over the coming weeks commecing on the 28th june im having a stem cell transplant and will be keeping a diary on this blog! one to kill the boardom and two to keep a record of my day to day events to help others to understand what happens who are to go down this road......
To be continued...........
17th June 2011
Bit of a set back today after having my medical and PET scan on monday, was told today that my donor was not able to donate at this time, so its back to the drawing board to find another, but i was found 15 matches at the outset and this is the second one which was not able to donate so it should just put it back a few weeks while they sort out the next best match..... third time lucky hey??? But this can happen in this prossess.........
never the less you get yourself all focused to the 28th June and my wife and i are both very down today but just need to refocus now to move on from a blip........
1st July 2011
Went to see the good people today at the bone marrow unit to find out how things were progressing with my next step and was told that they have found another patential match and protacol was being followed to take this to the next step...... fingers crossed hey..... waiting for the phone to ring again now!!!!!!!!!!
24th July 2011
Things are moving on again now as got another date to start!!!! which is going in last week in August for my chemo and SCT on the first week in September, got another medical on the 2nd of august as i need to have a current medical no more than 28 days prior to admission!!!!! :)
8th Sept 2011
More set backs to deal with as 3rd donor failed there medical so back to square one again!! :( i seam to be in better nick than these donors!!!!! lol
As the remainder of my matches are miss matches, i have just found out, the Bone marrow department are looking at the regester again now doing a fresh search to see if any new donors have come on line in the last 8 months from the first search which was done for me, if no new ones are available one option is to wait till donor 2 becomes available again as that person was not able to donate AT THIS TIME... back in may for about 11 months, which is the official wording, or we can go down the miss match road which can be a bit like russian roulet but we don't have to rush at this time, but would like to have Rituximab maintainance for the time being to keep me honest, but again there are problems getting that as i had transformed follicular which is not been passed for funding by the good old NHS but the BM/Lymphoma team can apply for special cases.... just hope in special enough!! o :)
But as treatment has worked really well for me this far and the Ritux in my body is still doing a job plus my age i can't see why i should be denyed treatment being a tax payer and all that but thats a whole different can of worms the blog about....
So Lymphoma team meating 7th Sept and see where we go from there... thought this would be alot easier than it has been, but these things can happen..... just want to be cracking on now, enough waiting.
13th Sept
Happy days,
BMU did another search for me as a new patient and they have found a fresh donor which has come up to the plate and put themselves down as a donor on Anthony Nolans SC list, so i am so relieved, so 16th November is when im supposed to have SCT done, proseeded be medical in the 18th Oct, so coun't down is back on again, more nerverse than ever this time that i'll be let down at the last hurdle again, but surly won't be let down a 4th time?!?!?!?!?!?!?!?!?
Been doing my bit to get folkes to sign up to the list and have had success in geting quite a few, by explaining what it exactly entails, and alot of people didn't know how easy and unintrusive it actuly is, and if you are reading this then your live has been touched by this subject so it dosen't hurt to explain (BULLY) friends and family to investigate it at least at they could save a life as some kind sole has done for me and my family, everyone would exept a donor's SC'S but would they give some????
19th Oct
Well we have had medical and passed with bloods pending, donor this time is from Spain "male", he has his medical monday 24th when i have a PET scan for a marker, as i haven't had one since June, won't get the nod till the 7th Nov when i go in on the 8th so it's cutting it a bit fine, can't bare to think about if this one fails the medical too! getting very nerverse this time after all the disapointments we have had to edure this year! must be due some good luck soon!! :)
4th Nov
Getting closer now the the start next Tuesday, Had PET CT results back this week and some uptake was found in chest area so a Biopsy had been scheduled for today to have a look to see if it was anything, but last night there was a change of heart by the Bone Marrow team as they didn't think i would be recovered in time and could jepidise my transplant next week so they desided not to go ahead with it, and i believe i may have stronger chemo to treat worst case to be on the safe side, so not to risk cancelling again, as you know from the top of this blog this should have been done in June of this year. alot of sleepless nights at the moment and a bit more stressed from the news but they know what they are doing i guess and wouldn't take risks!
7th Nov
Waiting for call from hospital confirming to scared to call wife did and we are good to go so thats today sorted out
8th Nov
called 9 am to be booked in turned up at 3 pm didn't get bed till midnight due to musical beds being played blood and stats took bed
9th Nov
Well this is where it all starts!!!!!
down to vascular for hickman line fitted, quite painless team were very friendly in and out in 20 mins felt quite at ease with them, just a local anisthetic. had xray a couple of hours later to check the placing and we are good to go with the campath after the pri med, went in over 5 hrs for a start till started to get a few symptons which were aching flu like symptons half hour of shaking before stopping for a short time and restarting at a slower pace, cold hands and finished about midnight after starting it 4pm
10th Nov
broken sleep last night with line slighly uncomfortable and obs being taken, hickman line playing up as it wouldn't bleed back but going in with fluinds ok. so down at vascular again for a bit more ferriting around with pipe got it working after a bit of pushing and pulling but still problems, so back to the campath for day two, started off a bit faster today but not quite as easy ride today and hives developed all over and very itchey all the way throught the treatment and all night which was quite uncomfortable so peritin was used to cool it down along with some pethidin which helped a bit but they say its good to have that reaction as it shows its working well,Flurarabine not to bad.
11th Nov
Carbon copy of yesterdays reaction so sat tight tryed not to scratch the itch which was hard but it wasn't quite as bad as the day before but the feeling of rolling around in nettles is probly quite a good discription of the pain but overnight was easier but still needed to have more anti histemin the following morning.
12th Nov
as the morning wore on got much better ready to start the flurarabine and some of the LEAM, much easyer today just a bit of chemo brain setting in starting to feel more tired
13th Nov
Rash all but gone now with peritin good day very tired flurarabine and bit more LEAM today over 3 drips last on at 10pm
10th Jan 2012
Had my new cells on the 17th Nov after the plan was delayed also had to have a new hickman line in as my line was receiving drugs but would not give blood back as it was hard up against the vein wall so what should have been a 10 min job turned out to be a 1 1/2 hr job as they had trouble getting the line in and the vasciler surgen had to come in to do the job in the end after alot of pushing and pulling from the YTS girl!! had a bit of pain from the new cell when they first got put in across my kidneys as the mismatch was a different group to and there were some cells that were left in that couldn't be removed but that only lasted about half an hour. the melphalan they gave to me the day before the new cells comes with ice lollys as it stops your mouth from having to many mouth ulsers and starts to give you dioheria which i had for the next 2 weeks and was in the toilet bout every 15-30 mins during that time 24/7 which is exausting, had sore mouth to for about a week till the new cells started to graft and then started to feel a whole lot better from that moment on, food was terrible and had to live on cerial soup and yougurt for the remaining time in hospital.
2nd Dec
Came out on the 2nd Dec 3 1/2 weeks from being admitted which was quite a quick turn around, was loaded down with a concoxsion of drugs the cyclosporin is the most important drug with it being the anti rejection drug, had to have some magnesium before they would let me out which i had more of the next week as it was a little low.
14th Dec
Started with a rash on my midriff which was GVHD so Steroids were givern for this but as my donor match was a mismatch it was expected and required to show that the new cells are doing a job and attacking the cancer and my cell to take over my body.
25th Dec
Last day of seeeing the GVHD for now ,so coming off the steroids slowly and trying to build up my strenght but getting out and doing a bit of walking as much as i could cope with at this stage anyway, not half as tired as i was when i came out of hospital still get jelly legs and feel week but making progress. eating very well sleeping well, starting to get a bit board though.
