Endometrial SEROUS carcinoma

I am currently doing chemo with Keytruda, Paxol, and carbaplantin. I already had some mild neuropathy in one leg after having my sciatic nerve “nicked” during a hip replacement five years ago. So I did some reading and discussion with my oncologists, and decided to use cold packs on my feet and hands. There are research studies on these lowering the rate of neuropathy. The evidence for cold caps to counter hair loss is not very positive, and both my oncologists (one at MD Anderson), said it wasn’t worth it, mostly because the skull is really thick. I got cold packs for hands and feet through Amazon at a fairly reasonable price, but you could probably bring any ice pack from home. The onky real problem is that Benadryl puts me to sleep, and having cold hands and feet gives me the worst naps ever! Good luck with your journey.

MSJ19 and ShelaghE,

Thank you for sharing your experiences and insights. I will look into acupuncture and try the supplements to see what may possibly help reduce the neuropathy symptoms. My hands are super sensitive to cold, so cold packs and ice are so intolerable they are not an option for me. I plan to ask my GYN/onc about the CA marker blood tests. I wish you good health!

Obladee36, so much to say, but let me start by saying I am glad you found us.

I absolutely hate that you were NOT listened to when you were reporting pain and the oncology dietian was of no use. It is good to hear you realize gut health and trying to bring that in to balance as it will be important in the radiation phase of treatment as well. While you are down to one chemo to go, hopefully you have seen where women have iced their hands and feet to help lesson nueropathy and perhaps you can try that for the last one.

Hugs dear one.

I am so sorry you are coping with all of these issues without the kind of care team everyone living with cancer deserves.

Carboplatin gave my pretty serious tinnitus after my first round of chemo and much louder and worse-sounding after the round of 6 chemo sessions. What I found so helpful is Audible, the Amazon audio book company. I have it on at all times when I am not at work. and most of the time I am not aware of the sound at all. I looked for certain kinds of voices that I found were easier to listen to as background sound.

Warm wishes that you find some solutions that work to soothe you.

This is my first post. I was diagnosed in August 2023 with high grade uterine serous carcinoma. Within 4 weeks and consultations with 2 gyn/onc surgeons at major cancer centers, I had a complete hysterectomy by laparoscopic robotic surgery. My cancer was staged at IIIC1. The tumor in my uterus completely penetrated and affected the cervix and several sentinel lymph nodes. The omentum was clean and removed along with the ovaries and fallopian tubes , the bladder tacked up and a vaginal cuff constructed. The cystoscopy showed no disease or damage.

They tested for 70 genes with no positive indicators.

During my recovery from surgery, I complained of feeling like a hot poker was being stabbed inside me, and I went back and forth with trouble emptying my bladder and then losing control, along with diarrhea and constipation. I was told that nerve irritation was common with removing all organs vaginally.

A urinalysis at my 2 week post- surgery appointment showed a staph infection! After a week of antibiotics, I felt relief for a few days. Then pain returned. Incontinence was still a problem, as was constipation. Finally a CT scan showed Diverticulitis, which I had never had before. I was prescribed two different antibiotics. Now I had to figure out how to repair my gut biome and adjust my diet. The oncology dietician was not very helpful, but eventually I got it worked out. One thing that eventually helped is using a daily portion of Benefiber, a prebiotic powder, in my morning beverage. I also refused to take Zyprexa “to stay ahead of nausea,” as it caused severe constipation and dizziness. The nausea control in my infusions has been sufficient.

Yesterday I had my fifth carbo taxol JEMPERLI infusion, finishing with application of a Neulasta “patch” that will auto inject tonight, 27 hours post infusion. It is to keep my ANC white blood count high enough for me to safely receive my 6th infusion in February. Based on the previous 2 applications, I will have bone pain and muscle weakness in my legs, as the drug draws from the bone marrow to increase white blood cells.

My biggest issue now is Neuropathy. I get burning and tingling sensations in my hands and feet, fingers and toes, and my walking is often a bit unsteady, which I am told is from muscle weakness. Claritin, Naproxen 500 mg and acetominaphen 650 plus lots of fluids, magnesium and mild activity help somewhat. Sadly, I’ve noticed the symptoms have increased after each round of chemo. No one can say if they will disappear after chemo is done. It’s been suggested I add supplements of B-6, Alpha Lipoic Acid and Benfotismine (B-1).

