[PeterJamesParticipant]

Hi Anthony
I started my 6 cycles of CTD last year at 70
I said from the word go I wanted an SCT @ the Manchester Christie
70 seems to be the upper age limit for an SCT, not sure if this varies for NHS or Private treatment
I was tested , the important bits judged in good working order , fairly fit & active , still working part time & very positive
I think they take all this into consideration
Although I have a spare lot of cells on ice , I'm not sure if they would use them in 7 or 8 years
After my SCT my pp was down from 42 to 3 , which put me in good partial remission
Had I not had tHe SCT I think I would have just had the three monthly checkups
The SCT did finally get the pp to disappear , hopefully for a long time
You do not say if the chemo is dropping your pp
You certainly have up & down days , very down after dropping off the four days of steroids
My vision was blurred , otherwise I had few if any probs with the CDT, but everyone is different
After all this time my lowered immune system last Han has got me a dose of shingles this last few days, not pleasant as I have to sit on them !
All the best
Peter

[PeterJamesParticipant]

Hi Carole
I did not lose any hair with the cylophosphamide, it gave me a little bone pain which went as soon as i stopped it
The stem cell extraction is totally pain free , just boring to have to sit still for several hours at a time
I lost most of my hair on the top , but not round the side of, also beard dropped off, also some other areas
This started about ten days after the SCT
But it soon grows back , mine has come back a lot thicker & my beard grows much quicker!
I think you need to come out of denial & just say to yourself , i can beat this
Peter

[PeterJamesParticipant]

My hands shook until some time after SCT , now back to normal
The four days on steroids were great , great energy lift & all arthitic bits healed , Rambo with attitude said my wife
Then the day after for twenty fours hours , no energy whatsoever , just stopped & flopped !
On CTD my eyesight went very hazy , after the SCT a needed new lenses in glasses
Also , pleasantly hallucinated , usually involving members of my family
Had a laugh a the look on the faces a several ladies on the next table in our local coffee shop . Laid out my thirty odd pills ! Then gobbled them up in front of them, they were too polite to say anything to me !
Peter

[PeterJamesParticipant]

Hi Carol
If your pp is down to 5 after I presume 3 x 3 week cycles of 6 in total , you are doing really well
Mine started off at 42 & was 3 @ the end of the 18 weeks
I Think most people on this forum would advise you go for the SCT
I had mine mid Jan this year @ the Christie , their advice was it was a very positive life extender
I had no doubts about having it done
Yes , you will feel pretty to very rough for 1o/14 days , it soon passes & you begin bubbling up again
I now feel very well despite going down with a dose of shingles this week, again this will soon pass
Peter

[PeterJamesParticipant]

Hi Carole
You ain't demised yet , in fact a hell of a long way off !
Being blunt you need to give hubbie a short sharp course in obtaining the strength to help you , the carer is vital
I forgot to tell you , I think you should call the girls at Myeloma UK
They are very expert at advice re your treatment etc & would be able to give you considerable peace of mind
Do not delay , get in touch with them
Keep strong
Peter

[PeterJamesParticipant]

Hi Dai
I am a great believer in the theory , if it can go wrong it will
Where I come from that is know as b— y Sod's law
All the above is arranged by the mysterious
officialdom who run or wreck our lives
I reckon you must have nerves of steel , apart from those missing under your tooth
All the best
Peter

[PeterJamesParticipant]

Hi Carol
The news from your specialist must be very gut wrenching
Remember this disease takes us all in different ways , ditto the drugs we are given
There are many more on this forum who are far more expert than me , but as I understand it , if one cocktail of drugs fails to work they will try another
It would appear that your specialist is failing to keep you in the discussion " loop "
My advice would to get as much knowledge for yourself about MM
Make a list of questions before any appointment , if possible have someone go with you to help ensure that you come away with answers
It is very easy to forget what you wish to ask in the stress / emotion at your visit
You do not say which hospital you are attending & if you have a carer
Take a deep breath , grit your teeth & stay strong
All the best
Peter

