clinical trial participation

candlegranny · 09-07-2010, 08:22 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

vlcarr · 09-07-2010, 09:32 PM

Hi Bonita,

I can tell you about the trial I was in. In my case, the trial had to be done before any other "standard" treatment. This is how they are able to tell if the trial drug works.

I did the herceptin/tykerb trial. I took 4 tykerb daily and got weekly herceptin treatment for 3 months to see if this would shrink my tumor. One of the benefits of the trial I was on, was being able to have a lumpectomy vs mastectomy if the tumor reduced in size during the trial. However, they told me in the very beginning that I would not qualify for this because I had 2 tumors and together they were just too big to do a lumpectomy.

Most trials are done before surgery, however, there are some trials such as the vaccine that can be done after treatment is completed. I'm sure you will hear from other folks who've participated in other trials post treatment. In your case, the type of trail I did would not be for you because you are NED and there is nothing to measure success. However, there could be other types of trails that you qualify for. I just wanted to share my experience.

You can't assume you don't qualify for any trials just because you are NED. I would research what trials are available that your doctor may not be aware of.

I understand your feeling of helplessness, but that will get better in time. I completed radiation in May and my anxiety has decreased about the cancer returning although I know it will always be in the back of my mind. I haven't had my 3 month follow yet so I totally understand where you are.

It took me some time to realize that I just have to life my life the best I can, and all these feelings will now be a part of being a survivor. As you will hear it's part of my new normal but I've very thankful to still be here.

I did not have mets but I'm sure that adds to your anxiety as well. There are so many on our board who've been living a long and full life even with mets.

Sending positive thoughts your way.

kiwigirl · 09-07-2010, 11:13 PM

Hi Bonita
I had chosen independently to do a trial. The trial I'm on is for a vaccine and you have to be NED or stable and still on herceptin. There are a few trials you can do and by the looks of your signature you would be able to do what I'm on. I would highly recommend the trial . My Onc has been very supportive with it and said these things tend to work best in our stage of breast cancer. Good Luck Jacqui

candlegranny · 09-08-2010, 05:35 AM

kiwigirl, can you send me information about the trial? does everyone get the vaccine or some placebo? tell me what you can about the vaccine trial.

kiwigirl · 09-08-2010, 05:43 PM

The trial is run through The Tumor Vaccine Group at the University of Washington in Seattle. If you go to their web sight it has all the info on the trial. The basics of it is a peptide based vaccine that boosts your immunity and destroys any new cancer cells.There are a lot of people from with support group have been through this trial. It is a phase II and since i have been on it I feel great. You have to still be on herceptin for the duration of the trial. http://www.tumorvaccinegroup.org
For me i feel like this is part of my icing on my cake which finishes of what a think has been a great treatment plan.
Regards Jacqui