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RobA
Comments
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Hi LauLau, In regard to shingles, have you mentioned this to yiour transplant team? Maybe low dose Aciclovir is an option until you can have the vaccine. I developed shingles on my face 26 months after transplant - not a pleasant experience. I was advised to take Aciclovir for a year afterwards to prevent a recurrence. Rob.
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Hi Jane, did you have a lot of blood transfusions during your treatment? I have transfusion induced haemachromotosis as a result of the regular red blood cell transfusions I needed after relapse (I was having at least 4 units a week). My ferritin levels are elevated, 2,800 at last reading. I have been having fortnightly…
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Hi Peter, Thanks for your post. It sounds like my shingles was mild in comparison then! My itching has now completely resolved. I just have a few patches on my face where I have a little numbness, almost like a local anaesthetic wearing off. I guess at around 3 months this is quite normal; as you say my nerves are…
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Hello all, Just an update on this. I contacted my transplant centre today in regard to Covid-19 and mentioned to my Nurse Transplant Coordinator that I had shingles before Christmas. She asked if I was still taking Aciclovir as this was recommended for a year (200mg 3 times a day) after developing shingles. Unfortunately…
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Hi Trudi, I had RSV twice within the space of three months in my first year post transplant. The second time round was crippling. I didn't get a temperature but was just exhausted and had a persistent cough and cold like symptoms. I had returned to work at this point and I remember the kindly HR lady sending me home saying…
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Thanks for the reply Hayley - it was very reassuring. Things are improving slowly. My eye is less sensitive but I need to wear sunglasses at work when I get a flare which has caused a few odd looks. My skjn is also settling down but i still have moments where I just need to scratch. I just need to be patient and as you say…
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Hi Steve, Happy New Year. Thanks for the reply. The rash has now gone but I am left with some lingering after effects. My skin has been desperately itchy, my eye is watery and light sensitive and my mouth is very sore but without any visible ulcers or inflammation. Apparently shingles affects the nerves and my symptoms are…
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Hi Steve, the MRI didn't identify any mechanical issues for the pain although the imagery wasn't that clear as I kept nodding off in the scanner :-). However there has been a significant improvement in terms of increased strength and mobility and reduced pain. With the doctor's permission I decided I would try swimming…
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There was a previous thread on this subject. https://www.anthonynolan.org/patients-and-families/anthony-nolan-patients-families-forum#/discussion/404/travel-insurance A friend of mine in remission from lymphoma tried InsureWith after being quoted £800 for travel insurance for a Caribbean cruise. He was asked a lot of…
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Hi Tallgal, I had a similar experience to your mum. I was diagnosed with MDS in 2014 which was thought to be caused by chemotherapy I had for AML in 2011. I had a sibling RIC transplant in May 2015. Everything seemed to be going well until I got the devastating news in December 2016 that I had relapsed. DLI was tried as…
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Thanks for the reply Hayley. I haven't suffered with any noticeable GvHD post transplant or taken any steroids so I guess there must be something else causing the restricted mobility and joint pain. I have had a MRI scan now - hopefully the results will shed some light on what is causing the problem. Regards, Rob.
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Hi Sue and Steve, I sent my donor a card shortly after my transplant and then to say thanks again at my 1 year anniversary. I did get a very nice response to my second card and I am looking forward to being able to share my personal details with my donor at the 2 year mark. My donor was a young Greek woman in her mid-20's.…
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Hi Jane, that is fantastic news. I am really pleased that things are looking up for you. I'm sure the cough will clear eventually (mine took 4 months :-() but I know this is really draining physically and mentally. Hang in there. We look forward to your next post. Regards, Rob.
