Hello Everyone – found you at last been a while since Ive been on the old site but anyway caught up now !! Need advice please – I had my SCT on 22nd September at UCH, went to see Dr Rabin yesterday and they want me to go on the above trial – any input would be very gratefully received as I haven't got a clue what to do. Ive got until 5th January to decide so something to think about over Xmas ! . Hope you are all keeping strong and well
Hello Gill – no I have not heard of this trial and from what you say it doesn't sound as though your doctor has given you very much information on it. Did he tell you the results of your SCT? Does he want to give you this as a maintenance drug after your SCT? If you haven't had that information then I think it makes your decision difficult because of lack of information.
Can I suggest you contact either your consultant or a member of the team at UCH to get some answers to help you with your decision? You need to be really informed for your own sake. I do hope you get more information. Please keep us informed if you can.
Hello Gaye, I wont get the results of my SCT until 5th January – I'm having a bone marrow biopsy the week before Christmas. Apparently this trial is to prolong remission in patients that have had a SCT within the last 3 – 4 months. I keep hearing dodgy things about the effects of Velcade and am not sure if its worth the risk or not. But then if I could get a longer remission that would be brilliant – I just don't no at the moment thats why I was hopeing some one else on here mght already be on the trial.
Hi Gill nice to see you on here I agree wth Gaye you need more info , if I were you I woulld ring Dr Rabin he is very good at ringing back Please keep us posted love Bridget x
Gill, why not have a chat with the MyelomaUK nurse. She may well have information about the trial and could perhaps give you some questions to ask before you 'phone your Consultant.
kindest regards
David
Hello Gill,
I'm a bit uncertain about the term "Consolidation Trial", but my wife has had three cycles of Valcade since October and, despite some side-effects, seems to be managing so far. Perhaps this "Consolidation" tning is a different type of treatment?.
Best of luck, whatever your decision.
John
I did speak to the myeloma nurse but she hadn't heard of it either. Dr Rabin is ringing me on Monday with my latest para protein results so I will speak to him then. Have decided that if I'm in total remission in January I won't go on the trial and if I'm not I will give it a go.
Hi. My husband has just started Velcaide. He had his SCT 5yrs ago and has been on Thalidamide. He almost had to do a trial at Birmingham Hosp but (Thank God) Sarah at Myeloma UK helped get funding for it at Burton. The trial would have been fine but it was 50/50 that he would get the back up drug that goes with it. So I would suggest to get ALL the information you can about the trial. What drugs are involved, what they hope to achieve from it, the treatment that would be ideal for you at this time and the advantages/ disadvantages to having another treatment now. If you have a drug now "just to see if it will help" you will void getting it if/ when you need it in the future. That's a treatment that could be wasted… Think LONG & HARD about doing anything and everything. The NHS & PCTs can be miserable to deal with when it comes to treatments for MM. We have been trying to get the Velcaide for a year… Unfortunately patients are only a number and price tag to those people…
Best of Luck!!
Chelle
xx
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ChelleMc 13 years, 12 months ago.
