Stage 3 Ovarian and Peritoneal

[DuCAR]

My mom was just diagnosed with stage 3 ovarian and peritoneal cancer. We have had a cat scan, MRI, blood test (CA125 at 1693). We are bouncing back and forth to either do a clinical trial or regular chemo (3 treatments, debulking, 3 more treatments). The reason we are torn is because the trial won't start for another two weeks. The trial will be with the drug Avemulab. 33% chance of getting the drug. Obviously we are stressed and want to start treatment now, can any of you council me on if clinical trials are good, and if waiting two weeks is ok? Thank you and I will appreciate any advice. Lastly it has been two weeks already since we found out, so it will be another two to start.

[joann86]

Hi DuCAR , I'm so sorry to hear about your mom. This must be a difficult time for the both of you, and I'm sure that the waiting doesn't make it any easier. As you might know, results of clinical trials vary from person to person. Have you tried talking to your mother's physician about which path might be best? Have they offered any suggestions?

[DuCAR in reply to joann86]

Thank you for the response. Yes we have spoken to 4 different doctors and they all agree this is the best possible option and that waiting another two-three weeks is not an issue for my mothers well being. So from when we found out to when we will start treatment will be just about a month, and I am curious to see if this is the norm or if I should push harder to move quicker.

[Tesla_7US in reply to DuCAR]

Waiting to research and then begin treatment is very stressful. I am wondering why anyone has suggested a clinical trial when first line treatment has proved quite effective? Are they having a hard time recruiting drug trial participants? What's the motivation to put your mother into a study when she hasn't even had first line treatment? Is a drug company paying doctors/clinics to recruit patients? Who is paying for the drug trial? Honestly, I'd just get going with the gold standard treatment NOW.

[mimanda]

I'm assuming that the clinical trial either gives her the trial drug or she might be randomized into the "standard of care?" If that's the case you aren't really losing (except for the 2 weeks) if she isn't randomized into the experimental drug. Standard of care is what basically any doctor should give her. I'm in a trial (after I was told the 4th time I had ovarian cancer there were no options left) and it has been a wonderful decision for me. I didn't get the trial drug at first but did later after the standard of care didn't work (some trials work that way). I get a lot of extra attention from a research nurse throughout and I know I'm contributing to science and helping others too! I know it all sounds scary but it all is and any decision you make is the best you can do! Keep asking question until you understand! Hang in there!

[eileen_alberti]

So sorry this is such a scary time for all of you. Here's where the saying "Patience is a virtue" comes into play. And sitting on a fence [trying to decide] is painful. Maybe you need one more piece of information to feel more secure in making a decision. Or the Yes or No column method to sort things out. I think your time lag gives you the opportunity for some of the shock to abate a bit. I did this in Dec-Jan. and I'm in the monthly decision process. I count on my gut feelings a lot lately.

Whatever decision you make. it will be the right one for you. Trust yourself.

Blessings, Eileen

[Tesla_7US]

Ducar, The standard treatment; primary chemo with carbo/taxol, debulking surgery to achieve R-0 status, "mop up" IV chemo (and possibly IP chemo with cisplatin/taxol) actually works quite well for many women. I've had this and I am currently in pathological remission from 3C OC for 10 months. (See my profile for details.) I can only tell you what I would do, so understand that whatever decision your mother chooses must be her own. Carboplatin/paclitaxel is the gold standard for first line chemo treatment. There is an enormous amount of longitudinal data to support it's efficacy. (research available on BioMed Publications) I would try that first and save any clinical trials for later possibilities if your mother does not get a "complete response" to the carbo/taxol, which is a known treatment. I would not gamble on an unknown for first line treatment. Save the experiments for later, if needed.

[Patticakes15]

I personally would not do a trial with a Chance of getting a placebo-start your chemo and search for trials with meds known to work that you can count on getting. We don't have time for placebos!!

[Hidden in reply to Patticakes15]

I received the gold standard of treatment along with a "clinical trial" drug. I told my oncologist up front I would participate in the trial as long as I has written assurance from him and the clinical trial that I would not be put on a placebo. I received it and started my chemo. You have to be your own advocate and be ever vigilant about your care. So far so good! I think placebos are cruel and inhumane and should be outlawed.