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Rachelj01
Comments
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It's good to hear he wasn't admitted. Keeping his spirits up is essential. Whilst he is at home are there things he can indulge in which he enjoys? Cards, films, treat food etc. I know I felt as if home was prison at times, so when he is penned it it's at least 'tolerable'. Best Wishes Rachel
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Hi Lindsay Steve's advice to discuss with your medical team is wise and probably the best plan of action. The positive is that Scotland is still in the UK so it's not as if, should you need to return home, you'll have to last minute sort flights and the local medical assistance should be of a standard acceptable. I would…
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Meldidd What you have described sounds very typical post transplant. I was well the first few weeks and then I couldn't keep food down and suffered serious bouts of fatigue. What is most important is that your friend keeps his medical team informed of how he feels, any changes in his body especially the diarrhoea. Whilst…
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Hello Lindsaylou As Greg says on average it's a minimum of four weeks as there are number of medical s / tests, organising harvesting, injections for the donor etc. Best Wishes Rachel
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Boxwell Hi, I'm very sorry to read about your wives diagnosis however the positive news is she's in remission and I believe you have reason to feel positive about a 9/10 match. I was fortunate to have a 10/10 however during my treatment I became friendly with a lady (white European) who they couldn't find a match and…
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Lindsaylou Please don't hesitate to use the forum and ask any questions, we are here to help and hopefully make this difficult time a little less difficult or at the very least not such a lonely one. Rachel X
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Hello I'm very sorry to hear about the MDS diagnosis, I was diagnosed with AML and to this very day I can remember the diagnosis which filled me with questions, panic, fears of procedures and then having to deal with everyone who was worried about me. Like Greg and Becky, I was a patient so it's hard for me to give a…
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Katty, That is wonderful news, keeping everything crossed for more fry ups and count increases. Rachel
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Katty I'm sorry to hear about how anxious a time your son is enduring post transplant. I had to undergo two transplants, the first graft did not take however it was later than 17+ days this occurred. 17+ days is still very early, there is no evidence to suggest the graft hasn't taken and which also means there is every…
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thanks Becky
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Greg Thanks. I started treatment yesterday and will have to return over the next 3 weeks once a week for treatment. Thankfully I didn't have a reaction to the drug so hopefully the following sessions are short and 'sweet'. I guess one of my concerns is if a reactivation can occur and EBV apparently has some very serious…
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Hello I'm two years post SCT for AML and what you are describing sounds very similar to what I experienced post transplant. I had a dog, she was a blessing as her need for a daily walk forced me to get out the house. I honestly didn't feel like going out but the fresh air and light exercise really did help lift my spirits…
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Hi Melissa Congrats on returning to work! Like many of the previous respondees. I had a phased return to work which helped both physically and mentally. One thing I did when I returned and recently when I joined a new company is share with my colleagues my experience. When people know what you have been through they do…
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Cath It's definitely worth looking into alternate options, another thing to consider is that the consultant wouldn't advice a SCT (in my opinion) unless they were hopeful for a positive outcome. Rachel
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Dear Cath In 2015 I was diagnosed with Acute Myeloid Leukaemia. I under went chemo to kill off the leukaemia after which it was recommended that I under go a SCT in the hope of preventing a relapse. You have to read the literature about SCT and it is rather horrifying, that said the literature generally paints the worst…
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Hi George Welcome to the forum. Sorry to hear about your diagnosis. I was diagnosed with Acute Myeloid Leukaemia and had to undergo chemotherapy and a stem cell transplant therefore I completely understand how overwhelming this kind of diagnosis is and the daunting prospect of chemo and a transplant. As far as the…
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Hello My name is Rachel, I'm 2 years post my second SCT and I was 39 when I had both my transplants. You hit the nail on the head when you said everyone is individual in their response to the treatment. My recovery differs from Nicholas. With both transplants, I was home and looking after myself 100% 1 month post…
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Hi Kitty Ciclosporin is a fantastic drug, that said it is also pure evil. I've been on it for 3 years now and I know how closely they keep an eye on kidney functions as it's notorious for playing havoc with them. Excellent news that they have stopped the steroids as these are also not great for the general body well being…
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Hi I not known personally of any patients who have been fortunate enough post a SCT to become pregnant. That said I have read about cases and the doctors have informed me that whilst, like yourself I'm in the early menopause and on HRT having periods, that without running tests they advise me there is still the slight…
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Alison I am terribly sorry to hear your news. I know in times such as these very few words can offer comfort. I will be thinking of you and your family at this. We are here on the forum to offer support should you need. Rachel
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Hi After my first transplant I was potentially exposed to Chicken Pox and my medical team took it very seriously when I informed them. My advise to you would be to inform your medical team asap and then if they feel it's not an issue your mind is a rest and if it could be an issue you may well have to go and have the…
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Hello Alison Gosh that sounds traumatic, it's good to hear you finally have some answers. My Hickman was stitched into place so I am unable to comment on a clip. I'm pleased to read that he is on the mend. Best Wishes Rachel
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Christine I’m sorry to hear about the awful time your son and family has been going through. I didn’t relapse, for other reasons I required a second transplant which I underwent two years ago. I do know a patient who I was treated with at the same time and he did relapse, I’m pleased to say he underwent a second transplant…
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Hi Alison Sorry to hear about the platelet drop. As Hayley stated it is normal for the numbers to go up and down. The most important thing is that the consistent trend is a good one along with his chimerism results. I am two years post transplant and I can feel my immune system is more 'fragile' as it's young. I get more…
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Hello Pam It’s good to hear your husband is feeling mentally strong particularly after what must have been a very difficult two and a half years. It’s a terrible time of year for bugs so I advise you to ‘vet’ house guests, warn anyone feeling remotely unwell to put off their visit until they feel better. As Steve…
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Hello Philip Welcome to the forum. Please do not hesitate to post and ask all manner of questions as you progress through the transplant and post. I had AML and underwent a transplant in February 2016, whilst I don't know about MDS specifically I have found most patients experience similar emotions, worries etc. Good luck…
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Rusty Congratulations Day 76! I absolutely agree with Steve, it's essential that you inform the doctors with every niggle, mark / rash, sensation your husband feels as GvHD can be very aggressive but the good news is it can often be managed. I have experienced skin, oral and eye GvHD, whilst all have been frustrating, once…
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Sue Very encouraging to hear, I know every time I have a set of bloods I fear the result, it's always good to hear about the success stories. Human nature we tend of focus on the negative stories. Thanks
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Hi Hayley has the medical element covered. I can only add that from my experience the doctors would not / will not procedure if they have any concerns with regards the well being of the patient &/or how the success of the transplant could be effected. I have always found the medical teams very helpful and understanding of…
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Hi Sorry to be a bit late to join this post. Everything you have mentioned is perfectly normal, I recall being at my lowest and it was horrific however looking back I regained my well being quickly, in weeks you'll look back and be amazed at how far you have come. I do sympathise for you having to watch your husband endure…