Please read the house rules and keep this community safe for yourself and others.
greg777
Diagnosed with myeloma in March 2015. Auto-transplant in Oct 2015 followed by allo in Feb 2016.
Comments
-
Hi Jackie, Welcome to the forum although sorry for the reason you had to post. I have a different cancer (myeloma) but just wanted to say I have had 2 transplants (an auto and an allo) and I am glad that I did (I too was given options that were not great). You don’t say what age your husband is (I was 36) and your husband…
-
Hi Steve, I was trying to make Partner in a professional services firm and had 3 children aged 8, 6 and 2 when I was diagnosed, so yes stress and fatigue must have had a part to play somewhere along the way. I have resigned myself to never really knowing though because there are loads of people who are stressed and…
-
Hi Moirplace, I am really sorry that you are going through what you are going through. Just wanted to say that I had a similar experience after my transplant. Mine was in Feb last year and at around this time last year, we started planning for a stem cell top up from the same donor as my counts were really struggling. I…
-
Hi Kitty, I had acute GvHD of the skin, liver and gut, the latter was by far the worst - as Tony says the experience was the absolute worst of the whole process. I was re-admitted around Day 50 and spent 7 weeks in hospital. Steroids didn't work, I had TPN for 4 weeks. I lost a ridiculous amount of weight. The doctors told…
-
Hi Rachel, I completely recognise this. My transplant was similar time to you. I started a post a while back about mental health post-transplant. I don't feel like i am the same person mentally. Anxiety is ridiculous and I too have very little tolerance for stress. However, I think it is getting better with time - maybe…
-
Hi Jane, I am really very sorry to read your news and as Steve says I really hope that the treatment you start on Monday gets things kicked into shape. Anything we can help with on this forum, we are here. I knew someone who had your treatment for AML relapse. He found it tough and it didn't work for him. But everyone is…
-
Hi Loobs, It probably is - I get around! I must say this site has been brilliant for me because of the wealth of experience in donor SCTs. The myeloma site is great for myeloma specific matters but as I said in earlier post, I have found the number of donor SCTs in myeloma to not be very many, so it's sometimes hard to…
-
Hi Jane, Really sorry to read your update, I imagine it must be a very unsettling time. I am sending you lots of positive thoughts that this is just a blip and those neutrophils will start rising soon. I had a problem with falling neutrophils but it was around 6 months post transplant. They did recover - I'm hoping the…
-
Hi Loobs, I have myeloma. I was told that donor transplants in myeloma are rare but are done in specific situations (mine because I was considered young to get myeloma - 36). I would talk it through with your medical team - there are some great myeloma specialists in this country. I think it all boils down to benefit…
-
Hi Wen, Really interesting topic, thanks for raising it. I had a transplant from my brother. I think I get what you mean re: pressure within a family, it must be horrible to think you almost have to justify your existence because of a family member. But I really hope that your family will slowly come to understand that…
-
Fantastic Mandy, brilliant news! It is always great to hear good news stories! Wishing you the very best, Greg
-
Hi Allmount, I think it could be how long is a piece of string. I think it can vary. Indeed, i am 18 months post-transplant and not sure if I am. I wasn't at 12 months and I stopped asking after then. I think it is a good sign but I am living proof you don't need to get to 100% to be functional. Wishing you all the very…
-
Hi Jane, I think this is such a difficult and personal question. I have been thinking about it quite a lot as I know my cancer will return at some point in the future. First time around I was completely open, but I have my doubts about second time round as I've seen the damage it can do. I think I would maybe wait until I…
-
Hi Gail, I had those 3 drugs as conditioning. I had it as an outpatient so it wasn't so bad for me. Bad, but short term, sickness on Melphalan, sleepiness with Campath and to be honest I can't remember any effects of fludarabine. It wasn't as bad as I was expecting but I think I was pretty lucky with the transplant itself.…
-
Hi Hayley, Thanks very much for your post. As ever your words are full of wisdom. I think I just need to give myself time to iron things out in my head. Like you said, I really hope anyone out there reading this and feeling in any way similar looks into the options that are out there or just feels more confident to talk…
