[PeterJamesParticipant]

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

[PeterJamesParticipant]

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 with some foods , still trying to get rid of cough I have had pre SCT, specialist says mathilan can cause it & will eventually go
Still hopeful on the red stuff , but no success as yet ! I try on a regular basis but might as well be drinking vinegar !
I reckon Tom had regular infusions of booze through his Hickman line
Peter

[PeterJamesParticipant]

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 symptoms
The longer the MM rampages round your body the harder it gets, yet the medical profession seem at times to miss many clues until it has a real hold on you
Not too sure if anyone knows how or why you get MM or why it comes back at totally different time scales
I had an SCT in Jan this year at 70 , still have another dollop of cells in the freezer
Peter

[PeterJamesParticipant]

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

[PeterJamesParticipant]

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 !

[PeterJamesParticipant]

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 day after I stopped , I was physically very down & spent most of the day lying down , totally no energy , after 24 hours bac,k to normal
Both be positive , you can & do get through it , this lot posting are also a great help !
Hope this helps
Peter

[PeterJamesParticipant]

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 , busy puking into the paper bowl, as you do , this lovely night nurse came in & cuddled me as I puked !
Well & truly beyond the call of duty
If I had been under your evil first consultant ,the person on the morgue slab would have been him , with the pen he was writing notes with stuck throug the top of his head !
Usually I am a kindly placid old engineer , but my long gone ginger hair & temper to go with it , would have done for him
Peter

[PeterJamesParticipant]

Hi John
How did your result go ?
Peter

[PeterJamesParticipant]

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 post SCT be careful who you rub shoulders with !
All the best
Peter

[PeterJamesParticipant]

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 poison put in if it would orange or another bright colour !
I can taste strong soup, cheese & raspberries , also back on coffee
I can still get tired but I am trying to live a normal life
All very worth it when you emerge from the treatment tunnel
Peter

[PeterJamesParticipant]

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 worth a good read , particularly the press release
Peter

[PeterJamesParticipant]

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 consultant said I was in good partial remission
I should get the result of a blood test this next week to see if I have achieved full remission, which would be very nice
Consultant at Christie not too worried if we get a near miss
I was in Christie for 16 days for SCT , to be honest the first ten days were not that pleasant , most posts will confirm this
But as soon as your neuts come up to the magic no 1 , you are on your way home, tired but triumphant !
It is all doable
Being totally positive & determined is the only way
Within two weeks of coming home all my bloods & bone marrow were back to normal, now been home six weeks , still not got full taste back , but that is usual , just disgraced myself & caught first cold for over a year
All the best
Peter

[PeterJamesParticipant]

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 to much as you will be plumbed into the tubes , seated for a few hours !
I have posted fairly regularly re my SCT , just check my posts , I tried to be factual all the time
Just go for it & above all be positive , soon over & back home
You will be low for a few days, off food with sore mouth
But the SCT is a life extender !
All the best
Peter

[PeterJamesParticipant]

Hi Anne & Pete
I have been home five weeks this Fri
Had SCT on 17th Jan the year & rapidly descended into that uncomfortable place for 10/12 days
Soon got mouth ulcers & blistered lips , but escaped the worst by using saline mouth wash & drank loads of tea, I'm not a tea drinker just couldn't look at coffee, also went off solid food from day one. Specialist said I was a fairly rare ( old ) bird to
escape morphine & feeding tube
Lost all sense of taste & had a very dry mouth
Once home I was still off solid food for 2/3 weeks , got going on spicy soup , little pots of custard & rice cream, also could taste strong cheese
I could taste ginger beer which I still drink
Really had to start again with my taste in food, used to be a see food & eat it guy ! Now back on curry which I can really taste !
Then moved onto warm , juicy spicy chicken, ditto sausage , poached egg
Wife got very creative to get me going
Luckily all my bloodsp/ bone marrow were back to normal within two weeks of returning home
Was very tired for first 2/3 weeks, now ok
My advise would be to set little targets to achieve day by day & with grim determination get there come what may
Success at all costs !
All the best
Peter
PS : crossed the finish line in 16 days !

[PeterJamesParticipant]

Hi Tom
I am on Facebook , courtesy of middle granddaughter , don't really use it, but if she is round tomorrow we will crank it up & put a pic on
My proper name is peter Stevenson , but that name was taken when I signed up on this site , James being my middle name
Watch my Facebook space !
Don't bother being good , that's boring , just off to measure my hair growth
Peter

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