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greg777
Diagnosed with myeloma in March 2015. Auto-transplant in Oct 2015 followed by allo in Feb 2016.
Comments
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Hi Harshman, Wishing you all the very best with this. It's likely to be a tough road ahead but you can do this - there are loads of people who have been where you are and have come out the other side. Keep strong. Greg
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Hi Aileen, that's really great to hear. On the work front, I am taking things really slowly, I guess because I have had these minor infections kicking around - I have 3 young children and my wife is a primary school teacher, so keeping away from bugs is virtually impossible! But I must admit getting back into the working…
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Hi Aileen, Sorry I never replied to your question. I have started back at work on a reduced hours basis, working from home. My employers have been very understanding which I am very thankful for. How are you feeling now? I am hoping you are feeling better than a few weeks ago. What did your GP / transplant team say? I have…
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Hi Tracey, I just wanted to say I am very sorry and I am thinking about you and your husband at this horrible time. I had really hoped the falling blood counts were just due to things needing to take time. I echo everything Steve has said. We are here to support in any way we can. Greg
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Hi Aileen, I think we are at virtually the same stage post-transplant (mine was 4 Feb last year - congrats on 1 year btw!). If it is any consolation, I am finding it pretty hard to shake off bugs. I have 3 young children and my wife is a primary school teacher, so there seems to be a pretty constant state of infection in…
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Hi Tracey, Thanks for your post. I really hope you get some positive results soon. I really feel for you as the period when i was writing these posts was the worst in my whole life, much worse than the transplant itself. All sorts of thoughts clouded my head. I think the only thing you can do is watch and wait, do the…
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Hi Harshman, I am glad the post was of some help. I was lucky that I only live about 10 miles away from a transplant centre so I was allowed home after a couple of weeks. I know if I would have lived further away I would have been required to stay near the hospital for a similar period of time. The first 100 days post…
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Hi Harshman, Welcome to the forum although sorry you had to find it. I think isolation and infection are two of the things a lot of people worry about, so that is natural. The medical teams in my experience are very good at managing the infection side of things whilst you are in hospital so try not to worry about that.…
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Hi Tracey, I am not an expert on the science unfortunately. Just wanted to let you know my chimerism was 100% at the first biopsy and then steadily slipped down to 85% (it is slowly beginning to go back up again now). I was told that it can often happen that chimerism goes up and down in the post-transplant phase. I was…
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Hi TJM, I really feel for you. I think I was in a very similar situation to your husband about 6 months ago and it was horrible. There are loads of reasons why platelets could be falling. Whilst I know it is incredibly hard, I think the best is probably to try to switch off all those doubts in your mind until you get the…
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Hi Walshy, I have had immunoglobulins since October. The first lot I had over 4 consecutive days, now I just have it once a month to get me through winter. The first time I had it I had a reaction and spiked a very high temp. But now they give meds beforehand and I don't have any problems. I don't know for sure but getting…
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Hi Walshy, I'm very sorry, I haven't come across haemolysis, but I really hope your husband's doctors can get on top of it soon to get it sorted out. If it helps at all, I just wanted to let you know that my donor is not the same blood group as me - I think it is quite normal for donors not to have the same blood group and…
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Hi Laura, Thanks for your post. I think it will be different for each person, but if it helps, this is my experience: 1. Tiredness - for me, this was impacted because I kept getting a lot of infections and I also experienced low mood, so it is really hard to tell whether these impacted my energy levels, but for me, there…
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Hi everyone, Not sure if this is really connected with this topic or not, but I wondered if anyone had experience of gynecomastia post-transplant? This is where the breast tissue in males enlarges. I have been noticing changes in that area for about a month now. The doctor said it was gynecomastia and said he has come…
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Hi Laura, I had EBV around Day 100. To be honest with you, I was already feeling shocking after spending 7 weeks in hospital for GvHD, so I can't really remember what was caused by EBV and what was caused by the after effects of GvHD. I was given a course of rituximab and that cleared the EBV from my system pretty quickly.…
