[scott9Participant]

I have been on Revlamid as maintenance for about a year now. Unfortunately it has ceased to be effective and the cancer readings are going up again. My specialist intends to try me with bandamustine, thalidomide and dex. Has anyone already gone down this path? What are the likely side effects? I understand the bendamustine will be given by way of IV so I will have to go to the hospital twice a week for it.

Many thanks.

Scott.

[tomParticipant]

Hi Scott now I am afraid to say so I cant add any advice just wanted to wish you well in the new treatment and sorry the lats one failed.
Keep strong Scott

Tom "Onwards and Upwards"

[scott9Participant]

Many thanks Tom. I really appreciate that.

All the best to you.

Scott

[TrigletParticipant]

Hi Scott

I am on the MUK1 Bendamustine trial but as I'm only on cycle 2 there is not a lot I can tell you as I'm still getting to grips with it. My medics told me that they are getting lots of good reports on it's performance in hammering the pp's and light chains – let's hope so! To be honest I feel like I've been hammered myself, but I am 5 yrs older than when I last had any chemo, so par for the course I guess.
I get very shaky coming off Dex and tingly feet, lips and mouth with the Thalidomide. I had both of these with my firstline treatment so they weren't a surprise. I've had a little bit of nausea after the chemo but no sickness and the tablets sort that out. I do feel quite weak though. I feel now, the way I fe

[TrigletParticipant]

Sorry Scott, it's either me and fat finger syndrome or there's a gremlin in my pc…..! Where was I? Oh yeah, I feel now (cycle 2) the way I felt at the end of my CDT (cycle 6) i.e.weak++. Probably just me we are all different. I have a very dry mouth and have been told I could experience odd bruising as platelets tumble somewhat. Apparently it is doing its' job and my light chains have already crashed and my pp's coming down well ( sorry don't have any figures at the moment ) My medics say that Bendamustine is becoming to be seen as a well tolerated regime, so I wish you well with it and hope it does the business for you. It is interesting that you have been offered it as a treatment whilst it is still being trialled, maybe the medics know something we don't eh?
Now where's that post button
Stay well
Rosie xx

[scott9Participant]

Hi Rosie

Thanks ever so much for the information. Do you have any ode how long your course will be? My pps aren't a problem. It is the light chains that are doing me in. I coped OK last time round with dex I had that with velcade and the velcade nearly killed me. This is such an individual disease plus the treatment affects everyone differently. I will post my reaction to this lot of drugs as it may be of interest to others coming along the same path.

All the best

Scott

[TrigletParticipant]

Hi Scott

I'm down for 6 cycles – each one being 28 days. I have chemo on days 1 and 8. I'll finish just in time for Christmas!!(sorry about the c word so soon)

You're so right, each one of us is different and so our reactions to the treatments will be a bit different too.

Stay well
Rosie x

[scott9Participant]

Thanks Rosie. You are lucky (well it's all relative) as I think I will have to have chemo twice a week, three weeks on and one week off. Lots of trips to the hospital coming up for me.

Keep fighting.

Scott

[mhnevillParticipant]

Dear Scott

All the best as you go down this new route. I always feel grateful to those of you who are trialing new pathways before the rest of us.

All best wishes for all those trips to hospital!

Mavis

[BADGERParticipant]

HI Scott
so sorry to hear you have relapsed already that a bit of a blow I have been reading about bendamustine i think you are lucky to be on a trial they have had really good results in America so it all sounds hopeful fingers crossed for you dont let it interupt your golf try and keep well
love jo x

[scott9Participant]

Hi Mavis and Jo

Many thanks for your posts. Thank goodness there are so many new drugs coming along for myeloma. Mind you, I believe bendamustine is a fairly old one originally from East Germany so it seems to be pretty well tested. Hopefully it will be OK for me. I guess all of us myeloma sufferers always hope for the best and try to prepare ourselves for the worst.

I'll let you know how it goes. With luck I may still be able to hit a golf ball or two!

Cheers

Scott

[VickiParticipant]

Hi Scott

I really hope this drug works for you. Like you say this condition is a real roller coaster. I am pleased to hear you can still play golf. Colin used to play and awful lot of gold so this will give him some heart that it's still possible to play golf with mm!

Good luck to you

Vicki and Colin x

[KeithH17Participant]

Hi Scott, I just want to throw my best wishes in there for you also and hope things work out well.
I relapsed from my second sct after only 7 months and have just started my 3rd cycle of Rev/Dex. Not too bad tbh but the high dose of Dex which will be for the first 4 cycles is causing problems with my Glucose levels and I now have type 2 Diabetes so have to inject with insulin on a daily basis. As for the golf I have played since being very young my dad got me playing early on,he was a natural golfer me not quite as good as him but ok. Problem now is I can't do a full shoulder turn because of the fractures I have had in my neck and spine. This means I can't get the distances I used to get from the tee but I still hope to get back nearer to where I once was one day,wishful thinking but I live in hopes.

Take care mate…..Keith.

[scott9Participant]

Hi Keith, Vicki and Colin.

We all live in hope when it comes to golf. I only took it up a few years ago when I couldn't cope with squash any longer. With MM we all have to be careful of fractures indeed. I had to stop when I had a fracture in my spine but when my ribs were bad I kept at it. My golf partners are pretty accommodating. It was too painful for me to take bunker shots so they let me take the shot just behind it. I get sick fairly regularly on the way round but I'm OK afterwards. I make sure I drive the buggy these days so at least I can stop to chunder up. I used to puke out the side while it was still trundling along the fairway with someone else driving not realizing I was being sick. The sickness is due to my poor kidney function mainly. Hopefully the new drug regime won't hit me too hard.

All the best

Scott

[TinaParticipant]

Hi Scott,

Similar to you my late husband Patrick had a very bad time with Velcade. He used Bendamustine 2 years ago for a year before it ceased to make a difference and suffered no side effects at all. You are right in saying that it is not a new drug and therefore has been well-tested.

Best of luck to you
Tina

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