Just following on from the above, I have found the below link on the Macmillan website, which recommends you contact your local council to see whether he is eligible for a blue badge or not...
I am pleased that your brother is doing well, that is great. I just want to reiterate what Greg and Nichola have said, its all good advice. Going out should be encouraged along as he feels ready and well enough but it is a balance. You do need to use common sense and avoid large crowds etc but its really important that he doesn't isolate himself away. This is an essential part of his recovery and getting back to his 'normal' life, the reason he had the transplant in the first place. There are no restrictions on driving other than he feels well and safe enough to do so. Great tip from Nichola about the blue badge, many patients do not even think about this and it will make his life a bit easier.
Thank you Nichola and Hayley some very helpful tips from both of you. My brother always appreciates the input. He is back behind the wheel and it is good that he can get that independence back
My brother is still doing really well generally and quickly moving towards day 80 shortly, which is good news! His medical team are now reducing his cyclosporine quite rapidly which is also good however it still leaves us wondering how other peoples experienced this time, regarding onset of gvhd etc?
If anyone has any specifically related problems or other tips at this time we would appreciate them?
Hi Mandy, Glad to hear that your brother is doing really well. Reducing cyclosporine around this time is fairly normal I think. You might hear doctors referring to acute and chronic GvHD - I think the difference between the two is whether it happens pre or post 100 days although I think the split is quite arbitrary. Acute tends to flare quickly and severely, chronic tends to be less quickly developed and longer lasting. They say some GvHD can be good as an attack against the disease but too much of it is bad, so it remains a balancing act to get things right. I had acute GvHD of the skin, liver and gut which flared up around Day 50. For me, it was obvious that I had GvHD - literally overnight, my digestive system stopped working and I came up in a blotchy rash on the trunk of my body. I didn't have symptoms of liver GvHD - it came up in blood results and I think it was fairly mild. With chronic GvHD, I think you can get it in a lot more organs but thankfully I have not had any experience of that myself, but I know others on the forum have so hopefully will be able to offer insight. My advice would be to try not to worry about it - there is nothing you can do to influence it and if your brother does get some, try to look on it as a positive as some of it is considered to be positive. Hope this helps. Please ask away if I can help further. All the best, Greg
Wow those 80 days seem to have gone quickly. It doesn't seem like 5 minutes since we met at the Patient and Families day in Birmingham and at that stage your brother was about to start his transplant. I'm really pleased to hear he is doing well and it's a good sign that his medical team are able to reduce his Cyclosporine.
I would say try not to worry too much about GvHD as it may not happen. It doesn't affect everyone but if it does start then it can usually be controlled and treated. Your brother just needs to be aware of what is going on with his body and let his medical team know if he notices anything different or unusual, particularly with his skin, eyes or tummy. Fingers crossed he will get through this without any issues and continue his recovery unhindered.
Glad to hear that your brother is doing well. As the CSA is being reduced he is more likely to experience GvHD but this is not a guarantee. So just be vigilant for any skin rashes or change in bowel habit and let his transplant team know if anything changes. Remember that GvHD is a good thing and it just needs to be controlled but if he doesn't get any GvHD than that isn't a bad thing either. So the best advice is to carry on doing what you are doing and just keep in touch with his team if and when he gets any symptoms.
Hi all well my brother is still doing well..... bit of an understatement really, he's doing great! This week he has had results of first bone marrow after transplant and he is in remission which is brilliant news to hear
Hi all, Just a quick update my brother is completely off cyclosporine now so we are all hoping that nothing major starts off and keeping our fingers crossed of course but I was wondering if this is the time when there is a higher risks of complications and if anyone out there experienced any particularly around this time? He has finished about 5 days now? Many thanks Mandy
Hi Mandy, that's great news and he seems to have made fantastic progress to be off Cyclosporin already.
I would have thought if any problems were going to show up with such as GvHD they would have appeared as the Cyclosporin was reduced, which is what happened for me so they stopped reducing my dose and I didn't come off it for about 2 years. I have to say that having suffered GvHD post transplant I haven't experienced any problems since the Cyclosporin stopped.
