[faye1Participant]

Hi, my sister, who is 42, recieved a diagnosis yesterday of multiple myeloma and has to decide by Monday whether she wants the standard treatment or to go with a clinical trial.  Any advice?  She really doesn’t know which one to go with.

[sarowjenParticipant]

Hi
I have the same decision to make and have decided I will go with the trial.It is a trial between a few standard treatments to see which ones work best .The meds are all tried ,tested and approved and as part of the trial you could well be put on the standard treatment anyway ? I hope your sister is coping ok ,it’s such a shock isn’t it ? She is very young too xx

Kind Regards
Sarah x

[faye1Participant]

hi sarah, thanks for replying. i think she will end up going with the trial too. as far as i can find out the drug lenalidomide, used in the trial, is often used now in patients where their myeloma has returned and has had positive results. A big decision though. When do you start treatment?  let me know which treatment you are randomised to and all the best with the tratment.

Kind regards

Faye xx

[sarowjenParticipant]

Thanks Faye,I really hope everything goes well for your sister too . I should find out what they are going to do with me next week sometime so I will post on here when I know xx

[tootsParticipant]

Hi Faye I was diagnosed with mm may 2013 age56 still a bit in denal!! I had trail treatment which did not really work for me paraproetin at start 21 , after trial only dropped to18 not enough for stem cell which was important for me to have,I the hadn normal treatment thleomide (sorry for my spelling) which

proved to be a positive result dropping to 8: had stem cell July 2014 and I am feeling on top of the world , working & holidaying hard my best wishes to your sister but its in the hands of her medical team . mine being ruh bath

[faye1Participant]

Hi toots, lovely to hear from you and I’m so pleased that everything is going well for you. I’m trying to read up as much as I can but it is very complicated and as far as I can tell is very individual. My sister has decided to go with the trial and should start later this week. I don’t know what her para protein level is but I’m assuming that is pretty crucial information. Thank you for replying and I’m so pleased you’re feeling so much better.

 

[faye1Participant]

Hi Sarah. My sister too has decided to go with the trial and should find out and get her meds probably on Friday. So I will post too. Kind regards.

[Ang287Participant]

Hi Faye
My husband decided he would go with the Myeloma XI trial and you are then randomised and the computer in Leeds decides whether you are on it or not. He had his stem cell transplant 2 years ago and has been in remission since. He was then randomised again and is now on maintenance treatment which he is coping well with although I personally would have preferred him not being on any medication as before he was randomised for maintenance treatment he felt more normal – now he has 2 different medictions to take and there is a one month cycle which he follows. My husband is glad he is on the trial as he is hoping this will extend his life.
Angela

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