Hi Tom
Did my 16 days at the Christie nothing but the highest praise for all the nurses & my specialist
Been home two weeks , bloods all back to normal , I have adopted your position , if specialist happy so am I !
In two weeks blood test to check where I am remission wise
Wife force feeding me to get me back on solid foods , although I have little or no sense of taste
Trying to get rid of nasty cough & get stronger , working part time
All in all so far so good
Peter
Hi Maureen
I had six three week cycles on CTD
The thalidomide dose was 200 mg every day
Twice in each three week cycle I had 40 mg of dex
This was really good , turned me into Rambo with attitude ,also got rid of all my spinal pains , they are nothing to do with the MM
After the four days on dex I had twenty four hours on a real physical downer , soon went
Not really any side effects with thalidomide , all in all I went through 18 weeks of poison very well, some do , some don't
Now two weeks since I left the Christie following SCT , bloods all back to normal
Is it worth you trying to get treatment at the Christie , Manchester , their private facilities are superb , as the nurses & specialists
All the best
Peter
Hi Carryanne
I was diagnosed MM end May last year , went onto CDT , six x three week cycles , had little or no problems ,loved the steroids , got rid of all my spinal pains , became Rambo with attitude , then on a downer for 24 hours after each four days of steroids
We have two children , now middle aged & five grand kids , the two eldest we regularly feed
But your immune system is down for part of each three week cycle then towards the end of the three weeks bubbles up again, then you start over again
We were told infections were not good for me & the family were told if you have any sort of cough cold etc , keep away , a good sneeze can propel germs up to three metres
The went into Christie for SCT on 17th Jan , for the first 10/12 days I was In a dark unpleasant place, then became neutropenic
Ie , no cells in bone marrow so open to any infection , visitors wore aprons , gloves & masks , then I bubbled up & within two days my neuts were 3.7 , extremely good result , I found tea helped my mouth ulcers although I could not eat any solid food , lived on soup & ice cream
Came home after sixteen days , very weak , minus some but not all my hair !
Just slowly getting back on solid food , mainly due to my wife's efforts
Had my first review on Fri & told I was I star pupil @ 70 ! Bloods very good & bone marrow about back to normal
Through all this anyone with germs are banned & I will be on a tight leash until the end of April
Was all this worth it , absolutely !
You have to be ruthlessly single minded to succeed , your determination will drag your body through it, you have to be a tough old b—- r
Don't be put off , do the SCT
All the best
Peter
Hi Carryane
Oops , Just realised my post to you is up a few postings , should have replied to your last post !
Peter
Hi Chris
For some reason the guest wifi blocks out my e mails, son has tested my iPad @ home & it works fine, very strange
I can use the forum to get e mails out, my blackberry is ok , but painful on longer mail
I have a very dry mouth, did have ulcers , but drinking lots of tea has cured them , I am not usuall a tea drinker but coffee tastes awful
Unable to eat solid food , but soup , ice cream & yogurt are keeping my weight steady , after a 6 kg loss , which I could well do with loosing a lot more
Now into hair loss , seems beard has to go , eyebrows & chest , not sure re the rest as yet
Doing ok re toilet visits until last night , which we will draw a veil over , not nice !
Hickman line out today , discharge tomorrow pm
Wife setting up security patrols round house & for next few weeks will screen all & sundry , I don't want to be overwhelmed for the first few days/ weeks
Life in the slow lane will be a novel experience !
