Hi Karen
I finished my sixth cycle of CDT on 7 th Nov
I had been on 4 thalidomide / day & 20 x 2 mg/day steroids on the dex days
After little more than two weeks my eyesight is pretty much back to normal ,shakes & unsteadyness gone , brain has come back,wife disagrees on that point ! Feet still a bit itchy , all in all ,considering all the poison taken , iam happy with progress so far
SCT first stage has started with all the tests on body components, back in Christie on Mon to get the poison to urge all those cells to rush from the bone marrow to veins ,the harvest starts following Mon, I need to find 4 mill of the little devils ,not sure who counts them ,enough for two SCT's
I agree with all Dai says I his on the button post 23 rd Nov, very well said !
All the best
Peter
Hi Stewart
I finished my six cycles of CDT on nov 7 th, pp down from 42 to 3 , so a good result for me , also little or no side effects from all the poison I swallowed
Steroids my me hyper & very hungery, mind you I always eat too much,settled on a curry & carrot cake diet, no surprise that I put on 1.5 stone , fattening up for SCT
You & your wife should go to your local group meetings, there will be carers & MM sufferers there, also info days are excellent for info & meeting fellow travellers
You both need to totally focus on positive thoughts/ actions to get the MM kicked into remission,
i work part time , which I enjoy & it keeps me occupied , we also try to go out & do something every day, I think sitting around feeling sorry for yourself is fatal
UK MM site has loads of info on a whole range of subjects, also the American site
I was at Christies yesterday , hopefully if tests on my unfit body are ok i will start SCT dec 5th, then turkey leg in hospital !
Tom has the right attitude, not much hair but the right attitude, soon i will have even less hair !
All the best
Peter
Hi Karen
Treatment , I have a monthly infusion of Zometa , started last week
Also had my first appointment at Christies today re the SCT which I hoped to start in Jan
Had long chat with the clinical director , we both threw questions at each other
I have had a very good result from the CDT with little or no problems
Then he asked outright if I wanted an SCT, I said absolutely yes, apparently I am a good candidate for an SCT
Then he said we need to do it ASAP to stop the MM beast trying to make a comeback as I was now not on chemo, pp at 3
Next thing sent down for loads of tests to see if the old body can stand upto the chemo & hospital food !
Proposed start date week on Mon , which would mean I would be in over Christmas
Wife & self in shock !
It would be good for you to find your local MM group & go to the next meeting, take husband & get him up to speed
Also go the the next info group meeting near you , very good to meet others & pick up loads of info., also call MM UK & subscribe to the MM mag,
Stick with this site , beats the soaps !
You have a very wide cross section of good people in this club , free lifetime membership , lots of help & advice , a real moral booster
I told the hospital if I don't get to the queens telegram , I will sue the pants off the lot of them
Keep positive thoughts
Peter
70 & counting
Hi Kes
I have just finished last week my 6 cycles of CTD
Yes there are side effects which increase as time goes on, steroids made me hyper & very weak
After each four days,over time my eyesight went very hazy, feet cold , dithery & head was away somewhere else
My senior nurse at the clinic said it would take some weeks for all the drugs to leave my system , but already eyesight is a bit better & I have reclaimed my brain
I have my first appointment tomorrow at Christies to set up my SCT , I hope in jan
Do you have the support of partner, family friends. Do you work , which apart from money is company
I am a firm believer in being very positive in all things, including MM , not easy for everyone
I am very lucky to have support from lovely wife, family & friends , also still very busy working part time
Talk to the ladies at UK MM or your doc , do not let depression take hold
Park the M M in a box somewhere else for as much time as you can, only let it disturb your life for as little as possible, agian not always easy, when possible keep busy !
This site is great for support & advice, learn all you can about MM
All the best
Peter
PS : male & well past bus pass & sell by date !
Hi Pat
Tomorrow is my last day of six CTD cycles, on to SCT in Jan
Side effects .As time has gone on over the last 18 weeks, the steroids have made my arms & legs very weak
My feet feel cold , so I wear stocks all the time
My eyesight has got very poor, hearing , I wear two hearing aids , is down & my hands have got very shaky
Sleeping is not a problem, any place anytime, I find that my energy level can drop in an instant
Nurse says all this is all quite normal, I get differing views as to how long it takes the drugs to leave your body after completion of the chemo, today's view was six weeks, I was hoping for six days !
It would be interesting to hear other views
you are not alone in this exclusive club, we all suffer for the cause !
Follow Toms advice, onwards etc
All the best
Peter
Hi Vicki & Colin
I follow all your excellent posts & will be very interested to see how Colin goes on with his SCT
I am one week off finishing my CTD , compared to Colin , I hate to say but I have had a very easy ride, my SCT inJan
As others have said , all fingers & toes crossed
Best wishes
Peter
Hi Gill & Dave
Welcome to this very exclusive club you really did not want to join, membership is free !
