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HelenSpeedwell
Comments
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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…