[andygParticipant]

Hi all
Well today had to be the day for my appointment to see the Prof. After over 2hours of battling through the rain, floods and diversions we managed to arrive 45 mins late for our appointment. Not a good start.
He had news for us that the only match for a sct they found was the original donor from the USA but he wasn't a perfect match. He had 2 points that weren't a match. Unfortunately these were major points and as such the Prof said the risks of a sct far out weighed the benefits and he would not recommend going ahead.
So where does that leave us? The chances of me getting a donor? Well they've checked the donor lists, 7 million donors, and only one came close to being suitable. With only 2-300 donors being added each month the chances of finding another match are virtually impossible. So that just leaves us with the drugs and as most of you will know I haven't had any joy with the treatments I've had to date, though the RCD I'm on now has reduced my PPs to their lowest level since diagnosis.
That's my news :-/ for today.
I hope you all had a better Monday than we did.
Keep up the fight.
All the best.
Andy & Steph xx

[DaiCroParticipant]

Hi Andy,

I think the technical term for your news is 'bummer'. To get to a point where everything looks as is it is in place, only to be faced with a 7,000,000 to 1 chance must be devastating. Your donor (or possible donor) has 2 points that make their possible contribution invalid, or dangerous, begs the question: 'What are the qualifying criteria?'

That you can't get closer than that seems unbelievable with 7m possible donors… but who knows… the 300 or so new ones each month might throw one your way… but like you I imagine I wouldn't wait with bated breath.

What says the Prof re: future drug regimes? Is the RCD a long term possibility while you wait for a donor?

And can you remind me again why you can't have an allo?

I am disappointed for you Andy… you seem to have got so close and the RCD seems to have brought you to the right levels…

Regards 🙂

Dai.

[KesParticipant]

Hi Andy
Sorry you got such news yesterday !!! But as Dai said u never know each month a new person donates is another chance of u getting a match xx

Keep taking the drugs & an eye on that donor list …

Take care

Regards
Karen

[PerkymiteParticipant]

Andy, I think Dai has got it just about right!

Keep fighting my friend you just never know what is around the corner. July 2009 I was told in no uncertain terms that I would not make my 50th Wedding Anniversary. I have just had a great weekend with my children and am looking forward to a Ten Pin Bowling and Pizza night with my grandchildren on Saturday, celebrating my 50th which was on the 24th Nov. I am now looking forward to my 70th on the 2nd Jan.

Just keep bl**dy well going.

Kindest regards ? vasbyte

David

[tomParticipant]

Hi Andy

Am sorry to read this Andy as you know i seen it on Face Book, and am Like Dai and others you just might get that Donor pop along tomorrow 😀 now thats great thought 😎

Kepp us posted Andy and good Luck My Friend

Tom "Onwards and upwards" x

[scott9Participant]

Hi Andy,

Do you see Prof Schey?

He has been looking after me for the past two years. I haven't had the SCT due to dodgy kidneys. Don't worry as he has been able to keep me going without it. He has put me on a new chemo regime recently as the cancer readings were going up again, but revlamid maintenance lasted for a year. I'm on Bendamustine/Dex/Thalidomide now. Due for my fourth bash of Bendamustine on Monday. I'll let you know if it is working. Last light chain reading was a bit up so hopefully this time it will be down again.

Stay strong

Scott

[VickiParticipant]

Andy

That's not the news you wanted and struggling hrough that bxxx weather!. It's amazing how 7m people and there isn't a match. But it just goes to show that it is a risky business and they need all the factors to be right…..no consolation I know. I'm a great believer in medical advancement and reckon in the next few months more donors will come along and…….new treatment coming on line. I told Colin your news and he said a few naughty words for you 🙂

Andy your pps are coming down even though it's been a struggle, keep going and I'm sure something good will come soon. Oh and you and steph deserve a nice meal and some wine whilst your waiting xxxx

Vicki and Colin x

[BADGERParticipant]

Keep going Andy
my docs have kept me going for the last 4 years no SCT on the velcade trail now just keep hoping for any new treatments I have dodgy kidneys like Scott so as tom sort of says onwards and onwards! Chin Up
lOVE jO X;-)

[BADGERParticipant]

hI sCOTT

just completed the last of four Velcade injections got a week off not been too bad on it yet but not had a result yet to see if its working how are you on the bendamustamine manageing ok?
Regards Jo:-)

[DizzylizParticipant]

Hi Andy,

What rotten news but fingers crossed that one of the new donors added to the list every month will be THE ONE!
And until then thr rev/ dex continues doing the job keeping the PPs down.

