Please read the house rules and keep this community safe for yourself and others.
Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
-
Hi Claire, Rachel has given some useful pointers there and I'd agree with them all. Goals change as you go through transplant and can be many different types, whether they're medical, physical, social and so on. In terms of medical, it would be things like the first sign of cell counts climbing, discharge from hospital,…
-
Hi Jane, keep going. You probably know from the stage you got to before your setback that it does take a long time to start to feel normal again. You were two and a half years post transplant before the AML came back so were probably feeling quite good by that time, but you'll also know what it took to get there. I guess…
-
Hi there, I’m one of the Patient Champions here and a transplant patient myself, so I can perhaps give you some insight from the patients perspective, and hopefully others will chip in with a careers viewpoint. Everyone will be different in the amount of support they want from their loved ones, and the amount they want to…
-
Interesting what Rachel says about being more emotional since transplant. I've always been a bit of a big softy at heart but things I might have got a lump in my throat at before are alot more likely to bring a tear to the eye these days. I can't watch an episode of DIY SOS or Long Lost Families without the tears welling…
-
Hi there, I'm sorry to hear about your friend and that it has had such an effect on you but thank you for raising the point as it is something that we all might face. I think it's only natural for us all to have anxieties of some sort during or after transplant, particularly around relapse. It sounds like in your case it…
-
Hi Neil and welcome to the forum. Like Rachel I'm also a community champion and here to help however we can, but its great to have as many people here who have gone through transplants and can support others going through theirs. Like you I had ALL and was diagnosed in August 2012, having my transplant in January 2013. I…
-
Hi Lindsaylou, I think like others have said it does feel very lonely place when you or a loved one is going through a transplant. The only contact you have is with the medical team who don't necessarily deal with the emotional side of the transplant, and with friends and relatives who don't really understand what you are…
-
Hi Garrie and welcome to the forum. I'm Steve and I'm one of the online community champions. I'm a transplant recipient myself for ALL and had my transplant in January 2013. We have patients and relatives of patients here at various stages of transplant and for all sorts of conditions. Whilst we all experience transplants…
-
Hi Julsey, I struggled after my transplant with my appetite and weight loss. I lost three stones during the course of my treatment and it took a long time to get that weight back (though I confess I eventually did and more!). For a long time I lived off nutritional shakes (made with a dollop of ice cream) and soups but I…
-
Keep going Jane, we all know its a long road to recovery but you'll get there in the end. It feels better being able to recover at home and I hope you can make the most of the great weather we're having at the moment, but be wary of the sun! Keep us posted as you recover. All the best, Steve
-
Hi Natalie, Julemy has probably answered your question, but it is common for counts to fluctuate post transplant, particularly in the early days, and a minor bug or infection can upset the balance. As you say your red cell counts are good that is perhaps a sign that your graft is doing what it should and possibly that due…
-
Hi Fay, I've just picked up on your post. That's good news that your counts have picked up again. It must be worrying when it happens, particularly if it happens regularly. I presume it is the CMV or another infection that has knocked your counts down? Glad it's recovered for now. How are you feeling generally with your…
-
Hi Krista, fingers crossed everything goes smoothly. The transplant itself felt like a bit of an anticlimax when I had mine as there is very little to it. It's not much more than a blood transfusion in terms of the procedure itself, but it's so much more exciting as you feel it is the first step to recovery. I can give you…
-
Hi Annabelle, I'm Steve and I'm one of the online community champions here. I'm a transplant patient myself and had a stem cell transplant about five and a half years ago now for Acute Lymphoblastic Leukaemia. I'm really sorry to hear your news regarding your hubby and I expect your minds are a blur at the moment. I…
-
Hang in there, the GvHD can be a nuisance and the itching is hard work. My top tip is buy shares in E45 and start having a long soak in a bath every night with E45 bath oil in it. That really soothes the skin and helps relieve the itching. I've got my fingers crossed that your wedding falls between treatments and that…
