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SueP
Comments
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Dear Christine, I am so very sorry that Bob has passed away. I know how hard he fought and realise what a great support you were to him. Thank you for letting us know. It was very brave of you. I am thinking of you all. Best wishes, Sue
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Hi, This is an interesting question. I thought about posting something similar after seeing the tv programme 'This Time Next Year' a few months ago when a young woman did meet her donor. This option is not available to me as I had a double cord blood transpant with units coming from Kazakstan and Slovakia. I'm sure if I…
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Hi Danni, I'm one of the community champions on this forum. I totally agree with what you say about what a gruelling process it is for everyone. I had an allogenic SCT in 2013. I had previously had an autologous stem cell transplant in 2008 (my own stem cells were harvested and given back to me after intensive chemo). I…
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Hi, I'm one of the community champions on this forum. I had my transplant five years ago. I didn't have many complications but the lower gut problems lasted longer than the others. The symptoms were the same as yours. They obviously weren't as bad as I didn't need specific medication but I certainly wasn't happy being too…
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Hi Danni, I have had GCSF injections twice for stem cell harvests in the course of my treatments. Like Tony, this was when I wasn't in the best of health but all I can remember is a slight ache and a feeling of pressure in the long bones. I received a double cord blood transplant for non Hodgkin's lymphoma five years ago…
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I'm going as I live near Sheffiled. Is anyone else?
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Hi Christine, I'm one of the community champions on this forum. I can't offer much advice as I didn't even have the same disease as Bob. However I just wanted to say you have the support and good will of everyone on this forum in your quest for a second transplant. Surely the one year remission mark for a second transplant…
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Hi Don, I'm one of the community champions on this site. I had this sort of transplant (autologous) about 10 years ago but for a totally different disease - non Hodgkin's lymphoma. It is different to most of the discussions on this forum which relate to allogenic transplants - these use stem cells from a donor. As you will…
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Hi Krista, Thanks for updating us. He's done really well to be discharged so soon - good news! I'd forgotten about going home for the day -.it does help a lot as you both get an insight into how you'll cope. It's great you've got your Mum for support. Please continue to keep us in touch. Best wishes, Sue
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Hi Krista, I'm one of the community champions on this forum, I had a double cord blood transplant in October 2013. I can't comment on the low stem cell issue but I have discussed the carer's role with my husband. He had recently retired so he was able to care for me full time after my transplant. His comment is that you…
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Hi Gail, It must be an enormous relief to get a diagnosis and a way forward. I agree it must be disappointing to have to go on the drugs cocktail again but as you say, hopefully worth it in the long run. Do you need to continue with the blood transfusions? Please continue to keep us up to date. Thinking of you. Sue
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Hi Gail, Do let us know how appointment with consultant goes. Blood transfusions always mean long, boring days and this is obviously even worse in your case. I remember the combination of being hooked up to a drip and diarrhoea - absolute nightmare! With very best wishes, Sue
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Hi Gail, I'm one of the community champions on here. It's four and a half years since my transplant so I'm struggling to remember some of the details. However, I do know that when I went for a routine blood test about nine months post transplant, my neutrophils had dropped to nearly zero for no reason whatsoever. I then…
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Hi John, I needed a bone marrow transplant five years ago after several relapses for non Hodgkin's lymphoma. The statistics given to me were 30%, 30%, 30% but the alternative given to me was approx 2 years survival with palliative care so I felt there was no choice. I was 58 but, like you, in good health apart from the…
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Hi David, I am one of the community champions on this forum. I had a cord blood transplant in 2013 after several relapses of my non Hodgkin's lymphoma. I am so very sorry about your Dad. It is always a brave decision to consent to a bone marrow transplant - the statistics re success v failure are frightening - but at least…
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Hi Katty, I am so delighted by your news. Both the neutrophils and the fry ups are excellent progress. As Dieseldrinker says, it may take time to achieve decent counts so be patient. I’m glad the forum helped you in a small way. Thank you so much for letting us know and please continue to keep us in touch. With very best…
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Hi Katty, It's four years since my transplant so it's difficult to remember exact dates but we think it took at least two weeks before engraftment occurred. Even then, the neutrophil count only rose very slowly and I had to be reassured that all was well. I also suspect the infection could have delayed everything.…
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Hi Melissa, I had my transplant at 59 so I didn't return to work. But my contribution to this discussion goes back years. I was initially diagnosed with non Hodgkin's lymphoma when I was 45 with a husband in a demanding job and two teenage girls. I was off work for 12 months receiving chemotherapy and when it was time to…
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Hi Nick, Welcome to the forum. I am one of the community champions on here. Thank you for posting. The more members we have, the better we can support each other. Your post is an excellent example of this as it has already initiated a discussion about eye problems with leukaemia. My background is a bit different as I had a…
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Hi Billie, This is great and should be really usefuI to many patients. Also, I haven't suffered much from GvHD myself so it will help me understand it more when it is mentioned on the forum. Best wishes, Sue
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Hi Alison, So sorry your husband had to be readmitted but it does sound as if they’re getting on top of the infection. I too had my transplant in Sheffield but that was four years ago. My line was held in with stitches so the procedure must have changed. In the end, the entry point of my line started mattering so it was…
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Well said, Steve. Christmas can be a difficult time. I was first diagnosed with non Hodgkin's lymphoma in December 1999. As well as Christmas emotions I also had to face the millenium celebrations - at that stage, I never dared hope I'd be around 18 years later, contributing to this forum. I then had three relapses - two…
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Hi Pam, I am so sorry about this - it is a very sad situation for all the family. I hope your husband will realise that his Mum would have said that his recovery was far more important than seeing her at the end. I hope he can be supported in the days to come so he doesn't feel guilty about not being able to help with alll…
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Hi Gill, I was unaware of cataracts as a side effect of STC until, coincidentally, just two weeks ago. I have got the start of cataracts and my consultant at the Long Term Effects Clinic said this could be linked to the Total Body Irradiation (TBI) before my transplant. She said to make the optician and dentist aware that…
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Hi Pam, Like your husband, I have had vast amounts of chemo and both types of transplants for relapsed non Hodgkin's lymphoma. An autologous one in 2008 and an allogenic one in 2013 when I was 59. I've got to admit that the allogenic one was far more difficult to recover from. I was in hospital for five and a half weeks…
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Hi Jackie, I am almost back to normal after my transplant, a bit weaker but no flu symptoms. I haven’t worked since then (now 63) but am enjoying an active retirement. My organs seem to be ok - I have cardiac scans and lung function tests periodically. I’ve been told to make the optician and dentist aware of the total body…
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Hi Jackie, I’m a community champion on this forum and I feel your post was virtually aimed at me. I am so sorry to read about your husband’s recent relapse. Apart from the Germany / Switzerland bit, his medical history is very like my own. I was diagnosed with high grade non Hodgkin’s lymphoma in December 1999, age 45. I…
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Hi Noodle, I think you make a good point that a transplant is a lonely business both for the patient and relatives due to being in isolation. The staff always found time to chat to me but it was different to earlier in my treatment when I could swop stories with other patients. Two of us even got told off for talking one…
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Hi Jane, That's brilliant news. Thank you for letting us know. Good luck with the next round. Best wishes, Sue
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Hi Jane, From my personal anecdotal experience I know that chemo can make all the elements of the blood count dip as it is affecting the bone marrow. My team never seemed too concerned about the week's delay. In my case, it wasn't the disease as my lymphoma didn't make the counts fall. I'm so glad you're feeling well at…