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GailC
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Thanks Sue! Yes I am thrilled to not only have a diagnosis but that the problem is treatable. I don’t know yet whether I will need further transfusions but hope everything works quickly and I have had my last! Gail
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Update. Met consultant yesterday and he had diagnosis for me. Anaemia is being caused by a surfeit of T lymphocytes in my blood and marrow which is preventing the development of red cells. So back on a much larger dose of immune suppressant medication (Ciclosporin) and back on all the usual prophylactics to ward off…
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Thanks Sue! I can drive that drip stand pretty fast - have enough experience by now to qualify as an advanced drip stand driver!! I have a very long list of questions for consultant- just hope he has done his homework! Thank you for your support it is appreciated. Best wishes Gail
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Thank you so much Sue and it is brilliant to hear you are 4 years post transplant! My concern about ongoing anaemia is that the endless blood transfusions are filling my liver with unwanted iron. I have a ferritin level of just less than 3000 down from 5000. I am on an iron chelator (Exjade) to flush it out. It is…
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Grrrr went for blood test yesterday Hb 64 down from 75 in a week. Not allowed to duck transfusion so had 2 units. Had to give me universal donor though as have antibodies in my blood which means it is very difficult to match. All the tests I have had now show I am otherwise fit and well which is great but no help in…
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Well thank goodness! Chimerism remains 100% so its not rejection that is causing my symptoms!
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Thanks Hayley. Yes I am coming to that conclusion too! Currently toughing out anaemia which is really sapping but hoping that by depriving my body of support from transfusions I can force the bone marrow to start functioning properly and limit the iron build up in my liver. Good news yesterday that the latest trephine test…
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Aah thanks Greg. Appreciate your support. I am sure it is just a matter of time but I am a very impatient patient! Gail
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Hi all I thought I would post an update. A year since being diagnosed with AML and 9.5 months post SCT I am still transfusion dependent and suffering from extreme fatigue. I have had a total of three hospital admissions in May for observation and tests including a lumbar puncture and scans of brain spine and liver and an…
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Thank you for your reassurance and encouragement Hayley, it is good to know that it is quite normal to experience unpleasant symptoms this long after transplant. The endocrinologist’s report was also reassuring in that there was nothing he did not expect to see. His only change was to suggest that I took my steroids on…
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Thank you Steve. I have had no infections- at least none I am aware of. So remains a mystery. Hoping we can get to the bottom of it soon. Might get the endocrinologists report tomorrow when I go in for my weekly checkup. Gail
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Thanks Steve - yes feeling a lot more positive now!
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Thanks Becky!
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A quick update I had my last of 4 doses of Rituximab 4 weeks ago and very happy to report that my Hb is now climbing steadily without the support of blood transfusions. I am nearly 7 months post transplant and can begin to see light at the end of the tunnel! I am still weak and shaky and fatigued and still anaemic but so…
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Thanks Hayley - yes we do think it is to do with the blood group mismatch. We have ruled out infection and viruses - I am pretty healthy otherwise and came through the treatment without infection despite the neutropenia. The last bone marrow biopsy indicated no evidence of disease but was still a bit ‘unhappy’ so my…
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I know how frustrating it is Kate. Just debilitating. Medics do have some very clever tools in their kit bags though and lets hope that they can soon find something that will put you right. I was thought too old to undergo total body irradiation so had chemo conditioning only before my allo transplant. Good luck and…
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Gosh thanks Becky - that really is encouraging! We don’t think it is haemolytic anaemia as no evidence I am destroying red cells just not hanging on to Hb. But I am halfway through a course of 4 weekly infusions of Rituximab. My consultant tells me he has had success with it in other anaemic patients so terrific to hear of…
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Thanks Greg. Yes patience is a virtue they tell me!!
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Thank you Bernie. Hope all is going well for you now. Gail
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Thank you Hayley and Greg
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Well done Sue. So pleased for you. Looking forward to being through this time and successfully out the other side. I know it can be done!!
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Thanks Greg! Glad I am not alone!
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Thank you Rachel! I am a bit of an information junkie and I find there is lots of great information on here and in the Anthony Nolan publications and on Macmillan and Cancer Research UK which answers most of the questions that start with the word 'what'. There is little that answers the questions that start with the word…
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Thank you Rachel. It is good to know that you have been successfully treated for the same problem. Yes the diagnosis was traumatic - The onset of the disease was so rapid and completely out of the blue. Anyway I have a couple of positive things to report. The cardiologist tells me that my heart is well up to withstanding…
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Thank you Steve. Yes I am currently feeling very well - just the usual post chemo fatigue- and am currently out of hospital on 'parole' for a week before going back in for another cycle of chemo. Have to go for a cardio MRI and see the cardiologist this week as the earlier chemo for NHL has left me with some minor…
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Thank you Nichola !