Yes, Michelleanne, I've got a good therapist. I couldn't have got through it without. In the clinic I saw someone too, onlx 3 times in 8 months but extremely helpful.
I've been prescribed more immune suppressants, I'm hoping they'll make a difference, a big difference. They'll bring with them their own side effects and dangers, but thats gvhd.
It's so hard. Thank you so much all of you for being there.
Hello everyone . Helen, I’m so pleased that you’ve had a little bit of respite from your symptoms although I know that it’s a constant battle .
Michelle , I am just wondering how long you have been on the immune suppressants . I’m not sure how long ago it was that you had your second SCT .
Dave I’m so sorry that you are still having such a rough time and I agree with the others that it might be good if you could chat with a therapist or someone who understands a bit about what you are going through.
My daughter is not doing too badly, physically and we are so thankful for this . They are slowly reducing the immunosuppressants but with care in case the gvhd rears its ugly head . She’s struggling a bit with mood swings and I think possibly the effects of everything that the treatment has done to her body.
I know for you all that it’s such a life changing illness . You are all ( and I include my daughter) amazingly strong to plough through the bad days and embrace the good ones. You are all my heroes! Xx
audrey , I’m so pleased to hear your daughter is doing well , this illness effects all your body and mind , I think it helps once we have come to terms with the new person we are and what we have and are going through it makes a big difference
it’s 3 years in august since I had my bmt I’ve never been taken off my immune suppressants , could be on them for a few more years ,I wonder if that’s why my gvhd is mild , compared to helen &dave
Hello all, that's good news about your daughter Audrey. It's such a delicate situation we're all in. Crossing fingers she can keep it up. It's lovely to think of her playing with her boys. They've got their mum back a bit.
Unfortunately I was at an appointment today in a clinic not so far away in the black forest. I'd had it recommended by my physios. I got to see the very experienced doctor too. It was a good appointment, he really took time, open, listened well, empathetic. But he said there's nothing he can do. He was a bit shocked that my skin is so bad and my team at the University clinic where my team is, that they haven't tried to do more.
He's told me to get the team to make an appointment in a specific department there with a dermatologist with at least 20 years experience.
I was in tears but thankfully took a friend in with me which helped.
I slept a lot today which was good and tomorrow I'll see my therapist which will hopefully help. Today, I took my opiate based painkillers so that I could do some housework. It's only the second time but I'm worried about addiction. I think I should be less frightened of it and just accept it.
Also I'm thinking of researching dermatology departments with burns specialism because I am told what I and I think Dave has got with the gvhd skin needs an approach similar to burns treatment. My skin on my feet feels as thick as a good quality stiff leather hand bag and the skin feels like it's losing contact with my foot.
But I now doubt there's anything anyone can do or it would have happened already. At least the ecp makes me feel stronger.
Dave, I read a bit on facebook gvhd skin , people describing what we've got. It was useful. I do now believe we have the same thing... scleroderma? Can't remember what is called. One said ..like a neoprene wet suit one size too small. Mine feels like badly fitted neoprene that is losing contact with the feet inside, pulling and buckling. We can describe the details in the long term chronic gvhd thread Dave.
I'm hoping this is an acute phase of a week or two, soo painful.
I'm in the clinic Monday Tuesday. Tuesday afternoon I'm trying to prevent/ plan that I don't get depressed.
Hi Everyone, it’s been a while since I posted. I thought I would let you know that my husbands counts having started to come back up and he is now completely off the immunosuppressant MMF. His Hb has gone down a little but apparently this is just due to rubbish bone marrow because of a second transplant. We are hoping it’ll be better in the weeks to come. He is however struggling with his strength and lately he has become abit forgetful and repeating himself. He keeps saying his head is aching so that’s annoy he thing for me to worry about. 🙈 hope you all have a wonderful weekend x
helen I really hope they can get help for you it is so hard but try and stay positive always here for you 🤞❤️
hi beagle girl is good to hear the slight improvement in your husband , this awful illness we go through effects our mind and body , tell him not too be so hard on himself , I’m exactly the same it’s something we have to come to terms with stay strong
Time to enjoy snuggling up in bed or on the sofa. Hope you can take something for your chest. Holding head over warm water with a towel over my head was good for me. It soothed it.
A friend was over today and she caught me feeling really low which was helpful. We had a good chat.
Hi Everyone,
It's Rachel the Lead Nurse here at Anthony Nolan. It's really lovely to see you all supporting each other through all these difficult complications and emotions post-transplant.
