Any experience with any clinical trials?

[si]

Hi Everybody,

My wife was diagnosed with lung cancer (stage IIIB/IV) back in january. Since then she's gone through the standard treatment regime (ie. various chemo combinations, iressa, radiation). We've pretty much exhausted all of those options and are looking at a couple of different clinical trials: the GVAX lung cancer vaccine, the NY-ESO1 vaccine etc. Anybody on this board have any experience with these or any other trials or experimental treatments for lung cancer? There's a whole lot of them listed under the new research bulletin board, and there's a lot of similar info on other websites, but i wanted to see if anyone's had any personal experiences with them. Any responses, positive or negative?

[Margaret]

Hi,

When I first started chemo in June 02, I was on a clinical trial drug in addition to standard (Taxol/Carbo). I was taken off the experimental drug when I had an allegeric reaction. I am presently on a clinical trial of Iressa/ZD6474.

What I like about being on a clinical trial is that I feel I am being closely monitored and that I am being given access to some of the newest developments. Right now, I have a CT chest scan every 4 weeks and extensive blood work/EKG's/etc. Not only do I see the oncologist each 4 weeks, but I have access to any of the personnel involved with the clinical trial to answer questions and to help me with appointments.

Good luck, whatever your decision.

Margaret

[marta]

Hi Si,

I happen to work in clinical trials in boston, and also have a mom in the same position as your wife. I've also been on the search for trials for her and I found a few things specific to what you were asking. She is not yet enrolled on anything so I dont have much in the way of personal experience, but the GVAX vaccine is a very very promising way to go. I spoke personally with the pharm company who makes it and the early results were amazing. However, they've been on hold from the FDA for a few months because of problems with harvesting the tumor. Before they can manfacture a vaccine, they have to pull part of the tumor out. This is dangerous and caused one death so far, so beware. I know they are making modifications to the procedure to make it more safe....

Good luck with the search, and let me know if i can be of any help in finding something in my area for you

Laura

[Guest DaveG]

I am presently in a clinical trial, Phase II. The drug that I am being administered is supposed to restrict the blood supply to tumors. The trial involves getting a shot once or twice a day, depending on the response of the patient. The shot is self administered, which my wife does for me, because it allows more sites for administration. If I gave myself the shot, I would be restricted to the legs, whereas, my wife giving the shots, we can rotate between the arms and legs.

I personally like being in the trial, as I am followed more closely, every 3 weeks. I am resupplied with the medication every 3 weeks as well. I also get scanned every 6 weeks. The last scan showed that tumor growth has stablized. I was taking the shots in conjunction with chemo (carbo/taxol), and now am just taking the shots, as my chemo has finished.

If I am ever taken off this trial, I will be placed on another trial. I go to the University of Wisconsin, Madison, WI, for my oncology, which is where the trial is being conducted. You will find that some trials are restricted to certain medical centers and/or clinics. This particular trial is being offered at UW and one other medical center, according to the release I had to sign before being entered in the trial. It is also restricted to a small number of patients.

Clinical trials are good in that you are participating in the development of new drugs. Not all clinical trial drugs, as you are probably aware of, make it through FDA to the medical market.

[Andrea S.]

I don't post much (mostly a lurker), but I just wanted to chime in about the clinical trials. My mom, who was dx'ed with Stage IV. adenocarcinoma in April 2003, has been on a trial since about May. I feel kind of silly, because I don't even know the name of it. However, it has been a very good experience for her. It consists of a 3-week cycle, combining 3 doses of the trial drug with Taxol and Carboplatin. She has had an amazing response and has wowed everybody - she's had a signficant decrease of the tumor in all areas, her kidney and lung functioning have held up well and she hasn't had any sickness. Of course, this could just be from the Taxol/Carb., but we have been very pleased overall. I would encourage to find out what you can. Also, her treatment has been free due to being involved with the trial, which is a nice bonus.

[Guest]

Thanks for all the input from everybody on this topic. It was really good to see that there's so many people here going through these clinical trials.

Margaret, thanks for your post on the zd4674, they actually have a trial with that hear in new york and we're looking into it.

Andrea, would it be possible for you to find out the info about the drug or treatment that your mom is on? That would be very helpful...

Good luck to all

[natalie]

Si-

I also am looking into clinical trials for my mom, so I'm glad you posted. One of the things I came across when looking for trials is that RFA to the lungs. From what I understand the best scenario is to have lung surgery...well now that have that RFA procedure to the lungs that some places are doing and they can burn out the tumor as if the person had surgery but it is way less invasive. As I have been told by doctors, once the primary tumor is irradicated it usually stops the cancer from spreading. So my thought is, the way to treat cancer is to get rid of the primary tumor first if there is a way to do it. The RFA is being offered to people that are not normal candidates for surgery...including Stage 4 patients. You can do the RFA concurrently with chemo. Just a suggestion to look into it further. During your search, if you hear of any good trials for Stage 4 with mets, will you post it? Thanks! Good luck!