Hi Tina,
I'm on day 7 of my first CTD cycle. Glad to read Eva's notes on the dex because I've noticed the swing from high to low. I got so much housework done at the weekend, I'd cleaned the kitchen by 8.30am! Now I feel a bit 'on-edge' and fuzzy headed!

It's great that we can all support one another, hope all goes well for you,…[Read more]

Oh of course, I was casting my mind too far back!!

HI Sue, I'm afraid that I can't put a face to your name, but It's nice to hear from an ex-colleaugue. I'm still at said establishment although it's all offices now. Do you live in the area?

It's a funny small world this, isn't it?:-)

I guess you could take a notebook and write down things you would like to ask and try to find out later.

I don't know what other people think but I believe it may be harder to be the carer than the one who is ill. I have MM and am fortunate to feel better than my blood results suggest but I know my family and friends worry about me a lot.

Hi Charlielouise,
this site is a brilliant place to meet people in similar situations and get support. You must be feeling totally overwhelmed at present but you will find that it gets easier to cope once all the information begins to 'gel' How lovely for your nan that you can look after her, that will be a great help I'm sure.

As for…[Read more]

HI Terry,
I had a solid cannula in my left arm so couldn't bend it at all, but an 'ordinary' cannula in the right so that one I could move. A possible side effect of the harvest is low blood calcium which can make you feel 'muzzy headed' and gave me tingling in my arms. They give calcium to treat this but it ruined my ability to concentrate so I…[Read more]

thank you Eve, hope you are doing well too.
The decision has been made to harvest some stem cells anyway and then they will be on ice should a SCT be an option in the future. Looking forward to those G-CSF injections:-/.
Alison

Hello Sarah and Henry

this is an extreme way to meet new friends isn't it?!! I was diagnosed in January this year and was randomised onto a dialysis trial at the Churchill as the Myeloma had caused my kidneys to fail. I had chemotharapy as well and have been dialysis free and back at work full time since May.

The haematolgy ward does have a…[Read more]

Hello Aileen,

After the shock of diagnosis this sites a bit like a life boat isn't it, just climb in and hold on tight!:-/

I was diagnosed in January this year and used to read a lot of the posts on this site but it took me ages to pluck up the courage to join in. I used to read information through my fingers – a bit like watching scary…[Read more]

Hi Jo and Scott

Thanks for replying to my post. Jo I hope you really enjoyed your holiday; I?ve just come back from a week in Guernsey where the sun shone for most of the time!8-)

Joining in with the discussion on meds, I take 4g of sodium bicarbonate a day which has reduced my potassium to normal levels. I also was having epo injections…[Read more]

Hi Gill, Scott and David,

Thank you for the welcome to this unique club!

My consultant was very explicit regarding all the pro's and con's and agreed that it was not an easy decision to make and that I should 'go with my gut'.
At the moment my gut says no to Auto SCT as my renal function is aprox 10%. To get more time (and it does not…[Read more]

Dear Eve and Mavis

Thank you for your comments, it is nice to be part of a supportive group:-).

I did follow a link that someone posted to a site where a Dr Berenstrom (I think!) was expressing his expert opinion that SCT is becoming less essential because of the new drugs available. Because of the trial I was on I had Velcade as part of my…[Read more]