PeterJames replied to the topic New in the forum Newcomers 11 years, 11 months ago
Hi Ann
I had 6 x 3 week cycles of CDT
This caused me little or no problems , loved the steroids , great energy boosters, the one down day after them was worth it
I finished CDT mid Nov ,but as I didn't want my SCT until after Christmas plus my wife Carole had one of those birthdays with a zero, so had some thalidomide to keep the little b— r…[Read more]
PeterJames replied to the topic New in the forum Newcomers 11 years, 11 months ago
Hi Anne
I was fit as the proverbial butchers dog in May last year , non related blood test said otherwise , lo & behold I had MM
Luckily found very early
Beginning July started CTD , had no problems , then SCT this Jan , now in full remission
Back on zometa in a few weeks
Wil you be having an SCT
All the best
Peter
PeterJames replied to the topic New in the forum Newcomers 11 years, 11 months ago
Hi David
Cheeky young man ! NBC
71 this June , although when my beard dropped off ,I was told I looked 10 years younger , so the family voted on or off , they lost its growing again
I think I am a long way off being the oldest member , could be one of the other Peters
All the best
Peter
PS : 10th June , presents & cards much appreciated
PeterJames replied to the topic New in the forum Newcomers 11 years, 11 months ago
Hi Vicki & Colin
Wish you two would stop showing off how fit & adventurous you are
For us a mile or two stroll along Blackpool prom !
Mind you I galloped through all the treatment ,tough old boot after all
So there !
Peter
PeterJames replied to the topic Stem Cell transplant, given go-ahead in the forum Treatment 11 years, 11 months ago
Hi Tom
After all the posts re the SCT, as you stand on the edge of the cliff , it comes down to a personnel decision
My advice would be to grit your teeth & go for it
I came out of hospital on 1st Feb this year after sixteen days
We all have a bad few days & some time is needed for a full recovery, I still have some loss of taste , dry'ish…[Read more]
PeterJames replied to the topic newly diagnosed in the forum Newcomers 11 years, 11 months ago
Hi Maria
I went through the CDT route , completed last Nov, stem cells harvested in Dec
Had some more thalidomide to keep the beast at bay. then SCT mid Jan, out in 16 days, bloods recovered quickly, been out of hospital 2/12 months ago, still bit tired , sense of taste not 100%, but getting on with life , work , family etc
You do not say what…[Read more]
PeterJames replied to the topic Full Remission in the forum Treatment 11 years, 11 months ago
Hi Tom
Major step forward this evening , nearly as earth shattering as being told in remission
Don't tell anyone else but I had a glass of alcoholic white wine with my meal
Normally red is my poison but not ready for that as yet
Ain't life good !
Keep O & upping
Peter
PeterJames replied to the topic Full Remission in the forum Treatment 11 years, 11 months ago
Hi Eve
I am a very happy bunny, but feel a bit of a fraud when reading the posts of others who have or are suffering a hell of a lot more than i ever did
My appetite is quite good , some things I can taste nicely , eg not too spicy curry, hooked on chicken noodle soup , but I think that is still legal
Mouth still fairly dry which does not help…[Read more]
PeterJames replied to the topic Aggressive myloema in younger patients? in the forum General 11 years, 11 months ago
Hi Rebecca
Seems to be the luck of the draw , lots of people well under 50 have posted on this site , the oldest I remember being 87
An early diagnosis is the best , but unless you have a blood test every three months , very difficult or in my case a routine unconnected blood test found my MM very early on, I had no idea I had a problem , no…[Read more]
PeterJames replied to the topic Myeloma XL trial in the forum General 11 years, 11 months ago
Hi San
I was kicked out of Christie Manchester on 1st Feb , having gone though all the poison warfare very well
Three weeks ago to I was told i was now remission , not a trace of the hated pp
Still a very happy bunny
Tell your mum to stick at it , don't mind me asking her age & where being treated
Peter
PeterJames replied to the topic Question…..maintenance treatment in the forum General 11 years, 11 months ago
Hi Colin & Vicki
Today's e mailed myeloma news has an article on Revlamid as a maintenance drug
The opinion in the report from trials is it does extend remission
My specialist was of the view , you have done very well , leave it be , but I am going to show him the report on next visit
Hope that helps
Peter
PS : now turning into a greedy pig…
PeterJames replied to the topic Myeloma XL trial in the forum General 11 years, 11 months ago
Hi San
I was on the CDT chemo . 6 x 3 week cycles , prior to SCT this jan.
I had four days twice in each three week cycle of the steroid Dex , that is the " D" your mum is on, I took 40 mg/ day
To be honest I loved the effects of steroids when on them for the four days , gave me big energy surge, wife said I became Rambo with attitude
But the…[Read more]
PeterJames replied to the topic Everybody has a story… in the forum General 11 years, 11 months ago
Hi Dai
Since my MM diagnosis last may , I have been treated at two hospitals , the last being the Christie, Manchester
In both cases the standard of treatment from the lowest to highest in the chain of command was nothing less than superb, nothing by the nurses was too much trouble . The night after my killer chemo dose I was not very well ,…[Read more]
PeterJames replied to the topic Full Remission in the forum Treatment 11 years, 11 months ago
Hi John
How did your result go ?
Peter
PeterJames replied to the topic Chicken Pox !!!!!!!!! in the forum General 11 years, 11 months ago
Hi Trish
Strangely enough I was at the Christie today & asked the question , had CDT / SCT taken away the immunity from childhood type diseases ! chickenpox etc
He said all the innoculations would have to be done again one year after my SCT& would be writing to my Doc re this point
Also the flue jab I had last Oct had also been wiped out
So…[Read more]
PeterJames replied to the topic Franks SCT take 2 in the forum Treatment 11 years, 12 months ago
Hi Ann & Pete
My taste buds are a long way off being perfect , been home six weeks this Fri , also mouth still fairly dry
Specialist says this lot will come back in time ,
Hair on chin & moustache started growing about ten days ago , not much sign on top but I didn't loose that much
At least it's growing back white , wondered with all the…[Read more]
PeterJames started the topic Full Remission. in the forum Treatment 11 years, 12 months ago
Hello all
Christie specialist called today with my blood test results
Told me no sign of pp , I am in full remission
Despite cough & cold spent a very happy day
Would have had a glass of champers , but alcohol tastes disgusting !
Peter
PeterJames replied to the topic sct looming but pp plateau at 14 in the forum Treatment 12 years ago
Hello
I received an e mail from the International Myeloma Association ( the USA MM )
You can get on their web site to request regular bulletins
They have set up in 2012 a completely new research to find a complete cure for MM
This is now up & running with research from the USA & Europe
Clinical trials to start this year
This is more than…[Read more]
PeterJames replied to the topic my mum has myeloma. first time post in the forum Newcomers 12 years ago
Hi Ner
I was diagnosed with MM late last May
I had no symptoms at all & was diagnosed @ an early stage from an unrelated blood test , so I was more than very lucky
My pp at the start was 42
I had 6 x 3 week cycles of CTD , had little or no trouble with this
Then referred to Chistie for my SCT on .17th Jan , my pp at this point was 3.8 & my…[Read more]
PeterJames replied to the topic RCD Cycle 6 cancelled, SCT prep starts on monday in the forum Treatment 12 years ago
Hi Sarah Jane
Re injections , pinch an inch & slowly plunge needle in , do not hesitate, after 2/3 goes you will be able to do it blindfold
Virtually painless , sometimes you might hit someting & get very small amount of blood , sometimes a little bruising
Either way nothing to worry about !
Stem cell harcvest totally painless , don't drink…[Read more]