[susannahParticipant]

Hi my husband Michael came off Revlimid about a month ago as it had stopped working and his PPs had started going up. As there were no more treatment availiable at our local hospital we went to Nottinghma City on Friday were he was accepted on a clinical trial combination of Bendamustine Thalidomide and Dex. As its a trail the treatment is randomised neither ourselves or his doctor know if he will be given a higher or lower dose treatment. The Bendamustine is given intravenously twice a month, Thalidomide taken every day and Dex 4 times a month, the treatment lasts between 6 and 9 months.Michael can stop the treatment at any time. We have been given a week to think it over and also let his bloods recover from the Revlimid. She did say if this treatment fails there
is Pomalidomide.

I have only heard of one other person taking Bendamustine, and that was Patrick, Tinas late husband, unless anyone else has heard of anyone.The scary apart about this trial is that Michael took Thalidomide as a first treatment years ago, and now one powerful drug is being mixed with another

Forgot to mention there are 5 other people on this trial in my area, 3 are doing well, she didnt say about the other 2, and we didnt ask, 98 in other areas

Best wishes

Sue x

[MinParticipant]

Hi Susannah
My husband had had cdt an sct followed in short time by velcade and finally Revlamid. The latter two stopped working after 4 cycles. We discussed Bendamustine but it was decided that as it is very much like melphalan that they would give him a large dose then another when he would have a further sct. He is feeling the effects now of the melphalan and has several infections 20days post infusion.
It is a struggle but desperate means call for desperate measures. Dont know what happens after this but I would say Peter was on Thalidomed with the melphalan and the Dex of course and tolerated them all ok. He is poorly now as a result of the large dose of melphalan similar to that given during transplant.
He has had only one result since and it was very encouraging. Bendamustine is a derivative of mustard gas, and used widely in Europe apparently, so they said at the Info day I went to. I hope your husband responds well to it.
Min

[brochoParticipant]

Hi Sue sorry I cant help with any info on Bendamustine but I just wanted to wish Michael good luck with the trial From my experience I would say you do get very well looked after when you are taking part in a trial Fingers and toes crossed they get his pps down very quickly love Bridget x

[GeorginaParticipant]

Hi Sue

My mum was on the bendamustine trial but had to come off it as her counts (platelets, neutrophils and Hb) all went very low after the first cycle. They waited a few weeks to see if they recovered to continue on the trial but unfortunately they didn't. I think her counts went down due to the myeloma being very active and the effects of the bendamustine so this isn't likely to happen to everyone. It may be worth asking more questions though to see how many other people this has happened to.

Good luck with whatever you decide
Take care
Georgina x

[susannahParticipant]

Thank you all for replying, thanks Min the consultant did mention Melphalan
but you know what its like they seem to through so much at you, and I dont know about the rest of you, but sometimes you just dont take it in. Its been a tough few days and we both had a cry this morning ( something Michael never does) we know theres not many options left, but hes been through so much over the past 4 years no break in treatment, and strange it may be he seems so well at the moment, and this trial will probably change that. Anyway time to dust myself down tomorrows another day onwards and upwards

Love
Sue

[PerkymiteParticipant]

Hi Sue, I do not get onto the site as often as I would like these days. I am very busy with jobs and holidays at the moment (just finished making my prototype bird table/ nesting box and my ?Living and the dead? tour of the UK), shortly I am off to the Rhine/Moselle for a Cruise) .

However, I would like to wish Michael the very best of luck and say how much I admire your great attitude. As Tom would say Upwards and Onwards or is the other way around!!!!

My South African family gave me a great word for this situation, [i]Vasbyte[/i], it means bite hard and I feel it is so appropriate for this decease.

Kindest regards ? vasbyte 😉

David

[TinaParticipant]

Hi Susannah,

I am so sorry that Michael had to come of Revlimid and you are now having to make this decision. Yes, as you know Patrick took this road which gave him another 9 months of virtually side-effect free life. I do not recall that he was taking thalidomide or dex along with it? Just at it did with Revlimid Patrick's platelets went down along with neutrophils (which actually never recovered after Revlimid). The one cycle of Pomalidomide had a very similar effect also.

Good luck with whatever road you take.

Love Tina

[RozParticipant]

Hi Susannah

Sorry about your Michael having to come off Revlimid. My Michael never got the chance for this trial your talking about, if he had I'd take it with open arms. Michael died Christmas Eve. Please don't take this the wrong way when I mention that, I know it's an individual disease that works differently for different people. My Michael got took off Thalidamine cos it made him loose his balance and stuff, he fell over. But to know I would have had him longer and he agreed to it I'd accept the trial and maybe if things improve then you'll know where you stand.
What I'm feeling today I don't wish on anyone.

So I've everything crossed that everything goes right for you both and your Michael is with you for as long as possible.

All the best
Roz

[susannahParticipant]

Hi All David your post brought a smile to my face thank you, enjoy your holiday, Tina and Roz thank you for your replys they have helped alot. Michael has decide to give the trial ago, but we do have a few more questions we need to ask first.
I wondered if anyone had heard from Gaye as I know she is on Pomalidomide

Thanks again for your support
Sue

[TinaParticipant]

Hi All,

I was so worried about Gaye I contacted Barts Hospital to see If I could get the heads up. Gaye was not an in patient and there was no record of anything untoward happening to a person of that name in the past weeks. I hope this means that Gaye is still hanging in there and is just too tired to come on line.

Tina

[susannahParticipant]

Hi Tina Lets hope so , she has been so supportive to so many people on this sight for a long time.

Sue

[DaiCroParticipant]

Hi Gate,

I appreciate that you may be exhausted by the treatment… but if you do 'pop' in… just take note of our love and support… and when you are ready, if you are able, please let us know how you are. 🙂

Much, much love…

Dai xxx 🙂

[JoannaParticipant]

Hi Sue,

I have just come off bendamustine ( every other week for the first 4 months and then three out of four weeks)plus dex daily for 4 days a week and 100mg thalidomide daily. I found the 24 weeks tough and within each week huge variations in how well/bad I felt due to dex moods and effects of bendamustine but in general not the worst chemo that I have had and I didn't need any blood, platelets or hospital in- patient admissions. However, sad to say, it hasn't done the blasted job. Paraproteins did drop a bit but they started to rise even before the last treatment so there is now talk of intermittent melphalan or pomailomide or something else that I have never heard of. I hope that your story involves less hassle with side effects and more success with response. Jo

[TinaParticipant]

Dear Joanna,

Very sorry to hear Bendamustine did not work for you. It's interesting to see how treatments differ so much across the board. Patrick was not using either thalidomide or dex during his Bendamustine treatment, probably why he didn't suffer with side effects – and maybe why the treatment worked for him for 9 months, who knows?
The very best of luck with your next treatment, I will be keeping my fingers crossed for you.
Tina

[susannahParticipant]

Hi Joanna Sorry to hear Bendamustine has not worked, to be honest Im dreading the trial Michael has infusion twice a month thalidomide daily and dex 4 timeas a month 40mg, its the dex i fear it changes him so much.
Were you on a clinical trial?

Sue

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