I am posting as an onlooker. My mum was diagnosed with AML in 2020 and successfully had a SCT a few months.
we will be 2yrs post transplant in the summer but mum is suffering terribly from chronic gvhd at the moment. Main symptoms are aggravated eyes (very watering and hard to see), dry mouth, loss of appetite and most worrying breathing issues and chest pain. She has been on and off steroids since transplant and has been having ecp but over the last few months she seems to have really deteriorated.
does anyone have any advice in this situation?
thanks in advance!!
Hi Hollintree, welcome to the forum. I'm one of the online community champions and had a stem cell transplant in 2013 and also suffered from GvHD after my transplant. In my case the GvHD affected my skin mainly and it did take a long time to get over. I was on steroids initially which helped a little, then I was referred to a different hospital for ECP. I ended up having ECP for over two years but it did eventually conquer the GvHD and I haven't had any problems since.
For me, the effect on my skin was irritating and incredibly itchy, but I was OK otherwise. I easily got out of breath but I think that was a result of the transplant than anything GvHD related. I can imagine for your mum that the problems with her eyes, mouth, chest and breathing must be really debilitating and worrying.
Did the steroids and ECP Have any effect at all? With me they had a noticable effect fairly quickly, after which the final effects were more gradual. My GvHD did flare up when the steroids and immuno-suppression were reduced so these were increased again. Has the ECP reduced in frequency at all as that also had an effect when the frequency was reduced too quickly.
Do you think it's the GvHD that is causing the deterioration in your mums condition, or is it just that it's getting her down?
I hope someone can give you more information on their experience of GvHD of the eyes, mouth and chest than I can.
My names Rachel, I am the Lead Nurse here at Anthony Nolan. Thanks for posting to the forum to ask for advice, this is usually given by individuals who have been through transplant or supported others who have, but I wanted to make contact as you mention your Mum is having problems with breathing and chest pain.
If this is a fairly new onset problem I'd suggest she makes contact with her transplant team, assuming they don't already know about these symptoms? Or if they do but they the symptoms are worsening. I'm unsure if she has lung GvHD but this could be a cause for pain/breathing problems. Reducing steroids could also be causing some of these symptoms and she may need to slow the rate at which they are tapering down or possibly have them increased.
Please encourage your Mum to contact her specialist nurse or other health care professional in the post transplant team so she can be reviewed, I'm assuming she is in fairly close contact with them if she's still undergoing ECP/GvHD treatment. Otherwise a discussion with her GP. If you'd like to talk to someone on our helpline (including myself) for further advice please don't hesitate to call our number is: 0303 303 0303.
Thanks both for your comments. Mum is now in hospital under close observation. There is infection in her lungs which is causing pain and breathlessness. There is also concern about gvhd.
Fingers crossed next week is more positive. It is hard when the SCT went so well and the initial recovery was amazing and now the side effects and infection are getting on top of her.
She is being so well looked after so we just have to stay positive! Thanks again
Hi Hollintree, I was wondering how your mum is? Has the infection in her lungs cleared at all?
I hope she's doing ok and she's improving and able to return to her recovery.
The heart problem must be worrying. I had very high levels of potassium in my blood cos I was eating so many bananas cos of the gvhd mouth. Too much potassium can lead to heart problems as can too little. I went from too little to too much.
Hope your mum's holding on ok. I feel that Recovery is a cruel word with chronic gvhd cos it's not like that.
My fatigue seems to have gone but I'm slowly but gradually losing weight. I can only be in the present, the word hope frustrates me. It's tough. I really hope your mum keeps fighting it and can somehow keep positive in the fight.
I'm still on my chronic gvhd journey and feeling imprisoned by it and lonely. I'm still gradually losing weight, no appetite and my skin on my ankles is making me more immobile. Maybe I have that nerve thing in the feet now too, polyneuropathie , which is keeping me awake at night.
Any supportive comments would be appreciated. I'm struggling.
Best wishes to you all,
I got good support through the untire Facebook group. I can recommend it.
Just an update here... Dr said yesterday, the gvhd is under control but it's not good enough. It was helpful to have the check up and hear her support. It calmed me.
Best of luck to all you fellow chronic gvhd sufferers, you're not alone.
There is also a Facebook gvhd group as well which is also very helpful and very supportive with thousands of active members who have all suffered a multitude of gvhd issues. Most of the members are from the US and many treatments are only available from there as well. With so many active users in this group it really makes you feel you are not alone in this long battle.