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Hi Jane, I'm really glad to read your post but sorry to hear that you are struggling. It is still early days in terms of your recovery and you have been through an enormous ordeal both physically and mentally. It sounds like you are doing all the right things - just try and give it time. I have just passed the year mark…
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Hello Gem, I have a similar history to yours. I was diagnosed with AML in 2011, I achieved remission but a routine blood test in 2014 identified a low neutrophil count and after further investigations I was diagnosed with MDS which my doctors thought was chemo related. I had a sibling SCT in May 2015. All then went well…
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Hi, I'm about 10 months post transplant now and I have experienced changes in bowel habits post transplant which are not GvHD. I am a lot more frequent and looser (but not diarrhoea) than before. I also find that I have limited bowel control and when I get the sensation that I need to go I need to go!! I also find that…
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Good to hear that the transplant has gone well. Keep up the fight Jane. Wishing you all the best with your recovery, Rob.
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Hi Christine, I'm glad to hear that Bob is making good progress. I hope that the second dose of DLI will kick-start the graft vs leukaemia effect. I don't want to tempt fate but I have been cough free for about a month now much to the relief of family, friends and work colleagues. I think the lovely weather has been a help…
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Hi John, I have a similar story to yours. I developed MDS in 2014 after successful treatment for AML. It was a real bolt from the blue as I felt really fit and well at the time. I had a stem cell transplant in 2015 with my brother as donor. Unfortunately in December 2016 I found out I had relapsed. DLIs were tried as a…
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Hi Christine, thanks for your mail. It is frustrating and a little bit worrying as both of my previous bouts of blood cancer were preceded by a cough which wouldn't clear up.i had a blood test last week which showed all my counts were fine but at the back of my mind there is still a worry that this could be a sign of…
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Hi Jane, sorry for not posting sooner. I hope things are good with you and that your treatment will be a success. I'm approaching 9 months post-transplant now. Things are going pretty well apart from picking up repeated viral infections over the past three months. I am currently recovering from another bout of RSV, four…
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Hi Jane, I only had the standard reduced intensity conditioning prior to my second transplant so our experiences won't be directly comparable. I think as you say you need to listen to the experts - they want to give you the best chance of a permanent cure. I fully understand that there is a lot to worry about though. You…
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Thanks for the reply Hayley. It is reassuring to know it's not just me but still rather frustrating. The swabs taken at my last clinic session tested positive for RSV and so I am being treated with Ribavirin and immunoglobin. I'm still coughing and feeling very tired though. Like I say frustrating but in the grand scheme…
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Hi Meerkat, thanks for the reply, although not great to hear that this could become a regular occurence
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Thanks for the reply Steve. It looks like Spring will finally be here in the next couple of days; hopefully that puts an end to virus season. It was lovely to feel the warmth of the sun on Saturday (with Factor 50 applied of course). I had forgotten what that felt like!
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Hi Greg, thanks for the reply. Low immunoglobulin has not been mentioned before but the transplant nurse specialist did mention a dose of immunoglobulin if the infections persisted. I understand it has been a pretty bad winter for viral infections generally so maybe I've just been unlucky. Having 3 children at home doesn't…
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No problem Jane, I fully understand where you are coming from unfortunately. My mouth problems stemmed from being neutropenic pre-transplant rather than GvHD post-transplant.. In terms of your decision presumably if you are in remission at the moment then you would just need the conditioning chemotherapy…
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Hi Jane, my circumstances were slightly different. At the time of diagnosis the NHS had withdrawn funding for 2nd transplants although I had private healthcare which would have covered this. My medical team however felt that DLI offered a better chance of success and at less risk. Unfortunately DLI didn't work for me and…
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Hi Christine, that all sounds encouraging. Fingers crossed the DLI works. I was 18 months post transplant when I relapsed but it took me a long time to reach 100% chimerism (12 months) and I had residual disease up until this point. At the point of diagnosis the NHS weren't funding second transplants but I do have very…
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Hi Christine, I'm really sorry to hear about your son's relapse. It must be a desperately worrying time for you all. The FLAGIda regime was tough to endure but hopefully your son is now through the worst of it. I remember that my medical team were convinced that there would be very limited neutrophil recovery post…