-
Hi Steve, Thanks for getting back to me, it was really interesting to get your perspective on things. I definitely agree that emotions go all over the place after a transplant. I am just a bit muddled about how much of this is to be expected given the disease and the treatment or whether it is actually a side effect of the…
-
Hi Gail, I completely recognise this. My job is to analyse complex data to work out solutions and so I thought I could apply the same thought process to cancer. It is great that you have that desire to learn and understand and I definitely would encourage it as you are your own best advocate. One thing I have learned…
-
Hi Mandy, Glad to hear that your brother is doing really well. Reducing cyclosporine around this time is fairly normal I think. You might hear doctors referring to acute and chronic GvHD - I think the difference between the two is whether it happens pre or post 100 days although I think the split is quite arbitrary. Acute…
-
Hi Mrsb, I am not sure there is any "normal" in an SCT process. However, it's great news that you are having a good time of it and you should definitely celebrate that. It is still likely to be a long road ahead and as many people say it can be like a rollercoaster with lots of ups and downs, so please continue to take it…
-
Hi Had0171, I was in the slightly unusual position that I chose to have my transplant and the hospital said they needed about a month's notice to arrange it, so around about now should be the time things get sorted out. I had all my tests about 2 weeks before admission, the same for my brother who was my donor. Hope this…
-
Hi James, This is an awesome achievement, an amazing milestone that you should celebrate fully, a story of hope to many who read this forum I am sure. Your age at diagnosis and the age of your children are very similar to mine, so your story struck a chord and is a dream of mine that I hope turns into reality. I wish you…
-
Hi Nichola, Hope you are feeling better today. Sorry I can't add anything re:MMR jabs, I am only 16 months post transplant so not had mine yet. Just wanted to say your post made me chuckle. When I had my first lot of jabs a few months ago, I caused all sorts of confusion at the GP when I turned up for my "childhood…
-
Hi Mandy, Really pleased to hear the update about your brother - long may it continue! Re: getting out and about again, probably best to check with your brother's medical team to get a view on your brother's specific position. For me, since transplant I took a common sense approach (and still do!). I had poor blood counts…
-
Hi Mandy, I think you can only trust your doctors on this. My cyclosporine was reduced quickly after transplant as they were trying to get me on a trial and around Day 50 I ended up with bad acute GvHD which they think was possibly not helped by the quick reduction in cyclosporine. Post-transplant, everything is like…
-
Hi Kate, Really pleased you have a way forward -go for it! Please keep us updated as to how you get on, and any questions at all, please ask away! All the best, Greg
-
Hi Kate, I am not sure how relevant my experience will be to you, but here is a bit of background. I have myeloma, and the standard of treatment is an auto. However, because I was relatively young to get it and because it is incurable, I was given the choice to do an allo to try to give me as long a remission as possible.…
-
Hi Kate, I don't have any experience with APML but I do recognise a lot of what you say from an emotional perspective. I too was given a choice between auto and allo and I also felt well before the transplant so it was a very difficult time deciding what to do. I ended up having both (a tandem transplant). In my…
-
Sorry my post didn't end properly - I meant to say it is probably the disease type which dictates whether it will come back or not, rather than whether you are 100% your donors cells or not. Greg
-
Hi Jane, I don't think the chimerism has anything to do with the disease unfortunately - it just means you are fully your donors cells now. The theory being your donors cells should now be able to fight the diseased cells (I think cells go wonky all the time but your immune system should sort it out but when you get cancer…
-
Hi Jane, I am 38 and 15 months post transplant and my energy levels are not the same as they were pre-transplant so maybe it is just one of those things that happens - our bodies have been through a **** of a lot after all. As to people asking if you are back to normal, I think it is because they worry and in a way want to…