[tomParticipant]

Hi Folks

Susan (Sue) marshal has been off line for a bit now so I started to find out how she was?

Eventually got hold of a Brother of Sue's and asked if Sue was doing Ok?, I got this reply:::::

Hi Tom, she's not doing well. She had to go back on chemo but had a reaction to her steroids. She ended up missing treatment while she got over the reaction. Now she's back on chemo and needs platelets often. She's ok in herself but stuck in hospital. I'll get my Mum to tell her you were asking after her. Good luck with your own journey, Tom.
Garry

I thanked Garry and asked if its ok to post on here and he said it was fine:::

Hi Garry, Am sorry to hear Sue is having problems, but she is a strong lady and am sure Sue will get over this Hurdle. The Steroids are great but they do come with problems that need to be fixed and sometimes that is to reduce the dose that we have. Will it be Ok to let the other MM Members know on the Myeloma site that Our Sue is in Hospital but doing OK??. please ask your Mum to tell Sue its Onwards and Upwards and we all send her big hugs. Many Thanks for the reply Garry.
Tom

Please let them know Tom.

Am sure we all wish Sue a speedy recovery, and if I hear anymore I will post that also.

Get well soon Sue xxxx

Love tom Onwards and Upwards xx

[DaiCroParticipant]

Well done Tom,

I am glad we have caught up with Sue and now at least we know how she is doing.:-)

I f you read this thread Garry please let Sue know that she is in our thoughts and that we are pulling hard for her to get her platelets sorted and that she manages to get back onto an even keel sooner rather than later.8-)

Regards to Sue and her family.:-)

Dai,

[EvaParticipant]

Dear Sue,
Hi- this is Eva. I've phoned your mum and ended up speaking to your dad. Have been trying to find out how you are.
Thinking of you,
Eva

[PerkymiteParticipant]

Well done Tom, The youngsters put up +1 when they like or support a posting can I put up +101.

If you read this Sue keep going, just keep bl**dy well going.

Kindest regards – vasbyte

David

[tomParticipant]

Hi All

Well I have another update on Sue from her Brother Garry :::::

[quote][/quote]Hi Tom. I got an update from my Mum today. Here it is:
Much better visit last night they are getting the leg pain under control no platlets or blood needed today . her paraprotein is down! Laura read her report to her and this did her a power of good .She said they are so on the ball with her and they don't leave a stone unturned.[quote][/quote]

Regards Tom Onwards and Upwards

[tomParticipant]

Hi All
I posted the reply's above to Garry (Sue's brother) and he sent this reply ::::

Thanks Tom! Those are fantastic!! I will make sure she sees them via my Mum and Dad 9I live in Seoul, South Korea and won't see Sue until late August). Please send any others you may see. Onwards and upwards to you too!! Garry

[GarryMParticipant]

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

[eveParticipant]

Hi Garry
It's nice of you to let us know,how things are going:-)

Last time Sue was on here,you could sense she was having a hard time with her leg, it took me awhile to place Sue as there are a few on here,and we tend to stick to first names,but got there in the end.

May I suggest you post in General,as I know Andy and young Tom have both had PAD,but they might not see it,under the heading Get well Susan Mashall,easy to do log in click on general ,go down to bottom right hand side,and start new,post.

It must be very hard on the family at this time,there are so many complications with treatment,my own husband Slim has just had a blood clot removed from a artery in his leg,I know Sue,s is the Myeloma in her leg,which returned,it is bad enough with treatment,without not being mobile.
Please give Sue my best wishers.Love Eve

[andygParticipant]

Hi Garry
As Eve rightly says I've had experience of "pace" though what I had was DTPace. Unfortunately it didn't achieve much for me but that's not unusual for me because none of the first line or second line of treatments had any effect on my MM.
My MM is proving very difficult to treat but as far as I'm aware I'm a very rare case! Anyway back to the DTPace – I spent 4 nights in hospital having the drugs infused constantly through my Hickman line and a line in my arm! I think I had 4 different bags up at a time! It made life a bit difficult sleeping and going to the loo etc. I tolerated the drugs ok and can't recall suffering to much nausea.
Afterwards I was discharged to await results and an appointment was made for my next cycle. I didn't get a second cycle because my results came back disappointing with no improvement. I had a BMB that showed my bone marrow had been severely hit but the MM was still there in a significant amount so my second cycle was cancelled. I think they expect a good drop in PPs with one cycle.
Side effects were mainly a slight loss of hair not that I had much to start with! and not needing to shave for a couple of months was a blessing. I'm sure the side effects would of been more extreme if I'd had my second cycle. I think you only get 2 cycles of DTPace. I don't have any experience of Bendustamine though I've been told that maybe my next port of call after RCD.
Like I said previously I'm a difficult and rare case – my PPs stubbornly refuse to go much below 20

Whichever treatment Sue gets I hope it goes well and she gets on the road to remission.

Every day is a gift

Andy

[Author]

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