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

Mercorby

Hi,

Okay, I'm trying to reach out another way.

I have metastatic endometrial cancer er+ pr+ her2-, mutations: pten, pik3ca, ctnnb1, SPOP, mss stable, and tmb low. I have been on Ibrance and anastrozole for 6 years. I know that there are possibly some doctors prescribing one of the other two CDK 4/6 inhibitors to endometrial cancer patients. I would really like to connect with someone who is in the same treatment regimen boat. Last night, I got desperate and joined a MBC support group (metastatic breast cancer), they are lovely and on the same treatment journey, but the breast issues are different.

So, HELLO out there!

Corby

NoTimeForCancer

Corby, I can't provide any info, but there is the Facebook page out there and I think you are active in SHARE. Nothing on either of those two sites?

Mercorby

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.

NoTimeForCancer

Mercoby, the gyn cancer researchers have to propose the clinical trial for such a treatment. If they don't do it then "possibly a future opportunity", sadly, is just that. As a past patient advocate with the NCI, I assure you that is how the standard of care changes. The 'one off' uses are not tracked so while an individual may have success, the data falls it to a hole.

It is the researchers who have to put a trial together and pharma will support. Pharma does not build trials. I agree, we have to advocate, but we have to understand the process in place as well. I do think we get crumbs from other, larger cancers (for example - breast, lung, melanoma, colon) but we need trials that move the mark.

I cannot imagine how you are feeling. It must be so very frustrating and (as you say) lonely. Hugs my dear. You do have the platform though as the patient who is living it.

Mercorby

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.

❤️

MoeKay

Hi Corby, sending healing thoughts and good wishes your way! Hope your test results give you lots of good information.

I also wanted to share a link to an article (in case you haven't already seen it) that might be helpful in your future uterine cancer patient advocacy. It is dated March 2023 and is entitled, "Uterine Cancer Mortality on the Rise, but Research Remains Underfunded." https://www.cancertherapyadvisor.com/reports/uterine-cancer-mortality-rise-research-remains-underfunded/

In April, it will be 25 years since I was diagnosed with endometrial cancer. I first noticed both incidence and mortality rising shortly after my diagnosis. For several years I wrote lots of letters and spoke to numerous experts in the field expressing my concerns about the lack of attention being paid to uterine cancer. No Time says the researchers have to put the trials together and the pharma companies will support the research. So my question is why is that not happening? I've watched the incidence and mortality statistics do nothing but go in the wrong direction for almost 25 years now and I don't feel like I'm any closer to knowing the answers than I was back in 1999. I realize that obesity has increased which has caused case number to rise. But with mortality also increasing for decades now, something else is obviously happening also.

For the first time this year, the number of deaths from uterine cancer (13,250) will exceed the number of deaths from ovarian cancer (12,740). I believe the time is long overdue for those researchers to start putting those trials together and getting them fully funded so that the trend I have witnessed for the past 25 years can start to be reversed!

Be well,

MoeKay

Mercorby

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

MoeKay

Hi Corby,

I was treated with surgery and radiation long before mutations were even mentioned. I was extremely fortunate to have a highly-skilled and experienced gyn-onc who performed extensive surgery including a pelvic and paraaortic lymphadenectomy (removal of 30 lymph nodes). He followed me for fifteen years until his retirement. While I haven't recurred to date, I had multiple risk factors for recurrence which caused me extreme anxiety for a number of years. But since then, I've been diagnosed with skin cancer and more recently for the very first time on my sixth colonoscopy, several precancerous polyps. So make sure to take time from your endometrial cancer advocacy to continue to get all those other body parts checked out!

