Hi Tom ( jnr)
Good luck on Mon with SCT , if you do as well with this as your harvest you are onto a winner
I found it somewhat strange watching the killer chemo going in , thinking there is now no going back
My advice would be to crank up your positivity to maximum & be relentlessly cheerful !
The key is mental strength & agility , so you should be ok !
On a practical front I went off solid food from day one ,so had lots of soup , ice cream etc
Re mouth problems ,I am convinced mine was mainly avoided by drinking lots of tea, I am not a tea drinker , maybe the tanning in it helped
We all feel off for a short time , but it soon passed for me , ditto hair loss , but who cares , it grows again , depending on how much you have at present !
I left the Christie on 1st Feb & now feel very healthy apart from two small leasions on my hip
Very much back to normal & determined to live a normal life on my terms
One last piece of advice , I took loads of pyjamas , one lot for nights & posh ones to entertain during the day , pyjama trousers can be lowered in a milli second , try that with ordinary trousers , mark my words !
All the very best
Peter
( snr )
Hi David
I agree with the regular siesta program , I can sleep on the proverbial bed of nails , must admit to less nodding off as time goes on from SCT
Re hols! We decided to try UK for first trip since Armageddon , so on Sat raced off to the I o W , found lovely apartment overlooking Cowes marina , for us the total journey was seven hours , plus lugging baggage at both ends , left me a bit tired at end of the day, but more than worth it to break free from our local area of hospitals & doctors, weather great as well .
Vicki , I would say your Colin is more than overdoing it , do those hours include travel , is the job stressful or physical , either which way , slow down ! I thought I was a tough old git , but I'm impressed with Colin
Take up gardening , fresh air & exercise , it's a very good recovery program
All the best
Peter
Hi Tom
When they harvest your cells , try not to drink too much as you cannot get up plus you have tubes in both arms , my nurse offered to help , but !!
It's totally painless & very boring , take a book
Re hair , four months today since my escape from Christie , then more bald all over than hairy
But today beard grows like mad, quicker I think than pre SCT , hair on head , nose , ears ears , seems to be growing top down if you get my meaning without too much information
I viewed my SCT as the final furlong on the way to a better life & so it has been proved , well at least for the last few weeks !
With luck you will have more cells than enough in one or two session
Peter
Hi David
Well done you! all things are possible,even with mm!
You do need that travel insurance after all
We have decided not to go foreign until later in the year, so off to isle of wight tomorrow for a week
At least we get a short cruise !
Peter
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 meet Dr Cavet at the Radisson Blue Sept open day last Sepember, really good talks plus break out session , you should come to this coming Sept day
Re support groups , I have been to the Bury Group once pre SCT , I was going to the last one held this week , but hit last minute snag, so unable to go, the next one is on 2 nd July & on 12 th Aug Dr Cavat is giving at talk , I will certainly go to that meeting .they meet from 1 to 3 pm
It's nice to met fellow sufferes inthe flesh rather than just posting on this forum
Perhaps we should have a forum reunion
If the Dr Cavet meeting is of interest to you we could perhaps meet there , I have yet to meet anyone of this forum .
Two other groups have recently started up , greater Manchester , just round corner from Christie , but they meet from 7 to 9 pm , I'm not too keen finishing a meeting at 9 pm then nearly one hour drive home , the other is at Salford , I am going to e mail them re the content of their next meeting , they meet 2 to 4pm
Now limbering up for the great swim , also working very hard in then garden as it is now serious planting / growing time time
Peter
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 weeks getting back onto solid food
But it is life extending & leaves my in GPR with a pp of three
Now nearly four months on from my escape I feel very fit & well
Any minute I will be 71 , the new 40
All the best
Peter
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 gone , I'm hoping this lasts some months , before I have another one
I need to experiment how far I can walk with the two small lesions in my hip, but swimming next week.
I had one dose of Zometa per stem harvest , then consultant said they would stop until three months after my SCT
My Christie Consultant said they did not usually do post SCT BMB because one bone might be clear , whereas another might have some pp in it. I was also told by Ellen at UK Myeloma that the mathalan can be active in your system for up to six months post SCT
Have you been to the local support group meetings
Peter
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
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 knows when this will happen
Peter
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
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 claim , ie , is deducted from the claim
The standard excess for wife & self is £60 each, only if we make a claim
For me , if i were to make a claim against my mm , the excess is £750
Hope that helps
Peter
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 through, from A to Z , also went through our other conditions , nothing too onerous .
The premium was just under £490
Excess for any mm claim was £750 , otherwise excess was a lot less
Hope this helps
Peter
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 !
Two small leasions on my left hip are the only bone damage , bit painful but hoping zometa will help , just had first dose.
We do try to walk each day , often at Lytham. Trafford Centre sometimes in darkest winter ! Ie , no hills.
I also do some stretching / bending exercises on getting up
In next few days I will also go back to swimming at local hotel , used to do three times per week , even using small fitness room walking machine plus few minutes on cross trainer . Those were the days !
Also throttled work down to almost nothing , which is a novel experience
Peter
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 athlete per SCT
Peter
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 establish a data base, two weeks later I got result , pp now at 3
All other blood readings , thirty plus were all good, general health pretty good apart from two small lesions in hip which are a bit painful
Heamatologist said she was not concerned & would retest in two months
She said the pp would float up & down a bit
She said other bloods would not be so good if the beast was back, also I would not feel so healthy
I must admit to being a bit shocked to be told the pp was at three , perhaps deluding myself that I would not hear the word for a long while !
But I guess we have to get used to these ups & downs & get on with life
Perhaps after a few of the monitoring s I will see a pattern
All the best
Peter