Hi Steve, thanks so much thats what we think too! It does seem very quick to be off it already doesn't it? However the team are really happy with his progress so even though we can't get ahead of ourselves as we know how things can change quickly along the journey we are indeed hoping that he reaches a full recovery in the years to come. We hope your keeping well and thanks for your wishes Take care
Glad to hear that your brother is doing well. Its positive to get off the cyclosporine, is he about 4 months post transplant now? Obviously he is still at risk of GvHD but the longer he goes off CSA and with no GvHD the less likely he is to get it. Sounds like its all going well.
Yes he is still doing fine and it's day 124 today so your right about 4 months post transplant. We are still in early days stage yet I guess but we are very pleased how he's recovering, and it's lovely to hear he can go and do a little bit at work now and again ( which helps him get some normality back!)
Hi guys, it’s been awhile and my months post Everything has been absolutely spot on to be honest, he’s been back at work,building up energy and strength bit by bit,all his counts have beeen very good which has been fantastic however last tests his platelets have suddenly dropped to 26!! All his other blood numbers have not moved and he’s not on any meds other than the penicillin so we are slightly confused/worried ? He has had his childhood immunisations in the last month? Just wondering if anyone out there has had any similar experience? Thanks all Mandy
Sorry all my auto correction must have clicked in without me realising! Meant to start by my brother has been doing great and he is 8 months post transplant!!
Hi Mandy, Really sorry to hear your news. I don’t have experience similar to your brother’s. My counts were consistently low and only started improving from the 20s around 8 months post-transplant. What I was told by the doctors was to try to ignore the one-off results as they can be affected by a lot of things - what was more important was the trend. I’m really hoping this proves to be a one-off and your brother’s counts bounce back at the next test. All the best, Greg
Thanks for the update and I'm pleased to hear that your brother is doing well in his recovery and I hope that his drop in platelets is a minor blip.
I often think we perhaps get too hung up on counts because we're monitored so often, and I wonder if you monitored a healthy person without the complications we've had you might see similar discrepancies.
I guess if he's had some of his immunisations that might have affected things slightly perhaps. I didn't have any blood tests close enough to my jabs to have been aware of any changes so it's difficult to gauge whether this is something normal.
I presume that his blood results have come via his medical team so I assume that if they were worried at all they would be taking steps to address it. If they are happy, particularly as his other levels are within the normal ranges, I would try not to worry about it too much.
Depending on when his next tests are due you'll probably find that they've bounced back up.
Hi Steve and Greg, Thanks for your information it’s very helpful to get different perspectives on it all! Yes hopefully just a blip with having the immunisations etc. They have got him in today for a bone marrow test so they are taking no chances which is good! Unfortunately then he will have to wait a long week to get results of course
Hi all, Unfortunately on our return to clinic today for results my brother has 9% of leukaemic cells back, so it’s not just the blip we were hoping for! We have to go back next week to go through the plan but it looks likely that he will be on azacitidine to try for a remission again and then DLI afterwards? Just wondering if anyone has any experience with this route or advise? Thanks Mandy
Oh Mandy, I’m sorry to hear this. It’s clearly not the news you’d hoped for but there are others who’ve had similar experiences here and have gone down this treatment route. I hope the medical team can get him back into remission quickly and without complications and get things restarted with a DLI.
I know it will be hard but please try to stay positive yourself and keep supporting your brother the way you have been to this point. We’ll all be here to support you too and those who have gone through the treatment your brother now needs can hopefully help. I’ll try and find a link to some of the threads that may help you and posting to those threads may promote a response which will help.
I hope your brother is coping ok and is facing this new challenge with a positive outlook.
There’s a thread with three other patients going through the same treatment. It’s a while since there’s been an update but it may help to know that your brother isn’t the only one that this has happened to. I see that Rob has been on the forum most recently in mid November so perhaps a post on there might get a response?
Have a look at the ‘Relapse after 11 months’ thread in Day 100 and beyond.