I have just one week of my 18 weeks of CTD chemo, not had to many problems
As I am a lot older than you the steroids get rid of arthritus & give me a big lift , others have different or worse side effects
My feet are cold & a bit pins & needles , but so what, it's the end result that matters , so stuff the side effects
Steroids make you very weak & down after the four days iam on ,twice per three week cycle
Only use this web site or the USA one, the net will turn you grey !
Learn all you can , take questions to the consultant, ask lots. Knowledge is power
You are not useless , you have come to this site, my Wife has the same thoughts & I know She worries over me, but She has been a superb support along with family & friends, you do need your support structure
You need to be totally positive & focused
You do not say if Dave has any bone damage or other problems or what his pp is, coming down I hope
Mine started at 42 now. 4 with one more test to go, then SCT at Christies in Jan l I hope
You will get masses of advice & thoughts from many other people on this site , which I find is helpful & good company, when you have a rare cancer
All the best
Peter
Hi
I am on my last week of 18 on the CTD treatment
The only pain I had was the initial bone marrow sample taken from my hip
The drugs can be a bit mind altering, steroids effect people differently, even the daily injecting is painless
Unless your Dad was in pain from bone damage when he was diagnosed the chemo. is pain free !
Has your Dad been told what treatment he will be on
Use this web site for information or the American one , do not trol the net, that will get you worried as there is a lot of very out of date info
All the best
Peter
Hi Kerry
I am half way through my final 6 th cycle of CTD
I take dex , for four days at 40mg/ day twice per three week cycle
They make me very hyper, get rid of all my arthritic bits, so I do my jobs on these four days
But the day after I stop dex, I become very weak , arms & legs particularly don't want to work , lots of leg pains
As time has gone on theses downs seem to have got worse, not to surprising with all the poison going in this last 16 weeks
The down bit lasts about 48 hrs. Then I bubble back up
Although a lot older , i do not want to give up work , so I work on the good days, also would not want to let this menace get the better of me
Peter
Hi David
Very interesting to read your post SCT regime
I think I will set up an American style sealed prison visitor screen with phone contact only !
Did you go out just the two of you for a walk or car trip
How long before you felt well enough to take a holiday
Now on my final 6th. cycle od CTD, but I have been very cautious where I have been, no public transport etc
Like you at home or with family surfaces wiped with anti septic spray or wipe, so I have had 15 weeks trouble free
But I realise that after SCT we will have to be very rigorous
All the best
Peter
Hi Nettie
I was diagnosed with MM at the end of May this year, just stating my final cycle od CTD
I was told to avoid swimming pools like the plague , like you i enjoy swimmimg , also all public transport, boats & planes . Ie all crowded places
We Go early to quite resturants, I chance the Trafford Centre as its very large, avoiding it at school hols
Family / friends all told to keep away with any colds or infections, Family don't live at home, all sides enjoying colds at present
If I go out I wipe my bit of table with an antiseptic wipe, take antiseptic jell with me for hands
Maybe I am being over cautious , but not had a cold or any other problem during 15 weeks of treatment, touch wood !
All the best
Peter
Hi Pat
I also cannot find a DVLA single sheet
Macmillan did not offer me one , gave me local authority number to call
My Daughter works at the Ribble Valley Council offices , the do not have Henry Blue Badge forms , she gave me an 0845 number to call , probably same number as Macmillan
My next stop will be to see my Doc & call at local hospital which has a Macmillan office
Not sure what I am doing wrong , but a. Badge would be really useful
Older than Tom , never, mind you , I am, he is obviously very young!
Peter
Hi Kevin
I have just started my final sixth cycle of CTD , the dex really hypes me up & gets rid of all arthritic bits for four days , then a bit lacking in energy for two days after , everyone is very different
I also look forward to coming off the poison pills & getting back to normal, if it only takes a few days that will be great
Hopefully for a SCT in Jan
Then back on track for as normal a life as possible
Peter
David
You have spurred me on , anything you can do etc, anyway you are just a little younger than me , every little helps
Just started four days of lovely steroids, so sod it into the garden, which I really enjoy, got hundreds of daffy & tulips to plant in place of my now frosted dahlias etc, this year has been the best ever for colour, luckily all planted before I joined this club
Every time Ireland posts re failed bones I thank god I was found early before major bone damage, although my three lower Vertabrea were nailed together with steel etc when I was twenty, so they are going nowhere, but plenty of other places could give me grief
If you finish your garden early get over thote Ribble Valley, I will lend you a spade !
Peter
Hi Tom
Three teeth less now as well , was quite fond of them , they nearly filled me with Zometa today , two weeks early, I fled
Sorry about your hair, with all the stress in my career , I should be as bald as the proverbial badger, not that I do stress or worry beads. I leave the worrying to you younger ones
When it has all fallen out I will either modify my pic or drive over & buy you a pint, your choice
Keep on upwards
Peter