I just wanted to post some information regarding pain killers (analgesia) after reading Helen's comment about her worry using opiate based pain killers, hopefully to put her (and anyone else reading this thread) mind at ease..
It is a very common fear that strong painkillers, or opioids like morphine, will become addictive to those taking them but it’s rare for people who take prescribed pain drugs to get addicted. Addiction happens because people get a high feeling from a drug and this makes them want to take it again. But when doctors prescribe painkillers properly for pain control, most people don't get a psychological high. So are very unlikely to get addicted.
Your body can adapt to having morphine type painkillers, especially if you’re taking high doses for a long time. This is called physical dependence. It is not addiction. It means that if you stop taking the painkiller suddenly, you might develop withdrawal symptoms, such as cramps, sweating and diarrhoea. Doctors and nurses usually avoid this by gradually reducing your painkiller dose rather than stopping suddenly.
You might also hear the term 'drug tolerance'. This means that your body gets used to a drug over time and you need more of it to get the same level of pain control. Most people taking pain medicines infrequently (a few times a week for example) do not develop this. But if you do, your doctor or nurse may adjust the dose of your painkiller slightly or change you to a different kind of medicine.
Sometimes doctors will also adjust your painkiller dose if your pain gets better or worse. For example, if pain increases they may increase the dose or frequency of your painkillers or add other drugs in.
Speaking to your therapist about the anxiety around taking opiate based medication is a really sensible plan, I'd also encourage you to speak to your doctor/CNS about how often you're taking it and if it's enabling you to do the activities you want to.
I hope that is of some reassurance to you and helps you to feel more comfortable using the morphine to help you carry out tasks, both the mundane and enjoyable!!
Look after yourselves and keep supporting each other.
Kind regards
Rachel
Thanks Rachel, I'm trying to only take it occasionally. I think it'll be easy for me to get physically addicted because it relaxes me by reducing the pain. I don't get a high, i get a relaxed feeling. The myfortic or jakavi gives me insomnia so it's nice to feel calm.
All that said, I'm very sensible, proactive and aware and caution is appropriate. It's a good idea to talk to my GP about it thank you.
Tomorrow the boss wants to meet me with the dermatologist so I think they realise they need to do something apart from killing pain. I'll keep you posted. Tonight I'm in the clinic.
Sleep well all of you. Night night. ...Thanks again Rachel. Yes we really do have a special thing here together.
just following on from my last post. I’m a bit worried about my husband. He told me he fed the dogs but all he did was put the bowls down and then put them in the sink 🙈 he’s very confused about things but can remember things like his mothers maiden name etc. I’ve l just started dinner and asked him to cover the chicken over with a food net thingy as I was in the bath. It is ok ages so I got out and he put the chopping board that the chicken was on in the saucepan and the chicken in a saucepan 🙈 could this be just a simple UTI or is it that maybe the leukaemia is back and it’s gone to his brain? Yes I know to remain positive but I can’t help thinking the worst I’m panicking all the time. Oh and forgot to add he is always having a headache. He’s told me that I’m not to say anything to the doctors tomorrow at clinic but I have to. What should I do? X
Hello everyone and sorry that I haven’t been on here for a while. I’m being kept busy with the grandkids and we’ve had a very difficult week as the driver of the car which killed my son was charged and it was all over the media again
Anyway, I have been thinking about you all and Helen, I’m so sorry that you are going through so much pain and such a difficult time . I have to taken tramadol for my fibro pain and it takes the edge off it. I’ve never felt addicted to it as I take the prescribed dose . I think if meds help and you are careful with them, then they will help.
I think about you all so much and know the fight that you go through everyday. I can also “hear” in your texts how strong you all are, supporting and caring for each other
Michelle, I hope that you have managed to rest and that your chest clears up soon.
Dave , we’re all thinking about you and hope to hear from you soon , when you are feeling up to it.
Sending love and positive thoughts that you all feel a bit better in the days to come . Xx
helen , I think as long as we follow guidelines and drs advise on medication I would take all the help I could get ,
hope all went well in the clinic and your other app
beagle girl , your husband sounds like he is in a good place if he can help you , I’m just starting to do that now , my mind plays tricks on me also , I think you should mention it just to put your mind at rest
audrey , I’m so sorry to hear about what’s going on with you my friend had to go through the same it is so devastating I hope you get some peace
Dave , I hope you are coping , things aren’t getting any worse
Thanks for the advice and shared experience with the painkillers. I feel more confident with it now. It's useful to have two sorts.
