I am a 54-year-old Male and in good health apart from needing a SCT. I had AML 21 Years ago and four courses of Chemo. I remained well until End of Aug this year when out of the blue my AML came back, so i went through three courses of Chemo and have been offered a SCT. Two very good donor matches for me have been found & contacted and are on standby they are both young males. At the moment i am well back to work & leading a normal life again. I need to make an important decision do i rely on just the chemo i have received for long term survival/cure or go for the SCT for improved long term survival/cure but with the possible risk of short & long term side effects. I would be interested in hearing from any other males my age group to hear about their experiences good & bad with having the SCT and life after the SCT.
I guess from your perspective it's a really difficult decision to make and one that shouldn't be taken lightly. It will be all the more difficult to make whilst you are currently healthy, knowing that it will make you unwell for a period with a long recovery afterwards.
I'm 50 this year and had my SCT when I was 46, so a little younger. I had ALL and for me the SCT was my best chance of long term survival as I was at a high risk of the ALL coming back. In that case I didn't have any choice and at the beginning of my treatment (even on the day of admission) the goal was to find me a donor and to undergo an STC, which I eventually had after 3 months of chemotherapy.
The initial transplant was a bit of an anticlimax, though all here that have had a transplant will agree that the week or two after the transplant is extremely tough and the recovery for the first few months can appear very slow and never-ending. It does take a long time to get back on your feet but I guess that also depends on your level of fitness leading up to the transplant. I had spent 3 months in hospital receiving progressively harsher chemo and when the transplant came around I didn't feel ready for it.
It was probably 6 months before I started to feel close to recovering my fitness and for me working in the construction industry I was unable to return to full duties until 18 months after my transplant, though I was able to do light duties from 6 months post transplant and my employer was very flexible in allowing me to work from home. Thankfully I was on full pay throughout which helped significantly.
I also suffered from GvHD which affected my skin and probably extended my recovery period due to continuing treatment. GvHD isn't something that affects everyone and I'm sure the screening is getting better to try and reduce the risk of such complications, but it must be taken as a factor when considering whether to have the transplant.
For you I guess we can all tell you of our experiences which will give you a feel for what is involved. Some will have had a better experience than me and others perhaps worse. We are all unique and the effects will be greater in some than others.
The decision must be based on your own personal circumstances and the needs of you and your family. Can you afford to have the time you will undoubtedly need off work and what impact will supporting you have on your family. That must be taken in balance against the benefits to you in the long term which I guess are a substantial reduction in the risk of your AML returning, giving you a stronger chance of long term survival.
I can look back just over 3 years now to my transplant as though it had never happened and I feel just the way I did before I ever got ill, so for me I'm pleased to say that whilst it's taken time to recover it feels almost like it's never happened.
Chat it through with your medical team and your family and all the best with your decision. Please keep us updated and ask more questions if we can help, and of course come back for support if and when you go through with the transplant.
Steve Really appreciate your response I have an appointment to discuss things with the medical team at Churchill Oxford tomorrow , more questions for them , my third meeting with them . And more chats to have with family , friends & work Paul
Good luck with your meeting today Paul, I hope you get good advice from your medical team and they are able to answer all of your questions from a medical perspective.
I'm sure you will have more questions about the patients experience so please come back and ask us any further questions you need to help you make the decision.
I had my SCT at The Churchill in May last year at the age of 47 so a little bit younger than you. My story is that I had AML back in 2011. I had four cycles of chemo and was lucky enough to achieve a complete remission but then in 2014 I was diagnosed with MDS. The only hope of cure was a SCT so a slightly different scenario to yours.
I had a sibling RIC transplant. I had a week of conditioning chemotherapy as an outpatient and then spent 18 days in hospital as an inpatient following the SCT. I was pretty lucky and avoided any real complications. I was up and about the day after my transplant (I managed a 15 minute walk round the hospital grounds) and I kept up the walking and some gentle exercises in my room throughout my stay in hospital.
Life was more tiring once I got home as I went from the relative peace and quiet of my single room to three kids and a boisterous dog at home. That took some adjustment! I didn't experience any chronic fatigue though - I do remember a couple of days where I struggled to get out of bed but I think these were caused by being overambitious in terms of my physical ability and overdoing things in the days before.
I've not had too many problems with GvHD apart from a persistently sore mouth but this can be managed with mouthwashes.
In terms of returning to work, I went back at the end of September, 4.5 months after transplant and then built up to a full-time return over the next three months.
Life now is pretty good. I feel great and my bloods are fully normal so fingers crossed things stay like that.
If you do decide to go ahead with the SCT I would recommend trying to build up a bit of fitness before starting chemo and try and stay mobile during your inpatient stay. Make use of the roof garden on the Haematology Ward (they positively encourage you to get some fresh air) and get out and about when you feel up to it.
I found the food at The Churchill absolutely awful but there is a small kitchen in the day room on the ward which has a microwave so you can always bring your own food in. I think the pizza companies will also deliver to the ward if you are a pizza fan. The dietician Ruth also took pity on me and I had access to a special menu with things like jacket potatoes and pie and chips which made a massive difference.
You'll have free wifi on the ward so bring a tablet or laptop in so you can stream TV or films and keep in touch with the outside world.
I'd be very happy to chat if you have any specific questions about The Churchill.
Good luck with your decision making; I'm sure you'll make the right decision.
Thanks for your comments , advice & info . After my last meeting at the Churchill i have decided to go ahead with the SCT . So few more visits now for tests and preparations and then i will be admitted after Easter on the 29th March for Chemo - SCT - Recovery ,so hope to be back home and all things good during 1st week of May . Just in time for our fantastic hot summer we are getting this year . Its great to hear that you & Steve are doing good & well .
