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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 Elmambo, Thanks for your message. Don't worry at all about your emotions. This is a big thing and it is very natural to feel the way you are. The main thing I can say is to definitely not over-use the Internet. It can be an amazing source of info but it can also lead you into an unhelpful spiral. When I had acute gvhd,…
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Hi Laura, Really feeling for you. I have done two transplants in the last 12 months and this was probably the hardest thing to cope with. I have 3 children under 10, and it was really difficult not to see them for an extended period. Do you have support from partner/friends/family/school? My wife did an amazing job and she…
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Hi Aimee, I am just so pleased for you and Matt. Whilst I don't understand the specifics of your situation, I understand how tough it can get and so it is great to read about such great progress as this. Best wishes to you both and I really hope you enjoy the next few days out of the hospital and in a more relaxing…
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Hi Aimee, Thanks for your post, I am glad mine was of some use to you and Matt. I really think everyone's stories are unique to them, but in case it is helpful, here is a bit of background on me. I was admitted to hospital with a bad blood clot which stretched all the way up my left leg and almost to my lungs (which could…
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Hi Miss Manxie, First of all I just wanted to say I am really sorry for you and your partner that you had to receive this news. I was 36 when I was diagnosed so not such a dissimilar age and I too was pretty fit, didn't pick up many illnesses and thought I was in the prime of my life. As Chiara has already covered, the…
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Hi Steve, Best of luck today and hope the results come back ok such that you can make some progress with this. Whilst it is a little down the priority list, it is still a problem for me as well and something I would ideally like to get sorted out one day so i'd be interested to hear how you get on. I never thought about…
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Thanks Becky, much appreciated. I guess i'll find out soon enough - thankfully there is a break for the weekend!
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Hi Becky, It was confirmed today that I need to have IVIG. My consultant said it would be administered over 4 consecutive days - is that similar to what you had? It sounds more intensive that what I had imagined. Many thanks, Greg
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Hi everyone, Has anyone come across problems with histiocytes after transplant. My consultant told me today that the more detailed bone marrow biopsy showed an unusually high volume of histiocytes in my marrow. This is likely what is causing my poor blood counts and the stem cell top-up has been put on hold while I have a…
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Hi Becky, That's great - really pleased it went well and hope it does its job to keep those bugs at bay! I think I will get to hear next week if I have to have this so really good to hear that you found it ok. Many thanks, Greg
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Hi TJM, I don't know about FLAG Ida and haven't been in critical care, but I have had two transplants and know quite a lot about anxiety. I don't think there is anything I can say to magically take it away, but please rest assured that what you are feeling is 100% normal and there are loads of examples of people on this…
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Thanks Hayley, thanks Steve, as always you are spot on. So much of this battle is in the head - there really is no alternative from thinking positively and there is so much that I have to be thankful for. I think I am the sort of person who doesn't like surprises - you would think by now that I would have learned that I…
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Hi Becky, I was told today that I will need this to help get me through winter. My consultant made it sound easy-peasy and that I shouldn't expect any adverse side-effects and that it was a simple outpatient procedure. I'll update the post as and when I have it, if it is still useful to you at that point. Cheers, Greg
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Hi Hayley, Thanks for your note and hope you had a good holiday! A quick update from me - the results from my bone marrow biopsy still show no signs of the myeloma returning, for which I am incredibly grateful. My counts, however, are continuing their merry slide into the abyss and plans for the stem cell top-up are…
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Thanks Steve, very much appreciated. I am really hoping the top-up will do the trick and get me back on track. Not sure if congratulations is the right word for your anniversary but milestones such as yours certainly need to be acknowledged and for someone like me who still feels deep in the process, it is always great to…
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Thanks Hayley (and others) for your kind words of support. I had the meeting with my consultant today. He has booked me in for another biopsy next week - he doesn't believe that my low blood counts mean that the myeloma is back but this is the best way to be sure. He thinks it is more likely that my stem cells are…
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Hi Hayley, the last time I spoke with my consultant which was 2 weeks ago, the distinct impression I got was "we don't know". Tests have been run for certain defiencies like folic acid and vitamin B12 but they came back ok - I have had this adenovirus kicking around for the last few months and it "could" be that. My lead…
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Hi Rob, many thanks for your note. I am not on Septrin. I have been on cyclosporine, pencillin-V, aciclovir, posaconazole, ranitidine and calcium tablets for over 6 months now - could it be caused by one of those? I have also just been switched to ciprofloxacin because the neutrophils went below 1. I haven't had any…
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Thanks Hayley and Steve, I have had adenovirus in my blood for 4 months out of the last 5 (it briefly went away but then came back). I was told it was mostly low level and there was no treatment for it. I had EBV around Day 100 but a course of rituximab sorted that out pretty quickly. I have been on cyclosporine for over 6…
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I will add my two-penneth. Infertility was made clear to me as well before the transplant, but with 3 kids already, it wasn't an issue for me. The drop in libido has been dramatic though. Mine stayed pretty strong all the way through chemo and after the auto last year, but has completely disappeared after the allo - it is…
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Hi Elmambo, don't worry, your comment didn't come across as flippant at all. I don't know your disease and my situation going into the tandem auto/allo was different to yours, but I empathise with the general panic / worry / stress about cancer generally and its treatments, and specifically transplants. I had a mental…
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Hi Elena, don't worry about the gvhd - I had it pretty bad but it is different for everyone. At the moment, we are still not sure if my recent problems are chronic gvhd or not because my bloods came back showing I have adenovirus which might be causing the problems. It is just a wait and see and fingers crossed situation…
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Many thanks Hayley and Steve, it is so great to get advice from both of you given all your experience. I was at the hospital today and for the time being, the plan is just to monitor things and see how they develop - given the nature of acute and chronic phases, the doctor said it is obvious when someone has acute gut…
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Hi Elmambo, I hope my post is helpful as I think I did a tandem transplant, although my doctors never called it that. I had an autologous SCT in October 2015, followed by an allogeneic SCT 3 months later (early Feb this year). I have myeloma and the reason for doing it this way was to get rid of as much of the myeloma…
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Hi Steve, thanks very much for your message and kind wishes. The worst thing about the acute gut GVHD was the length of time I had to spend in hospital and the fact I lost 25% of my body weight. That has left me physically much weaker than I was before, but things have stabilised in the last month which was why I am…
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Hi Donna, it sounds like the gut problems may have sorted themselves out now which is fantastic, but I'd be happy to share my experiences if it is useful at a later date. I am 150 days post-transplant and had acute gut GVHD at Day 50. I am now beginning to experience the first signs of what might be chronic gut GVHD so it…