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Meerkat
Comments
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Hello Re lifelong antibiotic treatment - the rationale for this may be very different for your baby’s circumstances, but could I refer you to this link, as this question has come up before on this forum. https://www.anthonynolan.org/patients-and-families/patients-families-forum#/discussion/486/antibiotic-use
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Hello This question has popped up before. And I commented then. I hope the following link works. https://www.anthonynolan.org/patients-and-families/patients-families-forum#/discussion/comment/2226 If not then put InsureWith in the Search ‘box’. I have used them twice. My long awaited trip to New Zealand didn’t happen…
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Hello John I’m sorry you’re in this position. And what a dilemma for you. I had a SCT for AML in 2015, when I was 61. So a little younger than you are now. At that time I refused to discuss success/failure rates with my clinician. I felt that people of my age all come with some ‘health baggage’ so it was impossible to…
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Hello This original question certainly resonates with me. I am now 7.5 years post transplant and whilst otherwise pretty well, I’m sorry to report that I still have some muscle pains and weakness. This was a huge frustration to me in the first few years post SCT. My clinician told me then that as a post-menopausal woman,…
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Hello Beaglegirl. Whilst not wanting to play down your husband’s liver test results could I just add that the high iron overload, must be fairly common post transplant, because of all the blood products transfused. I was fortunate to have a relatively straight forward post transplant period, but I still had significant…
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Hello Pandapop (love the moniker!) I do hope your appointment goes well. Do go with a list of questions is my advice. I was diagnosed with 5Q- MDS in 2007, aged 53 when I had routine bloods taken prior to some surgery. I had had no idea that I was anaemic. 5Q- is also a relatively benign type and I too was on a watch and…
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Hello. Just to add my experience (now 7 years post SCT for AML), the muscles in my arms and legs have remained pretty weak and ache-y since my illness. I am hugely grateful to be where I am, but a keen walker pre-illness, I can’t now do the distances and indeed sometimes I feel as if my legs won’t even hold me upright. My…
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Hello I’m afraid I’m a bit with Steve on this one! I never went anywhere without my trusty plastic bowl for quite a few weeks after discharge. It was regularly in use! And even months later I would suddenly vomit for no apparent reason. It was an incredibly slow and frustrating recovery for me. The food I started with was…
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Hello What a hugely, hugely worrying time for you both. I’m so sorry that the transplant has ‘failed’ after all this time. The only thing I can add is to comment on Steve’s post above, re survival rates. In the run-up to my SCT for AML nearly 7 years ago (!!) I refused to discuss my ‘chances’ of a successful transplant. I…
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Hi I had my SCT in October 2015. I too had some mild skin gVHD following this, treated with steroid cream as required. But no other significant ‘immune-related’ problems. I had my MMR vaccinations in line with the vaccination guidance, in Jan and April 2018, with no ill effects.