Thanks very much Dave, I'll check it out.
How's it going Hollintree?
My skin gvhd is limiting my walking and stairs are difficult. Painkillers are helping a bit.
I was told today in writing that I can't drive because of my gvhd eyes. I'm planning on having the tear duct plugs fitted asap and reversing the statement asap. Without the car I cannot manage any of my appointments, physio, therapy, check ups, eye clinic, health care provider. It's awful news. I'm trying to get my head around it.
Any advice or just a few kind words would help. Thanks.
Hi Helen. Long time since update. How is the Ecp resuming? Is it having effect yet? Must be good getting back to it after your covid break. I am just about hanging in here, however no improvement as of yet. Just keep hoping. Struggling with everything though. Sorry about hearing your news though about driving. I have not been driving since 2 years due to gvhd and other issues. I really miss it, the independence etc can you not get some hospital transport? It is what I have had to rely on for my appointments. Not nice but only thing I can do. I hope your plugging works! Does your ankle not cause you issues driving as well? Anyway I hope soon everything goes on an upward keel as they say for us both and all. Look after yourself.
Thanks for getting back, yes imrelieved the ecp is back on. I don't know how, but it is helping. Fatigue is much less. The painkillers are new and seem to be the driver for my new found appetite. I've even put weight on for the first time, as of my last regular check up last week.
Thank you for telling me about your driving problem, it eases the frustration. Yes, it's a good idea about getting transport offered by the health care system. I'm supposed to be showing my health care provider my certificate from my GP for my need for transport for my outpatient treatments. I'll have to send it to them cos I can't get there without a car. Apparently they automatically turn down all outpatient transport. I'll keep you posted.
The stiff ankles were just painful whilst driving, (pedals) and getting in and out too, but the win was big.
Thanks Dave , for your good wishes. Yes, let's hope there are some improvements sometime, for us all, however small.
Helen. A quick note. I did read on a forum that a few users got rid of eye blurriness and watering by having a course of doxycillan 20mg tablets every day and it went away. I have this blurriness issue from gvhd and will see if my consultant will prescribe.
Thanks Dave, really helpful. I'll check it out with my team.
Hi All, Hi Dave,
Wasn't sure which thread to post in but... long term gvhd was clear when I spotted it.
I have been lucky till now to have debilitating problems all round which have seriously lowered my quality of life, bowels, lung, passing water, skin,... , but I haven't had high levels of permanent pain.
It's my eyes. Permanent burning sensation. All the curtains pulled, sun glasses on to keep the eyes from moisture loss, and then head under a blanket. The eye drops no longer help, I use the eye gel now which makes sight blurry. I called my team and I have an appointment next Tuesday, in 6 days. I hope it doesn't get worse. Warm wet flannel over the eyes didn't help either.
Any ideas? Dr said they can't increase my jakavi, already 10mg 2x a day.
Maybe it'll just clear up itself.
I hope you're all holding on somehow.
Best of luck,
doxycillan comes to mind. Dave , I think you recommended it. . May I'll ask for it, probably need to mention it.
sorry to hear everything is not so good at the moment. However I know what it is like as I am a lot like that too, as I guess most people get with gvhd as it affects all our quality of life.
Eye issues must be a later symptom of gvhd as I like you have recently got eye issues and I notice on forums that eye issues look like they seem to occur later and another patient who I see at Ecp who had his sct roughly the same time as us has recent similar issues. I have dry eyes most of time, with a bit of itchiness most of time, which causes my eyes to become weepy, and getting gritty bits in my eyes. I am trying really to keep my eyes lubricated with drops as I don’t really want to put too strong chemicals in my eyes that may cause further damage or dryness. I am already on steroids , ecp, and immune suppressants for the gvhd so I don’t really want too put too strong steroids in my eyes. Today my eyes have not seemed so bad but not looked at phone much. I have such blurry vision reading my phone these days and weeks ago it was not an issue. Another gvhd surprise. Will see tomorrow if the improvement carries on. One step forward and 3 steps backwards. How was your Ecp?
Ecp is becoming more routine thankfully and the touchy nurse was on holiday so it was very peaceful for a change. I even managed to sleep.
I also feel it's doing me good, but it soon starts to wear off.
I can't remember what days you have your ecp. Would be nice to know.
Thanks for giving me a bit of perspective about the eye issues coming later. A little relief on my negative day. I have even cancelled choir... no point cos I can't read the score and the burning feeling makes it impossible.
