[GarryMParticipant]

Apologies for double posting – my dear sister asked me to post on the "under 50's" section which I did, but Eve kindly wrote and suggested that some of you might have info of use but might not see this in that section, so here it is under "General". Thanks to Eve for that.

"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"

[LornaParticipant]

Hi Garry

Thanks for the update. There will definitely be someone along to help with info on both treatments, although I'm no help at all.

Tom gets everywhere it seems >:-)

Lorna

[BADGERParticipant]

Hi Gary

best wishes for you sister i hope they find a solution for her dont know about pace and i am glad you posted here as i dont look at the under 50's as i am well over;-)
Best Wishes Jo

[VickiParticipant]

Hi Garry

Just wanted to wish you and the family…..and of course sue, well. Don't have any knowledge of the treatments you mention but I have heard other mention the bendumastine. It's just so important that people feel supported,,so good luck with it 🙂

Vicki and Colin x

[tomParticipant]

Hi Garry

A warm welcome to the site, sit down and pour a Glass of you fav tipple 😀
Its not a problem passing the info on but we are pleased to have you on board:-D .
I am pleased that Sue will be home for the week as it is going to be a good un (we ordered it for Sue) 😎

I know nothing about the info you asked about ? but am sure some one will pop along pretty soon

As you know now its me

Tom Onwards and upwards x

[EvaParticipant]

Dear Garry,
Still trying to call Sue on her new mobile number but unsuccessful.
Any idea how else I can get through?
Eva

[TinaParticipant]

Hi Garry,

Great to hear Sue is coming home for a week – that alone will perk her up.

In 2011 my late husband Patrick had Bendamustine treatment which was very successful for him for a year. He had already used up all other treatment options at that point so the Bendamustine was a shot in the dark. From what I can recall no nasty side effects were suffered. The nuisance was that the potion could only be made up when he physically arrived at clinic, this meant that on accasion there was a long wait – a pain as the infusion took only 5 minutes.
At the time of treatment Pat's PP's were on the rise, he already been neutrapaenic for a year and platelets were being given pretty regulary. So I would say even though the treatment was effective for a year I would call that a good result.

My very best wishes to you both

Tina XX

[GarryMParticipant]

She's home for the week so please try her land line Eva.

[GarryMParticipant]

Thank you Tina x

[eveParticipant]

Hi Garry

Eva has just posted about Sue,I know you are far away,but just to let you know,we are thinking about her and your family,its a lonely road in times like these,.Best wishers Eve

[tomParticipant]

Hi Garry

hope you have caught up with your rest.

I know its hard Garry but just to let you know we are thinking of Sue and her family and friends

Tom x

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