I’m wondering if anyone else has used this or another supplement cocktail for these symptoms?

Have the symptoms diminished or resolved over time?

I asked how they know if the chemo and upcoming 25 rounds of radiation have worked. Neither of the women’s centers use CA marker numbers in my case, since there are no tumors. I’m told there is no bio marker. They will rely on CT scans every 3 months for 2 - 3 years, then 6 months, and annually after 5 years. Knowing there is a fairly high rate of recurrence, I will have to use meditation and other tools as I live my life from scan to scan. I’m a fairly optimistic person, and also a realist. I don’t want to waste energy on worrying. By the same token, I hate having to plan my life around doctor appointments.

I’d appreciate comments, suggestions and insights on any aspect of this post that resonates with you. Thanks for reading to the end.

Hi, I was diagnosed with the same cancer as you. I did chemo and radiation the first go round but found out it had spread to two new lymph nodes in my abdomen about six months after the last chemo round. That was when I started Keytruda/Lenvima which was in January this year. It did make me feel tired and I had diarrhea a lot however that has gotten better. My main issue now is my voice. It comes and goes. Sometimes I talk normally and other times my voice is very soft, making me sound like I am 100 years old! Overall I would say the side affects are not that bad. I did find out that the treatment is working as the two lymph nodes are smaller and less bright on my last PET scan. Good luck to you, hang in there!!!!

Hi all, people have been talking about their status and treatment. I thought it might be helpful to add my situation. So May of last year I was diagnosed with serous endometrial, stage 3c, so a very bad thing as y’all know, but not as bad as it could be. Started the standard chemo, carboplatin and paclitaxal (sp?). On my third cycle, they added dostarlimab, it having just been approved for stage three, four and recurrent based on the findings of the Garnet and Ruby trials. After chemo, I had external and internal radiation. Now I am on the dostarlimab maintenance and hope I will be for up to the maximum of three years post chemo; after the few months recovery from radiation, I’ve been doing really well with no permanent side effects. My cancer is dMMR negative, so the outlook is quite a bit better with the dostarlimab maintenance than it would be otherwise … In the Ruby trial at my follow up timeframe somewhat less than 60% with dMMR negative still have stable cancer status (it would be about 1/3 that with dMMR positive. Except the study had only one or two serous subjects and just a few or several more with similarly agressive histology., and I’m stage three rather than stage four or recurrent so there’s really no plausible estimate generalizable to me. MyCAT scan a few weeks ago was clean. My Signatera result has been negative since August and CA125 has hovered between 7 and 9 since the new year.

I’m 66. Feeling and expectations… i’m feeling pretty confident that I am going to remain cancer free up to the time I stop taking the dostarlimab, but after that all bets are off. I definitely don’t feel lucky. I suddenly acquired epilepsy at age 40 or so for no apparent reason and my marriage has turned somewhat sour so I tend to be a bit angry and depressed at times about being cheated. I work hard and I’m a good person though by no means perfect. I get counseling from a social worker at my oncology practice which has been very helpful. I I’m not in any support groups. I went to one session and was just depressed afterwards. i am also getting pelvic therapy and realize that I’m lucky to have that available to me. I have regained some positive feelings about myself and motivation to do things for myself but I wish I were doing better in those departments.

I think that’s about it. Maybe some of this is useful for some of you.

oh, one other thing. It will probably make you lose weight. For me, I sure haven’t minded that part especially when I gained weight on chemo ( go figure). My doctor fusses at me though about continuing to lose since I’ve lost about 30 lbs since January. It is mainly due to lack of appetite and I really don’t think some foods taste the same. I will take it though, lol.

I would love to only want to lose 15 lbs! No, it does not leave a metallic taste at all. More like food tastes bland. It may even be that since my appetite is bad, food doesn’t taste the same, never had to deal with a lack of appetite before, ha.

Thank you for sharing PippiCat. All of the information, including the incredible challenges you are having and how you are helping yourself will be helpful to others.

As Princess Catherine said, "I am making good progress, but as anyone going through chemotherapy will know, there are good days and bad days. On the bad days you feel weak, tired and you have to give in to your body resting."

Hugs dear one.