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HelenSpeedwell
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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.
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I am taking ruxolitnib 2x 5mg daily, recently reduced from 2x 10mg daily. My transplant was june 2021 and I've had bowel gvhd grade 4 and it's now subsided, which I'm very very happy about, even proud that I saw it through... but now it's gone to skin, all skin, eyes, mouth, ankles, arms. Reading these/your posts gives me…
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Hi Gail, I live in Germany. I'd never heard of ECP until I found Anthony Nolan. They use Ruxolitinib and immune suppressants here as standard but they are running research to find better alternatives, at the moment it's "best alternative option" here, not the silver bullet. I myself started off grade 4 bowel GvHD with…
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Hi Jennie, Sorry to hear you're in such a terribly difficult place. I'm just thinking about what helped me emotionally during my almost record breaking stay in the clinic with so many complications. I practice mindful self compassion. Here's a link to an explanatory ted talk on it. I can imagine the only way out is…
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Thank you very much Steve, the team and all those SCT peers that are sharing here. You can't imagine how helpful this experience has already been after only a couple of days. Someone wrote that they had to climb the stairs on all fours when they got back after their clinic stay. That was such a relief to know I'm not…
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Great, no ill effects. I hope he's ok still. Thanks for sharing. You give me hope. I'm only at the beginning of my sheet of vaccinations, a year after my transplant with complications: GvHD bowels and mucous membranes, dry mouth, very low blood pressure, diarrhoea etc. Now lots of dry skin. Every jab is a challenge. So…