Comments
I had AML 21 Years ago and four courses of Chemo.
I remained well until End of Aug this year when out of the blue my AML came back, so i went through three courses of Chemo and have been offered a SCT.
Two very good donor matches for me have been found & contacted and are on standby they are both young males.
At the moment i am well back to work & leading a normal life again.
I need to make an important decision do i rely on just the chemo i have received for long term survival/cure or go for the SCT for improved long term survival/cure but with the possible risk of short & long term side effects.
I would be interested in hearing from any other males my age group to hear about their experiences good & bad with having the SCT and life after the SCT.
Thanks Paul
I guess from your perspective it's a really difficult decision to make and one that shouldn't be taken lightly. It will be all the more difficult to make whilst you are currently healthy, knowing that it will make you unwell for a period with a long recovery afterwards.
I'm 50 this year and had my SCT when I was 46, so a little younger. I had ALL and for me the SCT was my best chance of long term survival as I was at a high risk of the ALL coming back. In that case I didn't have any choice and at the beginning of my treatment (even on the day of admission) the goal was to find me a donor and to undergo an STC, which I eventually had after 3 months of chemotherapy.
The initial transplant was a bit of an anticlimax, though all here that have had a transplant will agree that the week or two after the transplant is extremely tough and the recovery for the first few months can appear very slow and never-ending. It does take a long time to get back on your feet but I guess that also depends on your level of fitness leading up to the transplant. I had spent 3 months in hospital receiving progressively harsher chemo and when the transplant came around I didn't feel ready for it.
It was probably 6 months before I started to feel close to recovering my fitness and for me working in the construction industry I was unable to return to full duties until 18 months after my transplant, though I was able to do light duties from 6 months post transplant and my employer was very flexible in allowing me to work from home. Thankfully I was on full pay throughout which helped significantly.
I also suffered from GvHD which affected my skin and probably extended my recovery period due to continuing treatment. GvHD isn't something that affects everyone and I'm sure the screening is getting better to try and reduce the risk of such complications, but it must be taken as a factor when considering whether to have the transplant.
For you I guess we can all tell you of our experiences which will give you a feel for what is involved. Some will have had a better experience than me and others perhaps worse. We are all unique and the effects will be greater in some than others.
The decision must be based on your own personal circumstances and the needs of you and your family. Can you afford to have the time you will undoubtedly need off work and what impact will supporting you have on your family. That must be taken in balance against the benefits to you in the long term which I guess are a substantial reduction in the risk of your AML returning, giving you a stronger chance of long term survival.
I can look back just over 3 years now to my transplant as though it had never happened and I feel just the way I did before I ever got ill, so for me I'm pleased to say that whilst it's taken time to recover it feels almost like it's never happened.
Chat it through with your medical team and your family and all the best with your decision. Please keep us updated and ask more questions if we can help, and of course come back for support if and when you go through with the transplant.
Kind reqards,
Steve
Really appreciate your response
I have an appointment to discuss things with the medical team at Churchill Oxford tomorrow , more questions for them , my third meeting with them .
And more chats to have with family , friends & work
Paul
I'm sure you will have more questions about the patients experience so please come back and ask us any further questions you need to help you make the decision.
All the best,
Steve
I think Steve's advice is excellent (as always).
I had my SCT at The Churchill in May last year at the age of 47 so a little bit younger than you. My story is that I had AML back in 2011. I had four cycles of chemo and was lucky enough to achieve a complete remission but then in 2014 I was diagnosed with MDS. The only hope of cure was a SCT so a slightly different scenario to yours.
I had a sibling RIC transplant. I had a week of conditioning chemotherapy as an outpatient and then spent 18 days in hospital as an inpatient following the SCT. I was pretty lucky and avoided any real complications. I was up and about the day after my transplant (I managed a 15 minute walk round the hospital grounds) and I kept up the walking and some gentle exercises in my room throughout my stay in hospital.
Life was more tiring once I got home as I went from the relative peace and quiet of my single room to three kids and a boisterous dog at home. That took some adjustment! I didn't experience any chronic fatigue though - I do remember a couple of days where I struggled to get out of bed but I think these were caused by being overambitious in terms of my physical ability and overdoing things in the days before.
I've not had too many problems with GvHD apart from a persistently sore mouth but this can be managed with mouthwashes.
In terms of returning to work, I went back at the end of September, 4.5 months after transplant and then built up to a full-time return over the next three months.
Life now is pretty good. I feel great and my bloods are fully normal so fingers crossed things stay like that.
If you do decide to go ahead with the SCT I would recommend trying to build up a bit of fitness before starting chemo and try and stay mobile during your inpatient stay. Make use of the roof garden on the Haematology Ward (they positively encourage you to get some fresh air) and get out and about when you feel up to it.
I found the food at The Churchill absolutely awful but there is a small kitchen in the day room on the ward which has a microwave so you can always bring your own food in. I think the pizza companies will also deliver to the ward if you are a pizza fan. The dietician Ruth also took pity on me and I had access to a special menu with things like jacket potatoes and pie and chips which made a massive difference.
You'll have free wifi on the ward so bring a tablet or laptop in so you can stream TV or films and keep in touch with the outside world.
I'd be very happy to chat if you have any specific questions about The Churchill.
Good luck with your decision making; I'm sure you'll make the right decision.
All the best,
Rob.
After my last meeting at the Churchill i have decided to go ahead with the SCT .
So few more visits now for tests and preparations and then i will be admitted after Easter on the 29th March for Chemo - SCT - Recovery ,so hope to be back home and all things good during 1st week of May .
Just in time for our fantastic hot summer we are getting this year .
Its great to hear that you & Steve are doing good & well .
Please stay in touch through here and let us know how you're getting on.
All the best,
Steve