Auds, I can't imagine what you're going through. It must be devastating. We're holding your hand. You're amazingly supportive here, thank you for being yourself with us. Words aren't enough.
Beaglegirl, That sounds scarey. Has it just started? I suggest you contact the team about it. I had a micro-stroke whilst in the clinic and it took quite a lot of effort to get back to reading, following a film, conversation etc. My speach also suffered, word retrieval. But I'm continuing to improve. When I had it I didn't realise. It went unnoticed.
To be honest, the combi of jakavi and ecp doesn't seem to be a wonder solution for my skin. The ecp is great and I wouldn't be here without jakavi, but they haven't helped my skin.
Something from Facebook...
"Have they considered belumosudil/Rezurock? My husband was on Jakafi for GVHD scleroderma and fascitis, then switched to this newer med and it has been helpful. " this came from the gvhd Facebook site.
Comments
Glad you had a good day yesterday you deserve it. Can I get a good day too, as I need it.
Hi all
helen I’m so glad you’ve had a good day ,
dave so sorry to hear you are still having bad days , wish I could wave a magic wand to help you
keep strong , have you had someone to talk to it may help you through things , I know it helped me
best wishes ❤️
Hello all,
Yes, Michelleanne, I've got a good therapist. I couldn't have got through it without. In the clinic I saw someone too, onlx 3 times in 8 months but extremely helpful.
I've been prescribed more immune suppressants, I'm hoping they'll make a difference, a big difference. They'll bring with them their own side effects and dangers, but thats gvhd.
It's so hard. Thank you so much all of you for being there.
Love
Helen
Hi Helen
Pleased to hear about your therapist , the one I had was a god sent to us
im still on my immune suppressants I’m on them constant maybe for another couple of years hope they help you
❤️
How's your daughter Audrey?
Hello everyone . Helen, I’m so pleased that you’ve had a little bit of respite from your symptoms although I know that it’s a constant battle .
Michelle , I am just wondering how long you have been on the immune suppressants . I’m not sure how long ago it was that you had your second SCT .
Dave I’m so sorry that you are still having such a rough time and I agree with the others that it might be good if you could chat with a therapist or someone who understands a bit about what you are going through.
My daughter is not doing too badly, physically and we are so thankful for this . They are slowly reducing the immunosuppressants but with care in case the gvhd rears its ugly head . She’s struggling a bit with mood swings and I think possibly the effects of everything that the treatment has done to her body.
I know for you all that it’s such a life changing illness . You are all ( and I include my daughter) amazingly strong to plough through the bad days and embrace the good ones. You are all my heroes! Xx
Hi all
audrey , I’m so pleased to hear your daughter is doing well , this illness effects all your body and mind , I think it helps once we have come to terms with the new person we are and what we have and are going through it makes a big difference
it’s 3 years in august since I had my bmt I’ve never been taken off my immune suppressants , could be on them for a few more years ,I wonder if that’s why my gvhd is mild , compared to helen &dave
I also take a small does of mild antidepressant ,
hope all is going ok with you Dave and helen
keep strong love to you all
michelleanne ❤️
Hello all, that's good news about your daughter Audrey. It's such a delicate situation we're all in. Crossing fingers she can keep it up. It's lovely to think of her playing with her boys. They've got their mum back a bit.
Unfortunately I was at an appointment today in a clinic not so far away in the black forest. I'd had it recommended by my physios. I got to see the very experienced doctor too. It was a good appointment, he really took time, open, listened well, empathetic. But he said there's nothing he can do. He was a bit shocked that my skin is so bad and my team at the University clinic where my team is, that they haven't tried to do more.
He's told me to get the team to make an appointment in a specific department there with a dermatologist with at least 20 years experience.
I was in tears but thankfully took a friend in with me which helped.
Best of luck to us all,
Love,
Helen
Hi helen
im so sorry to hear your news , let’s hope you can get sorted with some other treatment
thinking of you stay strong
❤️
Thank you Michelleanne,
I slept a lot today which was good and tomorrow I'll see my therapist which will hopefully help. Today, I took my opiate based painkillers so that I could do some housework. It's only the second time but I'm worried about addiction. I think I should be less frightened of it and just accept it.
Also I'm thinking of researching dermatology departments with burns specialism because I am told what I and I think Dave has got with the gvhd skin needs an approach similar to burns treatment. My skin on my feet feels as thick as a good quality stiff leather hand bag and the skin feels like it's losing contact with my foot.
