[tomParticipant]

Hi Pennie and Andy

Thats a lot of breaks and fractures ?

I am pleased Andy is feeling better but if it was me "I would burn those logs that gave Andy all those problems 😉 )

Thanks for the boost you will have given others going on to that treatment 😎

Tom "Onwards and Upwards" xx

[PeterJamesParticipant]

Hi John
Very interesting to read your post, I hope I can get at leastv12 years
Diagnosed in June this year, just finished my 2nd of 6 cycles of CDT, PP down from. 46 to 10 which I think is quite good, SCT I hope in Jan @ Christies
I'm just a young 70 & still work ad a consultant engineer for a large laundry group with 40 laundries from IoW to Glasgow
I have to be available 24/7 but for 3 days per year" done this for the last 40 years
I hugely enjoy the work & have no intention of giving up, due to me having a series of spinal ops , I passed the legal / contractual side of the business nearly three years ago to an Engineering friend I have grown up with
Until 12 months ago I was driving 50000 miles per year, but can now do most of the work from home, although I like getting out & about
Compared to lots of other posts I seem to be having a very easy ride with my drugs
I have had some stomach gripes , a toilet within 6 m was very useful, immodium was very good , one very down day last week after 4 days of steroids finished.
I am fairly large, but very placid but steroids turn me into Rambo with attitude, also get rid of all my arthritic bits
I sleep very well , eat like a pig , completely addicted to plain chocolate digestives, cookies , cake & pretty much anything else
Fish & chips three times / day would also be very nice
I guess with your job you are on duty 12 hours per day 7 days per week, presume it may slow down at the end of the season , but I can fully understand if you have an off day that makes life difficult with a busy business
Luckily I was diagnosed before the beast started eating my bones away, although my lower spine is bolted together with stainless plates , so that ain't going to collapse
But my wife & I have decided to slow down, spend the money , until all gone & then give ourselves to the state
I am going to the Manchester open day 22 NDT Sept, my main interest will be in research , where are we at with a drug that will put us all into permanent remission, how far off is this , the progress seems to have been immense this last 7 or 8 years
Very interesting to hear from someone who has been in remission for so long
All the best
Peter

[penniechapmanParticipant]

Hello everyone. Just thought I would bring you up to date with Andy's news. He is on cycle 4 of rev / dex. and the last month has been calm. He had a couple of days when his temperature went up to 38.4 and we had to go to hospital, but after constant watch over 6 hours and iv antibiotics they sent him home on each occasion. Today he saw the consultant who is pleased with his progress. She has given him some calcium tablets to chew because he has been getting cramp in his hands. I hope this news will keep those of you on this regime confidence in the results.
Best wishes,
Pennie and Andy.

[NettieParticipant]

HI Penny
Your post is very reassuring. I am about to start cycle 3 and I am still getting just about all the side effects – especially the cramp!!! I had never had cramp in my hands before, really weird!:-/
I have tried quinine but they give me bad headaches and no one has ever suggested calcium tablets. I will ask my haematologist for some on monday.
I am so pleased things are calming down for Andy now that he is on cycle 4 – it gives me hope 🙂
Nettie

[penniechapmanParticipant]

Hi Nettie – how interesting to read your story! I read it out to Andy and he says the calcium tablets have really helped – in two days! So definitely mention it to your consultant. The week he had off treatment went quite well and managed to keep up his walking and got back into cooking breakfast! Do hope everyone can take heart. Good luck to you.
love Pennie and Andy

[daisychainParticipant]

Hi keith

Interested to know how you're getting on? had my 2nd SCT in feb with revlimid maintenance tolerating it well. When did you relapse from your 2nd SCT and long did it work for you?

Dawn:-)

[KeithH17Participant]

Hi Dawn, just read your post regarding Rev/sct treatment. My first sct I achieved a complete response so no maintenance which lasted 2yrs 4mths. My second only lasted 7mths and I was then put onto Rev/Dex in June this year in which time my PP's went from 29 to undetectable but at a cost. The steroids have hammered my body and I have suffered muscle wastage which is common with a high dose of Dex. I have also had to spend time in hospital with infections. The steroid dose was cut after 2.5 mths instead of the usual 4 because it was causing my glucose levels to rocket and I had to start injecting with insulin. Now that the dose has been reduced I feel much better and the sugar levels have returned to near normal so no more insulin. After my first Transplant I felt really well in myself apart from where I've had the bone fractures where I had RT after diagnosis in 2007. I've spoken to and read about patients who have had 5,6,7 years from a first transplant and 3-4 yrs or even longer from a second although this is much rarer. MM is very much an individual disease as we all know so you just hope you will be one of the lucky ones. My first gave me an average remission although the second was never anywhere near as good.
I hope you are one of the lucky ones Dawn and you get one of the longer remission times.

Take care of yourself and if you want any advice then you only need to ask.

Keith.

[penniechapmanParticipant]

Hello everyone – I have just been catching up on news from everyone. Good news for you Tom! Great!
Well – from us here – Andy has had a rocky few months. He didn't get to the end of his 4th cycle because he was taken into hospital with diverticulitis in October – he had to have an emergency colostomy – so now has ' stoma stan' attached. He is coping well, but a bitter blow after going through the summer. But, all is not that bad! He continued to have monthly blood checks and last week the consultant informed us that there were NO paraproteins and that he doesn't need to go back onto treatment. This hopefully means that he can have a stoma reversal later this year. The diverticulitis was not linked to treatment and was just a very unlucky coincidence.
We were also told about some new treatments that may be available and expect to be discussing everything with the consultant when we go back in 2 months!
Good luck to everyone –
Pennie and Andy.

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