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Vicki 11 years, 3 months ago.
After some months of reading all the more than helful posts it's my turn to step up to the plate & have the little devils harvested
After a week of needles , got off to a good start at Christie harvesting today with well over 2 million , tomorrow hopefully I will get up to the magic 4 million
Will be glad to stop injecting as the side effects are picking up, so fingers crossed , last one tonight
Then some thalidomide to keep mr MM at bay until 17th Jan
Going to be fattened up over Christmas so I can loose weight
Tom we are all going to have to pay you royalties , you are right
onwards & upwards is the only way !
Peter
Hi Peter no need for royalties am sure just get through it with a sence of humour and a big smile 😀 dont forget to drink the water its good for you.
Keep well
Tom Onwards and Upwards x
Hi Tom
Never mind the water , I believe we have a pint on this when i get over the SCT, you are only just over the hill from me !
To my great surprise the stem cells flew out of my old body, on the first two days the harvested 6.5 mill of the little devils, so enough for three SCT's or flog some on E Bay
Amazing how we all seem to differ re harvesting
To my disgust I seem to be going off red wine ! Must try harder
I can only hope it is a good omen for my SCT
All the best
Peter
Hi Peter
ye no probs 😀 but still do the water thing lol.
Great to hear you got plenty of cells, flog em on ebay I would love to see that ha haha, as for the drink I went off it all during my CDT and it aint come back to what it used to be like :-/
Your Transplant will go great 🙂
Tom "Onwards and Upwards" x
Hey Peter,
Who is the show off then!, that's brilliant. Colin only managed just over 2 million in total so you are a star. Going off red wine……just think you will have a few bottles to catch up on when you get better post SCT. Remember don't over do it….I'm having a job restraining Colin (not literally) :-), now that he feels a bit better.
Start a thread so that we can keep up with your progress x
At least you get to enjoy Christmas and get yourself match fit!
Vicki and Colin
Hi Vicki
I have had an epidural around the L5 vertebrae today
This is a much repaired area of my spine , started when I was 20 , forth bridge job !
Since onset of MM I have started with severe nerve pains in both legs which badly affected my walking
Much improved & only four hours since the injection
But my Orthopeadic specialist gave out one pearl of wisdom , in that the SCT itself can reduce spinal bone pain
Has anyone had experience of this ?
Best wishes
Peter
Hi Peter,
Hope your back pain has settled! Funny you should say about chemo easing bone pain. A back specialist we spoke to said that there were many cases where back pain stopped after receiving chemotherapy!, bit extreme but if you get this extra benefit from your treatment that would be great!
Hope your Taste for red wine is returning. Colin has managed some wine since coming out of hospital, so slow but sure recovery.hope you are enjoying your time between harvest and SCT….when is your SCT. You may have said but we might have missed it 🙂
Happy Christmas
Vicki and Colin x
Hi Vicki & Colin
When I went into hospital on mon am , I was in great pain & could hardly walk
So I said to my friend the surgeon , don't mess with me , sort it or else, I find a friendly pre op chat always helps !
The aneathatist asked if I wanted sedation for the procedure but I knew my wife Carole would not fancy driving across Manchester in the dark & rush hour
So I took the punishment , not a happy bunny for thirty seconds , back to room , two hours for coffee & sarnie, then pain began to go , drove home , next day 80% improvement !
Said surgeon also said SCT could also improve back pain , he think he was sad that he could not operate on my spine for a while , he makes good money out of me !
Really trying to drink the red stuff , called at Costco today but crates & crates of red wine did not excite me
Back to try at Tesco tomorrow as this is getting serious
We see the Chistie Heamatologist week today , then SCT booked for 17 th Jan
Which gives us time with all our family over the hoiday period , then on 13 th Jan Carole has a party to celebrate her birthday with a zero tacked on , actual birthday on the 16 th Jan , then I get called up
Never a dull moment , very busy work wise , so onwards & upwards should do it
Which hospital is Colin been treated at ?
Happy Chistmas to you both
Peter
Wishing you and your family a lovely Christmas and healthy 2013. Will be keeping an eye on here to see how you're getting on. I hope you manage a red wine tipple over the holidays!
