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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi Ray and welcome the the forum. I'm one of the online community champions here and had a stem cell transplant in 2013 for ALL. Thank you for sharing your experience. It sounds like you've had quite a journey and still have some way to go. You are still quite early in the recovery process at around 6 months post…
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Hi Audrey, thanks for the update on your daughter. Your daughter sounds very much like me after my transplant. I had no appetite for a really long time and it made me really weak.. I'd spent so long in bed that I lost the muscle and strength in my legs, and my lack of appetite made things worse as I was not getting enough…
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HI Beaglegirl, it's good to get an update from you. I know it's probably hard to feel positive but to me, the good thing is that your husband has been put back into remission which sounds like a good starting point. Hopefully he can stay that way and the second transplant will keep him that way. I know your husbands case…
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Hi JPW, welcome to the forum. I'm Steve, one of the online communicty champions. I had a transplant for ALL in 2013 at the age of 46. I've been around the forum for a few years now and thought I remembered a thread from somebody your partners age so I did a search and found the thread in the link below. This is an old…
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Hi Scottish, welcome to the forum. I'm Steve and one of the online community champions here. I had a stem cell transplant in 2013. In my case it was carried out in Leicester. I'm presuming from your name that you're referring to the Queen Elizabeth hospital in Glasgow? There was someone a while back that I remember was due…
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Hi Audrey, If it's any comfort I went through a phase of passing out and real weakness. I couldn't even stand long enough to get weighed without collapsing and I passed out on two occasions whilst I was having chest x-rays, even whilst I was sat in a chair one time. I had various tests including MRI's EGC's and numerous…
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Hi Audrey, thanks for the update. That's good news that her Neutrophils are starting to climb and hopefully that means her body can start to fight back on its own though it will need some help from medication for a while. I can relate to the problems eating and keeping anything down. It's something I went through too and…
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Hi Michelle, I totally understand where you're coming from with the 'new me' feelings. I've heard it a few times being referred to as the new normal and I've gone through it myself. It's a case of getting used to your new limitations. We have been through so much during our transplants we are not the same. For me I'm not a…
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Hi Michelleanne, I'm Steve, one of the online community champions here and had a transplant for ALL in 2013. I'm glad you've found the forum and that it it hopefully helping you. I think it's difficult for those around us, or who have not gone through what we have, to understand how it feels to have a transplant and what…
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Hi Audrey, I'm so sorry to hear about your son and send my deepest condolences. I'm sure on top of everything you are going through with your daughter that must be devastating. I can't begin to imagine how you feel and hope you have lots of support around you to help you through this difficult time. Regarding your…
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Hi Babs. I haven't heard BK Virus mentioned before and it's not something I remember experiencing myself when I had my transplant. From what I've read it looks like it is common in most people but in a healthy person they have anti-bodies to fight the virus and keep it at bay. As your daughters immune system will be…
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Hi there. I'm sorry to hear about your sons situation which does sound desperate. I haven't heard of Jakavi before so I did a quick google. It sounds like Jakavi is maybe a brand name (?) and its main ingredient is Ruxolitinib Phosphate. I have certainly heard of Ruxolitinib and there are several patients here on the forum…
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Hi Auds21. I'm not sure I can offer any assurance that will help directly, but what I can say is that when I went into my transplant I didn't feel at all ready. I was so weak and sick I didn't want it to go ahead and almost asked them not to proceed until I felt better. The reality was that I probably wouldn't have got any…
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Hi Alison, I can't give you any advice on counts I'm afraid. All I would say is that I never paid any attention to my blood results and never tracked anything other than my neutrophils once I'd had my transplant. To me that was the only thing that was important, the rest I left to the doctors. If I needed a transfusion of…
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Hi Malkyboy, welcome to the forum. I think the only people who could answer your question would be your medical team as they will be aware of the status of your immune system and therefore the risk to you. This will be dependent on the treatment you've had to date and any immunosupression you may have had. Assuming you've…
