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janemill
Comments
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Colin, It is good to see your liver function numbers are so much lower than they have been, although as you say, a little higher than they should be. I hope it is not causing you discomfort and that the GVHD is still the “Goldilocks amount” .( I believe it is good to have some). Take care Jane
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Hi Steve and Rob This is SO good to hear. Thankyou. My levels are currently around 1400 I believe.but are rising. I’ve had one venesection but it made me feel quite rough and my haemoglobin level shot down, so they stopped. After this they started talking about needing to do some other treatment which may have side effects…
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Sorry to hear this Colin. Is it something that affects you? It sounds at least as if the number is coming down, is that right? My situation is different I think. I am not aware of anything wrong generally, but apparently there are too many “ferritins” in my body and they are collecting around my liver. (The mind boggles!)…
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Thankyou Steve. I am nowhere near as far along as Colin (I will reach my 2- year anniversary 29th this month from my 2nd transplant. I relapsed after only 2 and half years). . I, too feel a bit out on a limb. I’m not saying I am, but it’s hard to find others to understand. There was a gentleman called Rob on this forum…
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Thank you. I’ve been trying to find your story on the forum. Where is it please?
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Thankyou Colin. Like you, I really wanted to find someone who has had a similar experience to me. Very much so. There was one gentleman on this forum (Rob) who had a 2nd transplant, but I don’t know how he is doing. Well done on reaching your 3 year mark. I will be 2 years next month. Are you keeping well? Have you anyone…
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Thank you Mandy. Feeling quite positive at present and definitely enjoying life a day at a time ?How are you dong?
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Thank you. It is good to hear from you. I have for one reason or another not been on the forum for a considerable time. I am certainly encouraged to hear that you are so far past the 2nd transplant. How have you been keeping? I seem to get everything that’s going....but although it is frustrating not feeling safe to make…
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Hello. I, too had a stem cell transplant, back in 2015. I wrote a letter of thanks. Unfortunately I relapsed in 2018 and the gentleman concerned was gracious enough to do it again. I wrote a 2nd time and on neither occasion did I get a reply. I accept he may wish to remain anonymous and fully respect that. I just have a…
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I send you my love Mandy ...what can I say? I am so very sorry to hear your news. Thankyou for your part on this forum. You have been a blessing even in your own struggle. Thinking of you and your family . Jane x
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I've just been catching up on this thread and I wish you all well on your journeys. Great news to hear Bob still in remission, enjoying life. Long may it continue. I am now 5 months post transplant and beginning to feel a little more 'normal' than 'sick'. I have been told I don't need to go back to hospital for FOUR weeks!…
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Thankyou so much. I have read and re-read these comments when I have had difficult days and found them to lift me. I heard on Friday that my bone marrow test was good and I am now officially in remission. This is really good news of course, and I am very relieved. The ongoing recovery is still in progress however, and at…
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Thankyou so much. Reading your comment, I realise there is also still a part of me that is thinking in terms of one day I'll be back to as I was. But I know I won't . I will try and think more in terms of what a good 'post transplant' life can be like and maybe I won't keep looking back and comparing. Today has actually…
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Hello everyone. I realise it is a long time since I talked here. I have been up and down, I suppose. Generally a very positive person, I would say, with a strong Christian faith, I have found myself struggling lately. I am beginning to get out and about a bit more, but finding it hard when people assume from this that I am…
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Managed to stay home a week this time. And still here. First few days were a bit rough, but the last 3 have been good. Eaten better - even put on 0.5kg. ! I can now pretty much shuffle around the house unaided, but can't do stairs safely alone. Haven't ventured out yet except on my wheels. I have developed what seems to be…
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Came home a week ago Friday. Slept Saturday. Back in hospital Sunday (temperature). Back we went. Home again yesterday. Feeling very weak and "jelly-legged" but otherwise quite good. Thankyou everybody. Jane
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Thankyou everyone. Good days and not so good days. But inching forward hopefully
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Thankyou both. I am gradually emerging....I am out of the hospital room, being looked after by Derek in one of the flats on Addenbrookes site. I am very weak of course....not quite stable enough to go home, especially as I need to come back 3 times a week (4-hour round trip) But ......Yes, still fighting. Feeling very…
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Thank you Rob. As you can imagine I follow your posts with great interest. I am very glad for you that you are well enough to enjoy life, albeit within limitations. It's amazing how we adapt to new situations. Update for you all. It is actually happening for me. All tests done. Hickman line in ready. Admitted hopefully…
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Hi Mandy, I am so sorry that Sean did not get good news from his biopsy. I feel for you both, it is what we all dread to hear. I don't know whether this will help you, but I had AML and had a stem cell transplant in 2015. I relapsed last August and have since been on azacitidine. I was found to be in remission after 5…
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Thankyou, Christine, Rob and Mandy for for your support and suggestions. It is quite unnerving this time round. Last time I didn't have time to think really. At least this time I am approaching the transplant from a healthier position. I do trust my doctor and team which is a blessing. I take on board the advice of being…
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Yes, I find this aim to achieve "just enough" GVHD really scary. I had virtually none last time (which at the time I was pleased about of course!) so I know I need some. But then the possibility of long term problems comes up and I think particularly of my husband if this becomes chronic. At the moment we approach it as a…
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Update. Sorry Rob for not acknowledging your response....I thought I had. As you will understand, my mind has been in a whirl. I hope you are doing ok. I would be interested to hear an update of your situation. I have been offered a second transplant and my admission date is May 18th. I have been warned it will be more…
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I have only just caught up with your news Christine. So glad that Bob has recovered...or is continuing to recover (it can take a while!) from the virus, it's something we all dread really I think. But what wonderful news about the chimerism. So pleased for you both. I am well, thankyou. I have begun the pre-transplant…
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I am sorry to hear this...but glad the Aza has started again. Hope the results continue to improve. Thinking of you of course. Take care and I hope you both manage to have a happy and relatively healthy Easter. Best wishes, Jane
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No, Can't say I have breathlessness as such...certainly nothing to concern me. I think I have been very fortunate. My main potential problems have been sickness and constipation, both of which are controlled very well by the medication as long as I am careful.I have just finished round 6 and now have a break till just…
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I have only just read your latest entry Christine. I am so very sorry that Bob has had such a hard time recently. What a scary time for you all. I really hope that things are back on an "even keel" now....certainly the weather has improved! This is such a mixture of experiences.....of highs and some extreme lows, too.…
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Hi Mandy. I have just read your update on Sean. Strangely enough I was thinking about you today and wondering how he was getting on. I am sorry he is having a difficult time with the azacitidine and really hope he can get on top of the side effects soon. You will be pleased I am sure to have the biopsy after this next…
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Hello again Mandy. I'm glad Sean is still up for his next cycle. It's worth giving it a go for a few rounds. My experience was that the first round was definitely the worst, with sickness and constipation especially. When they were under control, these difficulties haven't returned (thankfully!) I have actually experienced…
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Of course, Mandy. By all means keep in touch. I have found this forum really helpful and supportive. As regards your question, there may well be that option, and I would suggest you ask them directly....I am sure they will give you every possible route. I did not even ask for myself as I was offered the straight choice.…