This topic contains 119 replies, has 17 voices, and was last updated by 
tom 11 years, 5 months ago.
Hi Anne and Pete, I am more than happy to offer a few words of 'wisdom', and feel quite honoured that you have asked, so please don't apologise because this is exactly what the forum is for.
You will probably be dealing with Dr Bolam who is charge of the transplants,, and is very well respected but can be a bit brief in his explanations!I quite like him. In Taunton they seem to favour giving a fairly big dose of chemo before the stam cell collection, to try to reduce the amount of cancer in the sample they collect, which is about 15% of your stem cells. This was the first time I lost my hair, so Pete be warned!. You will go into ward 9, probably in a shared room, and in my case I think I stayed for 2 nights. They will give you fluids on day 1, and in your case it sounds like they will put a line in (maybe chest) but I didn't have one until my actual transplant. On day 2 they will give you the chemo, and loads of fluids and stuff to flush it through as fast as possible – you will wee for England! Providing you are ok, you should then be able to go home to recover which does take a few days. My wife stayed with me for pretty much the whole time, but Ann, that is up to you, there is lot of lying around attached to a drip, but you can go to the day room, and there is free TV and wi-fi.
The injection they are taking about are the famous GCSF which is a mobilising drug which makes the stem cells come out your bone marrow into the blood, so they can be filtered out and collected in Bristol (Southmead). They will ask you to do this for about a week before the collection days, and you have to do it in the evenings because it peaks 12 hours later. It is quite easy to do, but I went to the GP's nurse to show me how to do the first one.
If you are lucky, this will enable them to collect enough cells, but be warned, it doesn't always work first time, and if you read my last 'story' 'Stem Cell collection second attempt' which is on page 4 of the Treatments section, back in September, you will see what I mean.
I am quite happy for you to phone me if you want a chat or to meet up, on 01823 270304.
I hope that helps, it makes it sound very complex, but taken one bit at a time it's fine. Really you are through the worst bit, as the cycles seemed to go on forever!
Hope you're safe from the floods!
Best wishes, Chris and Lena
In response to your earlier comment Chris, yes, yes, yes, your ramblings have been of enormous help to me, this has to be amongst one of the best threads that I have followed, so a BIG thank you & of course everyone else who has contributed too. I am so pleased that things have turned a corner & I look forward to more threads 🙂
Ange
HI Vicky, So glad that Colin is improving and that they have got to the bottom of his pains, thats great! And you said he may be home tomorrow too, that is just brilliant, so pleased for you both.
I am absolutely fine, appetite really good, just as well as I lost about 5kg, and there is nothing of me! I'm stuffing in beer, chocolates, fish and chips and as much other food as I can!
Lena very happy, has her Granddaughter staying this weekend which she hasn't been able to do for weeks 🙂
Love, Chris and Lena.
Would be nice to get together once we are all back to normal after Chrismas?
Ahh, thanks Ange, I feel quite humbled!
I'm not too sure what I can say now the exciting bit is over, but I am really pleased that the thread was helpful – mostly down to the other Club members comments I am sure, but Lena always reads the various progress reports, and I will try to stick my two-pennorth in if I can offer advice to others. It is a pretty scary journey for us all, and the more support we can get, the better.
All the very best for your journey, and an early 'Happy Christmas'!
Chris & Lena x
Hi Ann and Pete
Looks like it has been answered, but just let me say to Vicki and Colin, My line was a "Femoral Line" and those dangly bits I had down near my testies :-0 and that took some getting used to Lol, but so as not to worry you Ann and Pete its all well well worth it I sit here of a Sunday Morning in remission and Drug free 😎
Good Luck with it all
Love Tom "Onwards and Upwards"
Ps I couldn't inject myself (wimp) so used to go to the day unit and the nurses did it for me lol xx
Hi Chris, Vicki and Tom
Oh thanks so much for your comments, so much great information, really feel more at ease now, knowing what is ahead. Despite reading through all the literature time after time, so much better talking to you guys who have been through it all!!
Yes Chris, Pete sees Dr Bolam, lovely chap as you say, can understand why he is so respected, abit brief with his answers, but then again I don't suppose he has the time to be able to answer everything that patients throw at him.
Hope you don't mind but I will be asking you all lots more questions after 5th December, just relying on the experiences you all have been through.
Chris, yes we have escaped the flooding, but so bad down here in the close surrounding areas isn't it! You take care and let us know how you are getting on.
Vicki, I hope Colin is back home by now, keep us posted.
Tom, your posts are always so amusing, always lovely to hear from you!
Thanks once again all!!!!
Speak soon
Love Ann and Pete
xx
Ann and Pete,
Always ask away……will help where we can. And yes we are still at home……it's great. Be prepared for Pete to sleep a lot and you to feel nervous at every twitch, sniff or flush of the face!
Chris."…….would be great to meet up with you both when we've got more energy in the new year!
Vicki & Colin x
Hi all
Chris, worried about you, not heard from you in a while, hope all going well.
Pete is overnight in Musgrove tonight. Seeing him today after the 2 hour dose of chemo made everything suddenly feel so real!! He looked so washed out this evening, still on a drip, but apparently everything ok, providing he keeps going to the loo to wash the chemo out.
To get some practice for the GCFS injections which start on Monday, the nurse let him inject himself tonight, he did well, and so another worry out of the way – I certainly could'nt do it!!!