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Hi Suzi and welcome to the forum. I'm one of the online community champions here and had a stem cell transplant for ALL in 2013. In fact it's coming up to my 10th anniversary of being diagnosed and thankfully I feel much like everything I went through never happened. I was 46 at the time of my transplant so quite a bit…
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Hi Pauline, I'm glad that the transplant is going aheadand can understand the trepidation that he and you will now be feeling. In terms of what will happen, after the final conditioning therapy the transplant itself will feel like something of an anti-climax and will feel pysically similar to a regular blood transfusion,…
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Colin, thank you so much for posting this and I hope it helps give Alison some hope. Fear of relapse is something that is in the back of my mind every day, even almost 10 years after my transplant. I'd find the prospect of going throug atransplant a second time a daunting prospect, particularly when you know what to…
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Hi Popcorn28. It's a long time since I had my transplant and mine was in Leicester so I can't give you any experience of Manchester, but my advice would be to speak to your husbands medical team and ask them to clarify. Precautions may differ from one unit to another, particularly with the current climate around Covid.…
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Hi Beaglegirl, There's probably nothing I can say that will help you feel any better as it does sound like you are going through some very difficult times and it is hard to come to terms with what might happen. It sounds to me like you need to speak to someone directly who can hopefully provide you with more support than…
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Hi Jennie, The Hickman lines do take a bit of getting used to but they make things a lot more convenient as far as getting blood samples and administering medication. After 3 months of needles and cannulas my veins were virtually non existent so I had a PICC (Peripherally Inserted Central Catheter) line in my arm which…
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Hi Otterfield and welcome to the forum. Like Michelle I'm an online community champion and had a stem cell transplant back in 2013 for Acute Lymphoblastic Leukaemia. I'm now fully recovered and back to a normal life without any lasting major side effects. STC's are used to treat various conditions and I guess the preceding…
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Hi Helen, I'm glad you've found the forum useful. I'm one of the community champions here and had a transplant in 2013 for ALL. Like you I had GvHD which affected my skin. I didnt have any issues anywhere else thankfully. You have my sympathies regarding the dry skin as I had that for several months, but the GvHD was…
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HI Auds21. I'm sorry to hear of your daughters graft failure and can appreciate how worrying it is for you. I hope you'll find some support here on the forum as there are many here who have experience of your daughters situation. Graft failure is more common than you might imagine and it does happen, so your daughter is…
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Hi BL8, I'm Steve and like Michelle am an online community champion and had a stem cell transplant in January 2013. I had sickness and diahorrhea which kicked in a few days after the transplant as a side effect of the final chemotherapy before my transplant. That lasted probably about a week at its worst but I continued to…
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Hi Beaglegirl, I'm sorry to hear your news. I can't help you with any advice regarding the source of the Leukaemia unfortunately and I'd be nervous about taking diagnosis suggestions from Facebook or Google, hence why I wouldn't try and suggest how it has arisen myself. For me, the best source of information would be your…
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Hi Dave, I'm Steve, one of the online community champions here on the forum and had a transplant for ALL in 2013. I can relate to what you're describing and I think most transplant patients will. The effect of a transplant is long lasting and takes an inordinate amount of time to recover from. My transplant floored me too…
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Hi Rich, I don't know about anyone else's experiences but I didn't have any issues when I had my childhood vaccinations. I don't even remember having a sore arm at any point. I wonder whether, even despite all that we've been through we still have any immunity from the original vaccinations and that they are given as a…
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Hi Beaglegirl, I don't know what the statistics are for the success of treatment and transplants for a relapse so late after a first transplant, but statitistics probably do exist. Having said that I try not to take any notice of statistics as everyone is unique. I guess the phrase in the letter is no different to what the…
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Hi Manders, you may want to check the requirement for the MMR vaccination with your hubbys medical team as transplant patients don't normally have live vaccines. I've just checked my vaccination records and I didn't have the MMR as part of my re-vaccination. I was given a vaccination sheet by my consultant which is what my…