[ali49Participant]

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 place for family members to stay, I think they have a flat. Also facilities on the ward like a tv room, tea/coffee etc.

I agree with Debs that Maggie's place is also a great place to take time out and talk to someone away from the clinical setting.

I have found great help and support from the people on this forum and I'm sure you will too. Stay strong, and take one day at time for a while.

Best Wishes
Alison

[ali49Participant]

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 films on TV!!

I've found everybody here really friendly and full of encouraging information so any questions you have.. just ask them!

Best Wishes

Alison

[ali49Participant]

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 weekly but my Hb crept up to 14 so that has been put on hold for a while. The Dr seems reluctant to start me on any ?bone food?, I think due to possible kidney complications.

If I choose not to have the SCT, which is my ?gut feeling? at present, (I agree with you Jo I don?t want to go back on dialysis if I can avoid it) will I be put on some kind of maintenance therapy?

Scott, have a lovely holiday in Spain:-D

Alison

[ali49Participant]

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 guarantee a lot more time) just to spend it on dialysis seems a bit pointless. My hopes are pinned on all the new drugs coming along.

David, my Dr did explain about Allogenic SCT and said that a very few people may even be considered cured by it, but the risks are much much higher so It's not really an option for me.

[ali49Participant]

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 chemo so that was a good start. Eve I hope your husband has a good response to it.

Glad to 'meet' you both,

Alison

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