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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'm not sure we've had anyone so far that I've heard of having a 'tandem' transplant, though we do have people who've had multiple transplants and stem cell top-ups after their initial transplant. There may be others who've had Refractory HL though so hopefully someone may be able to give…
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I'm doing well thanks Greg and it's now like it was all a bad dream and my life is back to more or less normal.. I had a prolonged recovery due to my GvHD which was eventually conquered by Photophoresis, but it was a lengthy process and meant I was on Ciclosporin for longer than might be normal. I'm thankful that the GvHD…
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Hi Greg, I'm sorry to hear of your problems. I also had GvHD but in my case it affected my skin, so whilst it was inconvenient and frustrating it was manageable. I had various treatments for my GvHD including steroids and Photophoresis but I don't know whether they work for gut GvHD. There may be others here who can help…
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That's really good and some great advice in there. Well done Billie and Hayley. Steve
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Hi all, Speaking as one of the existing Community Champions I can vouch for how rewarding it can be to support fellow patients through their treatment. Whilst we are all unique and the effects on us differ, there are so many things we do have in common and being a Community Champions means you may just help someone get…
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HI Donna, I think Hayley's advice above is really good and hopefully helps reassure you. I didn't experience many severe problems at the stage your son is at now, though I did suffer from the runs regularly. I put that down to the after effects of the treatment and my systems not being fully up to speed. Hopefully you will…
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Hi Tom, That's good news that the GvHD has cleared up easily . Without any complications like that you should see the tablet count come down fairly quickly. I remember I was on about 30 tablets a day of various types when I first came home, but that reduced slowly as things got better. I was on tablets a lot longer than…
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Hi Martin, I had ALL and the reason was just down to the protocol I was on (UKALL14 trial). I'm not sure if that was because I was at a high risk of the ALL coming back, so was a belt and braces approach. I had chemo for 3 months and one month I had a lumbar puncture every week (4 weeks) with one a month for the other two.…
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Hi Martin, I had lots of lumbar punctures throughout my treatment as part of the protocol I was on. I then had to have them every 3 months for 2 years post transplant. In all I probably had about 16 lumbar punctures. The reason for them as I understand it is that the spinal cord is separated from the main blood system, so…
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Hi there and welcome to the forum. It's a nervous time when you're told you need a donor transplant to cure your illness and it's not surprising you feel as you do. I never actually knew what sort of a match my donor was so I don't know whether it was 9/10 or 10/10 or anything else. I was probably so ill at the time I…
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Hi Tom, good to hear that you're doing well. I have a Labrador too and walking him each day was a good way of regain some fitness. Your wife is probably right asking you not to overdo it but it's good to build up your exercise as long as you stay within your limits and don't overtire yourself. I have a new outlook on…
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Hi Mandimoo, and welcome. I'm a similar age to you and had my transplant for ALL in January 2013, and like you I suffered from skin GvHD from about 4 months post transplant. I also went onto steroids (Prednisolone) and was on a high dose initially which seemed to get things under control and certainly reduced the effects,…
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Hi Charlie, You probably do feel a little overwhelmed at the moment with the combination of the CLL returning and the prospect of a stem cell transplant possibly being the solution. Nobody here will tell you they went into the transplant without any fear and there's no doubt that it is a daunting procedure to be facing.…
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Hi Sam, That's good news on your dad and I'm glad to hear he's doing well without too many complications. I think getting tired quicker is something we all notice but it's just a case of adjusting to the new you. It sounds like his workplace have been very supportive and it will be a big milestone s=to start back at work…
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Welcome to the gang Hayley. I'm sure your experience and advice will be very helpful to everyone here and having some clinical input will fill the gaps that us patients can't. All the best, Steve
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Hi there and welcome to the forum. I'm glad you've found it useful over the past months and I've no doubt it will have been and still is an anxious time for you. I don't think anyone can fully appreciate what you are going through until you speak to someone who has gone through the same, so that is why this forum makes…
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Hi Emma, That's a great blog with lots of useful information and having read through it you have certainly had an eventful time! Fingers crossed that your new stem cells finally get on top of your problems and you can carry on a normal life afterwards. The photographs of your hands with the GvHD are so much like I had that…
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Welcome to the club Dee, I hope you find lots of useful information here and not too many scary stories. We're here to support you through the process and can hopefully help you out with any concerns you have as things crop up. Fingers crossed that the Allogeneic STC works for you and stops the cycle of relapse. I guess…
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Hi Sally, Fingers crossed that the stem cell top up gives things a jump start and your partners counts start to grow. Please do keep us up to date if you get chance. Steve
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Hi Nigel and welcome to the forum. I'm sure you'll find lots of useful information here and possibly one or two things that might give you concern. However your attitude is the right one to take and you must stay positive throughout, even though at times that will be challenged. Your experience with your sister has…
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Hi Tania, For me the hair loss was short term and everything is back to normal. It was slightly worrying at first as my hair had come back following my chemo then started to go again. With the GvHD it never went completely but did become thin and I lost all the hair on my chest, back, arms and legs where my skin was dry.…
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Hi Sally, I wondered whether there's been any update on your partners condition and whether there was any feedback from the biopsy. I hope everything is ok. All the best, Steve
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Steve, Thanks for sharing your story, and having had ALL myself too I can relate to every part of what you've been through. Thankfully for me I was in remission within the first month of chemo, but I had two more months of progressively harsher chemo afterwards, just to make sure it was gone, followed by my stem cell…
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Hi Sally, That's not a condition that I've come across, but hopefully there might be someone who has had the same condition that might be able to give you some feedback. I guess the counts rising might be dependent on your partners treatment before the transplant and their health beforehand as it may take longer for the…
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Hi Michelle. Like Peter the dry skin sounds like GvHD to me as it was something that I suffered from and I don't think it's related to his underactive thyroid. For me this started about 3-4 months after my transplant and affected most of my body, with my face particularly dry and crusty each morning. I used various creams…
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Hi Tania, I had skin GvHD which started about 4 months post transplant. I guess it affects people in different ways as mine resulted in very dry, itchy skin. This was all over my body and my face was particularly bad each morning, looking almost like it had a hard crust of dry skin over it. The worst part was the itchiness…
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I think Chiara hit the nail on the head there when she said it could be the first time the GP had encountered a blood disorder. I know that in a follow up appointment with my GP over some repeat prescriptions my GP's knowledge of the process was limited and they asked several questions out of interest, which I was happy to…
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Hi Becky, That must really be taking it out of you and no doubt your energy is very low. Fingers crossed the transfusions and other treatments work and your levels start to climb again. How are things otherwise? Are your Neutrophils still climbing? You mentioned other issues too which I hope are getting better. Take care…
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That doesn't sound right to me Stacey. I don't remember having any pain from it, apart from maybe a bit of soreness around the entry point once the local anaesthetic wore off. I presume he's said something to his medical team? Steve
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Hi Becky, From what I remember I had a couple of dips with my red cells during my recovery, even after day 100 which is still relatively early in your recovery. I still had a couple of transfusions to give me a little boost. As long as your neutrophils are on the up it sounds like things are heading in the right direction.…