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PS. Just seen your question Steve. I haven’t been routinely doing LFT’s, though one arm of the family had COVID a few weeks ago, so was doing them more often then. I’ve also done them if vulnerable people have asked me to. But on Friday I tested because I had symptoms. Best wishes Meerkat
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Hi again. I’m pleased my post has provided some reassurance. Like most people reading this, I have been quite anxious about getting the infection, and whether it would impact significantly on my health. I have had the recommended 4 vaccines. I don’t know whether or not this has been the Omnicron variant. My back story…
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Hello I’ll add my tuppenny worth too. I was discharged from hospital three weeks after my SCT in 2015. After other people’s comments, my go-to comfort blankets were my pillow from home, my music and the radio. My experience was that although I took lots of ‘activities’ in with me, these gradually returned home, as I was…
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Hello I am nearly 6 years post SCT for AML and had some relatively minor skin GVHD in the months following the transplant. Tbh much of my skin was pretty friable in that period and I just thought this ‘different patch’ was more of the same, until the clinicians diagnosed it otherwise. It did improve and resolved with some…
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Hello I would agree with what has already been said, though think different dieticians have different thresholds, depending on their clinical backgrounds. I too lost substantial weight during my acute illness and treatment. I remember the dietician at my transplant centre being relatively quite relaxed when I commented…
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Hi all I am just over 5 years post SCT transplant for AML. I received my (Pfizer) vaccine 16 days ago. I volunteer at my local hospital and I received this because our Trust recognises volunteers as healthcare workers. I had a sore arm for 24 hours, as I always do following the flu vaccine. Since then I’ve been fine.…
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Hi. I haven’t had significant experience of this, but taking the fluconazole systemically, ie as a daily tablet, may be worth asking about. I think two weeks of nystatin, without real improvement indicates a change of medication is warranted. And I suspect this is impacting on your nutrition, which definitely was a…
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Hi all Just as a postscript, Since my first post I have asked my clinician about this issue at my annual check up recently. She told me she was unaware of a clear correlation between SCT and heat intolerance, but agreed that the systemic nature of the Pre and post SCT treatment could certainly be a cause of some of these…
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Hello. I’ll add my experience to this! My 5 year anniversary is also in October. I was given the option to stop taking the penicillin about 18 months ago. From memory, I was told it was prescribed to ‘protect’ the spleen following the SCT, in the same way that people are prescribed life-time penicillin following a…
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Hi all. My SCT was almost 5.5 years ago now. I wrote briefly to my donor at 100 days and again after about 6 months. Both via my CNS. I received a response to my second letter, which was a very emotional read. However AN told me that the policy of my donor’s country was to never release any personal details, so I will…
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Perhaps I could add my two penny worth. I have booked an expensive (for me) long haul holiday for later this year. I have used InsureWith for two European holidays since my SCT For AML over 4 years ago. However they were unable to provide cover this time because of the cost of my holiday. Insure and Go would provide cover…
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Hello Jen. How kind of you to think of those people languishing in hospital beds. I’m not sure how it was funded but when I was in hospital in Leeds I really looked forward to the weekly Reflexology session offered every Tuesday afternoon. It was a real bright interlude during sometimes challenging times. Unlike Rachel I…
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Hi Natalie. I too found the Macmillan website very helpful. This month I am three years post SCT for AML. I eventually decided on Insurewith because the quote was reasonable and I felt the online questions relating to a SCT were very relevant and easy to answer. Such as whether you had GVHD, were receiving lymphocyte…
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Hello John. I am sorry to hear your news. I’m sure you’re still trying to get your head round what’s happening to you. I can really empathise though as my MDS, (which I had had for 8 years) transformed to AML in Spring 2015, when I was just short of my 62nd birthday. I was otherwise in good health. My transplant clinician…
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Hi Rob. I’m afraid I agree with the others who have replied to you. I am currently sat on my settee, coughing away. I am 2.5 years post transplant and since the end of October I have had one infection after another. ‘Frustration’ is an understatement as these have really stopped me getting on with my life, including having…
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Hello Lindsay. Forgive me for putting my two-penny worth in....... I decided almost at diagnosis that I didn’t want get well cards from people. Instead I asked friends and family to send me postcards of trips out, holidays etc. These built up very quickly and I really felt people were thinking of me a lot, which was both…
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Hello Nick and Steve. I was interested to read that you both had visual disturbance symptoms around about the time of your diagnoses. I had never given it a thought prior to reading these posts, but I saw an ophthalmologist because of double vision, about 4 weeks prior to visiting my GP with symptoms that led to my AML…
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Hello. I was coincidentally looking at travel insurance yesterday for a European holiday later this year, when I will be 2 years post transplant. And becoming very demoralised at the quotes offered. However I requested a quote from Insurancewith.com, which was recommended on the Macmillan website. Their medical screening…
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Hello Jojoc and others. I have been following this community forum for several months, though have never contributed before. I am 15 months post transplant following an AML diagnosis in Spring 2015. Compared with some of the experiences I have read about on the forum, my post transplant experiences have been relatively…