Hi Louise
It's a small world, I lived in hale, local schools etc , until I married, then went to sale, soon returned to park rd hale , then to the mount in altrincham, before moving to the Ribble valley twenty years ago.
Son & family still live in Halebarns
Your dad seems to have done really well, I got my pp down from 42 to 3 , what was your dads at the start of treatment ?
Like your dad I had few if any side effects from the CDT , ditto stem cell collection, particularly when you read posts of lots of others who really suffer, my specialist says this is a good omen, I hope !
All the best of luck to your dad
Peter
Hi Chris
Happy new year
Thanks for your advice , I will make sure I overdose on ice !
I had a good briefing with my consultant Dr Mike Dennis at the Christie just before Christmas
I hope I am not stuck in the toilet with all the gear jangling around me ,but if it happens , it happens
I take your point on other posts re travelling fo Christie for both me , Wife & visitors
On a good day we are an hour away , in rush hour it had taken me over two hours
My Wife will spend part of the time with son '& family who live in Halebarns & can chauffeur her around for part of the time, which will be a great help
Trying to get fitter over Christmas is not easy , but drugs & wife's food have fattened me up, so I can easily afford to loose 15 kg
I'm looking forward to taking on board some 3.5 mill cells, which I hope will knock me into remission for a very long time
All the best
Peter
Hi Steve
We had a great family Christmas & new year, feels like I have been on holiday until SCT starts on the 17th Jan at the Christie Manchester
Likewise I hope you & your family did also had a good Christmas break
Glad to hear you are back on the poison , it is an acquired taste. My consultant was amazed that I enjoyed it so much that I had few if any side effects.the stem cells also shot out off my old bones , 7 mill in two days, so got enough for two goes
The high dose of steroids over each four day period were great, got rid of my back pains & I could walk so much better, so much so I had an epidural injection just before Christmas to make the feel good factor last longer
I have turned into an OAP druggie since the onset of MM
Great fun going into a chemist for pain killers & they ask you if you are any other medication , I reel of the list , they ask no more questions !
All the best
Peter
Hi Gill
Re my study / office wallpaper , brilliant observation , been there twenty years , we had forgotten what it was !
As the room is stuffed full of my bits & pieces , re decorating is not an option
Although Wife threatens to put all of it in a skip !
I hope you have a family to keep you company over Christmas
All the best to you & a happy as possible Christmas
Peter
Hi Steve
To be blunt I would take MM very seriously . It is a silent killer at only 39 your life is , I would have thought very precious
If I were you I would take a long list of questions to your encologist & not leave until you get satisfactory answers
You need to mug up on MM , knowledge is power !
With a pp of 125 , very high I think , what is it now ?
I would hope that you have had very regular blood tests & the pp was now well down
Missing medication & not taking MM seriously is a short cut to a short remission
Sorry to be so blunt , but life itself is very precious , do you have family / friends to support you , again very important
Happy Christmas
Peter
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 Ann & Pete
Good luck for tomorrow
I spent five hours in the chair each day last mon & tues
Both hands were shackled with the in / out tubes
Coffee was offered regularly
Then I said what about toilet facilities , they said you can have a bottle , I said my hands are tied , they said don't worry we can help
No more coffee after that !
Think about that tomorrow , but I hope you get the cells to co operate
Best wishes
Peter
Happy Christmas & a heathy new year to all in this exclusive club
My main wishes for 2013 is to hear a " wonder drug " is on its way & that we are all still talking to each other this time next , maybe a little older , but still here
Very best wishes
Peter
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
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 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 Tom
Cheers to you & your cells , hope they are in good enough nick to get you to her Maj 's telegram
Looking at your pic ,
I guess after three years your hair ain't going to grow anymore, although. I am resigned to being a bald as the proverbial
Then I will post a bald pic
All the best
Peter
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
I am about to have cells harvested, first SCT 17 th Jan
I went through CDT with little or no problems
Specialist said as I am in " good condition" SCT will add at least 18 months to my statistical survival
Not sure if this applies to a second SCT, are you likewise in " good condition"
Well worth asking
All the best
Peter
Hi Karen
Finished & passed all my medical tests on Fri. Have you had all yours ?
Been at Christies nearly all day , they started off the chemo with a big dose of cyclo what's it , sorry cannot be bothered to check out the full name
Given a goody bag to take home , pills & needles to self inject for the next week to tempt out the 4 mill little blighters , who counts them ?
Next Mon they will check progress, if not ready check next day, they think back end of the week probable harvest date
Then I can have a break over Christmas , which is very nice as we have big family do's , plus early Jan Wife & Daughter both have birthdays, so I will have some thalidomide to keep the piraña at bay , then in for SCT on 17th Jan
Good news,staff, food & coffee really nice
Bad news, eyesight back to c–p already & I had an eye test booked for tomorrow !
Still , onwards & very positively upwards, thanks Tom !
Kind regards
Peter
