I have been matched with a clinical trial...

Jodisgoing180

I received a phone call yesterday stating that there is a clinical trial that I match with.  They are calling my doctor, and requesting the pathology report.  It would be a phase II or phase III trial with immunotherapy.  I was wondering if people have had a complete response with immunotherapy.  I am stable right now.

 

Thanks,

Jodi

Lou Ann M

Great news

That is exciting news.  I am on the immunotherapy drug,Keytruda.  It is not part of a trial, but I  getting to use it under a compassionate use plan from Merck Pharmaceutical.  I have been on it since the end of July.  I have had a response to it, but I don't know if it would be called a complete response yet.  After 4 rounds my CT scan showed all shrinkage, after 4 more one grew and the rest stay the same.  I will be getting another scan in two weeks.  I feel better than I have for a very long time and my oncologist is very happy about that.  Side effects seem to be very minimal for me so far..  I am so happy t hear that there are trials going on for this.

Hugs and,prayers, Lou Ann

 

Kvdyson

Jodi, that is great news! I

Jodi, that is great news! I would appreciate hearing more about the type of immunotherapy you'll receive and how it works for you. Please keep us updated if you feel up to it.  I also recall that you moved recently. Hopefully that went well and you are all settled into your new home and like your new medical team. Best wishes for you on the trial! Kim

KTMay

If you are comfortable

If you are comfortable sharing, I would be interested in learning how you navigated the clinical trial system--was it largely your initiative or was your doctor heavily engaged. And how was the match determined? What testing did the institution require to make the match? My limited experience so far with seeking clinical trials for stage 3/4 UPSC is that they are few and far between and the doctors (including at reputable national cancer institutes) have recommended continued chemo therapy. I am told I do not have the PD-L1 receptor which is a key factor for success with keytruda so for that reason my doctor has taken keytruda off the table. Good luck to you and keep us posted.  KMT   

Jodisgoing180

Kvdyson said:

Jodi, that is great news! I

Jodi, that is great news! I would appreciate hearing more about the type of immunotherapy you'll receive and how it works for you. Please keep us updated if you feel up to it.  I also recall that you moved recently. Hopefully that went well and you are all settled into your new home and like your new medical team. Best wishes for you on the trial! Kim

Not moving yet

I haven't moved yet.  Probably in late-May.  I may go to the base sooner if I need to use the clinical trial.

Jodisgoing180

KTMay said:

If you are comfortable

If you are comfortable sharing, I would be interested in learning how you navigated the clinical trial system--was it largely your initiative or was your doctor heavily engaged. And how was the match determined? What testing did the institution require to make the match? My limited experience so far with seeking clinical trials for stage 3/4 UPSC is that they are few and far between and the doctors (including at reputable national cancer institutes) have recommended continued chemo therapy. I am told I do not have the PD-L1 receptor which is a key factor for success with keytruda so for that reason my doctor has taken keytruda off the table. Good luck to you and keep us posted.  KMT   

Details

My doctor is really engaged in the clinical trial process.  I went through Cure Forward clinical trial matching service.  I have stage IV ovarian cancer, which is treated similarly to UPSC.  I don't have the PD-L1 receptor either, and am BRCA negative.

I just filled out questionnaires, sent my pathology reports to Cure Forward.  They are contacting my doctor.  I'm moving in May to Colorado, so they are contacting UCH for clinical trials.  The doctor is also working with my new doctors.

SandyD

Jodisgoing180 said:

Details

My doctor is really engaged in the clinical trial process.  I went through Cure Forward clinical trial matching service.  I have stage IV ovarian cancer, which is treated similarly to UPSC.  I don't have the PD-L1 receptor either, and am BRCA negative.

I just filled out questionnaires, sent my pathology reports to Cure Forward.  They are contacting my doctor.  I'm moving in May to Colorado, so they are contacting UCH for clinical trials.  The doctor is also working with my new doctors.

Thank you!

Jodi, that's really helpful information about Cure Forward. I didn't know about the website. Have now bookmarked it. Also interested in the information on the site about testing for mutations. When I was diagnosed they only tested me for one mutation. Seems like something I need to look into further. Keep us posted on your treatment and how it proceeds. Hope you're matched with a treatment that makes a real difference for you!