Can you have steroids in TDM1 trial?? need encouragement

fullofbeans · 03-26-2012, 12:03 PM

The swollen bits in my body has been diagnosed as super vena cava obstruction..i.e nodes around the vein pressing on it.. not good to say the least..

they want to put me on high dose dexa for the time being and we are scanning at 9 am in the morning ..they actually wanted to keep me in but i refused because I was unprepared for my puppy.

Anyhow I hope this will not affect the starting date of the trial which in the long run could be the answer..

I cannot see any thing about being on steroids as an exclusion criteria about the theresa trial.. does any one know for sure??

I am trying to remain hopeful it will not delay things but hoping hoping

Barbara H. · 03-26-2012, 02:49 PM

I started TDM-1 in 2007 and after a year developed lung inflammation due to the drug. I was put on steroids to help control the inflammation. I did not wish to stay on them and after another year I had to go off the trial. I still remain NED with Herceptin and Tykerb.
Best wishes,
Barbara H.

fullofbeans · 03-26-2012, 02:54 PM

I have a plan: I will phone the clinical trial oncologist tomorrow and find out. I think if they say I cannot be on steroids then I will refuse them and ask for a stunt (a minor operation that keeps the vein open by inserting a tube in it). I really want to be able to go on the trial, still have not been randomised tho, but i want that chance..

fullofbeans · 03-26-2012, 03:01 PM

Thanks Barbara just saw the response it sounds good it sounds like steroids was not an issue that would make things easier as maybe we may be able to keep a close eye on it whilst on steroids then start trial hopefully by next week.

I am so frustrated that my last scan was delayed by 6 weeks and the request for paraffin block was fax to my hospital last week and nothing has been done..so much time wasted..

schoolteacher · 03-27-2012, 05:13 AM

fullofbeans,

Hope to hear what you found out soon. Hope you are feeling better.

Amelia

Ellie F · 03-27-2012, 09:41 AM

Hi FOB
Recently sent you a pm after internet trouble. Sorry to hear that you are experiencing delays with the NHS but very glad that you have found a trial that's suitable. Hope with all my heart that you get T-DM1.
Ellie