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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 Gem, Really sorry to read about your current problems. I had gut GvHD problems from around Day 50. Steroids and budesonide didn’t do much for me and I had to have mesenchymal stem cells to sort things out. It was a tough period as I had to go nil by mouth with TPN for about a month. Things sorted themselves out after…
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Hi Krista, I am so sorry to read your news. Your partner has been through so much already, the news must be so hard to take. I know nothing about PTLD and so all I can say is that I am sending you and your partner loads of strength for the next 8-12 weeks. I am in awe of what you have done already and so I’m sending you…
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Hi Krista, It is good to hear from you although I am really sorry to read of your partner’s ongoing problems. It is really great that the GvHD is under control, that is a massive positive, and you/he should cling to that in hope for the future. In terms of EBV, hopefully another blast of rituxin will do the job. Is that…
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Hi Dannii, Just wanted to add please don’t be frightened that you may kill him. You are actually trying to save him. That is the most special thing you can ever do. My brother was my donor and there is absolutely no way I would have wanted that thought to enter his head. He is my hero, and I’m sure your brother will be…
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Mandy, I am so sorry to read your news and my sincerest condolences to you and your family. Through the past 18 months I feel like I came to know Sean a tiny little bit through you. He was incredibly brave to go through everything he went through and I could see how much support and love you had for him. It absolutely…
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Hi Krista, I am so sad to read that your boyfriend is still in hospital. 47 nights was enough for me but at pushing 60 he is one tough cookie. I would take great comfort that he is putting some weight back on and that he is taking on board small food stuffs - this is a step in the right direction, no matter how small. I…
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Hi Masojp, I am really sorry to read your news. Having got myeloma and had a very similar treatment plan to you, your post struck a nerve. I was wondering if you have tried Myeloma UK? You might have more chance of finding someone in your position with that site being dedicated to myeloma? I am really hoping that the…
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Hi Polly, I was wondering if you have tried Myeloma UK? They may have some information regarding current myeloma trials. I went straight in to the transplant process as I was relatively young for myeloma on diagnosis (36) and it was thought to be the best chance for a long term remission, but I can understand your desire…
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Hi Mariana, I am so so sorry to read your news and my deepest condolences to you and your family. What you are feeling now must be completely awful. The transplant process can be very risky and you must not blame yourself in any way whatsoever. My brother was my donor and if I hadn’t have made it, there is absolutely no…
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Hi Krista, Just wanted to extend a huge hug to you and your boyfriend. As Tony says, gut GvHD was the absolute worst part of the whole process for me. I went back in for 47 nights from Day 53 to Day 100, with TPN for 30 days. I found it a very difficult time. My advice would be to ask your medical team about mesenchymal…
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Hi Cellbydate, I’m really pleased to read that you have had a good chat with the medical team. I’m really hoping that this is a turning point and gives you a way forward. I’m really hoping that things go well and I’ll be thinking of you. Greg
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Hi Cellbydate, I am so so sorry to read your news. I have zero experience of your situation so I don’t think I can help in any way. I have come across people who have had FLG IDA and they have had success on it and so I really, really hope that you will find the same too. My heart goes out to you at what must be an…
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Hi Cellbydate, I am really sorry to read your update. I am really hoping that the BMB shows up ok and that there is nothing sinister going on. I realise this must be an incredibly stressful time. I hope that you get some breaks from the racing mind. Please keep us updated. Sending you lots of warm thoughts, Greg
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Hi Cellbydate, I think the uncertainty is the worst thing about this whole process. You sound a bit like me in that I was trying to control everything. I needed to know what was going to happen so that I could plan for it. That puts a lot of strain on the mind because this process doesn’t give easy answers. It got to the…
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Hi Cellbydate, Just wanted to give you some reassurance that my counts were falling around this time post transplant - in fact my first post on this site 2 years ago was “Declining blood counts around Day 200”. I definitely understand that it is a worrying time but just wanted you to know it took almost 8 months before my…