I must admit, that by reading other people's experiences, it helps so much, at least you know what to expect, albeit does'nt make it any easier -it is just the start of a very long journey! Stem cell harvest still on schedule for 17th!!!
Vicki, I hope your return to work yesterday was ok, it must have been a wrench to leave Colin. How is he, progressing well I hope?
Love to all, take care, speak soon – keep us posted!
Ann
xx
HI Ann,
Thanks for the post, no need to worry, I am doing fine considering it is only 2 and a half weeks since I came out of hospital! My taste has come back fine, and my mouth is ok again and I have plenty of energy, just takes a while to get going in the mornings. Have been to work a couple of days, and we went to 2 dinners over the weekend, so all going pretty well!
Really glad that Pete has made a start on his treatment, I hope he gets on ok this week, I expect he will feel a bit rough for a few days, but it will soon pass. Keep me in touch with the preparation for the Stem Cell collection, and feel free to ask any questions – have you started a thread on this site yet?
Good luck and let us know how you both get on this week,
Chris and Lena xx
Hey chris,
Good to hear from you and glad that you and Lena are having some good times! Careful not to over do it now!
Colin is doing good too, touch wood. However now I am back at work he's got free licence to over do it and then is totally clapped out by the time I get home from work:-). still it's great to know the SCT is done, hope Lena is more relaxed than me though as I am still watching Colin like a hawk, which possibly is getting on his nerves :-). Will try harder to relax, which even a glas of wine won't do!
Ann and pete, how's it going? How are you both. Set up a thread. When is the SCT scheduled for after the harvest? Hope pete is feeling a bit better. It did wash Colin out, and beware his hair started to fall out 3 weeks after that chemo…..we thought he had got away with it……not!
Ask any questions if we can help. Col still at home but over doing it!,
Take care Lena and chris,
Vicki and colin x
Hi Vicki and Colin
Hope your back to work is going Ok am sure it helped Elaine when she went back to work after my SCT it gives her something else to worry about apart from iccle ole me Lol, Colin is just a mere male we never knnow when too much is TOO much till we end up in bed early nite shattered:-S and if Colin is like me he will never learn 😛
Hi all
Yes, do intend to set up a thread, but thought I would wait until 17th when stems cells are hopefully removed successfully etc etc.
You guys have been so helpful, thank you so much!
Pete feels really well, even did some DIY on Friday, could'nt believe it, but then again, everyone so different.
He will go back to work tomorrow, but has to start the injections – GCFS also – 2 a day.
Will he have any side effects????? My Husband is so stubborn, just so laid back. I suppose that is a good thing, but it does'nt stop me from worrying.
Oh, another question! Pete went to barbers and got a close shave on his head, just to get used to what is going to happen!! But silly as its seems, what happens to the hair, ie on the body etc, will it just appear on the bed each morning?? I know it sound a blooming silly question, but your advice would help! Also, after the stem cell removal, how will he feel? We have invited people for Xmas Lunch, but I suppose I need to know if he will be up to it!
He has got an appointment on Friday with Consultant, but would prefer to know from people who have experienced it all.
Sorry, so many questions!
Chris, so glad to hear you are well, 2 weeks eh and already feeling better, really good news. So happy for you and Lena.
Vicki, so pleased all going well, lets hope you are in for a really nice Xmas, OMG, only 2 weeks away!!
Love to all
Take Care
Ann and Pete
xx
Hi Anne & Pete
I had by stem cells removed last mon & tues, all 7 mill of the little devils , totally painless , your left hand is connected up & your right inner elbow or vica versa , then the " washing machine" pumps it round & round , extracting cells via a centifuge?
You just have to sit still for best part of five hours, so don't drink a lot before & during !
The injections I took for a total of ten days , one per day, made me feel nauseous , but the anti sicky pills cured that, then after a few days I got pains in hips & chest, pain killers got rid of most of that. But the pains stopped as soon as I stopped injecting
As for hair , most people loose it off their head , I have a beard , that might go ,heard of some loosing underarm
I did ask how far hair loss went down , but nobody answered my question , so skinhead look before you go in , then cross fingers !
Stubborn , very laid back & positive is me
The only way !
I could add onwards & upwards , but Tom might sue me
All the best
Peter
Hi Ann and Pete
Frank is 2 days behind Pete. He is due on 19th (all goes well). So I will be following your posts closely and wish Pete the best of luck in the world. Ann we were having 12 for Christmas and the registrar sad no. So we cancelled. But we don't thing she is right. We are seeing consultant before the zap of chemo starts so will have a word with her. I just love Christmas. Ann Pete the best of luck and I will be thinking of you
Love Jean xx
Hi Ann and Pete
Well I had two a day of the injections and the nurse bless her used the same needle left needle in and just changed the filler 😀
Side effects? pain in ribs and back for me for about two/three days and as the saying goes the more pain the better 😎
Hair well I lost mine shaved the head, lost all body hair cept eye lashes and body hair am sure came off in the shower it was just head hair I noticed in the bed/pillow 😀 after taking cells I felt great I had a Femoral line fitted and that had three inlet/outlet valves so took mine and put back through that.
Am sure Pete will be up to it over the xmas bits and bobs just rest and dont do too much (that goes for you too Ann 😉
oh and as for hair loss it was great not to shave for a few months but when it came back my body was itchy and I assume it was the hair shoving through ?
Peter you know you can use the "Onwards and Upwards" as often as you want my Friend 😎 its free to use.
Have a good week
Love Tom "Onward and Upwards" ((no copyright 😉 ))xxxx
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