My sct was 2021 june, and I came out February 2022. Could you remind me of your sct time. It's helpful.
Thanks for being there Dave,
have a peaceful evening,
My journey started January 1st 2021. I had to call an ambulance to my house as I had started to drag my leg around behind me, my left leg and I had problems with going to the toilet in front and behind. I then half a day later became paralysed in legs and arms. It was found I had a secondary cancer on my spine pushing into my nerves in spine. I was then treated with really high dose steroids where I could not sleep for over a month or so, as I was so high. I then had radiotherapy on spine and chemo on spinal sack, then high dose chemo on bone marrow. I could no longer put weight on legged and had to learn to put weight on legs and to learn to walk again on zimmer frame. I was then released home in March 2021 for one month to try and put some weight on and strengthen my body to return beginning of May 2021 for my sct. I forgot to mention while in hospital first three months of year I got infection and sepsis while my neutrafils were at zero and ended up in intensive care and ended up as well with a pressure sore on my cocksysx ASI mentioned I returned May 2021 for my SCT and then returned home June 2021 where I spent my time recovering from all my ordeals. Everything so slow as my body had been through so much with chemo from year before, secondary cancer, radiology, sepsis, intensive care, pressure sore, sct, rebuilding new immune system, learning to walk again etc. progress was very slow getting my strength back and is still a long way off. I then got gvhd in January 2022 with such stiff legs I have hardly made progress on improving my leg strength. This gives a sort of summary of my journey so far. So 2 years I have not really been able to walk well.
Oh my, Dave, I'm shocked by what you've been through. I'm just writing a quicky now, have a clinic appointment this morning early. Need to get moving.
Thank you so much for sharing. It's probably a bit difficult for you to see it all written down. Makes it more real.
Let's stay in touch.
Sorry for you that you've gone through all that. Lots of very frightening times. Words aren't enough. I'm sending you compassion and kindness. Maybe you can take something from my story. I'm not comparing, just offering it so you know. I'm grateful that I wasn't really very conscious in the very bad times, I wasn't aware.
My journey started in 2019 with breast cancer. I was in remission and had got through it. Then I 'had to have' radiology.
The haematology profs for my leukaemia told me that it was the radiology from the breast cancer that gave me leukaemia. This fact doesn't leave me cos I was told by my very good second opinion at that time that I didn't need radiology at all but when I told the radiologist this he just told me, "no, you're going to get it because we do it to everyone in your situation". So I went ahead with it. And it gave me leukaemia and gvhd.
I was told by an old Prof when diagnosed in early 2021 that leukaemia is no longer a life-threatening disease, that after the sct I'll be back on my feet as normal after 4 months.
There's nothing we can do about it.
Let's appreciate being the heroes we are. Let's stay constructive and compassionate. Let's enjoy the moments we can.
How's the walking and standing?
Do you have a home help? Can you stand enough to make your own food? Who shops for you? Are you driving again now?
I'll get off here,
Sending you positive energy Dave, from my heart.
I'm 18months post sct and have chronic gvhd, currently skin and eyes, I'm relieved to say that my cancer related fatigue (CRF) has gone. I still don't have energy or mobility to do much and walking is painful and stairs tortuous...
But all that said, I just stumbled on this fitness/exercise for geriatrics in you tube:
I did it holding onto a chair without the stretchy band. I quite enjoyed it.
Thought it was worth sharing. He shows you how to do it all sitting down too.
Let me know what you think.
I don't think it's appropriate if you've still got the CRF, the fatigue.
maybe worth seeing if you can get mri to check for Myositis, muscle inflammation.Rspecially if you are making no progress muscle strengthening,, climbing stairs or moving into standing position from sitting.
Thanks Dave. I'll mention it next time when I follow up with the team again on the meds suggestion.