[PeterJamesParticipant]

Hi Marina
I came out of hospital post SCT on 1st Feb this year
It was some weeks before I could manage solid foods, down to cough & very dry mouth & throat
I thrived on soup , jelly, ice cream , lots of soft cheese,
As long as you get down three litres a day of anything wet !
Now six months on I look & feel fine, time soon passes
As you say we are all different , there is no norm , you know your patient the best
Peter

[PeterJamesParticipant]

Hi
I did six cycles of CDT , which meant four days of steroids twice in each three week cycle
The effect on me , the most placid of people was to give me a huge energy boost , got rid of all aches & pains , also made me , the most placid of people fairly aggressive , my Wife said Rambo with attitude !
Then the day after I stopped taking them , down into the black hole , totally useless for the day , no energy to do anything , soon passed
Being positive is a great help
For the the carer ie , you , as with all carers, the stress & worry is mainly on your shoulders , not easy at all
Hopefully as time passes , it will get easier as you both see the benefits of the treatment
Most important, learn as much as you can about MM , via this site or the Myeloma UK girls
All the best
Peter

[PeterJamesParticipant]

Hi Tom
Just thought you would like to know , my hair has grown back very much thicker post SCT ,also my beard grows twice as quick as it used to
Where did it all go wrong for you
Mind you i am a bit jealous of your six month check ups, instead of every three months
That must be my next target
All the best
Peter

[PeterJamesParticipant]

Hi Sue,
My first bit of advice is do NOT go on the net re MM , lots of old & inaccurate advice that will frighten you to death
For financial advice I would firstly call the girls at UK Myeloma , they are very skilled at any & all advice
This site is also brilliant at advice & keeping your morale up
The more knowledge you get on MM the better
You say you are a positive person which a big plus
I agree with Dick re your hubby , to be blunt , his stress is the last thing you need at present
If it helps you keep waffling on , lots of us do , in turn you will get a lot of nice reply's
Have you got any other adult family for support
With my family the youngest Grandkids were given need to know info , bit difficult to explain loss of hair , then it all re grew
We got very creative with that one !
All the very best to you
Peter

[PeterJamesParticipant]

Hi Tom
I got the same cough, Christies told me it was the Mathalan cough , quite common ,
But it took me some months to get rid of it , tried many remedies but non worked
My very dry mouth also did not help , also kept me off solid foods for some weeks
In turn my coughing led me to retch up phlegm , never food, so I took to carrying my " retch kit " around with me , a bag with cardboard bowls & tissues.
Now just six months since my escape , feel as well as the proverbial butchers dog
No discernible pp in my bloods
Also just glad to find out the lesions In my left hip which i have been having Zometa for , don't exist , just a knackered hip due to wear & tear
I would much rather have this than Myeloma damage , so all my bones are clear
So now off to see a new hip man !
I hope you keep up with a good & quick recovery
All the best
Peter

[PeterJamesParticipant]

Hi Tom
Glad to hear you are out & about , more or less in one piece
Always good to get back in your own home no matter how good the hospital
I found it good to set myself targets , firstly to get back on solid food & get rid of the mathalan cough , both of which took some time , then to take the family out for a curry , go to a conference & finally take a holiday
The achieving of targets I think is a good milestone & good for morale, both mine & my carer wife
I hope you achieve good blood results on all the next tests
In a few months time you can smile to yourself & say I did that alright
All the best
Peter

[PeterJamesParticipant]

Hi Tom
Good luck tomorrow
After all your ups & downs you deserve a smooth passage , quick escape & good result
The time soon passes
I found lots of tea helped with the mouth ulcers & I'm a non tea drinker
All the best
Peter
P S : don't forget plenty of jim jams

[PeterJamesParticipant]

Hi Tom
Apart from sitting in the hot sun, over eating, getting p—d out of your brains, dancing until dawn & skinny dipping
What was it about your holiday you enjoyed
Peter

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