I have been on a lonely journey. Dx in 2015, 4 recurrences (3 of which were not technically recurrences). On Ibrance and anastrozole for about 7 years. Hanging out in Metastatic Breast Cancer research and forums to learn about side effects and learn about their treatments options when this one fails. Frustrated that I don’t have the same options as MBC patients because funding for EC/UC research is so low and progress is 3 to 5 years behind.
This type of EC/UC is in the NSMP (no specific mutation category) which is even more underfunded and researched despite representing about 40 to 50% of us.
Who else is in this category? How is your cancer being treated? Where are you being treated (research cancer center or local medical community)?
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Merma
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Merma, I feel your pain. I was diagnosed with clear cell endometrial cancer which represents only about 5% of all ECs. It is very aggressive and I live in fear of the inevitable recurrence because I know that there is nothing out there for me. I had metastasis outside of the pelvic area during chemo (!) and radiation followed. My genetic profile and biomarkers do not align with any of the new treatments and the lack of research for my cancer in particular and EC in general is more than frustrating. You are certainly a thorough researcher and on top of your care, for which I applaud you. The brick wall in front of us needs to be knocked down because it is difficult to live with diminished hope. Keep the momentum going. I hope that somebody out there can provide you with some valuable information. I am in your corner.
Thank you for this reminder. I was told that upon recurrence a new report would be requested as the markers & pathology might be different from the original ones . So we would be starting from square one if we went that route. I would also be getting second and third opinions (again), because we don’t give up until we try all of the doors and windows
Awesome! With recurrences, you may or may not have different pathologies and markers. I've had 4 recurrences. They were all basically the same. After my last recurrence and non-recurrence (vaginal cuff - recurrence, lung nodule - was just sitting there for 9 years), there were some new mutations, but no new targets. So I'm on the same regimen until the next recurrence.
The key is the monitoring. I am on the six month PET/CT schedule because that is the only way they have found my recurrences. Technically, only the vaginal cuff was a real recurrence. The first, (18 mons after the hysterectomy) was minimal residual disease in 2 pelvic lymph nodes. The second, (6 months after chemo ended) was from a contamination during the hysterectomy - it landed in my stomach muscle. They had been monitoring the lung nodule since 2015. It had been doubling in size, but didn't light up until I had too long of a break from Ibrance.
Needless to say, I'll always be on some drug or another unless they find an immunotherapy or adc, or PROTAC or something else that cures it.
In the meantime, like many people with mbc with my markers, it's a chronic disease. For me, they treat it with the "whack-a-mole" approach by using radiation to spot treat. That is not how they treat in mbc because the recurrence often lands in hard to treat areas for them.
As soon as I was able to accept that it's a well-managed, chronic disease, it became easier to live with. Although I hope for a cure, I just need to keep on top of my next options. Unfortunately, those may be still stuck in mbc. But knowledge is power. Who knows, I may be able to get access because of my determination.
You are indeed determined and on top of everything! Re your final sentence, you could be right. A friend with recurrent gastro cancer and a BC gene was able to get a drug that was only recently approved for BC patients. This happened because of the determination of his oncologist at MSCC. I will pull my report and re-check to see if anything new has come out for my markers. Thank you for the push and best wishes.
I stand with you I have all those mutations and more. Onc Live has info regarding MBC, and of course we know that’s where the money goes. My oncologist says if we need to cross over to the BC meds we will cross that bridge when we get there.
I’m not sure possibly because I’ve had this for 10 years. I was slated for a clinical trial 5 years ago and at the 23 hour before starting, the drug company stated my lungs were too scared.
I was on Ibrance (cdk 4/6 inhibitor)and anastrozole for 7 years. But by the end, my blood counts took longer and longer to recover. Now I’m on Everolimus (MTOR inhibitor) and anastrozole, Both the MTOR inhibitors and PIK3ca inhibitors increase your blood sugar and cholesterol. I was on 7.5 mg of Everolimus and became anorexic, had to go on a statin, food tasted terrible - it was awful. However, I’ve had no problem with the 5 mg dose.
Keep an eye out on the SHARE site for the NSMP Support group on April 8th. That’s our molecular category. It’s more like a study group.
Have been on the Everolimus and Letrozole for about 3 years. Had to increase my statin to 10 mg six months ago, bloodwork monthly. Hopefully everything is going well I feel good and see my oncologist next week.
Eli Lilly just acquired the company in January. I am hoping to find out more at the SGO/FWCin Seattle conference next week. Eli Lilly also has a pill form of SERD that I am interested in - imulestrant.
hi going to see my oncologist in the morning. I cannot open the over link to the scorpions.com. I wanted to be able to read a bit more. I have the information that you provided, let’s see what her take is.
I totally agree that these side effects are somewhat debilitating. I think that we follow the same path with most of the same genomic findings. I need to look up some information I’m imulestrant, and take it back to my oncologist next week.
Well it looks like I may be revisiting my oncologist again. My ct scan showed 2 lesions in my right lung have increased. I’m taking Everolimus 10mg and Letrozole 2.5mg. Now I’m not sure just what she’ll want to change this to. I know that you were on anastrozole for years. Maybe that would be a good fit for me. I really would not like infusion again as each time I had it I would get sicker and sicker. I just don’t know what to do.
Ugh! That’s our cancer…whack a mole, er persistent (I think is the correct term). I am so amazed that you tolerated the 10 mg on Everolimus. I don’t think they’ll switch you to anastrozaole, but maybe to fulvestrant…if it’s cancer. There’s a Piqray + fulvestrant trial. Also, there was a study, I think at Dana Farber, that put Metformin, fulvestrant, and Everolimus together.
There is also a game changing PIK3 drug coming out sometime soon. Eli Lilly bought the company that made it and I believe it will be in clinical trials for both bc and ec.
Also there are many adcs in clinical trials, so one of may be an option for you. Lots of possibilities.
My doctor says that I have a well-managed cancer. Sounds like yours is too.
When I saw her last week I made reference to the new trials, and the Eli Lilly PIK3 drug. She mentioned that I remain stable, until my CT scan on Friday.
I will see what’s in store for me this week. There are possibilities and Always hope.
@Merma, determination appears to be one of your superpowers! If you are going to the patient advocate forum at SGO (tomorrow, 3/14), come say hello. I'm on the patient panel happening right before lunch. Best to you!
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helloI’m Lorraine 
Scared Sh%&less
Up at night walking the hallway, again, due to chemo induced peripheral neuropathy…I’m so tired of hurting.. 
Support group participation
endometrial adenocarcinoma, grade 3
