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 , most of the write ups were beyond me
Anyone else out there know of this test
After next appointment I will go back onto zometa , but appears I will not be on any maintenance treatment
At least my hair is not growing back green or bright orange following all the chemical warfare
Peter
Hi Chris
For some reason your post chops off what your pp was after 2 months !
Peter
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 off
Sorry I sneaked in under the radar , next time I wil ask !
Be good
Peter
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 me I would sue his a—- se off
Then as you watch the killer chemo go in , I thought once it is in , there is no draining it out !
Then 10/12 days in a pretty dark place
Had to laugh at myself , when getting urgent call of nature of the sitting down type
By the time I had unplugged the dose pump from the mains & dragged it into the WC , usually too late !
I have had a beard for nearly all my adult life , used to be ginger , then it all fell off & I looked at a stranger in the mirror
Family want a vote to see if it comes back & stays or I start shaving, believe me it's staying !
After 48 hours my neuts went from zero to 3.8 , so I was thrown out
Like you I told the nurses to do whatever , but get me into remission, if it meant pulling my toenails off , do it !
I found the best way to survive locked away on your own was to forget all about the outside world & concentrate on slowing my world down to the speed of a crippled snail , worked for me !
Then go home , forget it & get on with your life
After two weeks home bloods & bone marrow back to normal , after three weeks back on sat night curry
Only just cracked small amounts of wine & chocolate
All the best
Peter
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 & I don't mean your hair
My facial hair is just showing signs of re growth , must be spring !
All the best
Peter
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 places until this weekend , when to my astonishment our daughter treated us & two of our grand daughters to lunch, there I'd successfully had some white wine & chocolate, big step forward
Even some facial hair coming back for spring
I have an unproven theory that large places are more germ avoidable than small places !
So Trafford centre ok along with large garden centres
From your photo you look too young to be retired or is it 20 years old !?
So I am hopefully waiting for my blood test result this week
I will soon return to the zometa infusions, only had one , most likely at my local BMI hospital, only 10/15 mins away, whereas Christie at least an hour
Is your spinal problem from the MM ?
Peter
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 realise how lucky I have been with treatment & rapid recovery
Specialist says ,I have walked it
Week ago yesterday I had a blood test which will reveal how we'll into remission I am, result due next week
I would like to be told that I am in full remission , but specialist says he would be happy enough with a near miss
My pp @ start of SCT was 3.8
Specialist says whatever the result is now it won't alter any over time
Not really discussed any maintenance treatment , get feeling they are the vein , let well alone , but I will discus this at mt next appointment 23 rd March
Whether my excellent progress to date is an omen on remission , I doubt it
According to the USA side of things , lots of new drugs coming through the system , I would be happy with one that just keeps me in permanent remission , a dream or reality , we will see in time
All the best
Peter
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 very lucky with my rapid recovery from day one, determination is all !
Now waiting results of a blood test to see how good my remission is , will get this next week, if good news we are having a family celebration Easter Sunday
Mean while life virtually back to normal , resumed domestic duties & part time work
Just waiting for full sense of taste to return
Going to two day conference in York next week , being chauffeured no less.
All the best
Peter
Hi Jean & Frank
I had my SCT on 16 th Jan this year
The dose of maphalan, I called the killer chemo , should wipe out your cells in less than 24 hours , ready for the SCT
I was not in a very happy place for about 10 days , then they announced I was at point zero ie ,neutropenic
Soon got mouth ulcers & blistered lip , but they gave me saline mouth wash to use several times a day , plus I started drinking plenty of tea, that was a lifetime first
This seemed to clear the ulcers up very quickly
Not long after that my neuts picked up from zero to 3.8 in 48 hours
Came home after 16 days , bloods & bone marrow back to normal in less than two weeks
Now just recently got the itchy back, some things just don't go to plan
All the best
Peter
Hi Helen , Garry & Louise
Can't help re the cat only to say many years ago my sister had a cat with leukaemia , so they can get human type diseases
Re Garry's SCT I had mine done on 16th jan this year, in hospital 16 days
The first ten days were not much fun
Went off solid food & coffee from day one
With mouth ulcers & a very dry mouth I found tea very helpful
The neuts will descend to zero , you are then neutropenic , this does not last long , then the start to come back up again
Usually when you get to 1 they start thinking of your release date
I was lucky mine came up very quickly, hence only 16 days in dock
Now been home a month
Bloods were all normal with ten days of homecoming
Dry mouth & lack of taste last some time
Took me some time to get back on solid food
But now back on domestic duties & some business work
Just all be very positive
All the best
Peter (70 ! )
Hi Vicki & Colin
Fri was one month since I escaped from the Christie , at least I wasn't bed blocking, more bed messing !
Must admit I got a flying start , within two days of my neuts making a welcome return they were up to 3.8
On first review after one week all bloods / bone marrow were nearly back to normal , fully ok after two weeks
Ten days ago i really felt a big uplift , cough much improved, frozen neck unfroze itself & I started to want solid food
Sense of taste still someway to go , only have soup for breakfast ! As i have not yet cracked cereal , but back on coffee
First night out for curry with friends last night , tandoori mixed grill & I ate the lot !
We only live thirty mins from the Blackpool / Lytham coast , so back walking the sea front , not that far as yet , but drinking in the sea air
Consultant says I have walked through all the treatments & I admit I have been extremely lucky after reading lots of other posts
He also calls me , amongst other things , a tough old boot , but gangs up on me with my wife , i have gone back to work , i only do part time
Now waiting approx ten days for blood test result which will determine where my remission lies, the three magic words would be nice , but consultant not too worried if its a near miss
Hair still holding out , although I see a little bit of nose hair growing
There is to be a full family vote at Easter to see if the beard comes back or I go clean shaven , beardless they say makes me look ten years younger , but forty plus years with a beard I am undecided, mind you if family vote for the clean shaven look , I am stuffed !
Keep full of positive thoughts !
Peter
Hi Ann
I had my SCT on 17th Jan , then spent a not very happy 10 days, went off solid food , lived on soup , ice cream & yogurt
I found drinking tea was a great help for my mouth, was a total non tea drinker !
Also developed a bad dry cough & very stiff neck from being propped up on the lovely soft hospital bed
Started to loose hair , then part way through it stopped falling out, now got that tufty look
Been home three weeks, this week turned a big corner, as if a switch had been turned on, cough & neck getting much better
Eating proper meals , mouth not dry & taste returning
Both be strong , you soon come though it
All the best
Peter
Hi Vicky & Colin
Very well done re the really good news
The three little words we would all give our eye teeth to hear
I hope you have no more bad news for many years
All the very best
Peter
Hi Chris
Forgot to ask you or anyone else who can help
I still have a fairly dry mouth , little or no sense of taste so eating solid food not easy
Small amounts possible , my wife tempting me with all sorts with varying degrees of success
How long did your taste / appetite take to return
I used to have a more than healthy appetite , would eat anything , happy days !
Peter
Hi Chris
Had my second review yesterday, now two weeks post demob
Bloods all back to normal , further test in two weeks to check where I am remission wise
Slowly getting back on solid food , mouth ok , but little or no sense of taste,
They are trying to cure my nasty dry hacking cough , which I have now had for some weeks
Hair loss was strange, beard went , plus eye lashes, nose & ears !
But after loosing most on top , hair loss stopped leaving me with sides ! But I had tried to trim this very short thinking it was all going to fall out , now looks like a badly cut hedge !
So far so good , I hope !
Peter
