[eveParticipant]

Hi Everybody
Is there anyone on here who is taking part in the muck trials????
Its for patients who have relapsed or refractory patients,patients who have not responded to treatment.
Combination of bendamustine thalidomide and dexamethasone.I know its a long shot as only 50 patients on trials.
would like to hear from anyone who knows more about it. ??
I am sure Gill would be interested,and it might help a few others .Eve

[susannahParticipant]

H Eve My husband is taking part in the trial, hes on bendamustine thalidomide and dex. He started at the end of July, I did post on here at that time under treatment, i have updated a few times, but as you say there is no one else on this sight at the moment on the trial, so I dont have anyone to compare notes with.I do post if I think if it will be of any
value. If theres anything i can help with im here (for anyone)

Sue x

[eveParticipant]

Hi Sue
Nice to hear from you,did not think I would get any replies ,so glad you proved me wrong.Must state from the start Slims is not in this position but I have no allusions,that if the Velcade does not work,which path we will be travelling.
I am not shy,in terms what the future might hold, my attitude is the more you know, the more chances you have.I think I read your Post,but did not take it in,as not common knowledge about trials.
To put it bluntly are we talking about,last chance!!!!
If this is the case, may I ask,What is your response to the treatment
I do realise this must be hard for you,but in some ways you or your partner is a bit of a trail blazer for a few people on here.
I hope to hear from you, but I do understand if you find it heavy going. My thoughts are with you love Eve

[susannahParticipant]

Hi Eve Its my husband Michael that has MM, like yourself I have always been very open about what the future might hold. Im the one with all the questions, and I do want honest answers. We have been down the no more treatment road a couple of times (before Velcade and Revlimid were availiable) its a terrible place to be in but we had to deal with it.Before Michael was accepted on the trial he had a good 18months on Revlimid, we both thought that was it again, but our consultant put Michael forward to Nottingham City for the Bendamustine trial, its a 40mile round trip twice a month but if it works, well! Its not been without complications though, the treatment is randomised, the computer decides what dosage of chemo he has, unfortunately he was given max dose for 2 weeks which did alot of damage (admitted with neutropenic sepis twice) to cut a long story short after 2 months the consultant can reduce dosage, which she has done so he has his second dose at a lower rate tomorrow,he has had some side effects which he is finding hard to cope with
The treatment can last for up to 9 months, that depends on his PP levels which at the moment there is no change.The trial team are great and cannot do enough for us, but they to are in the dark and as to what side effects etc will be.

Its good to talk about it and I will keep you updated

Best Wishes
Sue

[brochoParticipant]

Hi Eve and Sue well got it sorted today I will be starting on Bendamustine, Thalimode and Prednisalone ( just the same as Dex but reccommended with these two drugs) in a weeks time So although I am not on a trial , my consultant believed one of the trials has been stopped due to blood counts not recovering , not sure which trial ) I will be on the same regime Have been warned neutropenia is a common problem, hence two weeks on then possibly a third dose if bloods have recovered , meaning either one or two doses of Bendamustine in a 28 day cycle. I am not very keen on injecting myself against blood clots each day but its better than being on Warfarin I suppose . I had to laugh when fatigue was given as another side-effect!! Everything they give me causes fatigue along with that old favourite constipation!! What joy back on 3 lots of laxatives again!! It will be interesting to see how it affects us So onwards and upwards as Tom would say! love Bridget x

[susannahParticipant]

Hi Bridget Im pleased a decision has been made and your starting treatment, your post has jogged my memory (whats left of it) Michael is on warfarin, but thats because hes already had 2 dvts, and the other thing about the bloods not recovering very well, Michaels started on GCSF injections twice a week

I had to smile when i read the piece about constipation,Michael is on pregablin which makes him very loose so thats one thing in his favour!
Just want to wish you well Bridget,Let you know how he goes on tomorrow

Love
Suex

[susannahParticipant]

PS Michael has always found Dex to be a nightmare, but it seems to help with
the fatigue xx

[TinaParticipant]

Hi Sue,

Thought is was worth mentioning that when Patrick was on Bendamustine for just over nine months he suffered with a low platelet count therefore interesting to hear Michael is still on warfarin. Worth keeping an eye on.

Best Wishes
Tina X

[MinParticipant]

Hi Bridget
The very best of luck to you when it starts, I hope it doesnt have too many bad side effects and you can get back to living normaly again. Take CAre
Love
MIn

[mhnevillParticipant]

Hi!

Love to all of you on these Trials. Do hope doses continue to be tweecked so thzt side effects are minimised.

And Bridget,

So glad they have finally agreed to the treatment. All best wishes for this next stager. Let's hope it is as successful as the RT.

Much love.

Mavis x

[brochoParticipant]

Hi Min and Mavis thankyou both .To be honest I am quite relieved I dont have to wait any longer to begin treatment , the doctor I saw today said he was just going to go ahead rather than waiting for funding approval , good man ! Iwill have to be very vigilant about getting myself to the hospital if I get an infection sooner rather than later , like a lot of people I usually do anything I can to delay going in to hospital but remembering a post of yours Min I will be much quicker now as I realise I cant take any chances Now I have just got to have a stern talk to myselfabout doing these injections every day, there is no chance of Jeff doing them he would be flat out in seconds poor lamb!! lots of love Bridget x

[eveParticipant]

Good Morning Every One
Susannah thank you for information and yes i will be interested on your husbands progress,it,s a good thing for us to know about new trials,and it has to be helpful to you to be able to talk about it openly so I am looking forward to see how things are going,about the Dex on MYeloma X1 trial the dose was reduced on Slim to 10 ml reason being it masked his infection,ended up with septic pneumonia,So watch out for low blood pressure.They may allow a reduction on Dex.:-S

Bridget so glad they have found a new treatment for you,your hospital is a bit of a trail blazer no one should have to wait for treatment when its available so glad you have good doctors,Slim,s being doing injections for many months,I offered to do them,told me he was not a dart board LOL.:-)
He never rubs his tummy but it now has lots of red spots on,as he is bruising.:-P
Nice to hear from everybody so grateful for your input we need your experience,s on this site. love Eve

[PerkymiteParticipant]

A really interesting post, thanks, I expect the path that lies ahead for me although I am not sure what treatment is available at our Cancer Centre yet.

Injections; I do not know how relevant it is but the nurse told me to try to keep a clean entry and exit of the needle when doing my anti DVT injections i.e push it in, inject and then pull it out cleanly without waving it around and do not rub the puncture site afterwards.
Gently apply a small plaster and leave it for at least 4 hours. I never had any bruising or marks.

The very best of luck to all of you.

Kindest regards ? vasbyte

David

[susannahParticipant]

Hi Another long day at the hospital,but not such a bad one. All Michaels bloods were very good so they went ahead with a lower dose Bendamustine and lower dose Thalidomide. We also had a long chat with the trial team,there are couple of trails on at the moment one is Pomalidomide, derivative from Revlimid, the other one a derivative from Velcade which id never heard of, so there seems to be lots on the horizon for MM at the moment
Hi Tina Michael has been on Warfarin for 2 years he has INR test every week
because of the low platelet problem, but it is quite worrying as he bleeds very easily.
Must go dex calling
love
Sue

[brochoParticipant]

Hi Sue good to hear your day wasnt too bad even if it was tiring( it always is!) Interesting news about the new trials I will keep my eyes and ears open too Incidentally my consultant feels that not being able to measure paraproteins should not prevent us from taking part in trialsas I had been told before , they can only measure any activity with me through mri and bmb so I am relieved to hear that Have a good weekend love Bridgetx

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