Recurrance of endometrial cancer to lung

I hope you achieve full remission and I am very sorry for what you are going theough. I was staged 3a endometrial carcinoma with metastasis to the ovary but no distal metastasis (yet). Full hysterectomy last month and I'll start chemo and immunotherapy (Carboplatin/paclitaxal and Keytruda) on March 10th. I will let you know about the side effects and how I manage through treatment if you'd like. How did you find out at the nodules? Was it through routine CT scans?

I'm sorry to hear that your cancer has recurred. That's a nasty shock.

I haven't gone into remission, but I have had carboplatin/paclitaxel twice for a total of 14 cycles, the second set of 8 with Keytruda added. I have a Grade 3 endometrial cancer, so I had chemo and radiation shortly after my hysterectomy, even though there was no cancer detectable. Then chemo plus Keytruda when it recurred, spread through my abdomen, 9 months later. I haven't had good luck with this combination, but some people definitely do make it to "no evidence of disease" status on this combination. Every cancer is different.

I think my experience on carbo/taxol was fairly typical, and I only had about 3 or 4 days of each 3 week cycle where I felt pretty bad. They load you up with long-acting anti-nausea drugs and steroids, so on the day of the infusion and the next day, I felt pretty good, though a bit sleepy. The second day after the infusion, a little less good. The third day and fourth days after the infusion were when I felt worst, and thought I would never want to look at food again. By the fifth day, I was improving, and by the sixth or seventh day, I felt pretty good again.

These drugs caused constipation for me. The first time I was on them I was trying to figure out how much Miralax to take. This didn't really speed up resolution of the problem, but made it messier when it did resolve. So the second time on chemo, I didn't worry about the constipation. It goes away in a week.

My hair started falling out exactly 2 weeks after the first infusion (both times). It makes a mess of your house, so I'd recommend shaving it off once it starts falling out in chunks.

Paclitaxel causes peripheral neuropathy. I was icing my hands and feet, but my feet are still somewhat numb. I decided that you should ice your hands and feet during the infusion and maybe for an hour afterwards, but then you should warm them up and keep them warm for a couple days. I think the numbness didn't get any worse once I started making sure to keep them warm afterwards.

I had no side effects at all from Keytruda, but then again, it didn't work on my tumor either. My impression from reading people's stories on this site is that most of the people who had side effects also had a very significant response of their tumor.

The first time I was on these drugs, I was thinking that I would do this once and it would be over. So I was really cautious and put my life on hold. The second time, I knew this was never going to end, so I went on with my life, traveled, etc.. You should see how it affects you, but you can probably live your normal life for at least the last two weeks of each three-week cycle.

Hello Fighter - I was diagnosed with Stage IVC endometrial adenocarcinoma in Nov 2023. I had 6 lung metastases (as seen on CT and PET scans) confirmed by biopsy. Gyn surgery in Jan 2024 (everybody out!), started chemo (carboplatin & Taxol) and Keytruda (dMMR status) in early Feb 2024. By April 10 (1 day after my 4th infusion) I was N.E.D. (no evidence of disease). I had 1 more infusion "to mop up", took a break for 6 weeks to recover from feeling like total crap, then resumed Keytruda alone. During that break I had 10 days of prednisone (steroids), which felt like a miracle drug. I felt like me again, only 20 years younger. I have remained N.E.D.

I had the gamut of side effects, but no nausea. Did have muscle/bone pain, real fatigue towards the end. Major major diarrhea resulting in magnesium infusions. Angry itchy rash on most parts of my body. Tendonitis resulting in having to wear an ankle brace. The most serious effect (and fairly rare) was uveitis - inflammation in the eye. Totally freaked out my medical oncologist, but my eye doc was chill, treated it with steroid eye drops, and all is well. Bottom line is chemo wasn't fun, but I did get thru it and I will go thru it again if/when I need it. I am alone and managed my life just fine on chemo (tho lots of naps and comfort food, and sometimes dishes piled up in the sink.)

I'm retired, so didn't work. I could have worked the 2d and 3d weeks of my infusion cycles for the first 3 cycles, but after that I was too fatigued to get much accomplished. There were days on end when I didn't get off the couch. I didn't change my dietary habits.

For stress and anxiety, I rely on my support groups. Friends and neighbors for rides to/from all the myriad procedures/surgeries. Wonderful friends who listen patiently. And I found an amazing cancer support group. It meets weekly. It's about 20 people on a crowded day, virtual and in-person, from all walks of life, all ages, cancers, backgrounds, etc. I have come to care deeply about these folks, and miss them when I have to skip a session. And of course, there's the occasional lorazepam.

You can do this. Wishing you all the best. Blanchette

@fighter2025 Welcome to Mayo Clinic Connect and to our Gynecological Cancers support group. With the initial diagnosis of endometroid adenocarcinoma, FIGO Grade 1, Stage 1 that must have been a terrible shock to get this recurrence news with the adenocarcinoma in the lungs. You are already receiving information and support from our members and I'm certain you will continue to receive more. I had a recurrence of the same diagnosis as you 1-1/2 years after my initial diagnosis and hysterectomy. My recurrence was in the vaginal cuff and I was very shocked to get that news. Once I started to work with my cancer care team on tests (PET/MR) and plans (radiation therapy) I started to come out of the shock and feel better because there were plans in place which felt like something I could grab onto amidst all the fear. I have been NED (No evidence of disease) since finishing the radiation therapy in 2022. I still have the fear of recurrence or another new cancer although the fear no longer is in front of me - it's more like in my rear view mirror but it's still there.

When will you start chemotherapy and chemotherapy?

Wow, thank you taking the time to share from your experience. You have been extremely helpful. Praying for you to hit that NED status. Hang in there 💪