As normal, I am still struggling. Sounds like you are having a hard time to. I had my Ecp today and will do tomorrow as well. Not really too sure how much it is having on me at the moment, I know it appears to be more of a long term treatment for skin and to keep immune system dampened down to also help reduce the use of steroids. Been going almost 2 years now less 2 weeks and my skin hardness has not really changed at all, hopefully is doing more for you. I know our gvhd skin issues are different. You seem to have more blister type wounds that open up and need a lot healing, whereas my skin is very tight above and below the knees. It is strange if I sit my legs feel nearly normal ie not too tight, but of heat, bit of like nueropathy. If I stand from seated straightening my legs is very hard like I am re-stretching my muscles then I become like peg leg walking ie so stiff and I try to crouch but can hardly bend my knees then I tire so easily, this is why it does not just seem it is like gvhd skin I feel maybe I have inflamed muscles as well. When I asked doctor if I could take Rituximab for this is when he said maybe worth a try as seems to have good muskoskeletar issues success in gvhd. I had treatment for this last Wednesday but it takes time to start working. I guess I am a bit impatient. After having my condition for so long and deduced quality of life for so long. Hopefully I will start to see some results soon. If I could mobilise a bit longer and exercise a bit I would be so happy, but it may not work either. I had to take the chance on something like this otherwise I could be sitting here forever waiting for my gvhd to reduce or my immune system to calm down. It was a 6 hour treatment with a drip to deplete certain b cells and bring the immune system down a bit. I am just hoping I notice some difference soon. Unfortunately I have had no experience of treating gvhd skin open wounds so I cannot really offer much advice. I can imagine how difficult it is for you though. I hope that they all start healing better soon. Do you also have tight skin? Trouble bending joints?
I can understand your description of standing up. I have that in my ankles. The skin is thick there and breaks/ rips when I move and stand. My physio said it's like treating burnt skin, it gains elasticity when it breaks .... but of course he forgot the last part of the equation... with burn patients, the skin can regenerate over time, whereas ours can't, which means ripping and breaking skin to what end? It leads nowhere, it's just painful. The muscle joint flexibility.... I feel like my ankles are rusty, or fossilised when I get up after sitting down for a while, very challenging. Unfortunately I'm a bit dizzy now when I get up after a while too. Perhaps the answer is ..never sit down, LOL.
Anyway, the ecp apparently destroys gvhd particles in the blood. I go in for mine Monday Tuesday.
I'm experimenting with my skin care a bit. It was helpful to find out treatment is similar to excema. After the skin is wettened, only with water (I put oil in it though), only dab dry and within 3 minutes moisturiser should be applied to stop drying out.
I can't use only water. I experiment with left and right foot, heavy and light cream/lotion etc. Also my Dr has given me different trial plasters/pads for me to see what suits. Different skin areas need very different treatments, foam pieces cut small and bandaged on, absorbent, drying pads to absorb wound leakage. It's getting pricey cos I have to pay a contribution, so now I'm trying out chopping up sanitary products, pads. They're absorbent too.
So Dave, I'm glad to be in contact again. Paracetamol is helping me. I'm taking about 4 a day. 4x500mg.
My flare up seems to be a bit coming and going, I never know how acute the pain (genital skin, mucous membrane, ankles) is going to be from one day to the next.
Take care. Try googling excema treatment on you tube. At least I got a feeling I could do something.
I'll get off here. Thanks for being there. It helps.
Yes the skin is tight, I have neuropathy too, bad at night. Everything gets worse when tired and or stressed.
Im really struggling, with this skin ghd. I don't know how you've been coping. It's realy incapacitating. I can hardly write this, I'm so distracted with the pain. Any recommendations? I'm in the clinic tomorrow for the ecp again. I'll ask them about that med and the diagnosis.
sorry you are suffering so much. We are both suffering so much from this horrible disease. I keep hoping for us both that we are just around the corner from things improving. However with this gvhd it is difficult to know where the corner is. For me I suffer from my immobility and hardly being able to walk, for you it sounds like your ankles and open wounds. Luckily I don’t suffer much pain as such or not so aware of it so I can’t really recommend any particular pain killer as such. I suffer massively mentally from my symptoms as it has taken so much independence away, and just a little progress would help me so much. Reading lots of posts it does seem many people get thier eventually. Hopefully we are getting to the time after our sct,s that the symptoms should start to get less and the skin hopefully get better. I have now been doing Ecp for a year now and I don’t really notice any positive changes to my skin, however I know it helps to keep flare ups down, keep steroids low and hopefully stop any gvhd spreadGood luck for your Ecp this week and remember it is doing you good in the long run. I have my 2nd Rituximab infusion on Tuesday, but am now not completely convinced it will change much for my skin. I think I have been telling myself anything will help to make me mentally feel better and have something to look forward to. At the end of the day it has a 50/50 chance of improving my mobility a little. The problem is all these medications have thier side effects.Time seems still to be key to recovery and being strong, however I know it is hard as it has been going on so long for us both. Normally our immune systems would sort these issues out for us, but our immune systems are still sorting themselves out. Hopefully they will soon get there. Good luck in your Ecp and hopefully your recovery speed will increase very soon.
Thinking of you