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SueP
Comments
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Thank you, Steve. With Anthony Nolan we hoped to do a story on Lynne donating her baby's cord as I had received a double cord blood transplant. Although she gave birth at Barnet Hospital, which has an NHS cord blood bank, they couldn't collect enough cells for the donation. So the story was given a different slant -…
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Hi Jane, I'm so sorry that you are facing chemo and a possible transplant again, it is what we all dread - it must be devastating for you. I am replying to both this and your 'coping with tiredness' thread. I have been battling non Hodgkin's lymphoma for many years and one of the worst moments was when I relapsed after my…
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Hi All, Have you seen there is a new blog on the Anthony Nolan Patients and Families Facebook Page about fertility issues after transplant. It's Billie speaking to Megan, age 25, who's had two transplants. It also describes her cord blood and Haplo transplants. Best wishes, Sue
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Hi Loobs, I'm virtually back to normal, thank you. It's nearly 4 years since the transplant now, I'm still in remission from non Hodgkin's lymphoma, touch wood, and I'm only at the hospital every six months for a check up. I'm sure I've had less GvHD than a lot of people who have donor transplants. The cords don't need to…
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Hi Kate, I'm one of the community champions on this forum. I'm so sorry to read about the situation you find yourself in. I was 45 when I first started chemo and had completed my family but I can empathise with you to some extent. I know you're asking about anyone else in this position but I'm sure also one of the Anthony…
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Hi Loobs, I'm also a Community Champion. I was in this situation four years ago when a matched donor couldn't be found for me anywhere in Europe or America. I was very upset at the time but it was decided to go for a cord blood transplant instead. As an adult, you need two units of umbilical cord blood donated by new…
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Hi Nichola and All, My skin is definitely more sensitive to the sun since my transplant and my minor GvHD is aggravated. That means I wear long sleeved blouses etc as instructed but I sometimes feel I can't win as my transplant team then told me my vitamin D levels were low as I wasn't getting enough sunlight! I'm now on…
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Hi Gail, I'm also a community champion but haven't checked these boards recently, due to being on holiday, The only extra contribution I can make to this conversation is that I too was an older woman (59) having a so called 'reduced intensity' stem cell transplant - actually a double cord blood transplant as no donor match…
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Hi Jane, I'm afraid I can't comment on the significance of the drop in your blood counts but until someone from Anthony Nolan can get back to you, I just wanted to say that we are all here as your support team, wishing you well. Do feel free to post on here whenever you want. I have learnt that it's impossible to predict…
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Hi, It shouldn't be too much of an issues at this stage. I have had an annual travel insurance policy for Europe and the U.K. with the broker Insurance Choice (insurancechoice.co.uk) since I was approx 2 years post transplant. They specialise in customers with pre-existing medical conditions. I think I initially had to…
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Hi Kate, I can't add much to what the others have said. My problem was lymphoma, not leukaemia. I had an autologous transplant followed five and a half years later by an allogenic one. The autologous one wasn't pleasant but had far fewer risks and side effects than the donor transplant so I think you've probably made the…
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Hi Jane, I also think you and I have to make allowances for our age. It takes some doing to recover from a bone marrow transplant and all the chemo when you're nearly 60 (even if 60 is the new 40!). Dieseldrinker has suggested on another thread that we may need to look at a 'new normal'. I think I may start a new thread…
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Hi Jane, I'm a community champion on this forum and I can associate with you completely. I had several relapses of non Hodgkin's lymphoma until I was given a cord blood transplant in late 2013 when I was 59. As I had an autologous stem cell transplant a few years previously, I thought I knew what was coming - I didn't! It…
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Hi Alma, I have spoken to my husband about this as he was my main care giver. He said: Always be positive. Never let there be a shadow of doubt that the patient will come through this. Make sure you or someone else attends the clinic appointments with your mum, perhaps armed with pen and paper, as there is so much to take…
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Hi Harshman, Gosh, do you live a long way from your transplant hospital? Sue
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Hi Harshman, I do hope a donor can be found for you fairly quickly. I had a reduced intensity (is this mini?) cord blood transplant three years ago as a matched donor couldn't be found for me. I had previously had an autologous stem cell transplant so I've had two long spells in isolation. I didn't find it too bad as my…
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Hi Laura, I totally empathise with your comment that a transplant is far more draining than expected. I had a cord blood transplant over three years ago and both myself and my family were totally unprepared for the effect it would have on me. Like you, I felt my body could cope well with anything - various chemos for non…
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Hi Jojoc, Welcome to the forum. I'm also one of the Community Champions. It's over three years since my transplant and I am nearly back to normal. My emotions have finally come back - like you, I never cried during treatment and felt emotionally 'inert' for a long time afterwards, an example being how little I cried when…
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As a foot note - no pun intended - I am now wearing thermal socks throughout the winter and the numbness has improved a lot. M&S have a range of quite stylish ones. I do hope things are improving a bit for you now, Ann. Best wishes, Sue
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Hi Tracey and Walshy, I can't comment about the platelet situation but I can empathise about the light at the end of the tunnel. For my cord blood transplant I was in hospital for five and a half weeks, couldn't eat, uncontrollable diarrhoea, and lost an awful lot of weight. I really didn't care if I lived or died, which…
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Hi Chiara, No, I didn't know that but I've now looked it up and already learnt something new - how my cord blood units were transported from Eastern Europe to Sheffield! Sue
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Hi Rob, I'm so sorry to hear your news. I had three relapses with the lymphoma before my cord blood transplant so I can empathise to some extent with how you feel. After the initial devastation things always seemed brighter after seeing the medical team - I didn't feel I was on my own and I knew they had a plan. The fact…
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Hi Rob, I've had all sorts of minor skin issues since my transplant but they've all been put down to mild gvhd. I get red spots on the inside of my arms - in the elbow area, and on my thighs. They go away with application of the prescribed steroid cream. Also light rashes on neck and face which no-one except the transplant…
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Hi Ann, A very warm welcome to the forum. I'm so sorry about your legs and feet, there is a definite similarity to my problems. My legs still feel weak - noticeable when going upstairs or standing on one leg - eg going over a stile when out on a (short!) walk. Do use the forum whenever you feel in need of support. With the…
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Hi Mandimoo0, I'm so sorry you're still suffering so badly from gvhd. It sounds rotten. I don't have personal experience of photophoresis but I'm sure lots of others will have. Where could it be done in relation to where you live? There is an ECP unit in Rotherham, my local hospital where I was originally treated for…
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Yes, as Hayley says, I was told that the cord stem cells are still immature so the match doesn't have to be as perfect and gvhd may be less. I was part of a trial but I don't think any results have been published yet. I would say to anyone who hasn't got a donor match - don't worry, there's lots of positives about a cord…
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Hi Ali, Please don't be afraid to ask any question - it doesn't matter if it's been asked before and never worry that it's too minor an issue. It's what this online community is here for. I'm sorry, I don't know the answer to this. The Anthony Nolan staff don't work over the weekend but I know they'll get back to you on…
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What a shame! A good job you asked. But I'm sure at this stage in your husband's treatment you're used to changing or adapting plans at short notice so you'll just have to hit the shops / online and get some really classy artificial Christmas trimmings! With best wishes to both of you, Sue
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Hi Ali, I'm a new community champion. I had a cord blood stem cell transplant in late October 2013. We had a real, cut Christmas tree that year - it never occurred to us that it would be a problem but we weren't warned against flowers either and I was given lots of those when I came out of hospital! If you check with your…