[bikerchrisParticipant]

I am getting prepared for my next visit to the Bristol Blood unit on 12 September for another bash at collecting these stem cells. After my failure last time, my consultant applied to the NHS Trust for funding for Plerixafor which frees the stem cells from the bone marrow, and gives more chance of the cells of being collected from the blood. It is a very expensive drug,and not always available. This time I will be having the Plerixafor injection in Musgrove the night before, and staying in overnight, after taking the usual 'G' injections myself for the previous 4 days starting this Saturday. Not very pleasant, but I would rather stick the needle in myself!
The doctors seem confident that this treatment will work, and then I can carry on with the Transplant in a few weeks time. In the meantime I am off the medication, and feeling better, but my hair has finally given up the ghost and fallen out (or most of it), so I look a bit of a state, but have been wearing a natty range of caps – in fact my head gets really cold! So here goes again, and lets hope for a better result this time. My PP level is about 20 at the moment, up slightly, but the medical team seem fairly happy. Lena has been brilliant as ever, and we had a wonderful wedding in May! Greetings and good luck to you all.
Chris

[AliParticipant]

Hi Chris

Firstly, congratulations on your recent wedding!

Its great news to hear you have been granted funding for Plerixafor-(did I read its about £5,000 per shot?). I am sure you will collect those lovely cells this time. It will be a good boost to Vicki and Colin as they are going through the process of applying for funding for it. It just doesnt seem fair as here in Nottingham its given if needed-no questions.

My Mum had her head shaved before the hair quit and her head gets cold too!

Wishing you the best of luck for the 12th.

Ali xx

[MicheleParticipant]

Hi Chris

Well let's hope this does the trick and your body responds by releasing millions of stem cells. 🙂

I was as bald as a marble from February to April! My hair started thinning out after I'd had the chemo. for stem cell harvesting in December and finally expired when I was in isolation a coulpe of days after the STC. I woke up one morning and it looked as though a guinea-pig had exploded on my pillow!

So many people wear some sort of hat or scarf all year round now, so in actual fact I went out during my hairless weeks and nobody batted an eyelid.

Keep us informed of your progress.
Michele x

[BADGERParticipant]

hi Chris

fingers crossed for you for the second attempt i really hope this drug works for you so you can get your SCT so glad the wedding was a success
keep us in touch with how you get on
GOOD LUCK:-P
LOVE Jo x

[tomParticipant]

Hi Chris

Well done to you and your team for getting the funding, and as for the hair I lost mine in bits and bobs so decided to shave it all off and keep it off til it felt like it was gonna grow? but it still misssed the middle when it grew back lol.

Enjoy Marriage I do (just daren't ask the young bride if she is lol)

Tom "Onwards and Upwards"

[VickiParticipant]

Hi chris

Firstly congratulations on your marriage. And the very best of luck with your second try at harvesting. We are so pleased to hear that someone is the southwest has got prelixafor and hope it is successful for you. Colin has had two goes at south mead and both failed but that was without the magic injections! Wed be really interested to hear how you get on with it, as Gloucestershire are in the process of applying for us so that Colin an get a third attempt.

All the best, fingers crossed for you

Vicki and Colin 🙂

[AliParticipant]

Hi Michelle

Just a question about hairloss. When did yours start to make an appearance again? My Mum is 7 weeks post SCT.

Hope you are having a good weekend

Ali xx

[HelenParticipant]

Hi Chris
Glad the wedding was a happy time, And that the commissioners have been leant on enough to come up with plerixafor for you, I do hope it does the trick and you get to ASCT. I am at last feeling the benefit of mine and my quality of life is pretty good.
Love Helen

[bikerchrisParticipant]

HI Everyone, thanks for all your awsome comments, it really gives me a boost! I am giving myself the G injections which are double doses this time. I have had no more chemo, and have felt ok. Tomorrow I am in hospital in the afternoon, and having the magic injection in the evening, then being carted off to Southmead by hospital transport. A couple of my friends do volunteer driving so it may be one of them! In preparation I have been paintballing near Bristol for my Son's birthday outing, which was a bit mad, but I survived with a few bruises and aching legs! I am also getting into Dallas, so I have something to focus on during convalescence, and keep me in touch with reality! Episode 1 = 8/10 (I miss Victoria Principal as Pamela Ewing!). Enjoy the summer folks! Chris

