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HelenSpeedwell
Comments
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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.
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Something great to report, my mouth gvhd is maybe subsiding. I woke with natural moisture in my mouth this morning for the first time in months. Only this last Tuesday was told I have the gvhd in eyes, mouth, liver, skin and genital but thankfully the bowel gvhd has subsided. A little ray of sunshine, much appreciated.…
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Hi Audrey, my bowel gvhd was 4th grade and lasted about a year and is thankfully over ( check out lactose intolerance too). I now have mouth, eyes, liver and skin reacting against my sponsors stem cells. But A wonderful bit of news, I woke this morning and could move my mouth, its actually got moisture in it for the first…
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Hello Audrey, keep hanging on. I'm sending compassion and love.
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Best of luck lyndsey. I'm in it too if it helps to know. They're trying to reduce cortisone and so increasing ruxolitinib. The fatigue seems less but mouth, skin, eyes problems seem to not be improving yet. Worried about weight loss.
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Having flue jab and covid together might have been ill advised (we'llnever know). My hubby (fit and healthy) had his flue jab last week. And he Reacted with mild symptoms. He wanted the covid one with it but was refused on grounds of too much for the system. If fit and healthy get it refused, I'm sure it's too much for me.…
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Hi Otterfield, I'm glad to hear our comments helped. A magic wand would be better but it's just accepting it that helps for me too. Haemoglobin values vary for me, thanks for that info, I'llbe aware of it in the future. Yesterday discovered tinned veggie soups.. asparagus, mushroom etc. Best, Helen
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Dieseldrinker Totally support your comments , thank you for sharing, i put broken up weetabix in a bowl with cold milk in the microwe for 30 seconds low heat and stir and then I have a good sort of porridge. Perfect when I need to get out the door quick.
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I had the covid jabs after the sct. I am pleased I did. What's Important afterwards is your "teeter" blood value which shows how much protection you have. They were really impressed with mine which made me happy.
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Thanks dieseldrinker... the flue jab went well. It was half way between a two week break from the ecp and the clinic team said that it was better to have a break between the ecp.
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Hi dieseldrinker, I'm off for my flu jab today. I heard from others there's no reaction. Hope so.
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Hi Michelleanne I for one can tell you I'm with you and from my little experience , we'renot alone. It's awful I agree, but your little bit of positivity helped me too. Thanks. Reading simple, compelling text/fiction/biography helped me cognitively recover, and watching films, but I couldn't do it early on. It a bit of…
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Hi GailW I'm on ecp, early days, but reducing to fortnightly ecp after 5 weeks, and jakavi (ruxolitinib) 2x10mg a day and 5mg prednisolon (cortison). Bowel gvhd seems better, skin getting worse. Skin treatment, alternate days cortisone cream. Mouth gvhd getting worse. They want me to take cortisone losengers but I'm going…
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Crocwells hi, I just got chatting to a fellow patient at a recent check up and he was there for an annual check 30 years after his sct. He obviously had leukaemia in early 20s but could tell me briefly his situation. He Only had mild gvhd all that time ago but can do everything now. I was in disbelief, but he assured me,…
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Jakavi Has a lot of lactose in it so with my gvhd I take lactase with it to support absorption.
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Ruxolitnib is jakavi. Same thing. It has
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Thanks very much Steve. They always have problems with me cos thrombozytes level is so high my blood coagulates really quick and stops the machine, even if they do find a functioning vein. The hospital food is a problem too cos of my gvhd mouth, so I take all my own food, medications and creams. That's why I'm more than…
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Hi Mel, May 21... a special time. I had my sct in the June. Still suffering from chronic gvhd. Wanted to make a laundry suggestion, add a tiny amount of bicarb of soda to the detergent draw. I have the same problem with socks that have changed colour with all the creams. Hope it helps and greetings to hubby , all the best…
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I'm in good hands though with vaccines. The clinic release a fully comprehensive printed paper list of what vaccine when to my local doc.
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Thanks for all this useful info. Just by chance, I take aciclovir too and fear shingles, well I have a strong sense of a plan that I will let my med team know about, I'll try to keep on with aciclovir until the live vaccines are completed, shingles included.
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Hi DaveT "Hopefully we will all improve with time but I see often it can be a long road." In the mean time I'm just trying not to lose weight. I use energy powder for cancer patients, I get it on prescription here in Germany. A little recent discovery is frozen boil in the bag Creamy chicken. Very finely diced chicken and…
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Hi DaveT and dieseldrinker, Thank you both for your posts, so supportive. I've ve just got back from my 5th week's ecp, one night and 2 consecutive days. After spending 8 months in the same place lying in bed after my transplant with acute gvhd, I'm realising why I find it so very challenging being there. To find your…
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GailW thanks for the anaemia statistics. Just started ECP and have had haemoglobin blip which might have been a false reading they thought. I'll keep an eye on it just in case Dr's don't.
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Do you think after my gvhd goes that my stomach will recover? I can only speak for myself, I had acute 4th grade bowel gvhd already a couple of weeks after sct (6.21). My bowel gvhd has recovered, but I'm still on jakavi 10mg 2x /day and 5mg cortisone, and myfortic, but the bowel is no longer the problem at all, it's now…
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I was in the clinic for 8 months, sct july 21. I have chronic gvhd, got over the bowel gvhd ans now skin gvhd. It's a long long recovery process and I've been told I might have to just accept things the way they are.
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Whats bmt?
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Hi Dave T Gvhd bowel, skin, Appetite is abismal but think its multifactorial, skin gvhd which makes my mouth totally dry, not able to chew, the chemo before the transplant probably damaged a lot of cells (16 months ago) which haven't had a chance to recover cos of gvhd. I do the same, force myself ( take mcp too which…
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I was isolated for months in hospital but shared a room with a fellow patient. What helped me was mindful self compassion as a topic I researched and meditations and seminars all online free downloadable, no need to pay anything for it. This is a ted talk kristin neff (an expert) gave, just as an intro to the topic... as a…
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I've had my lungs drained manually with a needle.
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I'm very sorry to hear about your son and the frustration must be overwhelming about jakavi. I take it myself but live in Europe. Just a bit of info, I'm lactose intolerant so take lactase with it. A simple enzyme that helps my body digest the jakavi which has lactose in it. I send you strength and love.