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Hi Jojoc, What an amazing post, it was an absolute pleasure to read it. I recognised a lot of the emotions and you express them so eloquently well. I am 11 months post-transplant so I guess I feel I am at a similar stage to you and so it struck a chord. Great to have you on here, there are so many great people and i'm sure…
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Hi Tracey, Thanks for your post. I am definitely in a better place now than I was a few months ago, so if this gives you and others hope in the darker times, I am really glad about that. I think everyone has an individual experience post-transplant, which is why I think it makes sense to follow the guidance of your…
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Hi Tracey, Very understandable for you to worry - you can check out my old posts for evidence that you are not alone in that respect! Whilst I didn't have CMV, I did have adenovirus for a long time post-transplant and it took my counts a long time to recover as a result. It was more than 200 days before my Neutrophils got…
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Hi Tracey Everyone is different but if it helps, I definitely came out of the other side of some dark places post-transplant. My appetite disappeared, my digestive system gave way for a while and I got very underweight. I couldn't see a way back at times, but it happened. I got on top of infections and things started…
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Hi Walshy, I had problems with low platelets for about 200 days post-transplant. We did a whole variety of tests, but all came back inconclusive. Mine started improving eventually on their own and the low counts were put down to my new marrow struggling with numerous infections - my problem was adenovirus rather than cmv.…
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Hi Leah, I have not had oral GvHD but I did have fairly bad mouth ulcers quite soon after transplant. It turned out to be the herpes virus and an increased dose of aciclovir for 5 days sorted it out really well. Sorry I can't help further. Hope you manage to find out what it is and get the right treatment to sort it out…
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Hi Steve, I am really pleased to hear that there was nothing too concerning in the late effects test and that you have a plan with regards to the libido. I suppose given everything that has to be contended with as part of the transplant process, I guess it does fall down the pecking order somewhat, but it is important in…
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My donor has a different blood group to me and I haven't changed over yet - I am 10 months post-transplant. I asked my consultant about this and he said blood groups were a complicated business and not necessarily relevant to the success of a transplant. I didn't go into the detail of it because I got the impression it…
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Hi Hayley, Many thanks for your support with this. I had a good talk with my consultant today and he allayed my fears in that he said that it is mainly when you are doing a DLI that it can be preferential to do it closer to the transplant, and with a stem cell top-up, it doesn't really matter when you do it…
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Hi Aimee, Great to hear from you again and I am sending all my best wishes to you and Matthew over the coming weeks. I just wanted to support what Steve says. It is good that you have some understanding of some of the potential risks around the transplant (eg, GvHD) but Matthew might not experience it, so in my opinion I…
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Hi Hayley, Many thanks for your support and advice. At my review this week, I have been told that the stem cell top-up has been put on hold. This is because my counts are generally slowly improving. All 4 of the main counts are still below the normal range and have been for over 6 months now. The WBC concerns me the most…
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Hi Tracey, Definitely best to check with your transplant team but if it helps to let you know you are not alone, my WBC and neutrophil count fell about a similar time post-transplant to your husband and stayed below 2 for over 6 months. I am sure your transplant team will be keeping a very close eye on your husband's…
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Hi everyone, I just wanted to provide an update as to how I am getting along. I have had two bone marrow biopsies, chest scan and a series of blood tests to try to work out why my blood counts are still struggling. Thankfully, nothing serious has come up in any of the tests, for which I am very, very grateful. The…
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Hi TJM, Very sorry to hear about how your husband is doing. GVHD can start at any time after engraftment - in the first 100 days it is called acute, after 100 days is called chronic. Definitely mention it at the hospital tomorrow - the medical team are very experienced in looking for, diagnosing and treating GvHD. I had…
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Hi Elmambo, thanks so much for your note. Really glad it could help in some way. Hope you manage to get the support you need on this. Very happy to share my experiences if needed and helpful. All the very best, Greg