Take care Andy & Steph, love liz & kev xx

[andygParticipant]

Hi everyone.
Many thanks for your posts and kind words. Yesterday was a blow but my journey from the start has been one disappointment followed by another so we're getting used to it.

Dai the reason I was given why I can't have an auto sct is my bone marrow has been battered by so many drugs that I wouldn't produce enough stem cells. My last BMB showed I didn't have much bone marrow at all.
I'm to stay on RCD until it stops working or something else crops up. The Prof. Doesn't want to see me again till something changes. He did mention other drugs to try. Bendamustine is next in line, maybe on a trial with pomalidamide and possibly carfilzomib as future treatments but there's hurdles to jump for the last two.

Scott I saw Prof. Jackson at Newcastle.

Thanks for all your support – the fight continues.
Take care.
Andy & Steph xx

[scott9Participant]

Hi Jo

I'm doing fine on the Bendamustine. Low energy and I get out of breath quickly but I think thats more to do with my dodgy kidneys. Hope you continue to do well on the velcade. It nearly killed me – I was hugely sick, had the trots, lost loads of weight, could barely walk or talk, fainted a few times, felt the cold badly, got peripheral neuropathy in feet and hands etc etc. Still suffering from the peripheral neurpoathy but it hasn't gotten any worse thank goodness.
The Bendamustine apparently is very toxic so I won't be having too many sessions. I just hope it works before the toxicity becomes too much for me.

All the very best

Scott

[scott9Participant]

Ah – Newcastle. That explains the problems with the transport. It has been raining hard around London as well but we haven't had flooding or train disruptions – well, no more than usual!

Good luck with your fight.

Scott

[DaiCroParticipant]

Good luck with your fight too Scott.

I hope the Bendamustine shows good results and puts you back on your feet. I too suffered with Velcade… It made weak and groggy and exacerbated the PN I'd got from my CDT. I got into full remission with Velcade, the medics were all pleased but it relapsed within 4 weeks. That seems to have been my MO throughout my fight with MM… fine while I am on treatment but high readings as soon as I stop.:-(

How does Bendamustine work? I know about the dosage and the Cycles being heavily weighted at the front but you talk about the toxicity… if you get your levels down do you stop treatment? And what happens when your levels start to rise again… do you start treatment again.:-|

Good luck with it any way up… I hope you do get more good days than bad and that Bendamustine surprises us all by proving to be very efficacious and long lasting. 😎 🙂

Regards

Dai.

[KeithH17Participant]

Hi everybody,

Bendamustine is a chemotherapy drug that damages the DNA in myeloma cells which prevents them from replicating and multiplying resulting in the death of the MM cells. I have had 1 cycle the minimum number of cycles is said to be 6. I was told that it can take some time to show any benefit and that regular blood tests must be taken to monitor the progress and or any sudden drop in the blood counts. At my last check on Monday there was an increase in my Hb and I'm no longer Neutropenic but my Platelets are still low at (34). Yes it is toxic as are all chemo drugs and I felt very tired and lethargic during the first week after having the infusion. I'm not sure how long I will be staying on the drug but I would think for as long as it is working. I have to go for another blood test on Friday to check mainly on the Platelets as they are haven't gone up above 50 for ages. They say normal Platelet counts are from 150-400 and I see people on here with counts of at least 100 Plus being the average counts I've never even got near to. I've always had very low Platelets and nobody knows why!!! A bruise that looks like the map of Africa has appeared on the back of my calf and no doubt I'll get others in time unless this Platelet problem is sorted out once and for all. Other than that I'm still battling on regardless.

Best wishes to all.

Keith.

[Author]

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