http://www.myelomabeacon.com/news/2014/05/09/nmp-myeloma-activity/

Laura

Any chance you could add tapatalk support for access from mobiles & tablets ?

thanks

Laura

Sorry you and your wife are having such a  touch time.  I didn’t have the delusional symptoms when I had my autoSCT but it very much reminds me of when my Mum was in hospital having a hip replacement.  She caught a simple urine infection and it caused her to be totally delusion, refusing medication not reckoning people.  It was very sca…[Read more]

Thanks for the tip on vitamin B and folic acid, I think I’ll give that a go for my PN which isn’t painful just a bit numb at the moment.  I’d read conflicting things about ALA (Alpha Lipoic Acid) and didn’t want to risk it just yet.

Enjoy the gym!

Laura

My MGUS was diagnosed from a routine blood test at the GP that I had for something completely unrelated and I had no symptoms.  Blood test showed a high level of paraproteins and I had more tests after that.

I’ve read that stat before that around 10% of over 60’s have MGUS. But if 10% of MGUS people go on to have MM that’s a lot of…[Read more]

Thought I’d introduce myself here as I’ve read the forum in the past but have only posted recently. I was diagnosed MGUS 11 years ago with quite high PP but no symptoms.  Nothing changed for years, and I got to the point of largely forgetting about it and assuming I was going to be one of the lucky ones that don’t progress to MM.  I wasn’t a…[Read more]

I came across Pomi-T supplement recently, and thought about taking. It contains green tea, pomegranate seed extract, broccoli extract and turmeric. It’s UK made and has been tested in trial for prostate cancer. (info here: http://www.pomi-t.com/)

I think I’ll ask my doc about it when I’m next at clinic, but I got frowned at a bit last time I…[Read more]

I’m new on the forum too, and I’m also considering the allogeneic as part of the LenaRIC trial. Just wondering if that is what you were given the option of?  As you say it’s a huge decision. I was presented with it half way through my CTD therapy for autoSCT (which I had just before Xmas), so have been thinking about it for a while and…[Read more]

Thanks for the update. Quite a scare you had last time, but as you say so long as it results in a good outcome it’s worth it.

Good luck, and thanks for sharing your long term living with this story !

Laura

I’m a forum newbie too, just had my first SCT.  Interested that you had better result from your second transplant as I’ve been told to expect that a second one is normally half the remission length.

Laura

http://www.scottish.parliament.uk/S4_HealthandSportCommittee/Meeting%20Papers/Papers_for_Meeting-25_February_2014.pdf

Laura

I’ve just completed my first autograft (~ day +70) and I’m considering doing the LenaRIC trial which involves having a reduced intensity donor transplant with lenalidomide after for a year.  Anybody else considered this trial or currently on it?  It’s a big decision.

Thanks for reading,

Laura