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

Cs2021Mdl

I was diagnosed with Endometrial Cancer in March 2020 and had a radical hysterectomy. I received six chemotherapies and was in remission until this past October 2021 when I was told that I have a recurrence of the same cancer in my Omentum (pelvic area).

My cancer is a high grade serosarcoma. I am looking for information on treatments that other survivors with this specific cancer received or are undergoing.

NoTimeForCancer

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?

cmb

I have not had a recurrence yet, but in addition to what NoTime wrote, I would add that it's important to have genetic testing, if you haven't already had it. There may be other chemo drugs or immunotherapy options that are more suitable to treat a recurrence than were used during your front-line treatment. There are other women here who are using/have used other treatments during their recurrence, based on what their genetic profile indicated.

Afoste3

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

cmb

https://csn.cancer.org/discussion/comment/1691816#Comment_1691816

Anne-Marie,

Thanks for sharing the information on the Foundation One testing. This is so important for recurrence treatment options. As you noted, the testing identified an option not typically considered for uterine cancer.

I hope the new year brings the happy news that Ibrance is working for your mother.

els19

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.

Afoste3

https://csn.cancer.org/discussion/comment/1691823#Comment_1691823

Thanks cmb! I will provide updates once we know more.

Cs2021Mdl

https://csn.cancer.org/discussion/comment/1691783#Comment_1691783

Yes. thank you for your kind reply. I am going to start treatment very soon.

Cs2021Mdl

https://csn.cancer.org/discussion/comment/1691816#Comment_1691816

Thank you Marie for your detailed reply which helps me quite a bit to understand my situation. Today I meet with my Oncologist to discuss the Genomic testing. My biopsy specimens are being examined by Foundation One. I heard via my Oncologist's PA that she is prescribing infusions of Keytruda with another med however I don't have that name. I will keep posting my journey notes because I find great comfort to know that others are sharing theirs with me. I am sending healing prayers for you and your mother. Sincerely, Margaret

Afoste3

https://csn.cancer.org/discussion/comment/1692104#Comment_1692104

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

Whisperwill

It is reassuring to hear from others who have had a recurrence of uterine serous cancer. I have completed brachytherapy radiation and all but one round of chemo. It has been a long haul and fraught with unfortunate experiences. The good news is that the tumor is gone.

I have learned a lot this time around. Where I am, I see stressed out health care workers and a health care system struggling to provide adequate care. I had two excellent oncologists, but my care was switched to someone new who created an unbelievable amount of stress during my treatments by giving me useless answers and saying things that did not match my other (trusted) oncologist that I have had since the original occurrence of cancer. Finally, I succeeded in switching from the problematic oncologist. The lesson here that I learned was to just refuse to see the oncologist who was so awful. This is the tip of the iceberg of what I went through unnecessarily during the past six months.

To celebrate being told the tumor is gone, I bought a shirt that says, "No matter what happens, keep going." That pretty much sums it up.

During this time, I have tried very hard to listen to my own body and mind in terms of how active to be, what to eat or avoid, whose advice to follow or to question. It has been a relatively self-centered six months in terms of the choices I have made--I think that it is hard to put yourself first, but important. It seems like I picked pleasure over everything else ALOT!!! Despite being retired, I found it hard to choose to have days of completely goofing off. I don't think everyone has the same options, but maybe, were I to design a shirt, it might say, "Choose pleasure, the rest can wait another day."