https://forum.myeloma.org.uk/members/PeterJames/activity/ Activity feed for PeterStevenson. Tue, 21 Apr 2026 13:00:47 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 d6845243d4cb95386e6fc2af7eea0582 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-/page/2/#post-102608 Sat, 25 May 2013 23:10:22 +0100 Hi Chris
Re Aciclovir , as we were both treated at Christie , each consultant must have different approach , I took the drug for approx three months , no mention of shingles !
I was under Dr Mike Denis , clinical director at the clinic , got superb treatment from him & his team
Called back this week with box of chocs for the nurses.
I did…[Read more]

]]> 0aa35821cc070ce4dc9d04374c0df1bd http://www.myeloma.org.uk/forums/topic/sct-husband-still-unsure-can-anyone-help#post-102617 Fri, 24 May 2013 21:56:36 +0100 Hi Gill & Dave
Without a doubt , go for it
I had mine at the Christie on 17 th Jan this year , in for 16 days
The first 10 days or so aren't the happiest of your life , but so what
Once your neuts. start to rise from zero , you are on your way back, to this world & back hoe when they pass 1
Yes it leaves you somewhat bald ,tired & I was some…[Read more]

]]> 19ac09136e7e5a0d845dee8750e06814 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-/page/2/#post-102606 Fri, 24 May 2013 21:44:47 +0100 Hi Chris
I think my main problem is the scar tissue from previous spinal ops ( not mm related )
The irritates the nerves coming out of L5 , therefore no further ops possible or wanted
They have a least cured the main , what I call electric shocks which went down both legs
Since epidural two weeks ago , a lot of the minor electric shocks have…[Read more]

]]> 7bee3a5e616dd905b4d6c83a3ab6c52a http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102603 Fri, 24 May 2013 21:32:35 +0100 Hi Alex
I would be very interested in the details of your exercises
I am also going back to swimming next week
E mail : peter@peterjstevenson.co.uk
Thanks
Peter

]]> e0f46892e5e6c2a4fe4bd1311a3bfac3 http://www.myeloma.org.uk/forums/topic/what-constitutes-a-successful-sct#post-95269 Fri, 24 May 2013 20:48:35 +0100 Hello all
I suggest someone else tries " now i can travel"& gets a quote
Mine was very reasonable considering our other pre existing medical conditions
]I would have thought there was little difference in their eyes between full remission & good partial remission
At some point whatever the remission type the beast will return
Not that anyone…[Read more]

]]> 1cd0128d55069470eeb69917aac7ce3f http://www.myeloma.org.uk/forums/topic/what-constitutes-a-successful-sct#post-95266 Tue, 21 May 2013 09:22:12 +0100 Hi David
A further point
I got nowhere trying to do the online application forms
The best result was with a direct phone call
All the best
Peter

]]> b067103e2fa928a18445bca45cf0da9b http://www.myeloma.org.uk/forums/topic/what-constitutes-a-successful-sct#post-95265 Tue, 21 May 2013 09:13:19 +0100 Hi David
I was quoted the fee of £460-68, which i have a ref number for & can pay when we book a holiday, we are going to the i o w in two weeks time , only for a week , but i'm not bothering to take out insurance as we are relatively close to home & now all paid for , i would take it out if going abroad
The excess's only comes into play if we…[Read more]

]]> 3660bcb4f3ea49224232b74224464908 http://www.myeloma.org.uk/forums/topic/what-constitutes-a-successful-sct#post-95263 Mon, 20 May 2013 23:19:21 +0100 Hi Chris
Re travel insurance , I got a quote from " now I can travel " ) 0845 2307 155 ) in march this year
This was for a 12 month insurance , both wife & self are 70 , have other per existing conditions
They are very aware of mm , they contribute to UK Myeloma
I was not asked re my pp level , I just explained the treatment I had been…[Read more]

]]> 7c3cd6c67931ce1c01a5b623f15f3e06 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102598 Sat, 18 May 2013 21:29:54 +0100 Hi Chris
I have Tingly toes more on RHS than left
I had epidural last Mon to kill off nerve pain , specialist thinks it is scar tissue from several ops , nothing to do with mm
At least the three vertebrae above L5 are going nowhere , all bolted together, most likely I will have two per year
If I could walk six miles I would give myself a medal…[Read more]

