely fine.
It is a lot to take in, but as time goes by the specialised nurses at the hospital are great for advice. Each case is different, though your grandson's consultant will be able to quickly characterise what the best treatment route is through looking at cytogenetics, identifying the particular mutations in the cells responsible.
If you or the parents need advice do feel free to PM me, or go to www.bloodwise.org.uk . Bloodwise is a charity focussed on blood cancers and related conditions, they have well written advice, can provide booklets or PDF's, a forum, blogs, and an advice line. I found them really helpful and have signed up as a patient ambassador to try and help other patients in the position I was in.
Thinking of you all, it does get better, and do feel free to contact me any time.
Brett
I was diagnosed with AML two years ago, treated with chemo and achieved remission. I then relapsed in July last year but achieved a second remission and had a donor stem cell transplant in October. Things are looking up, I still get very tired and am dealing with a new 'normal', but am disease free so far. Children generally come through even better. A friend of mine has a now 12 year old who was diagnosed with AML at age 5, and is now absolutely fine.
It is a lot to take in, but as time goes by the specialised nurses at the hospital are great for advice. Each case is different, though your grandson's consultant will be able to quickly characterise what the best treatment route is through looking at cytogenetics, identifying the particular mutations in the cells responsible.
If you or the parents need advice do feel free to PM me, or go to www.bloodwise.org.uk . Bloodwise is a charity focussed on blood cancers and related conditions, they have well written advice, can provide booklets or PDF's, a forum, blogs, and an advice line. I found them really helpful and have signed up as a patient ambassador to try and help other patients in the position I was in.
Thinking of you all, it does get better, and do feel free to contact me any time.
Brett
Edited by Biggles111 on Sunday 22 May 11:05
Thanks for that, Brett. Blood transfusions and platelets perked him up no end, and his liver and spleen have returned to normal. My son can't speak too highly of the treatment at Palma. A bedroom has been available for him and his wife, they have had visits from a social worker and a psychologist and Rory is getting a couple of hours play therapy a day to alleviate the boredom
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Sorry to hear your news. Dad was diagnosed with Hairy Cell Leukaemia nearly 12 years ago and has now been in remission for around 11
As said above, there are massive advancements in treatment and the outlook is more positive.
Hope the little one recovers well and that the rest of the family can take comfort in each other
As said above, there are massive advancements in treatment and the outlook is more positive.
Hope the little one recovers well and that the rest of the family can take comfort in each other
I'm sorry to hear about the diagnosis in your grandson. His poor parents must be going through hell. Leukaemia in childhood is most commonly ALL. If it is, give this a read here as it will help explain things:
http://www.macmillan.org.uk/information-and-suppor...
If it isn't ALL then its rare and any questions probably best answered by your Grandson's paeds oncologist. Where is he going to have his treatment based? If you want any specific questions answered feel free to PM and i'll try to help.
http://www.macmillan.org.uk/information-and-suppor...
If it isn't ALL then its rare and any questions probably best answered by your Grandson's paeds oncologist. Where is he going to have his treatment based? If you want any specific questions answered feel free to PM and i'll try to help.
It's been a long haul. After two months chemotherapy in Palma he was in remission then we brought him back to England for stem cell/bone marrow transplant which the Mallorcam oncologist was insistent he needed. His counterpart over here thought different and said that three courses of remission chemotherapy would do the trick.
Within a month his cancer count was back to 70% so we were back to square one. To cut a long story short he was sent home on Friday. "Nothing more we can do".
With the help of Macmillan, we are getting a second biopsy done next week and his notes are being sent to some hotshot boffin in Glasgow.
Others may have given up. We can't.
Within a month his cancer count was back to 70% so we were back to square one. To cut a long story short he was sent home on Friday. "Nothing more we can do".
With the help of Macmillan, we are getting a second biopsy done next week and his notes are being sent to some hotshot boffin in Glasgow.
Others may have given up. We can't.
pitboard said:
It's been a long haul. After two months chemotherapy in Palma he was in remission then we brought him back to England for stem cell/bone marrow transplant which the Mallorcam oncologist was insistent he needed. His counterpart over here thought different and said that three courses of remission chemotherapy would do the trick.
Within a month his cancer count was back to 70% so we were back to square one. To cut a long story short he was sent home on Friday. "Nothing more we can do".
With the help of Macmillan, we are getting a second biopsy done next week and his notes are being sent to some hotshot boffin in Glasgow.
Others may have given up. We can't.
So sorry to hear this, all the best, wish I could think of something else to say Within a month his cancer count was back to 70% so we were back to square one. To cut a long story short he was sent home on Friday. "Nothing more we can do".
With the help of Macmillan, we are getting a second biopsy done next week and his notes are being sent to some hotshot boffin in Glasgow.
Others may have given up. We can't.
TwistingMyMelon said:
pitboard said:
It's been a long haul. After two months chemotherapy in Palma he was in remission then we brought him back to England for stem cell/bone marrow transplant which the Mallorcam oncologist was insistent he needed. His counterpart over here thought different and said that three courses of remission chemotherapy would do the trick.
Within a month his cancer count was back to 70% so we were back to square one. To cut a long story short he was sent home on Friday. "Nothing more we can do".
With the help of Macmillan, we are getting a second biopsy done next week and his notes are being sent to some hotshot boffin in Glasgow.
Others may have given up. We can't.
So sorry to hear this, all the best, wish I could think of something else to say Within a month his cancer count was back to 70% so we were back to square one. To cut a long story short he was sent home on Friday. "Nothing more we can do".
With the help of Macmillan, we are getting a second biopsy done next week and his notes are being sent to some hotshot boffin in Glasgow.
Others may have given up. We can't.
pitboard said:
The roller coaster continues. The hotshot boffin considers that Rory may benefit from a new American drug she is testing, designed especially to with the vicious cancer cells normal chemo can't handle. Treatment starts on Friday. I'll keep you posted
I don't know you. I never will. And I am not religious at all. But I just said a quiet prayer. I wish you all the best.Gassing Station | Health Matters | Top of Page | What's New | My Stuff