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Clinical Study or Not? Clinical Study or Not?

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  #1  
Unread 03-27-2003, 04:17 PM
Clinical Study or Not?

I am confused about something and I was hoping some of you could help. When I saw my oncon. last week and we went over the pathology report, he talked to me about being in a clinical study - which meant that when I started the chemo I would be on one of two regimens - and that I wouldn't know which one until we began. Before that I have to undergo radiation for five or six weeks, daily. I live near Philly, about an hr's drive - so I found out that my local hospital has a very reputable radiology dept. I asked if I could have the radiology here, which would make a 3 hr. process become less than a one hr. process.
My dr. said ok (through his nurse) but now I can't be in the study. I will still get chemo in Philly, and probably the same regimen, but when I asked her if it would make a difference in my outcome, she didn't really answer. So, that is my confusion. Does anyone think that my treatment will be less than what it should be because I am not enrolled in a clinical trial study?
thanks!!!

gucu

TAH/BSO, Stage III, endometrial cancer
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  #2  
Unread 03-27-2003, 05:45 PM
Clinical Trials/Studies

They certainly are something to consider but you won't be shortchanged if you do not go into a study. What will happen is that you will get the "gold standard" chemo for your particular cancer--for instance, for ovarian, it would be Taxol/Carboplatin.
A study may add a third drug to that--I know people who've had for instance Doxil or Gemzar atop the "gold standard." I'd ask again why your radiation locally would prevent your having the option of the clinical study.
  #3  
Unread 03-27-2003, 06:35 PM
Thanks for your reply

I will ask again - I see him in about a week for my post op. I love your saying after you sign your name!
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  #4  
Unread 03-27-2003, 07:54 PM
Clinical Study or Not?

Hi, Gucu.

There is a long thread about this probably on the next page of topics. I asked a similar question about a week ago and many people contributed.

I did learn something interesting yesterday that may be of help.

In trying to figure out whether I wanted to participate in the trial or not, I talked to dozens of people -- including people who had coordinated "quality of care" ovarian cancer studies and the head of a national ovarian cancer coalition. I also talked to lots of friends and the kind women on this board.

After much soul-searching, I decided not to participate in the trial.

I met my chemo doctor yesterday and pressed him for information regarding his thoughts on the trial I was being asked to participate in. While he said his participant group was not of a statistically valid size, he did say that he had seen no discernable benefit to adding additional drugs to the existing "gold standard" treatment. He said the only thing he had really seen were additional side effects.

I think this is important information. I wish I had known this before I spent a week agonizing over this decision and contacting everyone I know -- and even people I don't know.

A doctor at USC confirmed via e-mail that the existing treatment is probably best for now, so I was also happy to hear that.

I start chemo Monday. Hope this helps!
  #5  
Unread 03-27-2003, 09:13 PM
Clinical Study or Not?

Gucu,

Please rest assured that your treatment will be in no way inferior because you are not on a clinical trial. As someone mentioned above, you will receive the treatment that is known to work. The treatment used in the clinical trial may turn out to be great, but if the docs knew it worked, it would be unethical to have a clinical trial, because everyone should get the "new" treatment! Take good care.

Beth
  #6  
Unread 03-28-2003, 07:57 AM
Clinical Study or Not?

s Gucu

My own opinion is different than those above. Until more women enter clinical trials, advancements in treating gynecologic cancers will be slow. (Particularly ovarian cancer and I realize your cancer is endometrial) With many trials the standard of care drugs are included in the trial treatment. I thank god for those women that went on the taxol trial, along with cytoxan and carboplatin in the early 90's. We never know when the next drug of great importance like taxol will come along. But things are not moving quickly.
If you live outside of Phila and can get to Fox Chase Cancer Center or the Univ of PA, I say go for it. They are on the cutting edge of research.
I myself travel from NJ to Fox Chase on a fairly regular basis. At the time of my diagnosis I nearly begged for a trial. However, my platelet count was extremely high and this disqualified me.
I wish you the best.
By the way, there is a great support group at Fox Chase for gyn cancers.
If you are interested, let me know.

karenann
  #7  
Unread 03-28-2003, 12:54 PM
Clinical Study or Not?

Hi girls

I'm not a cancer patient, but I've worked with clinical trials for many years.

I really just want to give some reassurance, in as much as if you partake in one, your life will never intentionally be put at risk, and you'll never be given substandard treatment. That's simply not how it all works.

I know many of you are concerned about receiving substandard, or second best treatments during a trial - please, be reassured. If anything, partaking in a clinical trial often means you'll get even better care, because the doctors are looking for every slightest possible abnormality, which might ordinarily be missed. A double blind cancer-drug study, for example (when neither doctor nor patient knows which combination of drugs is given), is under such incredibly strict regulations that even the slightest anomaly in your test results will have people states away from you sitting up and taking notice, and acting upon it

As Karenann said, if it weren't for these trials, many new treatments simply wouldn't get out of the lab and become available. They're not the answer for everyone, and there's never a guaranteed outcome, but they're something to consider with your treatment team.

Many s and blessings to all of you incredibly brave sisters.

Tess
  #8  
Unread 03-28-2003, 01:48 PM
Thanks to you all

I may have the clinical study after all. A good friend of mine is an oncology nurse at a Cancer Center near our home, and then have the clinical study there. I am going to meet with an oncologist from there on Monday to discuss my options. So it may be possible for me to have an oncologist closer to home, be in the study, and hopefully keep my gyn-oncon. that I am using now. I am hoping that I can get work this out like that. My primary dr. recommended that I see someone at this center just to have an oncologist close by, so I feel fortunate that I got an appt right away and also the person he said to see!

To all of you out there....thanks so much!!!!
happy weeekend!
gucu
  #9  
Unread 03-28-2003, 03:12 PM
Clinical Study or Not?

Gucu-
I have a gyne/oncol 90 miles away and an oncologist at a cancer center in my home town. The gyne oncol did my surgery and post op care and I had my chemo at home under the direction of the oncologist. This worked well for me. I didn't have to travel far. Plus there was a doctor & chemo nurses near by if I had a question/problem.

Both doctors called each other and sent reports. Now that my chemo is over I see one every 3 months trading off & on.

So you see it is possible to have both an oncologist and a gyne/onc handle your care.

Best Wishes

Ruth S
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