]]> 0639f7f4cd1c187f5648affcb05b4bc9 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102596 Fri, 17 May 2013 23:10:36 +0100 Hi Chris
Thanks for your info
I guess having got to zero , it would have been nice to stay there for a while
How do you feel now as you are a few weeks ahead of me
Stability is what we all want ,but I was relieved that all my other tests on my bloods were ok & I feel pretty good
My main concern is now to get fitter , not that I was an…[Read more]

]]> 9126dbd785cf6ee81f7fc5c8ece97c58 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102592 Wed, 15 May 2013 22:15:42 +0100 Hi Rach
I had my SCT on 17th Jan at the Manchester Christie
In for only sixteen days, blood test at Christie mid March revealed no discernible pp, said I was I good full remission
Then referred back to my local BMI near Blackburn who diagnosed me luckily very early on then did CDT
My Heamatologist there did a blood test mid April to…[Read more]

]]> da1dfd05e87bac08192de7a1a671cfaa http://www.myeloma.org.uk/forums/topic/full-remission/page/3/#post-102170 Thu, 09 May 2013 19:39:31 +0100 Hi Dai
Life is full of ups & downs !
My last Christie blood test I think was early march , showed no pp, so I was sacked & went back to my local BMI who did the initial investigations then the CDT
Local Haematologist took blood mid April do establish a data base, the result showed pp at 3 !
So much for zero pp
All other 30 plus bits of…[Read more]

]]> a65783b3d9f9be97b0c740b29d6b9067 http://www.myeloma.org.uk/forums/topic/keith#post-95199 Mon, 06 May 2013 23:03:13 +0100 To Keith's family
Very sad news
Sincere condolences to Sue & all his family
He was a very brave gentleman
Peter

]]> 1c22db25a6c9d7c62b11c80fd2f84a8b http://www.myeloma.org.uk/forums/topic/questionmaintenance-treatment/page/2/#post-94419 Mon, 06 May 2013 09:23:44 +0100 Hi Maureen
Please advise your e mail & i will send on the article
All the best
Peter

]]> 32fdbe1355b85f44032e2595ba1c59c8 http://www.myeloma.org.uk/forums/topic/after-stem-cell/page/3/#post-94920 Sat, 27 Apr 2013 20:08:03 +0100 Hi Mary & Charlie
What's it like coming home from the SCT ( nearly in one piece ) , bloody marvellous to be back in your own home
I was superbly treated at the Manchester Christie, in & out in sixteen days
They did their best to kill me off with toxic chemicals , but within six weeks from my escape I was beaten into submission , sorry full…[Read more]

]]> 38f368ca1d456515b22e48c5e2f3b756 http://www.myeloma.org.uk/forums/topic/new/page/6/#post-87576 Sat, 27 Apr 2013 18:59:14 +0100 Hi Ann
You are on chemo as you are taking two of the three chemo drugs for the CTD course , you are on T & D but not C !
You should ask why not , I also took several other drugs some , mostly daily , plus daily injection for DVT
I was also given two emergency packs of anti bios , plus emergency numbers for advice , also bought thermometers to…[Read more]

]]> e5045b8d28b12fca18787deda3af75e1 http://www.myeloma.org.uk/forums/topic/new/page/4/#post-87557 Thu, 25 Apr 2013 21:06:50 +0100 Hi Mavis
I'm sure she said cure , but equally sure she meant remission , but maybe she knows someting we don't
I will torture more info out of her next Weds 1st May & advise
She seems very well connected & travels all over the world to seminars etc
Together with the Christie the team have been superb for me
Most of my pain is due to a…[Read more]

]]> d887fdfb236aee6a271f550499afb1b4 http://www.myeloma.org.uk/forums/topic/new/page/4/#post-87555 Thu, 25 Apr 2013 20:37:34 +0100 Hi Ann
My pp went down steadily throughout the six cycles , approx. 25% per cycle to arrive at a final 3.8
But everybody is different , zero is nice but not necessary before your SCT
I was told by Christie's clinical director that people seemed to get a better recovery if the pp fell steadily through the six cycles rather than falling to zero…[Read more]

]]> 7cc609aca316207988bd208328ea9cca http://www.myeloma.org.uk/forums/topic/anti-biotics/page/3/#post-94871 Tue, 23 Apr 2013 23:24:41 +0100 Hi Tom
It's that bald head of yours given you an infection this cold weather or drinking contraband vodka
Wouldn't happen on my side of the hill
What's wanted is a onesie with a flexible hoody to allow for hair growth
Nowspring is here , new growth springing up on beard , top of head also started , thinking of shampooing with grow more
After…[Read more]

