[AlanChantParticipant]

Hi all,

I've just joined the MUK5 trial and am on the CCD treatment, namely Carfilzomib-Cyclophosphamide-Dexamethasone. I'd be interested in hearing from anyone who is on the trial, either taking the CCD treatment or the alternative CVD (Cyclophosphamide-Velcade-Dexamethasone)so that we can compare notes.

Alan

[eveParticipant]

Hi Alan

This is just a welcome:-)

I was trying to get my husband on Muck 5 trials,but to no avail,Nice rules CDT,CVD, SCT and now CDR, at the moment on CDR,but because his Myeloma is Non Secretor ,so if I am correct will make him illegible .:-(
Looks if no compassionate grounds,and I can not see our health authority paying.

I must ask is your photo a recent one as you are looking very healthy!!
Any way good luck,I no there is a new person on here who is getting it through bupa,under Marsden,if you look through new comers or treatments you might find her there. Eve

[AlanChantParticipant]

Thanks for the welcome Eve.

Haven't found the person you referred to but perhaps they will find me instead:-)

I had quite a reaction to the new drugs on Day 3 of the trial – maybe just because a great cocktail of drugs just hit the system – making it feel weak and aching. Happy to hear from others on more conventional treatment, including Velcade, to see if anyone had the same immediate reaction and for similar reasons.

Alan

[EvaParticipant]

Hi Alan,
I've just had six months on Cycloph, Dex and Velcade. My first four months were very bearable, but unless you've had chemo in the past,it's often rather alarming when you begin on a new treatment.

In the first four months the Velcade made me fatigued and I had some twinges of pain in my bones that lasted a couple of days around the times of each injection. Occasionally I got a Velcade 'headache' for twenty-four hours. It was easily treated with pain killers.

The Dex always is a bit of a problem on the withdrawal days as I have trouble walking properly and just get super weak. It passes.

The cycloph. can certainly create nausea and it helps to take the meds that have been recommended.

This does not achieve the comparison you are wondering about, but I can assure you that for some people, Velcade is not entirely side-effect free.

Good luck,
Eva

[tomParticipant]

Hi Alan

Well mine is just a welcome also As I am in remission.
Good luck on your road to remission

Tom Onwards and Upwards

[PeterJamesParticipant]

Hi Tom
Just thought you would like to know , my hair has grown back very much thicker post SCT ,also my beard grows twice as quick as it used to
Where did it all go wrong for you
Mind you i am a bit jealous of your six month check ups, instead of every three months
That must be my next target
All the best
Peter

[AlanChantParticipant]

Hi Eve,

Actually your response was more helpful than you might have thought.

Most people talk about the problems they have when they take Dex, but I related to the weakness that you menetioned on the "withdrawal" days. Prior to going on the trial I had been on Dex for 2 weeks and so I think coming off had a lot to do with how weak I felt.

What other side effects did you have with Velcade? Did you suffer from neuropathy?

Best wishes

Alan

[tomParticipant]

Hi Peter
Well am sure mine would have but my skin is so hard and tough it won't let the hair through he he.

Am sure you will be on 6months call soon, and they really are good ones no need to think about it much.
Stay well Peter and if you don't mind me saying stay Thick it suits you ha ha.

Tom Onwards and Upwards

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