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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi Rob, I think this winter has been a bad one for flu infections going around. I've had it myself since before Christmas and even now I've got a cold of sorts and am coughing some not too pleasant stuff up most mornings. Working in an office full of people coughing and sneezing probably hasn't helped, but at 5 years post…
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Hi Lindsay Lou, Thanks for the update and I'm sorry to hear that you and Darrel didn't get to go away as you'd hoped. I can imagine how disappointed you both probably are but the main thing now is to concentrate on forging ahead with the treatment and getting his illness under control. Please keep us updated as things…
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Hi Christine, thanks for your updates. At this stage it's so easy to pick up a bug and it's sometimes difficult to avoid them, particularly if those close to the patient are affected. I think the main thing is that these things get dealt with quickly and whilst it can be perturbing at the time it should hopefully only be…
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Hi Katty, I'm sorry to hear that the response hasn't continued, but unfortunately it does happen sometimes. You will see that there are quite a few threads on here with people in a similar situation who are also progressing towards either a second transplant or a stem cell top up. Hopefully your son is still in remission…
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Hi David, welcome to the forum and thank you for posting. I'm so sorry to hear about your dad and that he didn't make it after all he'd been through. I'm glad the forum has been useful to you and hopefully reading through some of the posts on here will show that many of us share the same experiences your dad will have gone…
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That's good news Christine, thanks for the update. Good luck with the bone marrow biopsy and lets hope that allows him to progress to the next stage. Steve
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Hi Lindsay, This is a difficult one as it would probably do him some good to get a break somewhere quiet, hopefully between treatments, but it may not work out that way. I guess it depends what treatments he is having at the moment as I guess he would be having some chemotherapy irrespective of plans to proceed with…
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Hi again and thanks for the update. It's good to hear he's feeling better and that he's getting out and about a bit. I'd urge some caution with that and suggest he needs to be careful out in public. I know in some cases it's a necessary evil, but particularly at this time of year there are some nasty bugs about and his…
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Hi Gail, That's great news and encouraging for anyone going through the same thing. Hopefully your counts will continue their progress and return to normal levels soon. My blood group also changed as a result of my transplant, though without the complications you've had it was much earlier. Together with the 100% chimerism…
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Hi there, The analogy of three steps forward and two back is very true, and is probably something we can all relate to. Early days in recovery from a transplant is a bit of a rollercoaster ride, with ups and downs, good days and bad. This is because your friends system is still unstable and takes a while to establish and…
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Hi there and welcome to the forum. As Greg says you're at that early stage in your transplant where things can and often do fluctuate and we have seen several posts on here with patients concerned about drops in their counts. Your system is in its infancy at this stage and very fragile and often it is something like a…
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Hi Lindsaylou, welcome to the forum, though I’m sorry to hear of your hubbys diagnosis. I’m one of the online community champions and had a transplant myself for ALL five years ago. It’s a great idea to have some family photos in the room while he’s in isolation, I know I did and it helped me remember what I was fighting…
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Hi Katty, That is great news, hopefully you can watch those counts increase, but bear in mind it will be slowly and try not to get too alarmed if they drop off as he recovers as it can happen. It's great news that he's back to fry ups too as that will help him get some strength back and maintain some weight. Sending best…
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Hi Katty, It can vary as to how long engraftment can take as we are all different and I guess if your son has had an infection that may have delayed things a little. I understand how worrying it will be for you but try and take the lead from your sons consultants if they are still confident at this stage. I hope his counts…
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Hi Mandy, all the best for the next round of treatment, I hope it goes smoothly for Sean. I’m sure Christine’s updates regarding her son are giving you some hope that the same can happen for Sean and it’s helping all keep positive. Has he managed to get over the side effects from his last round of treatment ready to face…
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Hi Christine, great news indeed. Fingers crossed for a smooth remainder to the treatment and recovery. Best wishes, Steve
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Hi Melissa, that’s a good question and one we all probably worry about. I guess how quickly you settle back into work depends on the job you do, and whether you can ease yourself gradually into it rather than going back full bore. If you can it may be best to return part time or with lighter hours just to make sure you…
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Hi Christine, that’s great news. I’m so glad to hear the treatment is working and fingers crossed it continues. Getting into remission is a good step along the way and let’s hope the next steps go smoothly. Please keep us updated and as always we are here to support you. Best wishes, Steve
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Hi again Nick, I understand the panic losing your sight must have caused as I had a similar panic part way through my recovery. I woke up one morning and my eyes were in agony and I couldn’t open them due to the pain. When I did struggle to open them everything was completely blurred and I couldn’t see. I couldn’t work out…
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Hi Mandy, There’s a thread going at the moment in 100 days and beyond about second transplants using Azacitidine and DLI which you might find useful. There is a lady called Jane going through the process at the moment and some useful information from other patients that have gone through it. Hopefully the following link…
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Hi Jane, it’s good to hear your update as you’re further down the line than Sean and that will hopefully encourage him. I’m pleased to hear you’re doing well and that you’re ready to start the next round. It sounds like the azacitidine is having the desire effect which is great. Please keep us updated with your progress as…
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Hi Christine, Thanks for the update. It sounds like things are moving in the right direction which must be encouraging for you all. I’m glad to hear that your son is getting his appetite back and gaining some weight. If he can regain some strength and energy it will help him going into the next stage. Please keep the…
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Hi Nick and welcome to the forum, I’m one of the online community champions here. Thank you so much for sharing your story and I’m glad you’ve found the forum interesting reading. It’s a really useful resource to a lot of people and being able to compare notes with others that have the same condition or similar experiences…
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Hi Mandy, Thanks for the update. It’s good that he’s keeping his spirits up and you can see that which will help you stay positive for him. A break will be good for him to recover ready for the next session and fingers crossed he can get that all important remission. Please keep the updates coming. Best wishes to you all,…
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Hi there Cath, From what I can see a stem cell transplant is one of a number of treatment options for Myelofibrosis and of those that are available it is the one that is least used to treat it, possibly because it is such a big undertaking to go through. Those here who have had a transplant, me included, will tell you it…
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Hi Kitty, I was also put on a high dose of steroids (60mg of Prednisolone) when my GvHD first started and it was that which probably started my recovery as it gave me my appetite back and helped me start eating again and gaining weight. That in turn helped me get some energy which allowed me to exercise more and get my…
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Hi George and welcome to the forum. Rachel and me are community champions here and it's good to see new members post about their experiences. It helps other members that are in a similar situation if they can see that someone else has had the experience they might be going through. You're right about the shock that a…
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Hi there Kitty, thanks for the update. I believe one possible side effect of Ciclosporin is that it can affect Kidney function, so I think that’s why the medics want to reduce the levels as soon as they can and get us off it sooner rather than later. GvHD delays the rate that we can be weaned off Ciclosporin and I was on…
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Oh no Alison, I'm so sorry to hear this and there's probably nothing I can say that will make you feel better as this is such devastating news. From what you'd said previously it sounded like the drop in platelets had just been down to the infection around his Hickman line site and that the Leukaemia wasn't the issue, so…
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Hi Alison, I’m sorry to hear that your husbands infection isn’t clearing up as quickly as it should. It sounds to me like getting the clip out is a must and will probably help prevent any further infection or future recurrence. Once that’s done the antibiotics need to do their job and get the infection under control. I…