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Hi Gail, I don’t really have any experience of what you are experiencing, the best I can say is that it was only around this time post transplant that things started improving for me. Like you, my medical team had no idea why my counts were so low for so long. I think you are right to wait for the results of all the tests…
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Hi Katy, I think it is going to take time. There are so many variables related to how quickly a person feels back to “normal”. It is still early days for you so I would just look after yourself and take things one day at a time. It is true that a lot of people find that at your stage is when things get psychologically…
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Hi Rob, What you describe is pretty similar to my experience. I am 2 years post transplant and have a fairly regular frequency of viral infection. Has your medical team checked your immunoglobulin levels? Mine are still below the normal range and I had regular top ups for quite a while after transplant which I think…
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Hi David, I am so sorry to read your post and so sorry for what you, your Dad and your family have had to go through. I admire your Dad’s bravery in throwing everything at it that he could. As to writing about experiences, that is something I do too. I think it is very therapeutic. I don’t know if this is the right forum…
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Hi Lindsaylou, I suspect the answer is probably a logistical one. My hospital told me they needed at least 4 weeks to organise everything when I decided to go ahead. It may be possible to do it more quickly in emergencies. I am guessing some time is needed to plan medications, get cells from donors, organise room…
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Hi Shell, Welcome to the forum although sorry for the reason you had to post. I have myeloma and would be very happy to answer any questions you might have about SCT’s in that context. The SCT process can be long and tough, but the medical teams are getting better at them all the time, and SCT’s are known to give good…
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Hi cellbydate, Welcome to the forum, although sorry for the reason you had to post. Ah, the dreaded blood cell counts and the awful anxiety that comes with their analysis. I have definitely been there so I know what it feels like, and I also know that how ever many times I say to not worry about them, it is only natural…
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Hi Lindsaylou, I am the patient so I can’t really give you the relatives perspective, but I remember the first few weeks being a complete whirlwind. There might be shock, anxiety, grief, all sorts of emotions at play. I think it is important to look after yourself as your husband will need you to be well to support him.…
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Hi Meldidd, Welcome to the site. I think you are doing such a great thing for your friend. Your question is a hard one to answer as I have learned that the post transplant period can be really unique to the individual. What I would say is the first 100 days are often the hardest. Many people say it can be like a…
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Hi Rachel, Sorry to hear that you have got a reactivation of EBV and that you are back on the treatment treadmill. I had EBV reactivation around Day 100 post-transplant. I was already an inpatient due to some complications with GvHD, so I must admit that the EBV reactivation didn't really touch the sides so to speak. I was…
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Hi Gail, I don’t think my situation was the same as yours but I just wanted to let you know that I struggled with low haemoglobin until about 8 months post-transplant (although I had low platelets and WBC too). The consultant was not sure why and put it down to my body just taking time to sort itself out (I also had quite…
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Hi Cath, Just wanted to add my support to what others have said. I suppose if your husband is newly diagnosed, you are likely to be in shock, so I would encourage you to take your time and find out as much as you need to about the specific disease, treatment options, etc. In my experience, statistics are useful to give you…
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Hi Kitty, Really sorry to hear about your husband. I had pretty bad gut GvHD and it was by far the worst of the whole process for me so I really feel for you. Steroids should definitely help (though watch out for moods - I was on a very high dose and I had very high and very low moments). It can be a long road. I had…
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Hi Alison, I couldn’t remember how far along your husband was? I remember my counts, first platelets then all of them, steadily declining from around 100 days all the way to 200 days. In the end, we didn’t really know what caused them to fall although persistent infection was cited as a potential reason. I was always told…
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Hi Mandy, Really sorry to hear your news. I don’t have experience similar to your brother’s. My counts were consistently low and only started improving from the 20s around 8 months post-transplant. What I was told by the doctors was to try to ignore the one-off results as they can be affected by a lot of things - what was…