Oh rats…..the double posting gremlin strikes again!

Carol, where I was treated in Poole,the moment my melphalan infusion started a trolley load of ice and ice-lollies were wheeled in beside me and I was told to suck as many as I could to keep my mouth constantly freezing cold.
As a consequence, I had no mouth problems at all. Keeping the mouth frozen seems to stop the chemo. damaging the delicate…[Read more]

Carol, where I was treated in Poole,the moment my melphalan infusion started a trolley load of ice and ice-lollies were wheeled in beside me and I was told to suck as many as I could to keep my mouth constantly freezing cold.
As a consequence, I had no mouth problems at all. Keeping the mouth frozen seems to stop the chemo. damaging the delicate…[Read more]

Thanks Stuart.
You learn something every day!

I tried to correct a spelling mistake a couple of weeks ago and gave up trying in the end. My whole message kept disappearing!

I still don’t like being a “Participant”!!!!

I don’t know about the legal side of not declaring such an illness, but I do know that if I ever felt the need to work again, there’s no way I’d not be totally honest with a potential new employer, especially if it were a small business.

I’d be thinking of all the probable days off ahead for treatment and how that would affect my colleagues, as…[Read more]

Oh Dear more gremlins……..comments in stereo!!!!!!!!!!!

Hi Tom
I hope you have a lovely relaxing week.
I’ve been booking a few holidays myself for the new year. Any hospital appointments will have to be fitted in around my holidays and not the other way around!
Take Care
Michele x

Hi Tom
I hope you have a lovely relaxing week.
I’ve been booking a few holidays myself for the new year. Any hospital appointments will have to be fitted in around my holidays and not the other way around!
Take Care
Michele x

Hi Chris

I had my SCT in February 2012 and opted to go drug-free afterwards. I personally couldn’t see the point of going through 6 cycles of CTD and having a SCT, only to immediately go on more drugs afterwards that would not let me be side-effect free for my unknown length of remission.
I’ve almost reached my 2 year point now and have never…[Read more]

Hi Carol
Well my hair definitely started to thin when I was taking the CTD drugs and came out very quickly once I’d been prepared for stem-cell harvest.
Like yours, my scalp was very sore.
When I had the final “toxic” dose of chemo in SCT week, that sealed my hairs fate and it literally fell out completely one night.
My pillow looked as though a…[Read more]

Hi Tom
Well this is a post I didn’t expect to see for a long time. It must be so disappointing, especially when you’ve had such a long drug free remission.
You must be at an advantage though as your body has had a good long break from drugs, so it should respond well to the next attack.

As you say, “just get on with it”. That’s the attitude I…[Read more]

It looks OK to me and if it helps keep the scummy spammers at bay, that’s a good thing.

The only thing I don’t like is being labelled a “participant”. Makes it sound as though I’m taking part in “It’s a Knockout” or some other sporty thing!!

Hello Dave and Gill

I know it's a very hard decision to make at the stage you're at. When I was told that my CTD treatment had knocked my PP count down from 46 to "a trace" in 6 months, I wondered if I should delay my SCT as I couldn't see how using my first batch of stem cells up could benefit me at that point.

However, I then thought "My…[Read more]

You've asked a very interesting question there Chris.

When I was first diagnozed, my PP's were 46. After 6 rounds of CTD they dropped to below 1, or what the specialist called a "trace".
After SCT, they were still showing as a trace. 15 months later…you've guessed it, still a trace.

At first I wondered if it was worth going through the…[Read more]

A welcome form me too Karen.

I was diagnozed in May 2011 (age 49) and had a SCT in February 2012.
I was very fortunate to have been diagnozed at a very early stage before any major bone or kidney damage, so haven't had to have anything like you.
It must be awful and I really feel for you.

After SCT, it only took me about 4 months to feel…[Read more]

Hi Skyblue

I find your post interesting because I'm convinced Myeloma and other related bloodcancers are genetic.
I was diagnozed with Myeloma in 2011, my father had Non-Hodgkins Lymphoma and my grandfather (dad's father) had leukaemia.

I also know other families with similar patterns.

Whenever I mention it being hereditary, it seems to…[Read more]

Hi Tom
I had CTD for 6 months and am now 15 months post SCT.
I still get the odd bone twinge in different parts every now and again and have been assured that it's due to damage done prior to my diagnosis.
My PP's have remained steady at below 1 since SCT so I have no reason to disbelieve what the specialist says.

Hope this reassures you a…[Read more]

If the CTD mad such an impression on the MM after just one cycle, I too would stick to it.
Getting the virus was just very unfortunate, but shouldn't cause a drastic change of treatment plan.

It took 6 cycles to get me into remission. It was pretty gruelling but well worth it. The drugs did their job and the side effects all turned out to be…[Read more]