Emma. X
Hi Peter,
Colin is being treated in Gloucestershire. The hospital in Gloucester for blood visits, and the recent SCT and after checks done at the LINC unit in cheltenham. Great team! They don't want to see him for am couple of weeks now, but weekly blood tests!
Glad to hear you'll be able to get festivities and party over with. At least you can enjoy nice food and maybe a tipple of something…..dare I say try White wine? Anyway best wishes for Christmas and on the road to 17th Jan and the big one…..then it's big recovery in slow time, and as Tom would say 'onwards and upwards!'
Vicki and Colin x
Hi Emma
Just wondering how you and your mum are doing?
Vicki
Hi Vicky,
Thanks for asking, mum is doing well. She had a couple of very low days after the 4 days of dex but she's ok at the moment. I've been a very good daughter and given her a foot spa today. It's the little things that I hope will keep her spirits up! Her tongue and throat are much better, seems the mouthwash is helping. Got a bit of a fright yesterday as she had a pain in the right side of her chest which came on all of a sudden. ECG showed no problems with her heart do either blood clots moving around or wind!! Myself and my husband are taking our boys away for a few days to winter wonderland at center parcs. Mum's going to have plenty of visitors and I'll be ringing her regularly to check up on her. A few problems with nurses not giving her the right chemo…. 3 times now. I'm not happy! Luckily mum is on the ball and keeps them right!
How are you and Colin doing? Xx
Hi Peter,
Glad the harvesting went well. My cells were reluctant to show themselves so had to go back for the second line of approach without cyclphosphamide but with gcsf and an injection costing £4,800. They still proved reluctant so eventually only gave enough for 1.25 transplants. Gcsf seems to leave me with back pain for 2 weeks every time I have it.
Anyway the little frozen bags of cells did their duty exactly according to timetable in The Christie unit (staff brilliant but experience horrible). Because my cells were so dilute had to have the transplant over 2 days and it left me smelling of sweet corn. You get more gcsf on day 10 and the effects of that are only just wearing off.
Nausea and diarrhoea showed their ugly heads in due course. Nausea has continued after going home but now have it nicely under control by making sure that I do not eat too much at one time and with the help of a cyclizine tablet before each meal. Net result is that weight has dropped from 80 Kg pre SCT to 75 now.
I had a close hair cut before admission but the pesky little hairs were still a nuisance as they fell out so a nurse came and gave me another close shave. Nothing is growing very much yet so the morning shave is a pretty cursory affair.
Good luck with your SCT. I appreciate how everybody's experience is different but thought you might like to hear about mine.
Chris
Hi Chris ,
Nice to hear from someone who has been to the same hospital
So far all the staff I have seen at the clinic have been superb , not that I have stayed over , as yet !
I have also been fattened up from my normal 100 kg to a fat 112 kg
I blame the steroids !
I intend to have a close shave before going in , not sure if beard will go , but that to will be close cropped
So far compared to a lot of people I have had an easy run , so I hope that continues , but with my luck !
By a stroke of fate , my daughter in laws sister , who is only 27 , will be in for radio therapy for a brain tumour which is said to be in operable , not good for one so young,this whilst I am in
Are you still working or has the MM stopped you ?
How long have you been out of hospital ?
All the best
Peter
Hi Peter,
I came out on 7th Dec after 17 days. I think it is important to go in believing that it will be for 4 weeks. Any remission is then seen as a bonus. I was fortunate in that I did not develop any serious infection. Apparently infections can slow up the reinstatement of the white blood cells. I now feel reasonably normal apart from some nausea, a loose bowel, general tiredness and residual bone pain from the Gcsf that they start giving on day 10. I am able to walk a mile or so without getting exhausted.
I forgot to mention that I think sucking an ice lolly during the administration of the chemo did reduce the sore mouth symptoms. I was also scared by the instructions the staff had for preparing the stem cell sachets. Apparently they are extremely brittle so I was just hoping they didn't drop one! Two nurses do the job, one checking on the other and for every sachet they repeated asking me who I was.
I didn't like the food. Before you go in it might be worth while thinking about buying tins of your favourite soup and perhaps some ready meals that you really like. There is a good system for storing your own personal supplies in the kitchen.
Get as fit as you can before you go in would be my advice.
Good luck,
Chris
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