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Thanks again everyone for your replies. I agree with all your comments. I definately feel much more emotional and more vulnerable than I ever did before and it's so important to do things that take our minds away from the constant worry of hospital monitoring visits. My horse is a very steady ex riding school horse so I…
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Thank you so much everyone for your support. I'm fine today although I was at clinic today which was emotional added to which I had to give the sad news to a mutual friend. Thank you all for your advice. I particularly like Rachelj01's comment about horse riding! I bought a horse 3 weeks before my diagnosis. I had my first…
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My appetite recovered a couple of weeks after transplant. However a friend of mine had a feeding tube in for around 9 months post transplant due to lack of appetite. She has just had it removed. Not pleasant but it has served it's purpose and stopped her from losing more weight as she was extremely thin. I lost around a…
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Fear and worry are massive concerns for patients and relatives alike . The doctors prepare us for the treatment and there is support available to help us work things through but we can never really be prepared for the amount of stress we will go through due to fear and worry. At times I've been scared to make plans for the…
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Hi Natalie I've had the same issue. I had flu at Christmas and my white cells dropped. I was neutrophenic for 6 weeks and had GCSF injections which made my white cells yo yo. Red cells and platelets were unaffected and I was told flu was the cause but it didn't stop me from worrying. I have since been told that viruses can…
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Would like to add that I've experienced panic attacks when I try to do things I would have done in the past without thinking and have cancelled plans I've made as a result . I now try to make sure I have all bases covered before I go somewhere for example if I don't feel like driving can someone give me a lift or can I get…
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I've had two bone marrow biopsies which are both 96% chimerism. Although my doctors would prefer 100% chimerism and are contemplating a donor lymphocyte top up, there's no rush because my chimerism is stable, is not far off 100% and because I have mild GVHD. It's always a worry when you don't have 100% chimerism but the…
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I Had flu A at New Year and my white cells dropped. I was neutrophenic for about 6 weeks even though I got over flu fairly quickly. The GCSF injections made my white cells counts yo yo which was quite irritating as just as they started to climb they dropped again. Septrin was stopped and I've only just been put back on it.…
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Hi KatyB I am 8 months post transplant for AML and like a lot of patients have worried myself silly about relapse and infection since my transplant. I recently spoke to one of my doctors who said that a lot of patients suffer from a form of post traumatic stress disorder around a year after diagnosis. I had the…
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I was working full time, walking my dog twice a day, doing park runs and had just bought a horse which I was riding a week before my admission. Looking back I think that my basic level of fitness has really helped with my recovery but when I was going through the transplant and during those first few weeks afterwards I…
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Hi I'm new to this site as well. I am 52 years old and am 5 months post transplant for AML and remember that those first few weeks after my transplant were rough. I was desperate to get home but felt dreadful for several weeks after I got home. I suffered a lot with nausea, vomiting, struggled with eating and slept loads.…