Who is participating in clinical trials here? What did it take to get accepted?

JustGrateful

I am having mixed results so far with treatments, my doctor won't say anything other than "he is concerned". I want to plan ahead and not wait until they say this isn't working, I want to have a plan in place. I will be bringing this up with him the next session to see what else is next.

po18guy

1.I have participated in four trials. If your scans are showing disease progression, then it may be the best to withdraw, if you are not automatically excluded due to that progression.
2. Is there a plan B? C? D?
3. Dunno how good your doctor is, but one who communicates better is a must.
4. Never be afraid of challenging or even leaving your oncologist for another. It's YOUR life!

legaljen1969

Sometimes when I see what all you folks have done and gone through, I feel like I am way too complacent. I just followed instructions and kept moving along a single path. I really didn't bother with second opinions and trying to find clinical trials. Just trying to cope with the fact I had cancer was overwhelming to me. I just wanted to expedite my journey.

For those who like to do the research and have easy access to a place that does clinical trials, my hat is off to you.

How did you find out about the clinical trials in which you participated? How did you get accepted? I just want to learn more for my own knowledge and "in case" I have to do battle witht the beast again.

po18guy

1. You must be at a facility which conducts clinical trials. Normally, this will be an NCI facility. https://www.cancer.gov/research/infrastructure/cancer-centers/find
2. Secondly, your oncologist/hematologist must be aware of trials, search for applicable* trials, or be humble enough to send you to another doctor or facility which offers the trials.
3. You can search for clinical trials yourself at www.clinicaltrials.gov
Be aware that there might be hundreds of trials. Examine those which are still recruiting (normally indicated in green), and which are at a facility to which you can travel.
4. There are conditions which allow you to participate, as well as conditions which will exclude you from a particular trial.
5. There are other considerations, but this is a start.

GregP_WN

I was offered the opportunity to participate in a trial. I had thought about it a while back but wasn't thinking about it this time. My oncologist who I was just seeing for the second time suggested it to me. The requirements for this trial were that you have recurrent HNSCC, which I am the unfortunate owner of. I will start sometime next week. Still waiting, waiting, waiting. There's a song in there somewhere.

Lindy

I found a trial I qualified for and had the paper work sent to my oncologist. I forced his hand and participated in a vaccine trial. I had excellent care from wonderful professionals.https://www.washington.edu/research/research-centers/tumor-vaccine-group/

2943

I sought a second opinion at UCSF 4 years ago and never left. I have taken part in several trials ( I have 3 primary cancers so more opportunities). All my doctors know I will participate as I want to help further research.
Your doctor owes you more than he is concerned if you want to know why. I would recommend seeking another qualified decision.

LiveWithCancer

I am not currently in a trial, but was in one for 4 or 5 years. It was wonderful. I would do it again in a minute.

Every trial has different requirements.

GregP_WN

I just read the question above this one on the questions page there is another person taking keytruda and a trial....I think. Maybe just keytruda, now I have to go look.

Lindy

I'm counting on Keytruda if I repeat my original diagnoses. I wish you every good response and lots of love which I know your Sweetie will provide.

2943

I was given Keytruda in a clinical trial as it had not been approved yet for that stage cancer. After 2 treatments, it stomped the tumor where the second part of trial ( ugly open chest surgery) was cancelled. I have been offered clinical trials thru my doctors( oncologists and surgeons) and I have hunted them down. This battle against cancer has new avenues opening every day for us. Yes, it is hard not to get discouraged but every time I see a new approval fuels my fire!

LiveWithCancer

@legaljen1969, when my tumors progressed on chemo and I was unwilling to go onto a less effective chemotherapy as 2nd round, my then-oncologist asked if I wanted to go into a trial instead. He referred me to a facility where trials were being conducted. That place did not seem to understand the urgency I felt, so I went to my PCP and asked if she could refer me to the NCI-designated cancer clinic in our area. That doctor had already looked at my history by the time I saw him for the first time and had the trial in mind that I was part of.

When I stopped treatment and went on "active surveillance," I told him I would be happy to do that as long as he had a solution up his sleeve for if and when the tumors become active again. He is a researcher. He spends more time in the lab than seeing patients. He promised to have some solutions for me to consider when the time comes. It is most likely that what he'll suggest will be a trial or two. (When they find people who are willing to be "guinea pigs," they are very happy. MOST people choose not to participate in trials, but I am a huge proponent for them.)

beachbum5817

@legaljen1969, I did exactly what you did. I just went with all of the doctor's that my breast surgeon suggested. I never thought to get a second opinion or ask about clinical trials. If the opportunity to be part of a trial would arise, I would definitely do it. I learned that if it weren't for the participants of a trial for Herceptin, I would most likely not be here 5 years later. Thank you to all of you who have participated in clinical trials and helped to make a difference in treating cancer.