Well, I thought it was high time I saved Tom the trouble and joined the forum. My name is Garry Marshall and it is my honour in this life to be the amazing Sue Marshall's big brother.
Firstly thanks to Tom and all of you for your kind words, I spoke to Sue a few minutes ago and she definitely loved seeing your comments and wishes when Mum took her a printout over last week.
She is in isolation again at Russell's Hall in Dudley and she was quite down when I called her, but she perked up a bit as we chatted,
She saw her consultant this morning and the news wasn't uplifting. She's been on chemo again for a few weeks but he told her that her bone marrow is in the same condition as it was before treatment started (ie full of cancer cells). Her paraprotein level has come down, which is good.
He wants her to consider going on "Pace". She asked me to ask you all here on the "Under 50's" if anyone has experience or knowledge on Pace. She sees it as quite a severe potential next step but we would both appreciate your feedback.
Possibly more encouraging, he has talked to Sue about a drug called Bendustamine. I was looking it up online earlier and, reading what I found to Sue, we were both encouraged considerably, so, has anyone any knowledge of this treatment? It seems it was used in East Germany for many years and only recently (2008) received FDA approval. Sue thinks there is a trial ongoing in Birmingham.
She will be going home tomorrow for a week with a Hickman line, and will be back on line again. I know she can't wait. Please share what you know regarding these two treatments.
On a lighter note, I didn't ask Sue which forum she was on. Not wanting to bother her again I googled "multiple myeloma forums" and there were quite a few. "How shall I know where to post?" I thought. Then I googled "Multiple Myeloma onwards and upwards" and that brought me here. Thanks Tom. 😀
Garry
