Study for RCC??? Placebo or cancer drug?

I had 40 percent of my right kidney taken out 3 weeks ago. Went for my post op visit last Monday and the report was I have 3rd stage RCC. Dr said I could go in a study either get the real drug or the placebo. What I don't understand is, if she wants me on a cancer drug just put me on one. Who wants the placebo. This nothing but a sugar pill. Secondly, Dr. said we will get CTS done every 3 months to see if it came back. She said she got it all. She may have but what about the mets. Do you think I should just go to an oncologist? I need some advicce. Thank You in advance.

God Bless

Dsb

Briefly in regard to study participation:

pros: they pay--not you/you MAY get the very latest therapy, the best there is at the time

con:that's the nature of a study-they have to compare the investigational drug against something, either another drug, or perhaps no drug.  For it to be a well-designed trial, neither the patient or the doctor should know who's getting (or not getting ) what.  Everyone in a clinical trial is a volunteer.  No one is pressured to participate.  Nobody wants the placebo, but someone has to for it to be a valid trial.  Also, some trials compare two drugs, or two dosages.  Or some other variable.  Not all involve placebos.

A surgeon will often say they "got it all", but that means they got it all they can find.  If there's a met hiding somewhere else, it's going to be a problem later.  Suggestion: definitely go to an experienced kidney cancer oncologist.  Surveillance CTs necessary to check for recurrence.  We are in this for the long haul.

Good luck.

Bob

Hattie,

If you will re-read your post, I believe you have answered your own question!

Good luck in finding a good Oncologist.

Prayers and blessings,

B

You should definitely see an oncologist. From what I have read on this site IL-2 is the only drug that can get rid of the cancer.  Every other drug can sometimes hold it at bay but it comes back and you have to change drugs.  You may have to do IL-2 BEFORE any other systemic treatments. 

They can say that they got it all but that isn't necessarily so.  There are microscopic cells that can't be viewed via CTS.  My husband had stage 2 rcc with clear margins after right nephrectomy, removal of football size tumor with 50 cent piece size mets to diaphragm in June 2009.  He is now Stage 4 with mets to spine and lungs. 

I wish we had done IL-2 to begin with.  He has tried Sutent and Afinitor. 

Why take a chance on a placebo?  Remember, kidney cancer is one of those cancers that can go into spontaneous remission too.  Don't give up, they are coming up with new drugs all the time.

Hi

IL is only effective with specific Kidney Cancers. This is a direct quote and the link is at the end:

• IL-2 has a CR 7% unless the presence of alveolar features, no papillary features, granular features < 50% and major renal vein involvement. Pts with all these features had a 41% RR (16/39).  Source: 2003 ASCO Annual Meeting 

Do you enjoy Russian Roulette. I think placebo studies are Morally Reprehensibly except for some rare studies involvingpsychologicaldrugs. Ct’s every 3 months are the norm. They all say they I “GOT IT ALL” YES run do not walk to an other Oncologist one that understands RCC this one appears not to have any familarity with RCC

Yikes. Go to an oncologist right away, and don't go back to this doctor at all. There are numerous treatments for kidney cancer, all of which should have been discussed with you. Find a good oncologist. Also I think she's misinformed about the trial. Cancer trials in the US rarely have a placebo arm: patients usually take either the test drug or a reference, approved treatment. If you have any information about the trial (NCI number, sponsor, where it's being conducted), would you post it?

On Jun 14, 2012 1:26 PM anonf wrote:

Yikes. Go to an oncologist right away, and don't go back to this doctor at all. There are numerous treatments for kidney cancer, all of which should have been discussed with you. Find a good oncologist. Also I think she's misinformed about the trial. Cancer trials in the US rarely have a placebo arm: patients usually take either the test drug or a reference, approved treatment. If you have any information about the trial (NCI number, sponsor, where it's being conducted), would you post it?

I had surgery on May 8 at fox chase cancer center. came back 3rd stage. My surgeon is the one who introduced me to the study. I have no info anout it. Since surgery I have been very weak tired and my sugars went hay wire. Being I have a  2 hour drive,would have a driver, I know I wouldn't make the trip. Had to cancel and rescheduled for next thurs. The way I am feeling nlow I don't know. Now when I eat I get severe stomach pain. Will this ever end for all of us. God Bless!

Deb

On Jun 11, 2012 5:22 AM tommyv91 wrote:

Do you enjoy Russian Roulette. I think placebo studies are Morally Reprehensibly except for some rare studies involvingpsychologicaldrugs. Ct’s every 3 months are the norm. They all say they I “GOT IT ALL” YES run do not walk to an other Oncologist one that understands RCC this one appears not to have any familarity with RCC

 

 

She is the surgeon. Didn't direct me to an ononcologist. I will be ct Scan inAugust then see her. There are no rcc oncologists where I live in PA. Just the norm.

God bless

Deb

I have Stage IV RCC and believe that you are not receiving reliable information. My understanding is that no one receives a placebo in a clinical study. My oncologist told that it's unethical.

You need to see an oncologist. With the proper treatment, you probably have a 20% chance to live five years If there aren't any where you live, then go where there is one. How much is your life worth?

As for getting it all, cancer is a systematic disease, and there is no such thing as removing it all. As the one respondent said, cancer cells undoubtedly remain.

Please don't fool around with this. Be agressive; do not be passive. Ask questions. Read. Do not lose hope. Good luck and may God be with you.