CDK 4/6 inhibitors and either an aromatase inhibitor or fulvestrant & Metastatic Endometrial Cancer

I have had to resort to metastatic breast cancer support groups and forums because it is very, very rare to meet an endometrial patient on my treatment path. Many of the ladies in MBC are on my treatment path but are much further along in their breast cancer journey. The current treatments for endometrial/uterine cancers are mostly immunotherapies and chemotherapies. Onc gynecology considers my treatment path promising and possibly a future opportunity for research. But here's the thing, the research is being done in bc and a little in ovarian cancer. The pharmaceutical companies don't feel that retesting their products on endometrial/uterine cancer is profitable, so they don't get approved by the FDA. Medicare doesn't usually approve off-label use of medications. The only way around it is to have a doctor who is part of a study that is using the medication for a different thing. That's what happened to me. It was just geographic luck.

50% of the women with endometrial cancer have cancer that is er+ pr+ HER2-, pten, pik3ca, mss stable, tmb low which is pretty much the same as the hormonal breast cancer. So 50% of endometrial cancer patients do not have access to this treatment journey. Not only is this a loneliness issue for me, but it is an area of great disparity.

Again, another reason for more advocacy for endometrial/uterine cancer.

Hi there,

Thank you so much for caring and the hugs. I really appreciate that you get me. It means a lot right now - especially as I am awaiting the results of the NGS of my tumor and the pan-cancer panel. In the September recurrence, they didn't have enough substance to get any information. Now that there is a more solid tumor, we're hoping for better information.

I'm in the process of applying for the Uterine Cancer Patient Advocate program at NCI. Just did the 2nd interview and am waiting for the next application. So, I guess if I am elected to a position, I'll get a better understanding of the process. Most of what I know about the research process comes from my doctor, a researcher.

In the meantime, I cope by swimming (as much as I can), meditating (mostly about swimming), and just living my life.

❤️

Hi MoeKay,

25 years since you were first diagnosed! That's awesome. Are you on any maintenance treatments? Did you have recurrences? Do you know your mutations? Are you NED?

I just joined an advocacy group called PIK3CA Pathfinders which seems to be for breast cancer patients, but I have been honest and said that I have endometrial cancer and they seemed to have let me join. https://pik3capathbreakers.org/ I am hoping that they really would include us, so I can tell more endometrial/uterine cancer patients about it. I'm going to try infiltrating more of the breast cancer advocacy groups that relate to hormone receptor-positive cancers and see where that gets me.

We are late to the game of fundraising for research. I think we have to figure out how to better access the research that has already been done. Mutations are supposedly driving treatment, so it really makes sense that the research on specific mutations needs to have a way to be applied to different body parts - especially the body parts within the same system ie. women's reproductive systems. It will take teamwork and some kind of coordination to get the ball moving forward. Not sure where to start.

Thanks for caring and sending healing thoughts.

Stay well,

Corby

Last night, I learned about a fairly newly identified gene and set of mutations that may apply to you.

https://www.ncbi.nlm.nih.gov/gtr/genes/4913/. One of ladies who had breast, uterine, and colon cancers shared it last night. This might help your cause.

Corby

https://ijgc.bmj.com/content/early/2023/10/31/ijgc-2023-004739. The promise of combining CDK4/6 inhibition with hormonal therapy in the first-line treatment setting for metastatic or recurrent endometrial adenocarcinoma 

I figure that if I start posting the research, more women with ER+ PR+ HER2- endometrial cancers will start asking their doctors about it. 50% of endometrial/uterine cancer patients have this kind of endometrial cancer, yet there is very little research in endometrial cancer on this subject. (I have several articles, though). Endometrial cancer researchers call it an area of opportunity! The research in breast cancer is far more extensive - it hasn't been applied to endometrial/uterine cancer. Many of these treatments are being used first-line and for recurrent cancers. Far fewer side effects than chemotherapy. PIK3CA mutations are found in both breast & endometrial cancers. PTEN seems to be more prevalent in endometrial cancer, but it is found in breast cancer too.

NSMP. Endometrial cancer without POLE mutations, MMRd, and TP53 mutations is classified as a NSMP subtype, accounting for approximately 50% of endometrial cancers. Jul 31, 2023 https://obgyn.onlinelibrary.wiley.com/doi/10.1002/ijgo.14969. No Specific Mutational Profile! 50% of the women with EC are in this category, yet have no access to other treatment options. REALLY?

Ladies, we need access to more treatment options and more research in endometrial/uterine cancers. The number of women dying of this is growing by 1.7% each year. The statistics are worse for Black women.

So, we have a meeting on Wednesday about the support group. The MBC mgr and my boss are going to tell me how they can support me. I will try hard to keep an open mind. The reality is, that they have no idea of what the reality is in EC/UC research and treatment options.