my first post

[Sabrina02]

Hello there, I’ve been dealing with this since 1/2015. I’ve had brachytherapy, chemotherapy, hormone therapy, cyber knife, immunotherapy, more chemotherapy, now taking Everolimus and letrozole.

I’ve always felt that this was a chronic disease after the medications stopped working onto the next regimen. I have done an enormous amount of research over the years and I feel like I have advocated for myself regarding this disease.

I haven’t been on this site much but came back to read that others feel like this is a chronic disease as well.

God bless us all in upcoming treatments

[Merma Moderator]

Hello and welcome.

Glad to hear that you have educated and advocated for yourself all of this time. For many of us, this is a chronic disease that needs active management. But knowledge is power!

I have also been on this journey since 2015. (ER+ PR+ HER2- pten, pik3ca + some new ones lately. 4 recurrences, hysterectomy, brachytherapy, ebrt, sbrt, chemo) Now I'm on Ibrance and anastrozole for over 6 years. My treatment journey is similar to many metastatic breast cancer patients only because endometrial cancer research is behind in applying it to hormone type endomentrial cancers. I'm always looking to find ec patients on a similar treatment journey.

Looking forward to seeing your input in this forum.

[Sabrina02 in reply to Merma]

Thank you, your absolutely right knowledge is power 100%.

I had genetic testing in 2015, it revealed ctnnb1, pik3ca, pten, arid1a, bcor, pik3r1, sox9, ms stable, er/pr+, her2-, msi-undetermined,

I’m sure there may be more with additional testing. When did you have a second genetic testing? EC is still so underfunded sadly, I wish that wasn’t the case

I did well on hormone therapy 2017-2021 tamoxifen and megace.

Be well

[Merma Moderator in reply to Sabrina02]

In 2017, after the 2nd recurrence: PIK3CA, PTEN, CTNNB1, SPOP, mss stable, tmb low

In 2024 (got them yesterday), after the 4th recurrence:PIK3CA, PTEN, CTNNB1, SPOP, mss stable, tmb low plus KMT2C, ARID1A, EP300, ATRX, PIK3R1

I did well on Ibrance 100 mg/ai until my blood just couldn't recover on the week off, but my doctor really wanted me to stay on it as long as possible. After much discussion, he agreed to knock it down to 75 mg and I've had no problem. We think the recurrences happened because I had too much time off the Ibrance between cycles.

[Sabrina02 in reply to Merma]

We’re all your recurrences in your lungs. All my recurrences have been in my lungs.

[Merma Moderator]

No, just the last recurrence. The dr thinks that it has been there for a long time because it has been growing for years and just started lighting up in Sept. That biopsy didn't show cancer, but the next one did.

The 1st recurrence was in the pelvic lymph nodes. The 2nd, was in my left stomach muscle, a contamination from the hysterectomy that chemo from the 1st recurrence didn't manage to kill. The 3rd was in Sept. in the vaginal cuff. They caught it super early - not much solid mass.

[Sabrina02 in reply to Merma]

Was the last recurrence caught with a ct or a pet. Following your hysterectomy did you have brachytherapy? So sorry that it appeared in multiple places.

[Merma Moderator]

All of the recurrences were caught with ct/pet scans. I had brachytheray to the vaginal cuff after the hysterectomy, more for prevention.

My treatment plan for recurrences seems to be a whack a mole approach using radiation as the hammer.

Had to look up the cyber knife. How are you doing after the varylung treatments?

[Sabrina02 in reply to Merma]

Radiation, was it targeted and did you experience fatigue from that particular treatment

I already had residual scar tissue in my lungs and the cyber knife seemed to exacerbate the situation. I was also very fatigued from the treatments. I think you had asked me about the new treatment side effects. One of the medications is raising my cholesterol, so I now need to take meds for that as well.

[Merma Moderator in reply to Sabrina02]

I have a little fatigue, but it’s not that bad. My worse issue is that it’s allergy season for me and I don’t know if I’m having an asthma issue or it’s related to the lung nodule. So, I just take my inhaler a little more often.

I think that’s part of why my dr is keeping on Ibrance. It has less side effects. But it does mess up my blood counts badly when it’s time to lower the dose. He’s even trying to keep me on the ai. But I think the next change will be from ai to a serd - hopefully not the shot in the bottom. There are some pill forms now.

Now, I’m working on losing weight. That may help the ai work better. Aromatase turns fat into estrin, a form of estrogen. Poor anastrozole could keep up when I was off Ibrance!

Do have any idea of what your next options might be?

[Groots66]

I am 70 and had full hysterectomy which my surgeon said was my cure only he said I needed no radiation or chemotherapy. Then one year later, it returned because he sewed an active cancer cell into my incision so then I had to have radiation, chemotherapy and brachytherapy. I found that the Rx they gave me for nausea just knocked me out. So, I been to Sprouts and got some anti nausea drops and lozenges which worked so I could continue working. Basically, I only missed 3 days of work during treatment but you have to want to go on and not give in.

[Sabrina02 in reply to Groots66]

So sorry about the recurrence, I pray that the chemotherapy and everything else take care of the cancer for good. Working will keep you sane it worked for me to keep busy. Glad that you found the drops and lozenges that work.

[Merma Moderator]

Wow! You are the only one I know that had a contamination spread like me! Mine was in the left rectus abdominus and was treated with intersistal brachytherapy - not a great experience, but no more cancer there.

[Sabrina02 in reply to Merma]

The brachytherapy was a few weeks after my hysterectomy. This is so that it didn’t return in the vaginal cuff. I believe the stats that were given at that time were less than 5% with this treatment.

[Merma Moderator in reply to Sabrina02]

Me too, except that almost 8 years later, it did return in the vaginal cuff. I didn't know there were nooks and crannies it could get into. Intersistal brachytherapy is no fun.