[tomParticipant]

Good Luck for today/tomorrow Chris I hope you do well

Tom "Onwards and Upwards"

[eveParticipant]

Hi Chris
Just coming on to wish you good luck,hope they manage a good harvest,so they have lots to put back in.
To answer you question Ali Slim is a good 3 months post SCT,his hair showed no signs of coming back until 3 weeks ago,it,s come back very dark and is a bit like a babies first born hair very soft.Eve

[AliParticipant]

Hi Chris

Wishing you the best of luck for today!

Paintballing sounds fun – ouch!:-)

I thought it was only me watching Dallas! Lets discuss after the next episode!

Hi Eve

I hope you had a lovely holiday. Thanks for the hair info. Will you just let Slims hair grow or will you give the "bumfluff" a mow?.

Love Ali xx

[BenzParticipant]

Best of luck Chris…..sure it will go well.

Scott

[VickiParticipant]

Hi chris,

Just wondering how you got on with your harvest. Hope you got millions of those little stem cells out and that plerixafor did it's job. Hope you haven't got too many bruises from the paint balling 🙂

Vicki and Colin

[bikerchrisParticipant]

SUCCESS! HI Everyone, well I'm back after my Harvest, and those guys and gels at Bristol did their stuff, after a preparation at Ward 9 in Musgrove. I had been taking a double dose of the G mobiliser which I did myself each evening for 4 nights, then I stayed in Ward 9 for Tuseday afternoon where I relaxed, watched TV and stuff, and with great ceremony the 'Super G' Plerixifor was produced at about 11.30 because it is most effective 12 hours later. In fact it was only the same jab as the G, pretty small really, and I didn't notice any bad effects, only a bit of dizziness maybe, so I got a good sleep (except for the horrid plastic mattresses in hospital and bouncy pillows!) because we had to leave at 7.00am to get to Southmead in the morning. I also had a much more noticable ache in my lower back, so the drugs were obviously working better than before.
They got me started immediately on the harvesting machine, and did a blood test which came back with 13 score, not brilliant but over the 10 minimum, and better than my 3 last time! I had 5 hours on the machine, but there is a newer one which is a bit faster. I had a bit of the calcium side effects which they warn you of, tingling of the lips, but they give you a calcium infusion which cures it. My problem was I went to sleep, and when I woke up I nearly passed out, but once they sorted me out I was ok to continue. Also your arm gets a bit cramped because you have to keep the 'out' arm straight all the time. Once I got back to Musgrove I heard that the result was [b]2.06 Million stem cells[/b], so a brilliant result, but not enough for 2 transplants. So back in for a second night and more of the both G's again.
At least I knew what to expect on day 2, and because I had been iffy on the first day, I went on the newer machine. This time my mobilising count was 20, so even better, and I was finished the collection by 2.00pm. We even had a visit from an Inspector from the Government HealthCare Executive who interviewed all the patients there (they have about 4 machines at Southmead blood unit). We were able to find out the result of my harvest before we left, and they collected another [b]2.1 million cells![b][/b]. It seems a lot, but this is appearently only 15% of your total stem cells.
It is great that I can now look forward to the Transplant, and I can only praise the brilliant staff and doctors at Ward 9 and at Southmead who are so highly skilled and do everything possible to look after you. There was an infectious cheerful team spirit during the proceedings, and my wife took in some chocolates which were appreciated! She was able to stay with me the whole time apart from the 'needly' bits!
Thanks again for all your encouraging comments, and I hope my story will be helpful and positive to all you guys waiting for your own harvests!
Greetings to you all, both new and seasoned campaigners, and enjoy the lovely sunshine, and wind in your hair/scalp (delete as applicable)!. 🙂
Chris

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