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beckybram
Comments
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Hi Georgie, how are you getting on with the DLI? I had a total of four DLI treatments and it took some time before my chimerism started to improve but it did eventually and I had no GVHD, everyone is different but it can take a while for it to start improving the chimerism
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Thanks Rachel, I Hadn't thought of that, I did have some physio breathing exercises but many years ago, i will definitely ask to be referred again and get some new exercises for lung capacity
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Hi Lindsay As Steve said it depends on what your husbands treatment plan is. I didn't need pre chemo before being admitted to hospital for the intensive chemo so we were able to go away for a couple of days (locally) pre transplant. I seem to remember it was at least 3weeks before as I was trying to avoid busy places etc…
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Hi Gail thats great news that your counts are starting to climb and you are beginning to feeling a bit better, do keep us posted on your progress. My blood group changed too! best wishes becky
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Hi Lindsay I am also a patient but can understand the whirlwind that is preparing for a transplant, I agree with greg it is so important to make time and look after yourself too, whether you have close family or friends that can help with errands or do your shopping (an online shop is also a good idea and after transplant…
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Hi I too had a course of rituximab post transplant i had low grade EBV and haemolytic anaemia, I had no ill affects from the treatment and the EBV has not returned, I would check with your specialists before you are discharged from the rituximab course of treatment as to when you next need your bloods checked I am still…
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Hi Gail is it hemolytic anemia? I developed this after transplant and it got to the stage were I was hospitalised and needing almost daily blood transfusions but after they tried alternatives which didn't work they finally tried Rituximab this worked wonders and my red blood cell counts soon began to climb and I haven't…
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Hi Cath having a stem cell transplant is a big decision especially if your husband is feeling well at the moment, it makes it hard to comprehend being more ill to get better!, but what I have learnt from my consultants is that it is the best time to do a transplant. You need to be as well and as fit as you can be to help…
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Hi I have not had a pregnancy post SCT nor do I have children but I did have fertility treatment to freeze eggs before transplant so that the option is there, I am unsure on natural pregnancy post ScT but am sure your clinical nurse specialist would be able to advise/ get you an appointment at fertility clinic to discuss…
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Hi i have had stem cell top ups (not a second transplant) , if your daughter does need them and it is the same as I had, it is a painless process, you go into day treatment have your bloods checked and if all is ok they send off to the lab for the cells, you then have some pre meds which can make you a bit drowsy and then…
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Just an update, I have started HRT treatment and have had no side effects so far, it has helped some of the menopause symptoms, my docs have gone with a gel and tablets :)
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Hi Katie These feelings and fears are ones I think most women & men who are young and don't yet have a family yet go through when needing a transplant, its a very scary thought that a transplant can end your chances of conceiving. I think we take it for granted that when the time is right we will be able to start a family…
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Hi Rachel Thank you for replying yes I too am on vitamin D and calcium, my periods stopped so not sure how that will play out, to be rid of some of the menopause symptoms would be great as you say with numerous other problems its just one more thing on that ever growing list! I am lucky that I did have time for fertility…
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Hi I have a dog and a cat, as Steve said hygiene is the most important thing but no need to exclude your pets from your home, the only thing I was told was not to handle the pets toilet side of things for a while after transplant, if you have someone who can do this for you great if not then just extra care and some…
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Hi Louise The thought of being neutropenic is scary, but you just have to be extra careful with hygiene and what you eat. You soon get into the routine, also be careful when family or friends have colds and illnesses as you can catch them easily. Lots of hand washing, I always carry a hand sanitiser gel in my bag too and…
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Hi Steve and Millie My blood is not doing too badly I do need immunoglobulins monthly and b12 and folic acid but the results are mostly within range, Like most I suffer with fatigue and have other medical issues, lymphodema, early menopause, joint problems, nausea and so on. Good to hear your husband is doing well Millie,…
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Hi Walshy rituximab worked in raising my HB back up and did not effect my other blood counts. I don't think you need ivig after or during rituximab treatment. I am having IVIG every four weeks for a different reason ( to help protect from infections) I don't believe it was because of the rituximab treatment.Once started…
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Hi as said above anthony nolan website and Facebook page are a great help when preparing for transplant also looking at peoples blogs who are going through/been through transplant I found helpful. As for isolation and infection I too worried about this a great deal before transplant as I live in Cumbria and my transplant…
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Hi Walshy I have ivig every four weeks( to reduce infection risk) at the moment and when had hemolysis problem had a few infusions over a week, I have never heard them say anything about cost? maybe it depends on your local authority. I think though if it doesn't work after a certain number of doses it means it is unlikely…
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Thanks Hayley, hoping I will get to stay off the cyclosporin and steroids fingers crossed for mild GVHD
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Hi Walshy yes immunoglobulins was the first treatment they tried with me for haemolysis. It is just a transfusion like having blood, takes a a few hours but I had no side effects from it. I still have it now every four weeks but for a different reason. They give it to some people over the winter months to try and prevent…
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Hi Walshy my transplant was november 2015 so just over a year ago. No the cause was not found but rituximab has treated it for now rituximab effects last for about 7 months by which time they hope the problem will have resolved itself. They did say if it hadn't worked they would need to take my spleen out so I think it is…
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Hi Walshy yes I had haemolysis after transplant within the first year. I ended up in hospital for a few weeks as I was making red blood cells but they where being destroyed before fully grown. I had many blood transfusions these were hard to crossmatch and due to cold antibodies needed to go through a blood heater while…
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Hi Greg My IVIG was 4 bottles continuously on the one day, maybe you need a more intensive treatment? my blood counts are going to be checked again in month to see if I will need the treatment every four weeks over the winter months or if a one off has done the trick. Good luck with your treatment hope it works for you…
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Hi all thanks for your replies, I had my immunoglobulin infusion this week. All went smoothly no side effects to speak of, it just took many hours!
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Hi Hayley thanks for replying, Looking back at my notes i have had immunoglobulins before when having blood transfusions but I can not remember if there were any side effects lots going on at the same time, fingers crossed if I do need it there will be little or no side effects November will be a year since my transplant…
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Forgot to update, it turned out I developed heamolytic anaemia were the body is destroying the red cells before they are mature, initial treatment of blood transfusions and immunoglobulins didn't work, so I was given a four week course of rituximab transfusions this has worked and the effects last up to seven months by…
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Just an update, my levels dropped to the 40's so I was admitted to hospital, they think my body is killing off the cells due to an antibody they are hoping this will stabilise itself with the help of blood transfusions and immunnoglobin transfusions.
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Hi Stacey, I think it varies from person to person I certainly had a lot of pain after mine was inserted and a lot of bruising, if you are worried it is always worth checking with your husbands doctors Best wishes Becky
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Hi Thanks for your reply, my red cells have been slowly decreasing since the transplant my consultant said the last bone marrow biopsy showed the marrow is making baby red blood cells then who knows where they go? I have had another biopsy to check again, but as you say the neutrophils improving is a good sign. My other…