[deborahParticipant]

Hello again!

My mother was due to start treatment again ([url=http://www.myeloma.org.uk/patient-services/discussion-board/side-effects/velcade-experiences/]with Velcade[/url]) after her relapse, but she has now been offered to take part in the Myeloma X: Relapse (Intensive) Trial.

This trial will first involve some treatment with PAD (bortezomib, doxorubicin and Dexamethasone). Patients taking part will then be randomized, some receiving high-dose chemotherapy (melphalan) and a stem cell transplant; others receiving cyclophosphamide chemotherapy for 12 weeks.

Obviously this is a decision that cannot be made by anyone but my mother, but trying to come to a decision has caused her much distress?she's not sure whether taking part is in her best interests as a patient (her consultant was intentionally "neutral" when presenting the trial) and the last thing she wants to do is go through weeks isolated in a hospital room on high-dose chemotherapy again.

So I suppose I'm asking whether anyone here has any experience with the drugs mentioned here, or whether there is any research she should read up on that would help her come to a decision.

Thanks for any feedback.

[tomParticipant]

Hi Deborah

What a dilema, I thought the consultant could/would advise which way to go?.

I wish your Mum good Luck in the difficult decision.

Love
Tom "Onwards and upwards" xxx

[deborahParticipant]

I wasn't at the appointment with my mother, but apparently her consultant didn't offer any opinion on the trial either way. In fact, he stressed he needed to be "unbiased"?odd.

Thanks for the well wishes, Tom.

[eveParticipant]

Hi Deborah
it does sound strange that your mums consultant did not offer an opinion,but I suppose if the trials are on offer at this hospital,it could be seen to either not supporting the trials,against his own believe.So I think your mum has to be very careful here.
If you go to the home page there is MUKS three trials,plus if you type trials in information it will tell you about other trials going on!!!!
I do know about Velcade,in my husbands case reduced cells from 80% down to 6% in bones,we now wait to see if after SCT it maintains this position.

Your mum needs advice before making a decision,some times advice is not impartial.she needs someone with her,ask to see the consultant again,I find if you look them in the eye and ask them simple,if it was you,what you would do???they are only human,and you must make a judgement on there answer.
When we asked a question,how long,we were told 7 years with trials,did not believe a word she said,but still went on trials:-P
Hope this might help.Eve

[marycParticipant]

Hi Deborah

My mum was recently invited to be part of the Myeloma X trial too. Although it wasn't an easy decision at all, she has decided to be in the trial. She hasn't started treatment yet, so I'm afraid I can't give you any specifics about side effects etc; however, I understand that doxorubicin is quite an intensive chemotherapy and we're expecting the treatment to be tougher than her induction treatment prior to SCT (which was CTD). The main reason for her decision to be part of the trial was that, from the info we could obtain, the addition of a chemotherapy drug to dexamethasone and velcade appears to increase the chances of response quite significantly. (We went to the London myeloma info day last Autumn and one of the haemotologists talked about this.) My mum's hospital doesn't offer the chemo on top of Velcade/Dex without going on the trial, but I know that some other hospitals do…

Hope this helps a little.

Best wishes
Mary

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