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Location: Preston, Lancashire
Joined: Sep 2004
Posts: 8,648
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Hi Everyone,
Thought i'd better update this (and my blog), as I've not done for a while! (My blog has been updated a little).
I am now on Day 98 since the transplant, and everything is going well!
A week or so after coming home I was quite ill, and they tested me, and it turned out I had a mouth full of Coldsores! I couldn't eat or drink, or even talk, and I lost quite a bit of weight, and had to go on a fluid drip, but they upped my anti-viral medication to 800mg, 5 times a day, and it cleared it up (slowly).
I've been on weekly visits, and had a bone marrow biopsy at around day 30, which came back clear, and that me bone marrow was producing cells.
Still....more weekly visits, but the doctors being very pleased with my progress.
The main doctor said I was an example of how a transplant should go, and how recovery should be (some people get very ill
)
My Ciclosporine levels (anti-rejection drug) have been up and down, rather than stable (should be 150, but mine have been as low as 34, and as high as 260!) but luckily doctors didn't seem too bothered, as I wasn't having any unwanted symptoms/side effects.
Last week, on day 89 I had a PET scan, and I got the results yesterday...........lets say they are good
No signs of the cancer that was there before my chemo at the end of last year!
My lungs are very scarred, and the is a lymph node under my right arm that is 'active', but it's not grown since my scan in December, so they aren't thinking it's cancer, just scarring really (as if it was cancer, it would grow). They also tested the 'donor cells' in my body, and these are at 100% - which is apparently great
I have another Bone Marrow Biopsy next Tuesday, and they are also going to take my Central Line out of my chest
I feel i'm on the road to being 'normal' again!
I'm still on weekly visits, until I am off my anti-rejection drugs, then I'll move to fortnightly, then monthly!
They will still keep a close eye on me, so lets hope my body has learned to fight cancer now, instead of accepting it's a 'normal' part of me!
I've developed GVHD (Graft versus Host Disease) - my skin is very flakey on my face and hands, and itches a bit, but they've given me steroid cream for that.....but developing GVHD isn't a bad thing, especially before day 100 - and i've only just developed it!
I can deal with dry skin (much like psoriosis (sp)).
Well, hope you got this far to hear my good news