But I now doubt there's anything anyone can do or it would have happened already. At least the ecp makes me feel stronger.
I'd better get off to sleep.
Night night, thank you all.
Love
Helen
Hi helen
I’m so so sorry to hear of your struggle
I really hope they can find something to help
keep strong
❤️
Thanks Michelleanne. The therapist was useful.
Dave, I read a bit on facebook gvhd skin , people describing what we've got. It was useful. I do now believe we have the same thing... scleroderma? Can't remember what is called. One said ..like a neoprene wet suit one size too small. Mine feels like badly fitted neoprene that is losing contact with the feet inside, pulling and buckling. We can describe the details in the long term chronic gvhd thread Dave.
I'm hoping this is an acute phase of a week or two, soo painful.
I'm in the clinic Monday Tuesday. Tuesday afternoon I'm trying to prevent/ plan that I don't get depressed.
Love to all.
Helen
Hi Everyone, it’s been a while since I posted. I thought I would let you know that my husbands counts having started to come back up and he is now completely off the immunosuppressant MMF. His Hb has gone down a little but apparently this is just due to rubbish bone marrow because of a second transplant. We are hoping it’ll be better in the weeks to come. He is however struggling with his strength and lately he has become abit forgetful and repeating himself. He keeps saying his head is aching so that’s annoy he thing for me to worry about. 🙈 hope you all have a wonderful weekend x
Hi all
helen I really hope they can get help for you it is so hard but try and stay positive always here for you 🤞❤️
hi beagle girl is good to hear the slight improvement in your husband , this awful illness we go through effects our mind and body , tell him not too be so hard on himself , I’m exactly the same it’s something we have to come to terms with stay strong
❤️
Thank you Michelleanne,
How are you?
X
Hi Helen
I’ve just had another venesection outs left me very tired , I also have a bad chest apart from that I’m ok ❤️
Time to enjoy snuggling up in bed or on the sofa. Hope you can take something for your chest. Holding head over warm water with a towel over my head was good for me. It soothed it.
A friend was over today and she caught me feeling really low which was helpful. We had a good chat.
Love to all.
Helen
I’ve tried all that , I’ve enjoyed snuggling in bed with my book
hope your chat with your friend helped a lot
❤️
Hi Everyone,
It's Rachel the Lead Nurse here at Anthony Nolan. It's really lovely to see you all supporting each other through all these difficult complications and emotions post-transplant.
I just wanted to post some information regarding pain killers (analgesia) after reading Helen's comment about her worry using opiate based pain killers, hopefully to put her (and anyone else reading this thread) mind at ease..
It is a very common fear that strong painkillers, or opioids like morphine, will become addictive to those taking them but it’s rare for people who take prescribed pain drugs to get addicted. Addiction happens because people get a high feeling from a drug and this makes them want to take it again. But when doctors prescribe painkillers properly for pain control, most people don't get a psychological high. So are very unlikely to get addicted.
Your body can adapt to having morphine type painkillers, especially if you’re taking high doses for a long time. This is called physical dependence. It is not addiction. It means that if you stop taking the painkiller suddenly, you might develop withdrawal symptoms, such as cramps, sweating and diarrhoea. Doctors and nurses usually avoid this by gradually reducing your painkiller dose rather than stopping suddenly.
You might also hear the term 'drug tolerance'. This means that your body gets used to a drug over time and you need more of it to get the same level of pain control. Most people taking pain medicines infrequently (a few times a week for example) do not develop this. But if you do, your doctor or nurse may adjust the dose of your painkiller slightly or change you to a different kind of medicine.
Sometimes doctors will also adjust your painkiller dose if your pain gets better or worse. For example, if pain increases they may increase the dose or frequency of your painkillers or add other drugs in.
Speaking to your therapist about the anxiety around taking opiate based medication is a really sensible plan, I'd also encourage you to speak to your doctor/CNS about how often you're taking it and if it's enabling you to do the activities you want to.
I hope that is of some reassurance to you and helps you to feel more comfortable using the morphine to help you carry out tasks, both the mundane and enjoyable!!
Look after yourselves and keep supporting each other.
Kind regards
Rachel
Thanks Rachel, I'm trying to only take it occasionally. I think it'll be easy for me to get physically addicted because it relaxes me by reducing the pain. I don't get a high, i get a relaxed feeling. The myfortic or jakavi gives me insomnia so it's nice to feel calm.
All that said, I'm very sensible, proactive and aware and caution is appropriate. It's a good idea to talk to my GP about it thank you.
