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HelenSpeedwell
Comments
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Hi Dave, Hope you're holding on. I am , just about. Bad week. The cream from the dermatologist has caused serious skin deterioration on my feet. Trust out the window on that one. I'm glad you're there. Love Helen
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Thanks Michelleanne. The therapist was useful. Dave, I read a bit on facebook gvhd skin , people describing what we've got. It was useful. I do now believe we have the same thing... scleroderma? Can't remember what is called. One said ..like a neoprene wet suit one size too small. Mine feels like badly fitted neoprene that…
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Thank you Michelleanne, I slept a lot today which was good and tomorrow I'll see my therapist which will hopefully help. Today, I took my opiate based painkillers so that I could do some housework. It's only the second time but I'm worried about addiction. I think I should be less frightened of it and just accept it. Also…
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Hello all, that's good news about your daughter Audrey. It's such a delicate situation we're all in. Crossing fingers she can keep it up. It's lovely to think of her playing with her boys. They've got their mum back a bit. Unfortunately I was at an appointment today in a clinic not so far away in the black forest. I'd had…
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Hi Tom, yes as Dave said I'm in Germany and on 2x 10mg jakavi daily. Dave like me is suffering particularly with skin gvhd. The doctors here say a combi of jakavi and ecp is the best thing they can offer people like us. Thanks for the info. Keeping fingers crossed for uk decision in the autumn. Best wishes, Helen
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Forgot to tell you Dave, I called novartis yesterday to find out if they have a patient support scheme for jakavi like johnson and Johnson have for some meds.. It was worth a try, but , no, nothing. Thinking of you Helen
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Thanks Dave. Relieved to get the ok on the coffee. Do they give you restrictions before your ecp on what can can't eat? I don't have any but saw in facebook group quite often no fatty foods and drink lots before. Love Helen
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Let's hope after 2 years it can still make an impact. Worth a try.
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How's your daughter Audrey?
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Hi Dave, The new med is called Sandimmun. I'll check the active ingredient. You're doing all you can. Be kind to yourself. Positivity is really important. Do you have a therapist or someone at the clinic you can talk to? Helen
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Hello all, Yes, Michelleanne, I've got a good therapist. I couldn't have got through it without. In the clinic I saw someone too, onlx 3 times in 8 months but extremely helpful. I've been prescribed more immune suppressants, I'm hoping they'll make a difference, a big difference. They'll bring with them their own side…
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Hi Dave, Got back today from the clinic. They weren't satisfied with the situation and have added an immunsuppressant. I'll let you know what it's called. It's for transplant patients against rejection. Makes sense. Hope you're holding on ok. I'm with you. Love Helen
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Hi Dave, I'm just waiting to get into the ecp department. Since I got myself to eat more, ... remember the pot noodles:), the fatigue seems to have very very very slowly got better. I had an app 'untire' that helped too, although we neither of us have cancer, cancer free, but it's for cancer related fatigue. But I think…
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Hi Dave Maybe I could bring the cuppa over to you if that'd be easier. I'm relieved to hear she took you seriously and is doing something about it. That's good to hear. Love Helen
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I had a good day yesterday. Hoping today is too. Love and thanks to you all. Helen
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Hi Dave I wonder what your consultant said apart from be patient. I'm with you very often. Sending kind energy and getting the kettle on. Love Helen
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Happy birthday yesterday Michelleanne! Not doing so well at the moment. Took painkillers so I slept better last night. It is as it is. I just keep going. Love to you all, Helen
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Hi Dave, Just a quicky, I'm having a bad phase too. Good to know you understand. I'm sending you kindness. Love Helen
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Hi Dave, At last I've got the ointment that the dermatologist prescribed for the "hard sclerodermiform sheets of skin " Instructions.. translated, "only for use on targetted, localised, not open, skin. Not big skin surface. " It's called ... Dimethylium sulfoxidatum diclofenac Natrium carbomer 50,000. Unguentum basale dac.…
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Hi Dave, I won't get rituximab. I trust my team with that. The dermatologist doesn't belong to my sct team thank goodness. I just can't get an appointment with another dermatologist practice so she comes to me when it's aaabsolutely necessary. I won't bother again. She's based in the university dermatology department. I've…
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Hi Beaglegirl It is such a tortuous journey we're all on. You are being very strong, and feeling that "I am not strong" belongs to it. You are! I'm glad Dave has been able to give you some input about values. Try to work out how you can help yourself, in any way, shape or form, get through the 4 weeks. It's a mammoth task,…
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Hi Dave, Just a quick update, I've got to eat something. So far today I'm very sceptical about everything the dermatologist said yesterday. She, and a nurse, bandaged my feet ankles and last night I had lots of fluff stuck in the open wet wounds and caught pulling and tearing, pulling the flakey skin off. I doubt her…
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Hi Dave, I met my dermatologist this morning before my ecp. I asked her a few questions and she's been quite helpful... we'll have to see what really works. Her aim is to soften up the thick , hard layers of skin (maybe a bit like yours) I don't have the prescription yet, but I'll let you know. I can shower but should just…
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Brilliant news Beaglegirl. I'm relieved for you. I take myfortic 2x day. You can Google it, it might be the active ingredient you mentioned. My team stopped it abruptly end of January and i was in acute pain with a significant flare up within 4 ....5 weeks of not taking it. Check it out for him if that's what he's taking.…
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I agree with Michelleanne, it'd be good if you could find someone to talk to. Ask the nurses, they must have some sort of service. I can't imagine what you're going through. It's ok to cry, in front of him too. It's a good idea to try and think how he's feeling though, to help you keep calm. Be kind to yourself Beaglegirl.…
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Hello Beaglegirl, That sounds very very scary. It's great that you asked for help, well done! I can't help you, and there's no magic Wand anywhere, which is exactly what I'd like to send you. You are waiting for results, from his biopsy, that's hard too. He might well make it through. Maybe not. I want you both to enjoy…
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I look forward to these chats too. It does me good to know you're in a good place Michelleanne. Thanks for sharing that. Love to you all Helen
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Hi Dave. That sounds horrible. It's bad that you can't be standing up for long. My physio said our skin is like burnt skin and needs to be bent, although causing ripping and pain, to get some elasticity back in it. But I'll admit I'm sceptical, because burn sufferers have intact immune systems and their skin can build…
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I know what you mean about nurse doctor difference Michelleanne. Thank goodness there's plenty of "goodens." Reassuring to hear that from him. See, you're doing well! Very good tactic to go to that place of kindness and calm. I reckon their colleagues also see it in them. We all know it from all walks of life. I think I've…
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Hi Dave, I'm getting the feeling I'm recovering a bit after my flare up. Didn't take painkillers yesterday, a first, and could hold a conversation without them, quite special. I'm cautious, don't want to celebrate too soon. Let me know if those new meds are working in any way. And I'd be interested to understand what's…