Hello Mandy. I am Jane (61 now) and my leukaemia returned in August after a 2 and a half year remission following a stem cell transplant. I am so sorry to hear your brother is facing this. I started azacitidine in August and I have just completed my 4th round. I was really nervous about starting chemo but this time has been relatively easy. (The first time was rough) Advice? As Steve says, stay positive.......this is sometimes hard, but we can help each other with this. I take certain steps to help myself ( I feel I must do something!) For example, I am careful with food......especially when my white cell count is on the floor; I avoid hot crowded rooms where germs spread like mad; I ask friends not to visit if they have colds, etc; I also have anti-bac gel at the front door to help avoid spread of bugs (nobody minds!) ; these are small things that help me. I have remained ok and live life pretty much as I would normally within limitations of tiredness and hospital visits. I do get sore sometimes (not often) at the injection sites, but it goes quickly with the cream. I have also need of laxatives which makes constipation manageable. I do wish your brother well. It is a scary time, I know. Take care and if you want to ask anything, I'd be glad to help if I can Best wishes, Jane
Jane it is reassuring that your going on well with the azacitidine treatment and are generally having fewer problematic symptoms than other chemo as you have all been through enough already. I hope that your progression continues to be a good one and that my brothers experience will be similar with the right outcomes afterwards.
Many Thanks again both for taking time to respond Here’s to focusing on a brighter future for all Mandy
Yes, I hope all goes well for him too. It seems a long time before we find out if the chemo is doing any good, but I figure that, as I have no control over that anyway, I try to concentrate on making the most of the "here and now" and every day I feel well is a bonus! All the best to you and your brother. Do keep in touch Jane
Thanks again Jane, yes I understand what you mean it’s a long process with no indication of how things are actually going which must be a little frustrating and worrying at times, but it is good way to look at things from the perspective of the ‘here and now’ I think. I hope you go on ok Jane and get the results needed soon. Best wishes to you and your family Mandy
I am so sorry that your brother has relapsed, this must be very difficult for you all when he was doing so well. Like Jane there are people on the forum who have had similar experiences and I have worked with patients in the same position. Using Azacitidine followed by DLI is one of the standard treatments at this stage and the aim would be to initially get the disease under control and once this has been achieved the DLI will be given to try and encourage some GvHD. The GvHD can also cause graft versus leukaemia effect (GvL) which means that it can fight his leukaemia and help keep the disease in remission. It is important to remember that it can take 3-4 cycles of Azacitidine before he will see a good response. Also when he has DLI if he doesn't get GvHD it doesn't mean that it is not working, his disease can still stay in remission. The treatment can all be given as an outpatient but it will affect his counts so he will have to be more vigilant for infections.
You have been such a good support for you brother and it always sounds like you are all very positive so keep this up. I realise this is disappointing but he sounds physically quite strong which means its a good starting point and he will tolerate the treatment. Unfortunately it is a bit of a waiting game but if you pass on the good advice from Steve and Jane this should help him cope and keep life as normal for him as possible.
Please pass on our best wishes and keep us updated when you can.
Comments
http://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/help-with-transport-and-parking/blue-badge-scheme.html
Might be worth a try
I am pleased that your brother is doing well, that is great. I just want to reiterate what Greg and Nichola have said, its all good advice.
Going out should be encouraged along as he feels ready and well enough but it is a balance. You do need to use common sense and avoid large crowds etc but its really important that he doesn't isolate himself away. This is an essential part of his recovery and getting back to his 'normal' life, the reason he had the transplant in the first place.
There are no restrictions on driving other than he feels well and safe enough to do so. Great tip from Nichola about the blue badge, many patients do not even think about this and it will make his life a bit easier.
Keep in touch
Hayley
My brother always appreciates the input. He is back behind the wheel and it is good that he can get that independence back
My brother is still doing really well generally and quickly moving towards day 80 shortly, which is good news!
His medical team are now reducing his cyclosporine quite rapidly which is also good however it still leaves us wondering how other peoples experienced this time, regarding onset of gvhd etc?
If anyone has any specifically related problems or other tips at this time we would appreciate them?
