Endometrial SEROUS carcinoma

MJS19

I'm sorry for your diagnosis and the problems you've encountered with treatment. I have your same cancer, which was not expected to recur as I was stage 1. If I understand correctly that you have UPSC, I'm surprised that your CA-125 is not being tracked because "there were no tumors." Mine was tracked throughout, and I had no evidence of disease at all after my hysterectomy. Some women don't have CA125 tracked because it's not a good marker for them individually. Mine was only 25 before surgery so my gyn/onc thought it would not be a good marker for me, but it fell to 7 after surgery, so he decided to monitor it after all. It stayed there for the 18 months before I recurred. I did the same check up schedule you are on, and everything looked fine. It was only the CA 125 that alerted us to the recurrence and the need for another CT scan right away.

Are you still being treated by a gyn/onc? I think that's really important with this rare, aggressive cancer.

Chemo was easy for me in terms of side effects, with one exception -- early severe neuropathy. After the second round it was so serious that my gyn/onc said the level I was experiencing was what most people who get neuropathy from that drug combination experienced after 5 or 6 rounds. He recommended that we switch to another drug that was less likely to cause neuropathy, but it was associated with many other side effects such as nausea, weakness, etc., and I didn't want to switch. He and the chemo nurse practitioner recommended acupuncture as a treatment that showed some benefit for chemo induced neuropathy with some people. Despite being needle phobic, I gave it a try, and it managed to reduce the level of neuropathy between each of the remaining chemo infusions to allow me to remain on the gold standard treatment. I stayed in acupuncture after chemo in the hope that one day the level of pain and numbness/tingling would become more bearable. To make a long story short, acupuncture was so effective for me that within 18 months, I had no pain, numbness, or tingling at all and was able to go through another 6 rounds of taxol/carbo with only moderate neuropathy, which resolved completely again in about 6 months.

I have an exceptional acupuncturist and everyone is different, so there is no way to know whether it would help you. But if you can afford it -- my best friend paid for mine -- I think it's worth a try.

In terms of supplements, I tried every one recommended to me by my care team. They were clear that there was not much evidence that any of them would help. In addition to the supplements, I also tried the antidepressant that helps reduce CIPN for about a third of the people who try it. It was useless for me and disturbed my sleep, but I tried it for the full 8 weeks. What has proved really helpful for me is alphalipoic acid. I take 1,800 mg daily, the dose used in one of the suggestive studies. I found out that was the supplement for me through a process of elimination. Because I am symptom free, I sometimes forget to take it for a couple of weeks, and I remember when I get a strange feeling in my hands and some warning tingles in my feet and get back on it.

Good luck!

ShelaghE

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.

MJS19

During my first round of chemo, I iced with the same mitts used in the research, but only learned about icing after two infusions. When I recurred, I used bags of ice provided by my chemo nurses, much easier and less cumbersome than hauling in enough frozen mitts and booties for 6 hours. I think icing can help alot. I did not cold cap for my first round of chemo and did for the second, using Dignicap with help from the nurses, as the hospital used the Dignicap machine. I lost most of my hair, but it came back faster with none of the bald spots that lingered for quite a while after losing my hair completely.

Good luck with your treatment!

Obladee36

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

https://csn.cancer.org/discussion/comment/1712710#Comment_1712710

https://csn.cancer.org/discussion/comment/1712705#Comment_1712705

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.

NoTimeForCancer

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.

Obladee36

NoTimeForCancer,

Thank you for your support and kind words. I have found poor or lack of communication at every level of care, and not being listened to immediately. Is it an age thing? I don’t know. But I am vocal and a persistent self advocate. As a patient at a women’s center that professes to be the premier of its kind in my and surrounding states, I am disappointed that other than most of my infusion sessions where the nurses and NP are attentive, I have had to work so hard to get my needs met by people who have my life in there hands, at a time when I want and need to be taken care of.

I had an 8 hour infusion day 2 days ago. 27 hours later Neulasta injection patch. Today, 2nd day post chemo, my feet are so numb I dare not get in the shower, some as yet not identified prolapse is causing incontinence (uro and gyno/uro exams scheduled), and in addition to my pre-existing high pitched tinnitus, today I now have a rhythmic thumping sound in my head! Cold packs are not an option for my over-sensitive to cold extremities. Praying for some relief over the weekend.

I would be grateful for suggestions for probiotics and specific supplements that have worked for others, understanding we are all unique.

MJS19

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.

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1712747#Comment_1712747

Now the real question is where do we go from here? I could suggest a shower stool so you don't have to stand in the tub and you can still do that.

As for probiotics, I think there are lots of good options these days. I would suggest picking one and get started.

Obladee36

https://csn.cancer.org/discussion/comment/1712739#Comment_1712739

https://csn.cancer.org/discussion/comment/1712710#Comment_1712710

https://csn.cancer.org/discussion/comment/1712705#Comment_1712705

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.