-
Hi again Cellbydate. I'm so sorry to hear that the AML is back which must be so disappointing and worrying. There are several patients here who have relapsed and a number of threads regarding the treatment to get them back into remission and then undergo second transplants. Somebody out there will have experienced the same…
-
Hi Jane, It's good to hear from you and glad that things are stable at the moment. I've got my fingers crossed that things keep progressing smoothly and that you can go home before too long. Stay well and please keep us updated when you feel up to it. Very best wishes, Steve
-
Hi there, I echo Greg and am sorry to hear that your chimerism has dropped and I really hope there's a straightforward reason for it. Fingers crossed for a good BMB result but when they know whats going on in your marrow it should give some pointers as to what needs to be done to rectify the problem. We're all here to…
-
Hi Gail, Tha'ts good news. If everything is clear and your chimerism is 100% it is hopefully a matter of time before things pick up and you're on the up. Keep plugging away. Steve
-
Hi there, What you're describing in terms of the dry skin on your face and round your eyelids sounds a lot like what I experienced when my GvHD started and if that's the case it could have had an effect on your counts. Whilst that might sound worrying GvHD can be a good thing as it also creates a graft versus disease…
-
Hi Katy, as others have said you're not unique in feeling this way and it does take time to have confidence in your body and your immune system. You will feel safer when your recovery gets further down the line and you start to feel more yourself. Things like having your childhood immunisations will help, and conquering…
-
Hi again, I just posted on the other thread but just to reassure you as Rachel has done that blood counts do fluctuate during the early days of transplant, particularly if there is some sort of infection, such as a cough or cold. Try not to get hung up too much on the counts, as long as the trend is generally upwards. The…
-
Hi there and welcome to the forum. I can't imagine what it must be like to watch a child so young go through this type of treatment but it sounds like she's doing well and 100% chimerism sounds like a good sign that the graft is doing well. For all of us there are ups and downs throughout the post transplant period and…
-
Hi Kitty, I guess the cough and temperatures caused by the flu virus might be affecting his counts. Hopefully when those infections clear up his counts will recover. I was interested that they might put the line back in for ECP. I had ECP too to get rid of skin GvHD but my line had been taken out well before this started…
-
Hi Kitty, I'm sorry to hear of your partners problems and hope the medical teams are able to get on top of his infections and get him back on track soon. I think there's been a lot of nasty flu bugs around this year which can be very harsh on us when we are still fairly young in terms of transplant. I've had a chesty cough…
-
Hi John, I'm just catching up on this after a few days offline due to an office move at work. I'm one of the online community champions and here to help however I can. I don't think there's much I can add to the discussion, and Rob's post is perhaps very useful to you as someone who has been in the same situation. What I…
-
Hi Gail, I'm sorry to hear about the troubles you're having, it sounds like it is quite worrying for you which it would be for us all.. I guess the positive news is that the tests you've had to date don't show anything abnormal, particularly the biopsy and the ECG. Ferritin does sound very high. Mine was around 1300 post…
-
Hi Jane, I'm one of the online community champions here and had a transplant myself for ALL in 2013. My treatment plan was always a transplant from day one as I was at a high risk of my Leukaemia coming back. I suspect it feels a bit daunting at the moment hearing that your husband has relapsed and must come as a blow if…
-
Hi Amber and thanks for posting on the forum. I'm one of the online community champions and had a transplant 5 years ago for ALL. As Hayley has said it is normal for our blood counts to fluctuate for some time following transplant and my be particularly the case with your daughter due to her GvHD, EBV and Shingles. It…
-
Hi Norma, welcome to the forum. I'm one of the community champions here and had a transplant myself just over 5 years ago, but in my case it was for Leukaemia. I'm afraid I can't comment on what might be happening with your partner or whether it may be a problem with his spleen, but hopefully one of the Anthony Nolan team…