]]> cc82aef0378af61e30497719c127d74e http://www.myeloma.org.uk/forums/topic/new/page/4/#post-87546 Tue, 23 Apr 2013 23:08:54 +0100 Hi Ann
Simply put the Para protein is the rougue cell / bug that devours the good cells in the bone marrow & also attacks the bones like woodworm , ie eats them away
This can go on for quite a long time while you can feel perfectly healthy with no reason to go to the docs.
On discovery my pp was 43 , pre SCT just under 4
The trick is via, in…[Read more]

]]> ffad36a370f5e57b8e9764f5730baea7 http://www.myeloma.org.uk/forums/topic/new/page/2/#post-87529 Sat, 20 Apr 2013 21:20:53 +0100 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]

]]> ee2b2eaf229f555c698a8580596ba575 http://www.myeloma.org.uk/forums/topic/new/page/2/#post-87520 Fri, 19 Apr 2013 23:12:27 +0100 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

]]> 82e1b7e72a580537673efe908abe9065 http://www.myeloma.org.uk/forums/topic/new/page/2/#post-87519 Fri, 19 Apr 2013 23:04:47 +0100 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

]]> 2eb9a6d6566d1d547325b95dfe4a69f1 http://www.myeloma.org.uk/forums/topic/new#post-87502 Fri, 19 Apr 2013 18:46:57 +0100 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

]]> db10628527ba250dd00cef8b046f785a http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-given-goahead#post-102396 Thu, 18 Apr 2013 18:22:35 +0100 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]

]]> a894e57a770d55d5998fd7c4263d9ae2 http://www.myeloma.org.uk/forums/topic/newly-diagnosed1354018572/page/2/#post-87010 Fri, 12 Apr 2013 11:42:41 +0100 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]

]]> 2d4b426b2e462c268042af9b5bec824c http://www.myeloma.org.uk/forums/topic/full-remission/page/2/#post-102161 Fri, 05 Apr 2013 20:18:17 +0100 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

]]> ee2ee380a6c22351f95cfcc7fad506ca http://www.myeloma.org.uk/forums/topic/full-remission/page/2/#post-102158 Thu, 04 Apr 2013 21:02:49 +0100 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]

]]> 0181bec27d457c37d10c175346c29966 http://www.myeloma.org.uk/forums/topic/aggressive-myloema-in-younger-patients#post-94761 Thu, 04 Apr 2013 20:43:24 +0100 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]

]]> f274749b1b2a6dd40b0045aa2e325308 http://www.myeloma.org.uk/forums/topic/myeloma-xl-trial#post-94756 Wed, 03 Apr 2013 22:17:49 +0100 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

]]> 6974f846426d52e875992e59f9adf450 http://www.myeloma.org.uk/forums/topic/questionmaintenance-treatment/page/2/#post-94417 Wed, 03 Apr 2013 22:13:03 +0100 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…

]]> 3c45a417d7b98ef6b0f1da95822d45ff http://www.myeloma.org.uk/forums/topic/myeloma-xl-trial#post-94754 Wed, 03 Apr 2013 22:06:00 +0100 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]

]]> 957800062665baee2cc85cd6abef754d http://www.myeloma.org.uk/forums/topic/everybody-has-a-story#post-94650 Fri, 22 Mar 2013 21:53:55 +0000 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]

]]> 6e6c93e949081f617cb82b7533a4bf1c http://www.myeloma.org.uk/forums/topic/full-remission#post-102150 Fri, 22 Mar 2013 21:39:47 +0000 Hi John
How did your result go ?
Peter

]]> 6dcc40b734b2fef8587bd2b61e1a41e0 http://www.myeloma.org.uk/forums/topic/chicken-pox-#post-94634 Fri, 22 Mar 2013 21:34:29 +0000 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]

]]> 2cd1012df287ee0bf5f4c47032aaa965 http://www.myeloma.org.uk/forums/topic/franks-sct-take-2/page/3/#post-102052 Tue, 19 Mar 2013 20:59:59 +0000 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]

]]> 5ddebbdc368b8ff79972564bdb6492ef http://www.myeloma.org.uk/forums/topic/full-remission Mon, 18 Mar 2013 20:23:24 +0000 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

]]> f366e61128ad680185141f76b8dda117 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/3/#post-101603 Sat, 16 Mar 2013 21:32:23 +0000 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]