Many Thanks
Glad to hear that your brother is doing really well. Reducing cyclosporine around this time is fairly normal I think. You might hear doctors referring to acute and chronic GvHD - I think the difference between the two is whether it happens pre or post 100 days although I think the split is quite arbitrary. Acute tends to flare quickly and severely, chronic tends to be less quickly developed and longer lasting. They say some GvHD can be good as an attack against the disease but too much of it is bad, so it remains a balancing act to get things right. I had acute GvHD of the skin, liver and gut which flared up around Day 50. For me, it was obvious that I had GvHD - literally overnight, my digestive system stopped working and I came up in a blotchy rash on the trunk of my body. I didn't have symptoms of liver GvHD - it came up in blood results and I think it was fairly mild. With chronic GvHD, I think you can get it in a lot more organs but thankfully I have not had any experience of that myself, but I know others on the forum have so hopefully will be able to offer insight.
My advice would be to try not to worry about it - there is nothing you can do to influence it and if your brother does get some, try to look on it as a positive as some of it is considered to be positive.
Hope this helps. Please ask away if I can help further.
All the best,
Greg
Wow those 80 days seem to have gone quickly. It doesn't seem like 5 minutes since we met at the Patient and Families day in Birmingham and at that stage your brother was about to start his transplant. I'm really pleased to hear he is doing well and it's a good sign that his medical team are able to reduce his Cyclosporine.
I would say try not to worry too much about GvHD as it may not happen. It doesn't affect everyone but if it does start then it can usually be controlled and treated. Your brother just needs to be aware of what is going on with his body and let his medical team know if he notices anything different or unusual, particularly with his skin, eyes or tummy. Fingers crossed he will get through this without any issues and continue his recovery unhindered.
All the best,
Steve
Glad to hear that your brother is doing well. As the CSA is being reduced he is more likely to experience GvHD but this is not a guarantee. So just be vigilant for any skin rashes or change in bowel habit and let his transplant team know if anything changes. Remember that GvHD is a good thing and it just needs to be controlled but if he doesn't get any GvHD than that isn't a bad thing either. So the best advice is to carry on doing what you are doing and just keep in touch with his team if and when he gets any symptoms.
BW
Hayley
Indeed the time seems to be whizzing past quite quickly now and we are so glad he is still heading in the right direction thank goodness
Wishing you the very best,
Greg
Just a quick update my brother is completely off cyclosporine now so we are all hoping that nothing major starts off and keeping our fingers crossed of course but I was wondering if this is the time when there is a higher risks of complications and if anyone out there experienced any particularly around this time?
He has finished about 5 days now?
Many thanks
Mandy
I would have thought if any problems were going to show up with such as GvHD they would have appeared as the Cyclosporin was reduced, which is what happened for me so they stopped reducing my dose and I didn't come off it for about 2 years. I have to say that having suffered GvHD post transplant I haven't experienced any problems since the Cyclosporin stopped.
Fingers crossed everything continues smoothly.
All the best to you all,
Steve
However the team are really happy with his progress so even though we can't get ahead of ourselves as we know how things can change quickly along the journey we are indeed hoping that he reaches a full recovery in the years to come.
We hope your keeping well and thanks for your wishes
Take care
Mandy
Glad to hear that your brother is doing well. Its positive to get off the cyclosporine, is he about 4 months post transplant now? Obviously he is still at risk of GvHD but the longer he goes off CSA and with no GvHD the less likely he is to get it.
Sounds like its all going well.
Best wishes
Hayley
Yes he is still doing fine and it's day 124 today so your right about 4 months post transplant. We are still in early days stage yet I guess but we are very pleased how he's recovering, and it's lovely to hear he can go and do a little bit at work now and again ( which helps him get some normality back!)
Thanks for your kind wishes
All the best
Mandy
Thanks all Mandy
Really sorry to hear your news. I don’t have experience similar to your brother’s. My counts were consistently low and only started improving from the 20s around 8 months post-transplant. What I was told by the doctors was to try to ignore the one-off results as they can be affected by a lot of things - what was more important was the trend. I’m really hoping this proves to be a one-off and your brother’s counts bounce back at the next test.
All the best,
Greg
Thanks for the update and I'm pleased to hear that your brother is doing well in his recovery and I hope that his drop in platelets is a minor blip.
I often think we perhaps get too hung up on counts because we're monitored so often, and I wonder if you monitored a healthy person without the complications we've had you might see similar discrepancies.