Good luck and all the best to you,

MoeKay

oldbeauty

https://csn.cancer.org/discussion/comment/1713618#Comment_1713618

MoeKay and Corby,

Very interesting dialog. Corby, I am so sorry that your quest for info and connection is a lonely one. I hope the BC folks continue to be welcoming and engaged with you. MoeKay, I met with the geneticist last week. They took blood and will analyze for 48 mutations, and I'll hear in 3 weeks. I'm writing because I've been dx'd with uterine, colon and appendiceal cancers already. Not quite like you but same/similar culprits threatening. The geneticist looked at the mutations from my endometrial tissue, and then expressed interest in my mother's dx's of DCIS after lumpectomy and a malignant melanoma removed from her back. They showed me a Venn diagram of various cancers and mutations. The PTEN stood out to link what I've faced so far, with melanoma and breast cancer linked (and also pancreatic, if I recall correctly). They will also be checking both BRCA (?) mutations (my EC tissue had BRCA2 of "unknown significance)). I don't think there's a name for these "syndromes" (that are not Lynch). But I get regular skin checks and mammograms (I had a breast biopsy in 2017 that was calcifications), and I can't imagine what they can tell me that is actually actionable but I was interested and I do have a sister so....Neither the hematologist oncologist nor the gastro-geneticist would back my request for a genomic analysis of my colon tissue (I can pursue it at my expense, of course) bc they are regarding me as "cured" after surgery. I don't know what else we can do but be very vigilant. Colonoscopies, mammos and skin checks plus anything that doesn't look or feel right. I guess we are once bitten and twice shy thereafter. This board is very helpful for all of us in it for the long haul.

Thank you both for sharing.

You each have my best wishes for good outcomes and good health. Oldbeauty

Mercorby

Hi,

Just got off the phone with my colleague. Apparently, MBC is uncomfortable having me there in their support group because it is only for breast cancer patients, despite my having the same mutations and treatment plans as many in the group. Part of me is even more lonely and hurt and the other part is pissed. All these years, WE gyn patients had to go to support groups that were mostly made up of breast cancer patients with nothing specific for us. I won't alienate them and will peacefully try to resolve this, but I wish I didn't need MBC so much.

I'm supposed to go to the SGO GYN convention in a couple of weeks. I am too frustrated to even sign up.

I did get my ngs results back from the latest recurrence and although I got a few more, they will be targeted when we know this current treatment plan is not working. So, there is that relief.

Corby

Mercorby

https://csn.cancer.org/discussion/comment/1713624#Comment_1713624

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

ConnieSW

Thankyou for this dialog.

Mercorby

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.

BluebirdOne

https://csn.cancer.org/discussion/comment/1713636#Comment_1713636

Mercoby,

I have been following with great interest your story. That is really a low blow that the MBC folks have given you. We are all in this together. I am proud that we here have tried to help those who could not find an active board for them, pretty sad that they were not willing to help a fellow human being who needs the help.

xxoo

Denise

Mercorby

https://csn.cancer.org/discussion/comment/1713733#Comment_1713733

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.

Mercorby

Good news! Even though the MBC support group isn't an option, the manager is allowing me to use the helpline for support and will tell her staff/volunteers that I may call and I can call her directly. She really did understand my situation and why I would feel the way I feel. I am very grateful for that. Good solution for me. I also found out that in metastatic bc, it is highly unusual to stay on the same regimen after two recurrences, even if when the mutations haven't changed. Of course this list me even more confused.

I had been trying to see a breast cancer dr to get a second opinion about staying on the Ibrance/anastrozole regimen and couldn't get in to see one. My gyn onc understood the need for this input and has volunteered to run my case past her friend, who is a bc dr. That was yesterday (Friday), so I'm not sure when I will hear back. My dr will be at SGO next weekend, so I can ask her in person if I don't get a call or email after.

The gyn onc also told me that more endometrial cancer patients with the same info as me are starting to use cdk 4/6 in our center. My long success was a good sign for them to try. Feeling a lot better and a little more hopeful about going to SGO next weekend. What kind of swag might I find there?....uterine shaped erasers?

Thank you all for your caring comments for me. I hope we can get more advocacy going.

ConnieSW

I’m so glad to hear this.