Tomorrow the boss wants to meet me with the dermatologist so I think they realise they need to do something apart from killing pain. I'll keep you posted. Tonight I'm in the clinic.
Sleep well all of you. Night night. ...Thanks again Rachel. Yes we really do have a special thing here together.
Love
Helen
Hey Everyone,
just following on from my last post. I’m a bit worried about my husband. He told me he fed the dogs but all he did was put the bowls down and then put them in the sink 🙈 he’s very confused about things but can remember things like his mothers maiden name etc. I’ve l just started dinner and asked him to cover the chicken over with a food net thingy as I was in the bath. It is ok ages so I got out and he put the chopping board that the chicken was on in the saucepan and the chicken in a saucepan 🙈 could this be just a simple UTI or is it that maybe the leukaemia is back and it’s gone to his brain? Yes I know to remain positive but I can’t help thinking the worst I’m panicking all the time. Oh and forgot to add he is always having a headache. He’s told me that I’m not to say anything to the doctors tomorrow at clinic but I have to. What should I do? X
Hello everyone and sorry that I haven’t been on here for a while. I’m being kept busy with the grandkids and we’ve had a very difficult week as the driver of the car which killed my son was charged and it was all over the media again
Anyway, I have been thinking about you all and Helen, I’m so sorry that you are going through so much pain and such a difficult time . I have to taken tramadol for my fibro pain and it takes the edge off it. I’ve never felt addicted to it as I take the prescribed dose . I think if meds help and you are careful with them, then they will help.
I think about you all so much and know the fight that you go through everyday. I can also “hear” in your texts how strong you all are, supporting and caring for each other
Michelle, I hope that you have managed to rest and that your chest clears up soon.
Dave , we’re all thinking about you and hope to hear from you soon , when you are feeling up to it.
Sending love and positive thoughts that you all feel a bit better in the days to come . Xx
Hi all
helen , I think as long as we follow guidelines and drs advise on medication I would take all the help I could get ,
hope all went well in the clinic and your other app
beagle girl , your husband sounds like he is in a good place if he can help you , I’m just starting to do that now , my mind plays tricks on me also , I think you should mention it just to put your mind at rest
audrey , I’m so sorry to hear about what’s going on with you my friend had to go through the same it is so devastating I hope you get some peace
Dave , I hope you are coping , things aren’t getting any worse
thinking of you all keep strong ❤️
Beagle girl- try to stay strong. Your husband has and is going through so much. Speak to his consultant and hopefully he can reassure you.
He has such a severe illness with all
sorts of side effects to the treatment, illness and medication. I really hope that the doctor can put your mind at rest.
Hello all,
Thanks for the advice and shared experience with the painkillers. I feel more confident with it now. It's useful to have two sorts.
Auds, I can't imagine what you're going through. It must be devastating. We're holding your hand. You're amazingly supportive here, thank you for being yourself with us. Words aren't enough.
Beaglegirl, That sounds scarey. Has it just started? I suggest you contact the team about it. I had a micro-stroke whilst in the clinic and it took quite a lot of effort to get back to reading, following a film, conversation etc. My speach also suffered, word retrieval. But I'm continuing to improve. When I had it I didn't realise. It went unnoticed.
Have to go... love to all,
Helen
Hello All,
Maybe this is useful Dave.
To be honest, the combi of jakavi and ecp doesn't seem to be a wonder solution for my skin. The ecp is great and I wouldn't be here without jakavi, but they haven't helped my skin.
Something from Facebook...
"Have they considered belumosudil/Rezurock? My husband was on Jakafi for GVHD scleroderma and fascitis, then switched to this newer med and it has been helpful. " this came from the gvhd Facebook site.
have a peaceful Sunday,
Love
Helen
Hello all,
It's been a while.
How's your chest Michelleanne? I do hope they can help you with it.
Auds, sorry to hear you suffer from pain too. Hope you can keep it under control. Howsyour daughter?
Beaglegirl, how are you getting on? Have you found anything to help with the wait? Maybe you've already got the results?
Dave, I've written to you in the chronic gvhd thread. Seems more appropriate.
I'm sending you all strength and love. I wish I could send magic spells... sleep well all ,
Helen
Hi helen
my chest is a little better , think it’s more viral hope all is well with everyone
❤️
Keep it up Michelleanne. You're doing a great job. Viral coughs take ages , even for the fittest.
I'm sending you a hug from me and the group.
Love
Helen
Hi helen
thankyou it’s taking ages , gets me down
hugs to you all 🫶🏻