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giorgissimo
Transplant recipient (March 2014) after relapsing with acute lymphoblastic leukaemia (original diagnosis October 2005) in October 2013. Building strength and blogging at betterfools.wordpress.com – once described as an "expert patient"...
Comments
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Thanks for your sharing your story and experience! I, too, had ALL and am in my 30s, although I was only 23 when I was first diagnosed and only had my stem cell transplant after relapsing in October 2013. I had a similar sort of situation when the conventional chemo everyone was hoping (and expecting, to an extent) to get…
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Hi Tillby, Boo to shingles! Great to hear the leukaemia is undetectable, though :-D I don't remember whether my Hb was affected by the shingles, but I did feel generally unwell and lacked energy, so I wouldn't be surprised to know that it was down. Good luck to your daughter. I found calamine lotion helped a bit with the…
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Catching up on posts on the forum here after a few weeks 'off'! Thank you for sharing, all! I blog (though a bit less frequently now) at http://betterfools.wordpress.com if anyone's interested.
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Sardinia – wow... My wife's Italian and has promised she'll take me one day! Hope things are going okay, jonni? Sorry to hear about shingles etc (that knocked me out earlier this year, too). All the best.
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I'm back off the aciclovir again today, so fingers crossed my immune system's stronger and can keep the zoster virus away by itself this time... Apparently the chance of it returning after coming off the anti-viral meds would reduce with time (as my immune system would be getting stronger), BUT the sooner I come off the…
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Oh – stairs! I never realised how much more effort it is to climb stairs than to walk on flat ground, until my transplant. I felt useless, too, but it's far more important to you and to your husband and children that you rest and recover at the speed you need to – however frustrating that may feel. I've now started making…
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I remember neutrophil numbers going up and down quite a lot in the first weeks after transplant – and having occasional G-CSF injections, which really made them go bonkers. Bugs knocked them back a bit, too. Continued good luck to you both. George
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Good luck, Lola – before you know it that month will have flown by and you'll find out whether it's time to push the 'go' button... Aciclovir has always been a pretty standard med for me, the effectiveness of which I didn't realise until I got shingles two weeks after stopping it! I've now come back off it (today) so…
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Hi Lola, Just wanted to drop you a quick line to wish you luck tomorrow; whatever the outcome, it will of course be the best for you at this moment – although I can understand how frustrating it might be to have built up to something that may not happen after all... I had a couple of 'setbacks' along the road to…
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Great news, Josie! I remember that same feeling of some small relief from the sore mouth and throat – it doesn't sound weird at all. A message to your new bone marrow: KEEP 'EM COMING!
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Oh, Em – sorry to hear about the late hair loss. I had mild skin GvHD for a brief period a few months after my transplant, but by then my hair was growing back and didn't seem to take a hit. Hopefully someone else on here might be able to help better – as a man now with a (what some would say too) full head of hair, I'm…
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It's a great blog, and I love (and wholeheartedly agree with) the paragraph you quoted: "A Stem Cell Transplant does offer hope; it offers the prospect of a cure which means the chance of life that is what is ultimately behind the feeling of eagerness / excitement within me. It would be foolish to imagine life could be the…
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Hi Lola, If there is such a thing as "normal", then that is absolutely it! There's no "right" or "wrong" way to go about having a transplant – however you feel and whatever you do is right, and given what you're going through, absolutely understandable. Personally, I've always found it helpful to take things a day at a…
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Hope the oramorph helps, as well as any icy solutions you try; the sore mouth is not much fun at all, but the satisfaction when the neutrophils appear and the mouth starts healing for me was just amazing – I hope that won't be too long for you now! Good luck, George
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Congratulations, Alfie! Every day you'll be getting a little bit stronger (even if it doesn't always feel that way)...! George
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Hi Susie, I had ALL originally when I was 23, and relapsed at 31, prior to having a transplant last year – so I have some idea of what your son is going through, and I know for my family it was often a terrifying experience. Everyone is different, but I found it helpful to take things a day at a time, and remember that…
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Go Josie!
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Hi Gerty, It's usually just when I start thinking I've been pretty lucky with not having too much fatigue that it hits me square in the head! I'm still learning to accept that and organise my life around it. It took me a while to get my energy back – and I, too, had ups and downs. Just when I thought I was getting stronger…
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Josie – have just left a message on your LLR blog! I first showed signs of neutrophils returning on Day 9, so when they were still there on Day 10 I had officially engrafted. I think they would have sent me home on Day 13, but I was having an extra drug to protect my potentially at-higher-risk liver, which they didn't want…
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So – the shingles fortunately cleared up eventually (though I still get the occasional lingering itch), and now my consultant's keen to try again to get me off the aciclovir in September. I asked whether that was likely to prompt shingles again, and he first said I had a better than 50% chance of it not coming back, before…
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Great news, Alfie!
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Hi Jonni, I'm 16 months post-transplant, and started a staggered return to work about 9 months ago, which got me as far as three and a half / four days a week before I realised it was too much, so I moved to three days a week for at least the short term. My work were great up to a point, but insisted that to work part-time…
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Hi Josie – I just replied to your other thread, before reading this one! All the best to you, and Lola, for your upcoming transplants. Personally, I made sure my transplant day (Day Zero, my 'second birthday) was a celebration, so my wife and dad brought in balloons, party hats and fizzy cordial... It definitely helped me…
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Good luck, Josie – guess your transplant must be coming up. I recommend celebrating Day Zero (your second birthday): demand balloons and party hats! I found that a great way to help think of it as a joyful opportunity to celebrate – which I strongly believe it is :-)
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I don't have any kids to regularly supply viruses, but I do seem to be getting better at beating them as time goes on. Every time I do so, I like to think my immune system has got a little bit stronger... Having said that, I came off the antiviral med aciclovir a couple of weeks ago and promptly got shingles – I had a…
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Hi Becky, Do follow Billie's advice and look at the Anthony Nolan guidance on that link. I was on sick pay until about a month after my transplant, but was still off work then and applied for Employment Support Allowance, which I was awarded almost immediately (within two days of applying). I also applied for Personal…
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Hi Richard, I had my transplant just over a year ago, and can reassure you that the actual moment of receiving the new cells is very easy – almost an anticlimax! For me it took about half an hour via a drip into my Hickman line, and I didn't feel anything different, at least physically. Psychologically it's a different…
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I had a fabulous first birthday celebration at the end of March in a local venue with about 30 friends and family – it was great to upgrade to a glass or two of Prosecco after drinking sparkling elderflower cordial on the same day the previous year!
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Congratulations, Steve! Ad maiora! I love hearing about people further down the path than I am reaching milestones. It inspires, encourages and heartens me. I'm amazed that my first anniversary is only a little over a couple of months away... All the best, George
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I've just got past the six-month milestone and have been advised by my transplant consultant to get the flu vaccine from my GP (who has just written to offer it), but am expecting everything else to start happening after the one-year milestone (like Peter and Katherine, by the sounds of it). It was good, too, to get a…