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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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That's good news Josie. You're not alone in being nervous at all. I'm sure we were all apprehensive about our transplants but hopefully this forum will give you the confidence that you can get through this and come out the other side. Good luck and please keep us updated with your progress. Steve
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Rob, I found the other thread which may help assure you that you are not alone. http://www.anthonynolan.org/patients-and-families/anthony-nolan-transplant-community#/discussion/comment/422 Hope this helps, Steve
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Hi Rob, My own experience sounds very similar to yours and at the stage you are at I think I was on a similar level of medication. The taste changes seem to be a common side effect but do go away eventually. I think there is a thread somewhere on the subject. It takes a little while but it will go away and food will…
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Hi Susie and welcome. I'm sorry to hear of your son's diagnosis but it sounds like he his dealing with it positively and is determined to get well. There are people of varying ages on here so hopefully there will be someone of a similar age who has gone through the process and possibly for AML. I guess the chemo and…
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Hi Bella, I haven't experienced low platelets post transplant, though I did have a couple of further transfusions of blood following my transplant, so I guess until things finally settle down there may be some ups and downs. Has your daughters doctor offered any explanation or advice at all? I'm sure they would let you…
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I had skin GvHD and have just about conquered it just over 2 years since it first showed. Thankfully for me it wasn't so sever that my skin tightened around my joints and affected my mobility, but my skin did become very dry, flaky, and extremely itchy. I guess my best tip would be to moisturise as much as you can. Try…
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Oh Angela, I'm sorry to hear that. I hope the treatment goes well and you know that we will all be rooting for you here. Please keep us posted on your progress and come here for support. This forum wasn't around when I had my transplant but I'm sure I'd have found it useful. There are members here who have had multiple…
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Fingers crossed. Four potential donors sounds like a great result, so I hope a really accurate match can be found amongst them. Please keep us posted. Steve
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Hi Amy, I had my BMT not long before you in January 2013 and can relate to every word you've said regarding the treatment, (which also knocked me sideways) and the lengthy recovery, which sounds to have been a similar length of time to yours. Also like you I've recently gone back to work full time having been on 'light…
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Hi, My treatment started in September 2012 and I'm guessing the search for a donor started virtually straight away as a transplant was always likely. My sister was tested but found not to be a match, but by early December an unrelated donor had been found and I had my transplant mid January 2013. As Peter says, everyone is…
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Hi Billie, I'm hoping I may be able to call in for a while. I'm having ECP in Nottingham first thing in the morning but will be passing Leicester on my way home so I hope I have time to call in and meet some of you there. I'll put it in my diary! Steve
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Hi Angela, I haven't had any experience of my WBC dropping at all, and so far it seems to have been stable. It sounds like yours has perhaps settled if there has been no change for a couple of weeks? I presume your hospital are monitoring you regularly and have checked you for infections etc? Hopefully someone may have had…
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Hi Josiemoss, First of all welcome to the forum. I hope you find lots of useful information as well as plenty of support here. I know the QE very well, but not as a patient, as I was one of the Project Managers who was part of the team that built it a few years ago. I know being in hospital is never pleasant, but I hope…
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Hi LolaB and welcome to the forum. It's great that you've plucked up the courage to post and I'm sure you'll find lots of welcome support. It is a really useful place and there are members at all stages of the transplant process. It's about two and a half years since mine to treat ALL. There's no denying it is a tough…
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Hi Cynthia, My consultant wasn't unduly concerned by my skin GvHD as just as you say is also has an effect against the Leukaemia which is a big benefit. It's good that Davids Ciclosporin is still being reduced despite the GvHD. If Davids medical team can keep on top of the GvHD and restrict it's effects to an irritation of…
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Hi Becky, I echo Peter's welcome to the forum and hope you find the support you will get through here useful. It sounds like you have had a few challenges already with the conditions you've had and I hope the transplant helps resolve some if not all of them. I haven't heard of most of the conditions you mention and hope…
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A belated happy first re-birthday George!! I hope you're doing well and getting back to normal a year+ after your transplant. It's a great excuse to celebrate with family and friends after what you've been through, though if you're like me, every day is now a celebration! All the best, Steve
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Hi Richard, I've replied to your other discussion, but George has said similar to me that the actual receiving of the new cells was actually a none event in the end. The hardest part is the recovery afterwards and the waiting game to see whether the transplant has grafted. That is as much, if not more a psychological…
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Hi Richard, It's good to see that you've signed up and I hope we're able to help you and support you. It's understandable that you are apprehensive particularly given your medical history, but I recall prior to my transplant having a variety of tests performed on me to ensure I was fit enough to undergo the transplant. I'm…
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Hi Becky, Welcome to the forum. The financial losses were one of my greatest concerns when I was first diagnosed with ALL, and being reduced to sick pay would probably have crippled me and my family. One of the first things I did was spoke to my immediate line manager and also contacted my regional director. I've been…
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Hi Rach, You'll find plenty of support on here from people who have been through transplants and others who are at a similar stage to your dads. It sounds like he's had a tough time and is no doubt apprehensive about the transplant. I hope we can help support you and your dad through this tough time. I had a transplant in…
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I saw this on Facebook and shared it to my friends. Nurses are some of the unsung heroes. They put up with so much and see us at our lowest ebb during treatment, but still manage to try to keep our spirits up, no matter how hard their day has been. The nurses who looked after me were fantastic, and very professional at all…
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I had itchy skin in the early days which I put down to hair growth at about the point your husband is at. However I did develop skin GvHD later on but that was really dry skin, which was sore and very flaky, particularly on my face which was almost crusty in a morning when I woke up. You will certainly know the difference…
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Hi Billie, I was one of the people who commented, but to expand on my comments on Facebook I'm glad there's some recognition of this being a genuine condition. I've often heard people refer to 'chemo brain', and have been known to use it myself when I'm struggling to think of a word or remember something. The worst is when…
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Hi Cynthia, It's understandable that you will worry as it is an apprehensive time for you and David. It sounds like David is doing well and isn't far off the first milestone of 100 days post transplant, which was the point by which I was told most major complications would have shown up. I'm afraid that's not to say it's…
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I use factor 50 sun cream if I know I'm going to be out in the sun for any length of time, and I usually wear sun glasses when it's bright anyway as my eyes have always been sensitive to bright light. I had skin GvHD and my skin is now no drier than normal, and the GvHD didn't affect my eyes thankfully. My GvHD appears to…
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For me it was because of the type of Leukaemia (ALL) that I had Cynthia. I was told that because of Government legislation I could only be treated at a specialist centre. In my case the nearest centre was Leicester, as Northampton at that time didn't do full blown transplants for ALL. That may or may not be the case with…
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Hi Christine, if your husband doesn't want to go to a support group meeting at this stage, he will be more than welcome on here. We've all been there and experienced the same difficulties. I've had skin GvHD and I know others have had other types, so he will find lots of support from the members here who have similar…
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I guess we're all different, but at 28 months post transplant I'm not doing too badly. I still find that things knock me back harder than they used to though and only a couple of weeks ago I had a flu-like bug which really knocked me for 6. Thankfully though it only took a week to get over with nothing more than the usual…
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I hated the 100mg Ciclosporin tablets Colin. They were like trying to swallow the old Liquorice Torpedo sweets. Whenever they were dispensed I used to ask the pharmacist to change them for 50mg tablets. By far the hardest tablets I've found are the Aciclovir. Being water dispersible I found that if you don't swallow them…