All the best
Peter
Hi Vanessa
I was diagnosedMM at end may last year, did six cycles of CDT, without any major problems , them stem cell harvest early dec , again no problems
Came into the Christie for SCT on 17th Jan , with MM @3 , specialist thinks he will get me into full remission
Day 1 killer chemo injection which made me quite ill for the night , then next day in went the cells ,
I admit after that you need to tough it out as the side effects are not too nice
I am very nifty at getting to the toilet before disaster strikes , plenty of stomach ache , retching , mouth full of ulcers. Totally lost appetite within 24 hours of admission
Went neutropenic last week
But on mon this week those little soldiers popped up at 0.5 & today up to 3.3
If all goes well I may be thrown out this fri , now allowed to wonder around a little within the hospital
BUT , do not let the above get you down , go for the SCT
At just over 70 I am probably too old for a second go , but they do have spare cells
What I am is mentally very strong & determined to beat this beast, I have had superb support from my family
The SCT will extend your remission . By how long nobody knows , but go for it
As the others say you can recover for a good remission , there are loads of new drugs out there
Be strong
Peter
Hi Susan
Now you are here , welcome
I was diagnosed with MM at the end of may last year
My experience , along with a lot of the other good people on this site, is to get a much info as possible on MM
Be totally positive , you can overcome this & get on with your life , you can only look forward , not back as things were
Your life will change , but all not for the bad
I went on six cycles of CDT , without any probs, ditto extracting enough cells for two SCT's
You do not have to have an SCT , some people are not suitable candidates
But I was told in no uncertain terms that it would extend my life by a minimum of 18 months, possibly much more as as I had done so well on the CDT etc
Last thurs I went into the Christie Manchester to start my CDT
Thurs I had the strong dose of chemo, yes everyone but me smelt corn on the cob
Then on fri half of my stem cell harvest was put back in
All of these procedures are pain free , Hickman line is a few mins. Of discomfort
Now I'm waiting for my bloods to drop like a stone this week , which can make you be ill with infections etc, but then they pick up & soon after you will on your way home , in all probability totally knackered to start the slow build up of your strength
My view
If you can have it , get it done
All the best
Peter
Hi Chris & Tom
Thanks for your good wishes
My post popped up between two dated seventh Jan, not sure why
Anyway I am now locked in my cell at Christie
Presume today or is it tomorrow is classed as dat one plus following transplant
Would be nice to beat Toms record !
All the best
Peter
Hi to one & all out there
Came into the Christie yesterday , set upon straight away , Hickman , line installed & drugs into me in quick order
Late pm had my dose of killer chemo , but body did not take kindly to this , so late at night everthing went tits up
Super nigh nurse stuffed me full of drugs which by today did the trick, although I have lost my appitite
So today had the cels returned & gave strict instructions to get a move on !
Thanks Chris for your advice re ic lollies , sucked my way through the transplant
The nurses still remember you , is that good or bad ?
Now presume I will soon defend into a little black hole for a few days
Everthing to play for
Peter
Hi All
Sorry to be different but I loved my four days on dex at 40 mg/ day, twice per three weeks
Took them as early as possible to get best effect, first day after a few hours I could feel them kicking in
Energy levels went up , pains in old spinal problem ( none MM ) largely disappeared , so much so just had epidural to keep the effect up
Slept like a log, ate like a pig , no change there then , would you believe , put on weight
Quite liked the new aggressive me, normally very placid
The only problem was the twenty four hour cold turkey after each four days , total lack of energy
Takes all sorts
Peter
Hi Sarah Jane
Ask your consultant for a copy of your last blood test
Mine show my result & alongside what the normal range/ s should be
All the best
Peter
Hi Tom
Thanks for the tip , very interesting article
Sounds like some good new drugs coming out of the States in the next year or two, we just have to keep going
Where there's life there's hope !
All the best
Peter
Hi Daniel
Apart from your dads consultant , you will get very good advice from the Myeloma UK ladies in Edinburgh
You really need to give them a call ASAP, it's there help & advice you really need
I agree with other posts 6 years MM free is a good result
Not sure what you mean by lumps ?
At 17 you need a bit of family backup from your two older sisters ,or any other relatives , you should not be alone in this
All the best
Peter
Hi Chris
Thal = Thalidomide ?
Peter
Hi Tom
Apart from a slight cold over Christmas I am fitter than the butchers dog , not that his beast has MM
Wife has fattened me up over Christmas ready for any weight loss
Really determined to get back on alchohol , so it will be worth the diesel to get that pint off you !
Specialist thinks I am a tough old git , although with my poor hearing , he might have said old git only
after my older bride than yours celebrates her memorable birthday on the 16 th, in I go on the 17th as I have nothing else better to do
Luckily like you , I am one of the worlds greatest optimists, never stressed or depressed !
All the best
Peter
