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Hi Adelaide, Having a bone marrow transplant or a stem cell transplant is a very rough time for patient and also family. Unfortunately mucousitus is one of the most awful parts having gone through it myself, it is part of the chemotherapy pre conditioning to kill all the fast mutating cells in your body that could be…
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Have been reading about UVA1 treatment which is available in some dermatology departments in some hospitals which is used to break up the fibrosis in some peoples sclerotic skin. Will seek to find out more when see my consultant on Wednesday. Does anyone know anything about uva1 treatment or ever used it.?
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I have been using a revitive medic which is a frisbee sized device I purchased rhrough Amazon. It is not cheap but it is like a tens machine. You sit on a chair put both bare feet on it and put your feet on it. It sends electrical impulses into your calves which causes them to pulsate and exercise lower leg and this makes…
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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.
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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…
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Hi Audrey, I too felt the biopsy’s painful and seemed to become more painful but I also guess this was because I was so bruised from previous ones. Even without this it is a painful experience and you get very apprehensive / anxious before the event. Hopefully your daughter will get 100% donor from her results and will for…
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Hi Michelleann, just to let you are not alone with your appetite. I am the same since my stem cell transplant I have no appetite. I eat because I have to live. I started with this immediately after the mucousitus and first had nausea I was then fed with feeding tube which kept moving in my throat which made me sick. I went…
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Hi Helen, good to hear from you. I understand how you feel. GVHD takes over our lives and for me I cannot move on until I get my mobility back, I seem to be on constant hold hoping and waiting for the scleroderma to let up a bit on my legs. I sometimes feel like that there is a slight improvement then a few days later I…
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With regard to gvhd burnout as they call it, I have heard it can sometimes take many years, with typical burn out generally about 2-3 years I have heard but it can take longer and some people can have a few symptoms years later. It can take many cycles before your new immune system accepts your cells as being good cells in…
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Hi Beaglegirl. I suffer from GVHD and my liver function elevated to over 390alt. Luckily I believe Ecp brought it down to around 70 alt. Is your husband taking extra corporal photopherisis as it is one of the least toxic treatments for gvhd. It can be very time consuming as you first need to travel to a blood centre that…
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Hi Steve / dieselsdinker, can I ask, when you had Ecp did you have scleradoma ie tight skin, and if so how bad? Or was most of your gvhd skin issues in dermis ie skin pigmentation issues and subdermis ie skin sensory issues and sweating issues? After what sort of time period of Ecp did you start to see improvements? I do…
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Hi Helen, Hope you are fine. No real changes in me since our last communication. I guess you had Ecp yesterday and today and are probably quite tired from it as I also seem to be after treatment. My sclerosis of my legs with tight skin does not seem to have changed or reduced yet as I still find mobility so hard due to the…
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Hi Audrey, Micheleane, Helen and all. Good to hear most of you are well. Sorry for my quietness as have not really felt up to much. Unfortunately the gvhd has got me down a bit. Unfortunately it seems to be an ongoing struggle with not much upward progression for a long time. From discussions with others it can often take…
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H Audrey, I am so glad your daughter is making progress. I understand it may be slow but it is progress. A long way from where she was in hospital originally and you also now sound a bit more upbeat. I am a bit like Helen at the moment ie very up and down. This is a result of the gvhd not so much from the chemotherapy or…
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Hi Helen. Hope the Ecp went ahead for you yesterday and today. I know when you are doing something like Ecp for gvhd it helps give more positivity as you feel like you are doing something to help resolve it. I have kept a bit away from forums this week as too much over reading into peoples issues with gvhd also gets me…
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I hope Ecp helps with ocular chronic gvhd as my eyes have recently become a bit dry and gritty. I am now using eye drops which does ease the eyes for now. Luckily it is not unbearable.
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Hi Helen. sorry I did not respond sooner but after my 2 days Ecp treatment I felt absolutely worn out and spent yesterday afternoon sleeping. I spoke to another patient who was also having Ecp and they also said they also felt very tired after Ecp and also they are on high steroids so they also said they are not sleeping…
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Many thanks for being there too. For both of us and other sufferers of gvhd it is very isolating to protect ourselves from further gvhd flare ups. I am still suffering from my initial flare up, luckily the gi and mouth gvhd has died down but I am still left with my immobility at the moment. As you I am also suffering from…
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Forgot to say if your husbands liver enzymes are high it could very well be gvhd as mine went over 200 when they should bi believe be around 50. Mine came down eventually by taking steroids to reduce overactive immune system and also Ecp also helped to bring the enzymes down.
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Hi. Whether it be gall stones or gvhd the issue should not be that serious. Following my sct / Bmt I also had a pain in stomach or just above it very slightly to r/hand side of central and I was scanned and told I had gall stone issues that I had a few that had collected in the tube and were not leaving. So they gave me a…
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Your gvhd will eventually go down, it is just a long slow road as we already know and patience. I have had a bit of a down week wondering when I may improve a little, but know I just have to accept the way I am for now. It is difficult. But we must strive on.
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Hi Helen, Luckily have not skipped Ecp as of yet. I have read user comments that some users have had gvhd get a bit stronger when they try to come off Ecp as the immune system is not being suppressed enough. Also if you are registering positive for gvhd you may have actually had a weak covid. I have also read that for some…
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At the end of the day I guess the national health service in uk is not free as everyone here pays a national insurance contribution from thier income but it also has to go a long way. with regard to my nueropathy, I know it will probably take a long time to go. What I have in my feet a sort of numbness I believe is…
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Hi Helen, I do walk upstairs about three or so times a day and four or five times a day into my kitchen from the lounge. It is so hard though as most of the time my legs are so stiff from the gvhd, and doing other exercises is normally not an option as I am so fatigued. In February this year it was totally different I…
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Hi Audrey, your daughter sounds as she is doing very well with you by her side. Think a few weeks how she was in hospital and now she has a lot more life. When I went through my sct or Bmt I left the hospital still losing weight, I could not even keep the feeding tube in me and wanted to unfortunately be sick due to the…
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I understand about the Ecp treatment I am still recovering today after my treatment earlier this week. I spent most of the day sleeping. However I think it is the journey each day of treatment over an hour and a half in each direction and then day after hour and a half to and from my consultant appointment. Hopefully will…
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Hi Helen, it is good to hear you are no longer on steroids as I know how harmful they can be in high or long time doses, I wish I could be off them. Our meds in uk seem a bit more limited than in US or Germany, Jakavi is not available as a primary drug for gvhd as it is used as a primary drug for for a particular cancer…
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Had Bmt consultant appointment today. Had some goo dish news I guess, my consultant believes I may not have any active gvhd at the moment and possibly the residual effects of my last flare. So he wants to keep me on my current low steroids just to make sure there are no current flare ups and to continue on Ecp and…
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Hi Helen, My sct was May 21 so a month before you. At least my Ecp has been completed this week. Just got home and shattered. Feel like I have been a pin cushion again. My legs now seem tighter. Just hope it wears off soon as the Ecp is supposed to get rid of the tight skin not make it worse, that is why I am having it in…