New Vaccine trial

[Colleenmary]

Has anyone had success with the vaccine trial? It seems to be a promising treatment. I hear it has been fast tracked by the FDA. So hopeful!!

Please share any information if you were a participant. Many thanks!

[lovemy3dogs]

I am participating in one at Mayo Clinic. I am BRCA1 positive and they used my tumor to develop a vaccine for me. It will be available should I have a recurrence. It still has side affects and there is a lot involved but certainly worth trying. I have been told they are getting good results on patients is has been tested on. They check my CA-125 every month so they can start treatment if my numbers go way up. Fingers crossed I will never need it.

[Colleenmary in reply to lovemy3dogs]

Wow! That's so exciting! Thank you for sharing. Which Mayo Clinic did you go to? Did insurance pay for that? I am so happy for you. It must feel so good to have something waiting in the wings if needed. I'm BRCA 1 as well and presently on a Parp inhibitor. Hoping that will last for a while.

[lovemy3dogs in reply to Colleenmary]

I’m on lynparza as well. I finished chemo 9/2019. I go to mayo in Jacksonville, Fl. It’s free because of the study. Not sure if any of it has been submitted to insurance but I’ve paid nothing.

[Colleenmary in reply to lovemy3dogs]

Thank you for all the info. All the best to you.

[Summergold2]

I am participating in a double blind study at Scripps in San Diego. Diagnosed Stage 3 Ovarian. They used the tumor and I went through a process called pherisos?? spelling where they harvested my dendritic cells and platelets to create the vaccine. 3 shots every week and then once a month for 5 months. I believe I am getting the vaccine as have had a low grade fever for about 3 hours after the shot but no other symptoms as of right now. Went through debulking 5 1/2 hour surgery and 18 rounds of carbo taxol chemo and will be on avastin until April plus the vaccine. The shots are due to end in Jan but I am guessing blood will still be taken once a month so far CA 125 is around 6 to 9 and scan in Aug shows NED .........Amazing stuff and I am not Braca and neither did the tumor have any mutations.

I think it is amazing if CA rises then it is probably on to Parp inhibitor.

[Colleenmary in reply to Summergold2]

Wow! Amazing!!! Sounds like you're doing very well! I'm so happy for you and thankful for your response!!! I'm stage 4 and on my second Parp. God keeps me going!!! All the best to you! Blessings, Colleen

[Summergold2 in reply to Colleenmary]

I am hoping that soon I will be well enough to fight for all women to have mandatory CA 125 OR an internal Sonagram at least every 3 years after 50. CT and internal sonagram is the only way to find it. I know CA 125 isn't always accurate and gives false positives but why is that bad????? If it is a false positive then you have to look further to confirm it was false DUH right??? Very frustrating because all health professionals say it is the silent killer! My doctor didn't find it I had a preventive CT scan by Body Scan International and THEY found it! Dr told me to run to my GP and in one week I was in surgery! When I was going home they asked how did I find it and I explained about the CT scan preventative and she said oh we don't recommend those...............OK I may be thick but really .......I will be doing them for the rest of my life every SIX months! Ok done venting

[Colleenmary in reply to Summergold2]

I agree with you completely! I have sisters and they have daughters. My sisters are BRCA positive. They all should be taking these preventative measures. Not everyone feels as strongly as we do but we can keep trying to encourage the testing!