[jeantParticipant]

my husband is 72 years old and was diagnosed with mm last july he was treated with thalidomide for 6 months it worked well for 4 months reducing his para protein then it stopped working and his count started to go back up. he was then treated with velcade but after 4.5 months he deleloped very bad numbness and pins and needles in his hands and feet so today the velcade has been stopped and he has started revidlimid and dex and we wonder how successful this is. he suffered no side effects on any any of the previous meds until the last 2 weeks and has no other health problems.

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[tomParticipant]

Hello Jeant
Just wanted to say Welcome and sorry I cant add to this but am sure some one wil pop along soon to answer it.

Good Luck to your Husband on his new treatment.

Love Tom"Onwards and Upwards" xx

[eveParticipant]

Hi Jeant
My name is Eve,My husband has had CTD plus Velcade them SCT,I do not know any back ground,so it is very hard to make any comments.
The question you should be asking yourself is how much do I want to know,???

The experts have to answer your questions
So you must decide what you are going to ask.
If they are treating your husband they are looking for some thing that will work.Myeloma is so individual ,it is very much trial and error.

I often think people who come and go on this site,are looking for some thing that does not exist.We all hope for a cure,and we wish to help the trials.Some people sail through treatment,many do not,We will try to answer your questions and help and be there for you. Keep in touch Eve

[eveParticipant]

Hi again Jeant

I was just looking through the post and thought I sounded very harsh I did not mean too, and must apologies to you.you are very worried and did not need me to tell you there is no answer.
The CRD has had good results its just about finding something that does the job,all the chemo,s have side effects and because people are individual the drugs react different on everyone.
Sorry if I offended you,did not mean to be so sharp,looked at the time i posted,and I had a bad day with a grumpy old man,and have not slept much for the last few days,as a carer you just get past the sleeping stage,and thats were i was at that moment.Love Eve

[mhnevillParticipant]

Dear Jean

Do hope your husband has good response to the Rev and DEx. A lot of folk seem to. With this MM it seems to be a step at a time. It is really good that he hasn't had bad side effects from earlier treatments so lets hope it is the same with this.

All best wishes.

Mavis

[jeantParticipant]

thanks for your reply i didn,t think anything wrong with it. the doc gave us all the relevant information about the treatment but having attended hospital for the past year my husband had never heard of anyone getting this treatment and was keen to hear from someone who had it. jean

[DaiCroParticipant]

Hi Jean,

The standard agenda for treatments in the UK is laid down by NICE (The National Institute For Clinical Excellence) which actbotany as a guidance and funding body. Their 'guidance' Is actually quite a strict funding regime… You can negotiate treatments away from their heddle but not from their funding, which carries no guarantees away from their 'guidelines'.

The standard funding guidelines/treatments are:

Frontline: CDT/RCD etc.

SCT: Stem Cell Transplant (Including preparations, pre-harvest, harvest and pre-SCT)

1st Relapse: Velcade

2nd SCT (or accrued remission from Velcade treatment for those who do not qualify for 2nd SCT)'.

Please note that those who do not qualify for the SCT route due to age will jump from frontline to Velcade.

2nd Relapse: Revlimid & Dexamethasone

3rd Relapse: Clinical Trials, previous treatments and or the kitchen sink

End of life procedures.

Of course there are trials and new treatments becoming available all of the time… In that regard it is an exciting time for myeloma patients… Especially those new to the disease.

I hope this is of help.

Dai.

[Author]

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