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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi there, and welcome to the forum. I echo what Chiara and Greg have already said and am sorry to hear about your husbands diagnosis. I remember being devastated when I was told and it took some time to get over the shock. I was admitted to hospital within a few days of being diagnosed and I can honestly say I feared the…
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Bit of an update on this. I had a chat with my consultant when I had my checkup a couple of weeks back. She checked my results from my late effects test about 18 months ago and at that time my testosterone was borderline. I'm typing this post as I sit in the day unit half way through another late effects test which will…
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Hi Emma, the ECP took a long time to get on top of the GvHD but I seem to remember my hair getting thicker long before the treatment finished, so hopefully that will be the case with you too. My nails were terrible due to the GvHD and were cracked and ridged and generally very messy. I'd liken the effect to delamination…
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Hi Emma, I had hair loss through GvHD despite my hair recovering initially after my transplant. When my hair first came back it was also thicker and darker initially. When it started to thin again with the GvHD it also went a lot finer and lighter. I'm pleased to say that once the GvHD had been conquered it returned to…
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I fully agree with what Greg has said. None of us know what is going to happen or what the outcome will be and the fear of the unknown is something we can all associate with.But as Greg says there are plenty of stories on here of successful transplants, some of whom are several years post transplant, so the procedure is…
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Hi Greg, I know it will be hard to feel positive but the fact that one patient didn't respond in the past doesn't mean that you will be the same. I guess your consultant has to make you aware that it might not work but as Hayley has said it is a straightforward process and not unusual, so there are probably more successes…
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Welcome Mark, Good to hear that recovery is going well and relatively smoothly. You sound like you're about 3 years behind me, having been diagnosed August 2012 and my transplant January 2013 which was also for ALL. Keep an eye on the forum as I'm sure your experience will come in useful to others and you will certainly…
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Sorry to hear you've had a tough time but hopefully it's all behind you now Joy. Onwards and upwards. It does take time but be patient and keep pushing yourself a little. Try and keep mobile and keep eating what you can if your appetite is poor. It's important to keep your strength up and I think it helps you recover…
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Hi Bjorn, Welcome to the forum. I think we have a few members who have had stem cell transplants a few years ago, so hopefully someone will respond. But thanks for posting as it is so encouraging to us transplant youngsters (mine was 3.5 years ago) to hear that there is such potential for long term survival. If I can get…
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Hi Greg, I've read a couple of posts about stem cell 'top-ups' and from what I've read it is quite common and not a particularly arduous procedure as it doesn't require the preparation beforehand that a full transplant needs. In effect it's giving your new cells a little boost and is probably no different to having a…
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Hi Dee, There's not much I can add to the great advice that others have given above but I guess I would echo some of them in particular. Like Hayley and Rob, nutrition and exercise to me are one of the biggest things that will help your recovery. I was lazy and didn't motivate myself to exercise and I struggled to eat so…
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Tom, that's brilliant news. It's a good feeling isn't it. Hopefully you can now put all this behind you and get back to your previous fitness. Next Tuesday will be my fourth anniversary since I found out I had Leukaemia and the process began to get rid. It seems to have flown by and my life has never felt better. I've…
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Hi Greg, Sorry to hear this and I hope it's just a monor blip and that things start to pick up again. The advice Hayley has given is really good and will help you ask the right questions to your medical team. Please let us know how you're getting on and what feedback you get from the medical team. Wishing all the best,…
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Hi Leah, This was something I suffered from too though it came about 3 weeks after my transplant, just after I'd gone home on the Friday for the first time after my transplant which meant I was readmitted the following Monday. My gums were sore and my tongue looked like it had white fur as well as being split and sore. I…
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Hi Leah, What the medical team are proposing sounds sensible and all being well the PICC line will be sufficient going forward. I found by the time I had my transplant that my veins had almost disappeared and getting a cannula in proved difficult. Hopefully he won't need too many. I guess today is day 0 and your fiancee…
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Hi Leah, For all that I understand your fiancé is nervous about another Hickman line, I wouldn't have thought a PICC line is enough on its own for a transplant. The main reason I think that is because a Hickman line has two baluns as opposed to a PICC line which only has one. This means a Hickman line is more flexible and…
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Hi again Warrior and thanks for the update. That really is fantastic news and must be such a relief to you. Lets hope any further treatment is unnecessary and you can continue your recovery unhindered and return to normal life. Keep watching those counts rise now and fingers crossed you can put this behind you. All the…
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Hi Crissy, It's not surprising that you're worried when your sons Lymphoma has previously come back three times, but hopefully your Consultant is right that it is nothing to worry about and it is something that will go. If he has had colds and possibly hayfever it may be linked to those as you say. Its not something I have…
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Hi Patrick, I'm sorry to hear about your wifes Leukaemia still showing after the transplant. I can imagine how disheartening that must feel but hopefully her medical team will find the right solution to get rid of it. I also had ALL (but can't remember if it was Ph+) and I guess I was lucky that the first month of…
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Thanks Anneliese, The treatments mentioned in the booklet are the ones I suspected would be considered and were the type of thing I was planning on discussing with my consultant. I guess they're the traditional ones associated with this kind of problem for men but I've read mixed reports about their suitability for post…
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Thanks for the feedback, it sounds like I'm not alone and that it is a normal side effect. It's also encouraging to hear that it is something that can be treated. In my case I would say it's not a lack of interest more a lack of ability which sounds similar to Greg. It's not an easy subject to discuss, particularly with…
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Hi Leah, Your fiance's situation sounds very similar to mine. I also had ALL but I can't remember whether it was Philadelphia positive (I don't think it was). I went through the UKALL14 trial and also had 3 months of progressively more intensive chemo followed by a stem cell transplant. The first month of chemo was plain…
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Hi Martin, I wondered whether you'd had any of your lumbar punctures yet and how you'd found them? Steve
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Hi Elmambo, I share Hayleys concern that you don't have a specialist Haematology nurse looking after you, given the nature of your illness. When I was first diagnosed with Leukaemia in 2012 I told my doctors that I was in BUPA and that if necessary I could go private. Their advice to me was that the care I needed was best…
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Hi Donna, I'm pleased to hear that the consultant is happy with things at the moment so hopefully he won't suffer many problems with GvHD. Fingers crossed he stays well and can continue his recovery unhindered. All the best, Steve
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Hi Becky, Thanks for the update. Lets hope the treatment and transfusions you've had get on top of the problem and things are more stable when the effects wear off. All the best and please let us know how you get on. Steve
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Hi Ajax, I think you make a good point there as financial security is probably one of the biggest worries whilst you're going through treatment and I'm not convinced there is enough support in this area. You should be able to concentrate on getting through and recovering without having to worry whether your bills, rent and…
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Hi Joy, I think that's great advice from Clare about staying positive and I'm convinced part of the success of a transplant is psychological. I tried to stay positive and determined to get better no matter how hard things got and I'm sure that helped me get through it all. You're going through a big undertaking and it's…
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Hi Kev and welcome top the forum. You're right about this being a useful forum and I'm sure it is invaluable to those of you going through transplants. I wish it had been around when I had mine over 3 years ago. Every haematology unit and transplant unit should have the details to pass on to patients!! You sound like you…
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Hi Warrior. I'm sorry to hear of your problems and it sounds like you have had a really difficult time since starting with all this. I know there are several others here who have been through a second transplant (and third in some cases) so hopefully some of them can comment as Ajaxbay has above. I can't imagine facing the…