I guess if he's had some of his immunisations that might have affected things slightly perhaps. I didn't have any blood tests close enough to my jabs to have been aware of any changes so it's difficult to gauge whether this is something normal.
I presume that his blood results have come via his medical team so I assume that if they were worried at all they would be taking steps to address it. If they are happy, particularly as his other levels are within the normal ranges, I would try not to worry about it too much.
Depending on when his next tests are due you'll probably find that they've bounced back up.
All the best,
Steve
Thanks for your information it’s very helpful to get different perspectives on it all! Yes hopefully just a blip with having the immunisations etc.
They have got him in today for a bone marrow test so they are taking no chances which is good! Unfortunately then he will have to wait a long week to get results of course
Unfortunately on our return to clinic today for results my brother has 9% of leukaemic cells back, so it’s not just the blip we were hoping for! We have to go back next week to go through the plan but it looks likely that he will be on azacitidine to try for a remission again and then DLI afterwards?
Just wondering if anyone has any experience with this route or advise?
Thanks
Mandy
I know it will be hard but please try to stay positive yourself and keep supporting your brother the way you have been to this point. We’ll all be here to support you too and those who have gone through the treatment your brother now needs can hopefully help. I’ll try and find a link to some of the threads that may help you and posting to those threads may promote a response which will help.
I hope your brother is coping ok and is facing this new challenge with a positive outlook.
Sending you best wishes,
Steve
There’s a thread with three other patients going through the same treatment. It’s a while since there’s been an update but it may help to know that your brother isn’t the only one that this has happened to. I see that Rob has been on the forum most recently in mid November so perhaps a post on there might get a response?
Have a look at the ‘Relapse after 11 months’ thread in Day 100 and beyond.
Hope this helps,
Steve
Advice? As Steve says, stay positive.......this is sometimes hard, but we can help each other with this. I take certain steps to help myself ( I feel I must do something!) For example, I am careful with food......especially when my white cell count is on the floor; I avoid hot crowded rooms where germs spread like mad; I ask friends not to visit if they have colds, etc; I also have anti-bac gel at the front door to help avoid spread of bugs (nobody minds!) ; these are small things that help me.
I have remained ok and live life pretty much as I would normally within limitations of tiredness and hospital visits. I do get sore sometimes (not often) at the injection sites, but it goes quickly with the cream. I have also need of laxatives which makes constipation manageable.
I do wish your brother well. It is a scary time, I know.
Take care and if you want to ask anything, I'd be glad to help if I can
Best wishes,
Jane
We appreciate your help and advice
Jane it is reassuring that your going on well with the azacitidine treatment and are generally having fewer problematic symptoms than other chemo as you have all been through enough already.
I hope that your progression continues to be a good one and that my brothers experience will be similar with the right outcomes afterwards.
Many Thanks again both for taking time to respond
Here’s to focusing on a brighter future for all
Mandy
All the best to you and your brother.
Do keep in touch
Jane
I hope you go on ok Jane and get the results needed soon.
Best wishes to you and your family
Mandy
I am so sorry that your brother has relapsed, this must be very difficult for you all when he was doing so well. Like Jane there are people on the forum who have had similar experiences and I have worked with patients in the same position. Using Azacitidine followed by DLI is one of the standard treatments at this stage and the aim would be to initially get the disease under control and once this has been achieved the DLI will be given to try and encourage some GvHD. The GvHD can also cause graft versus leukaemia effect (GvL) which means that it can fight his leukaemia and help keep the disease in remission. It is important to remember that it can take 3-4 cycles of Azacitidine before he will see a good response. Also when he has DLI if he doesn't get GvHD it doesn't mean that it is not working, his disease can still stay in remission. The treatment can all be given as an outpatient but it will affect his counts so he will have to be more vigilant for infections.
You have been such a good support for you brother and it always sounds like you are all very positive so keep this up. I realise this is disappointing but he sounds physically quite strong which means its a good starting point and he will tolerate the treatment. Unfortunately it is a bit of a waiting game but if you pass on the good advice from Steve and Jane this should help him cope and keep life as normal for him as possible.
Please pass on our best wishes and keep us updated when you can.
Best wishes
Hayley