]]> 164afa93a76ab8fdee8d3b59055a8e0d http://www.myeloma.org.uk/forums/topic/my-mum-has-myeloma-first-time-post#post-87423 Sat, 16 Mar 2013 20:37:01 +0000 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]

]]> b61ac7b1df94850d3483034a2ac3bd24 http://www.myeloma.org.uk/forums/topic/rcd-cycle-6-cancelled-sct-prep-starts-on-monday#post-102096 Tue, 12 Mar 2013 22:01:13 +0000 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]

]]> 9a5b3d1d4ef37d23c6d46d2adf54d534 http://www.myeloma.org.uk/forums/topic/petes-sct-done-now-the-recovery/page/3/#post-101860 Tue, 12 Mar 2013 21:31:03 +0000 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…[Read more]

]]> 4bee1db701a99d2aac6c1b433030a0e1 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/3/#post-101601 Tue, 12 Mar 2013 21:10:19 +0000 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…[Read more]

]]> 3653316f044d4eb0acb6c780b24d63f8 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101586 Tue, 12 Mar 2013 12:52:03 +0000 Hi Chris & anyone else up & about !
Just has a report from my Christie specialist
My last pp Assessment said i was in a " good remission " which is not a complete remission
The last blood test will reveal if I have achieved the magic three words
This test is known as an electrophoresis
Checked web & this seems to be something to do with DNA…[Read more]

]]> 2482552e457d22c1107f0c8fac8f94b9 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101584 Tue, 12 Mar 2013 10:46:07 +0000 Hi Chris
For some reason your post chops off what your pp was after 2 months !
Peter

]]> 3da5f6da9371bcc147a51fd510fb1f08 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/3/#post-101599 Mon, 11 Mar 2013 21:11:01 +0000 Hi Tom
You have to remember that on our side of the hill we are very sneaky
15 stone ok , unless you are 4-6" tall !
The wine & chocs were taken several hours apart !
Going to rub grow more into beard to encourage growth
Very cold on top without much hair this weather
Outside today @ -3 c plus windchill I think spring is a long way…[Read more]

]]> 0c9eda74ce464d562ec8f0af22b4eddf http://www.myeloma.org.uk/forums/topic/franks-sct-take-2/page/2/#post-102038 Mon, 11 Mar 2013 21:02:27 +0000 Hi Dai
I only escaped from Christie five weeks ago so memories are still very clear
You are right re the NR contract
Pre SCT , after all the tests , the consultant went over all the pros & cons, passed me the first of several consent forms to sign
The small print at the bottom said we can also kill you as we'll as cure you
I said if he killed…[Read more]

]]> d1aa7cdd00456c0b4b8bfd918360a33e http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/3/#post-101597 Mon, 11 Mar 2013 17:01:58 +0000 Hi Tom
My progress maintained, last weekend tandoori mixed grill, ate the lot
This weekend wine & chocolate , major progress , although sense of taste & dry mouth still not back to normal
Although I put on lots of weight , got to 112 kg, but did not lose anything like I expected , back on diet
Had a peek at your Facebook , you look quite thin…[Read more]

]]> e06cdac47e513b43372d5bd4954f57d6 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101582 Mon, 11 Mar 2013 16:56:17 +0000 Hi Chris
Did you attend Christie as private or NHS patient ?
I would have thought Christie should have done a blood test after approx five weeks to see where your pp was at
What was it pre SCT , did they say you were in remission or good partial remission ?
Your last posting misses off what your pp is now
We have avoided smaller crowded…[Read more]

]]> 1b3b9332962e183486b57982bc4becd4 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101580 Sat, 09 Mar 2013 19:18:26 +0000 Hi Chris
Now five weeks since my escape from Christie
Virtually back to normal apart from slight cough & still some loss off taste , specialist says this will take a few more weeks to come back
So I have resumed my domestic duties & back working part time, off to York next week for two day conference which will be nice
Reading other posts I…[Read more]

]]> b4efdc39a579acf420e2dc16962695eb http://www.myeloma.org.uk/forums/topic/garrys-sct-journey/page/2/#post-101972 Fri, 08 Mar 2013 22:42:04 +0000 Hi Vicki & Colin
Super human , thanks , I like that , told wife , she collapsed in hysterical laughter !
I'm not super fast , more slow & steady , tortoise & hare job
Consultant calls me a tough old boot , wife just calls me, actually would never have got this far without her pushing me on
Reading lots of other posts I realise I have been…[Read more]

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