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 blood were fine , asked about my general state of health , I have to say under the circumstances it's pretty good , fully out & about , running jumping etc ( slight exaggeration !) eating like a pig , diet about to start , even drinking
Haematologist said she was not to concerned , test results can vary from test centre to test centre , the only way to achieve total consistency would be same test centre , same technician using the same test machine.
Babs
The maphalan drug can cause the cough , but it takes some getting rid of !
Several of us at the Christie had it
All the best
Peter
To Keith's family
Very sad news
Sincere condolences to Sue & all his family
He was a very brave gentleman
Peter
Hi Maureen
Please advise your e mail & i will send on the article
All the best
Peter
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 remission , being told that happy word is one very emotional moment for you & family
Yes you will go through your front door , if like me weak , off solid food for some weeks, very dry mouth.
Also took me over two months to get back on wine
Anyone with any sort of cough , cold or infection was banned
I was told the neuts were the bloods little solders , the SCT treatment reduces them to zero , then they come up , 1 is you could be on your way home , can't remember the ideal range
Everywhere we go we take hand wipes & gel
Who cares full remission is the target
Go for it
Peter
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 check temp, if you get an infection , the cut off point for advice is 37.5c, if he goes above this & paracetamol don't work head for hospital ASAP
Always make a list of questions before you see specialist , otherwise you are bound to forget some
Re my having standard myeloma , I did a bit of quick research , there are three grades , put very simply they are , very bad , bad & standard , standard being the easiest to treat
The three types are defined by some chemical measure , none of which I had a clue about
I took double your dose of dex & thalidomide & I did me no harm , more like the world of good !
Peter
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 congenital spine problem , after several ops over the last 50 years ! Pain Probably due to scar tissue agivating the nerves in L5 vertebrae , epidural s are great help , just booked another today , a quick fix for a few months
Steroids during the CDT were really great for me , pain free for four days , twice per three weeks !
MM has given me two small lesions in left hip , so compared to some I got away very lightly
No gain without pain or as some souls say no upwards without the onwards !
Peter
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 or very near zero in just a few cycles instead of the full six , not sure why
My haematologist told me a few days ago that I had standard MM , which was easier to cure , never heard of standard myeloma before , next time I will ask for more info , unless anyone reading this knows .
Keep up the research
Peter
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 a lot of practice managed to get back on the red stuff , so bought a crate at Costco today
Keep on going upwards
Peter
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 my case & lots of others for the CDT to get it to as near zero as possible , then for the SCT to cause the final removal of all traces of the beast , I called it my piraña .
I got a very good booklet from the McMillan , also you can download loads of info from Myeloma UK , you must have the knowledge = power
I found that after four days on steroids, 40 mg/ day , on the 5th day I stil had my brain but no body , soon passed
All in all this MM is a bit of a bugger to put it mildly , but one way or the other we learn to cope & adapt
Go to the consultant with a list of questions , write the answered down & don't take no for an answer , that's why you need to get gen'd up ASAP !
Stay positive
Peter
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 at bay. My stem cell harvest was also no problem
My pp level at start of SCT was 42 & at finish was 3
Went for SCT mid Jan , in for sixteen days of which say ten were not that nice , most people have much the same post SCT problems , but all doable
Still get a bit tired , sense of taste not quite back , left me very weak but getting to grips with that & back doing some work , including my share of the domestics !
But who cares re the suffering , six weeks after my escape I was declared in full remission , with not a trace of the dreaded pp
Work on the theory no gain without some pain , then be totally positive
Vicki & Colin
Don't mention back pain , I have got the most repaired read end in the NW
Patched up with bits of steel , nuts & bolts, very few nurses in south manchester not seen my bare backside under the theatre light , usually see the scars , then say hello Peter how are you, even Wife had minor spinal op last year , we get two for price of one , had epidural just before SCT which helped , now ready for another
Us men were born to suffer
Lovely day today , gardening & a jog ( little liar ) at Blackpool
Peter
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
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
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
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 mouth & not yet that fit , nothing changed there then
It is a " life extender" giving me full remission, which is all I wanted
I was fully prepared for all the likely discomforts thanks to this site ! Also had huge backing from wife & family. Also could not fault all at Christies
Looking back I am very glad I had the SCT , there is a moment when the mathalan is going in , you think , that can't be drained out , no going back
All the best
Peter
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 your pp is at present
Mine was 3.8 at SCT
Four weeks post SCT i had a blood test, waited two weeks , then told not the slightest trace of the beastly pp
I was told that an SCT could greatly increase your period of remission, so in my view you are halfway through treatment. IE get it done sooner rather than later, if there are no medical reasons to not have it.
True to say that the first ten days or so are not the happyiest, but once the SCT kicks in you are on your way to being kicked out of hosptal
If have said many times on this site, be ruthlessly positive with yourself
, b—r the rest of the world , not easy !
Go for it
Kind regards
Peter
PS . 71 in June , but keep that to yourself
