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Clincal Trials - creating new/more cancer?

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

musiclover
09-26-2006
05:03 PM EDT re: Clincal Trials - creating new/more ... [reply]

I'm at odds with the clinical trials, at least for those with stage IV. For one, there is no end in site. Other's treatments I continue to read are "I went on so-and-so for 4 months...". With the Clinical Trials there is no definitive end. They continue until 1) the patient decides to go off themselves 2) if the cancer begins to grow again 3) if the patient dies, obviously.

Question - there seems to be a point where the trial has done it's job, tumors have shrunk, surgery may now be possible BUT the doctors continue with the trial until it shows progression again. At this point, the point my friend Mark is at now, they will need to be taken off the trial and put on a new one. This leaves no opportunity for doing a surgery to remove the smaller, shrunken lesions. Mark's last doctor explained before be began the last trial how noble it would be for him to do this since he would be paving the way for future cancer victims, doesn't matter that he dies in the meantime. If I'm sounding bitter, I am. I would love some thoughts on this...

CAMaura
Posts: 719
Joined: Feb 2005

Okay, here is a really strong statement -- but I have to say what I feel. A clinical trial is meant to test a drug regimen -- at the expense (sometimes) of the paitent. It is a 'historical' procedure; your friend is a guinea pig. I know I sound shameless right now, but this is the way I feel. I cannot help but worry that with a clinical trial the drug and info about it comes before the patient. I do not know for sure about your experience, but i would worry or be very careful. I know that advances have been made, but when I went for a second opinin and was offered a clinical trial and a world-famous teaching hospital, I felt like a number and I lab rat. I am not saying that the other drug would have been horrible, but I was scared and did not feel the connection which i needed to go along with chemotherapy. I am sorry that I am not saying the most positive things to you, but I understand your frustration from the patient's side (if only vicariously) and I certainly am in awe of your care of your friend. I would seek another opinion -- and soon. As negative as this sounds, I hope I am urging you to keep up with your efforts. I feel that the care of your friend -- not the drug efficacy -- is the most important issue. All the best to you - Maura

TheBean's picture
TheBean
Posts: 9
Joined: Sep 2006

It is true - clinical trials are for testing new drugs and the actual patient seems to get overlooked. For stage IV folks (like myself) they can almost be a last resort. However, you can opt out at any time if something else becomes an option or a choice. Your friend may want to seek an opinion from another doctor - not his original one and not one involved with the trial. I am currently seeking info in clinical trials I might be able to get into as well as surgical procedures that may now be available to me as tumors have shrunk. Unfortunately, the last chemo stopped working on me so I was forced to this point but maybe it will turn out best as I would have had to stop any chemo before surgery anyway.

At the end of the day, we have to be our own advocates for our healthcare. We have the biggest stake in it and the only non-monetary one.

Best possible wishes to you and to your friend. Sounds like he has a good friend and advocate in you.

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Thanks for your replies. I hope I have the strength to allow Mark to make up his own mind. I'm not a fan of the trials - the last one didn't work. In my opinion it went on too long. Tumors started growing and a new strange lesion has suddenly appeared. Mark likes his new doctor and the doctor has told him this is the way to go. We are going to get a second opinion tomorrow. This is at another County hospital with his original oncologist. He really likes her as well. They didn't have the trial at that hospital so he moved to the one he's at now. He, fortunately, continued to see oncologist number one. Although she is nice and sees Mark as a person rather that a lab rat, she is still gung ho about clinical trials. I have my 30 questions ready - I'll keep everyone posted on the outcome. Thanks again.
Kathryn

nudgie's picture
nudgie
Posts: 1482
Joined: Sep 2006

I agree with the other folks. Clinical trials are for testing new drugs within certain groups of people to see if the affect works and if not why, but on the other hand, if these trails did not take place, the therapies we currently undergo would not be available so it is a two-edge sword.

My opinion is to get 2nd, 3rd and maybe 4th opinion from doctors outside of the trail and maybe out of state. That's one thing about doctors, there is always one or two out there that specializes in the area you need. Keep faith and I hope he chooses what is best for him.

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