Looking for Buddy to help me figure out my recurrence of Endometrial Cancer

Hello Cs2021Mdl - I am sorry to hear you are having to deal with a recurrence and we have women here you are dealing with it as well.

I am sure they will be along to add their support and provide guidance. Can you tell us if you are working with a gynecologic oncologist? Have you met with them and have they outlined any plan for you yet?

Hi Cs2021Mdl,

I'm here to support my mom--she has MMMT cancer, which is also high grade. She also did the 6 cycles of chemo and unfortunately recurred in July of this year. Her recurrence is also concentrated in the abdomen. She had her omentum removed as part of her initial surgery. Have you checked to see whether surgery can help address your recurrence?

I echo what the other ladies have posted--genetic and genomic testing is important. My mom had the genomic testing done through FoundationOne. While it looks expensive, they give a large discount based on income if the insurance does not cover it. My mom is on Medicare and it paid for the test. That test showed her tumor might respond to Ibrance, which is only approved for breast cancer right now. It is a pill, not IV chemo. She has just started it so we'll see. Point being we would not have thought to try that if she didn't have the testing done. The test will also show whether your tumor is positive for hormone receptors (estrogen and progesterone). This gives other options. It will also test for the BRCA genes--if that's positive, PARP inhibitors might work. Last thing is the report will tell you the number of mutations the tumor has, whether it is microsatellite stable or high, and whether it has PDL-1 receptors. These qualities will tell you whether you might be a good candidate for immunotherapy. Right now I think there are two immunotherapy drugs approved for uterine cancer--Keytruda and Jemperli.

So lots of options, but the test will help tell you what has a better chance of working. I'm sorry you're dealing with this, one day at a time is all you can do.

Happy New Year to everyone!

Anne-Marie

Yes, you do need genomic testing to see what treatment would work best. I am currently in a recurrence and I’m on Keytruda/Lenvima because my genomic testing showed that my tumors are MSS stable, as the majority of women with UPSC. Keytruda will not work alone but when they add Lenvima they’re finding great success. Keytruda with Lenvima was only approved by the FDA in March. Before that women were in clinical trials. Fortunately for me they learned a lot in those trials and they now know that a lower dose of Lenvima works and avoids the toxic side effects that so many women experienced in the early trials. But they’re still learning and there’s still questions. I’m UPSC grade 3, stage 3 and was originally diagnosed in April 2014 and did six rounds of Carbo/Taxol, 25 rads and 2 brachs. I was NED for over six years when I recurred in August of 2020 and was immediately put back in chemo and did another nine rounds of Carbo/Taxol which shrunk my tumors but not completely. After a six month break, I started Keytruda/Lenvima. My oncologist warned me that it did not work for everyone but when it works, it works amazingly well. So far for me it appears to be working. They really didn’t seem to know a lot about UPSC when I was diagnosed in 2014 and it’s amazing what they’ve discovered since then that is saving lives. They are now doing trials for Keytruda/Lenvima as a first line treatment instead of Carbo/Taxol. I’ve found a great resource in onclive.com. If you go to that site and click on gynecological cancers and scroll back you will find a wealth of information.

HI Margaret,

Thanks for your kind words. There are many ladies that have received Keytruda (normally paired with Lenvima) that have posted on the site (you can find the posts by using the search function). Els19 posted above and it looks like she is having good success with that treatment right now. So lots of resources here with "real world" experience, which is usually different from how the oncologists describe a treatment :)

Good luck and keep us posted as you feel up to it.

Anne-Marie