Neratinib Clinical Trial - Page 5

v-ness · 09-01-2010, 06:00 PM

i was interested in taking part in this clinical trial. when i first read about it there was a site in springfield, MA which is near me, but now it says "withdrawn" next to springfield. the next nearest site is in worcester, which is a good hour from me. i wonder if those of you taking part in the trial had to go to the actual site of the trial for every single test they do on you? are you able to do any of it at your 'home' hospital? i live 2 minutes from my hospital, so it's a hell of a lot more preferable than an hour+ commute on an awful turnpike. add to that, i already missed some work for cancer and i'm no more interested in missing more than my bosses are. there are also several trials in boston, but that's 2 hours. i'd be happy to go on occasion for an all day series of tests etc. but can't give up a lot of time. how much time do you estimate you spend at the hospital for this trial when you take part? i would be eligible for one for early stage BC and my own oncologist said she'd be willing to support me in any way to take part in it and called me a "great candidate" (not sure why!). since Herceptin is drawing to an end for me in october i figured it was time to look into this. thanks for any info you can provide, besides the diarrhea.

v

ElisabethH · 09-02-2010, 12:52 AM

I have to go to the hospital managing the trial - it's about an hour for me too, and they don't fast track me through ecg or onco consult which means I spend a lot of time there. For instance I have to have an ecg on the 15th and the onco appt on the 16th because for some reason they don't 'do' ecgs on the 16th.... VERY annoying - I teach at a University so will still be on holiday, but I'm definitely thinking twice about continuing, but mainly because of the diarrhea...

KRISS · 09-02-2010, 10:50 AM

I don't find it too bad. My Onc sets up my bloodwork, ekg, muga and his visit on the same day and usually takes 1/2 the day. The fact that after the first visit or 2 you go to every three months makes it doable for me. I have been taken off and put back on twice now and am doing fine. Once was for the diarreaha and the other due to major drop in muga. You just kinda have to look at it as paying forward. Good luck to you.

v-ness · 09-02-2010, 12:56 PM

that sounds OK and doable. even though boston is farther than worcester or hartford, the likelihood of being in a better hospital is greater. dana farber or something. plus my sister lives out there and i could make it a social/medical visit. like you, i believe in paying it forward. i've given gifts to others with breast cancer, but helping test a drug that could help save lives - what a true gift that would be for so many more people. valerie

Victory · 09-07-2010, 03:01 AM

hi ladies,

i have been asked to participate in Neratinib trial here in New Zealand, by reading your messages i know that diarrhea is the most common side effect. But I read that it may also changes the liver function. For those of you who are taking neratinib for more than six months does it cause any liver problem? Thanks to all of you.

Victoria

kiwigirl · 09-07-2010, 07:28 PM

Hi Victoria. Welcome I to live in New Zealand I just wanted to say hello. Sorry I can't answer your question there are lots of knowledgeable people on this sight who may be able to help.

Regards
Jacqui

candlegranny · 09-07-2010, 07:44 PM

I am so confused. I saw my oncologist today and asked him about clinical trials that I could be involved in. I am half way thru my radiation treatments. I have had 14 treatments and 16 more to do. he told me i didnt qualifiy for any clincal trials cause they did the standard treatment on me and it worked. I am in remission he said. but i feel helpless just waiting to see if it will return. has anyone heard of this? i thoiught you can go in trials if you are NED.. but doc said what would we prove if there was no cancer to test trial drug on? anyone heard of this? so I dont need a trial? i am a little confused on this. thanks for your input.... bonita

Sandra in GA · 09-08-2010, 05:36 AM

It depends on the kind pf trial. With the vaccine trial I just completed, you have to be NED and have completed your last standard treatment (Herceptin) within six months. They are looking to see if you have recurrances and follow you for five years. Maybe your rad onc was talking about radiation trials.