Serous endometrial cancer (UPSC) - please give me hope

Molinari said:

Dear Armywife,

Thank you! And congratulations for being with NED. That's wonderful! I'll read more research about Metformin. I just talked to my mother about this medication and she got worried of getting episodes of low blood sugar and the symtoms following it. Do you expereince this?

I just saw your question.  No, my glucose levels have not changed at all and I have no symptoms at all from the metformin.  Doctor mentioned I might get diarrhea but I didn't even get that.  

Molinari, how great that you are helping your mom out.  I'm glad you found this site. Like your mom, I had USPC. (I use the past tense on the advice of my acupuncturist, although I know it could be lurking somewhere in me. I was stage 1 and was treated with what is standard in the US -- six rounds of taxol and carboplatin (basically the same drugs as your mom) and brachytherapy, which is internal vaginal radiation. The center where I was treated always does 5, although I think 3-4 is more common. 

One thing I learned from this discussion board is that there is every reason for you and your mom to hope.  *Many* women who post or used to poast here had/have Stage II ot III USPC and are thriving many years after treatment, while some women who were, like me, stage I, have died. I made the decision very early on not to research this cancer. Instead, I am relying on my gynecologist/oncologist, who is brilliant and highly experienced with this cancer, and doing what he advises me to do. After diagnosis, the first thing I read was a study that opened with a statement that this was a "rare, malignant" cancer with a very poor progosis. I knew if I kept reading I would decide against treatment.  One of the things I told my care team early on is that I did not want to know the survival statistics. I still don't want to know. 

I found the chemo and radiation very easy to deal with, which was a surprise, and I hope your mom does also. You may want to explore icing her hands and feet if her doctor has not already recommended it. It seems pretty effective in preventing chemotherapy-induced periperhal neuropathy. I started late, so I have a fair amount of neuropath. Many women don't get neuropathy at all, so don't get discouraged by my experience of it.

I was diagnosed a year ago this month and completed treatment 7 months ago, so I am still pretty new to it all. I have found the information from women on this board to be so useful throughout my treatment abd beyond.

Warm best wishes to you and your mom.

Hello EZ. LIving. I am a stage 4 survivor of endometrial cancer. I am on letrozole. And Im NED. For 1 yr and 4 mths. Since April. 2019. I was also prescribed. Metformn. I take in the evening after dinner. 500 mg daily.  I was hoping you could tell me how this med helps with cancer. Thanks. Yetti 

Connie0127 said:

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

Connie0127, I'm so sorry that you are having to go through this. Glad you found our board. You will find loads of support and answers to many of your questions.

I hope you are healing well from your surgery. There are many women on this board that have had the same treatment regimine that you will be going through. Please reach out with any questions and someone that has been there will answer.  I can tell you that the chemo that you will be getting is not easy but it is doable. It goes by fairly quickly. Be kind to yourself and listen to your body. Rest, drink tons of water and try to get a bit of walking in every day.  You can do this! You are stronger than you think.

Love and Hugs,

Cindi

Connie0127 said:

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

Praying for you now.  You've bravely faced your cancer for 6 years, and you've gotten through 100% of those tough days - you will get through this too!  We are here to help you and cheer you on.  Be kind to yourself - you are newly out of surgery.  Let yourself heal and rest to prepare for the journey ahead.  Almost all of us have been through surgery, chemo and/or radiation, and we have all found it do-able.  You're not alone. God bless.

Connie0127 said:

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

Warm wishes, Connie. I'm so sorry for this new challenge. If it helps to know this, when I was diagnosed -- just about a year ago -- I was terrified of chemo. My wonderful gynecologist/oncologist told me that if my idea of chemo came from friends and family members who I'd seen go through breast cancer chemo he wanted me to know that uterine cancer chemo was generally considered much easier to get through. He was right for me, and I hope you have the same relatively easy experience that I had. It was a real comfort to me, as well as a great source of information, that the women who post on this board have worlds of experience to share. 

You now have all of us pulling for you.

Molly

Molinari, the standard treatment is carboplatin plus taxol, and possibly herceptin, if her tumor shows high levels of her2neu receptors.  You should ask for the tumor to be tested for this.  After that would be pelvic radiation of some sort.  If she has a para-aortic node that looks like a metastasis, you might want to investigate whether she'd be a candidate for proton beam radiation.  This is highly focused radiation, fairly new, and it's available in Sweden.

Connie0127 said:

Metformin

Why is it that metformin helps with the chemo? I am on metformin because I was diabetic, but now am on the line of being diabetic.

I also was wondering, how long will it take to loose my hair when I start chemo?

Connie, I'm not sure metformin helps with chemo, but it seems to help prevent cancer recurrence.  If you google it, the studies will come up to show you the hows and whys.

Also, you will probably start to lose your hair about 3 weeks after you start chemo.  I know it sounds awful, but it is so temporary and it really will be ok.  Go and choose a wig you like so you'll have it ready to go.  The cancer society has resources, and your health insurance may cover the cost of a wig.  I'd also suggest some soft cotton knit (like t-shirt material) caps - I called them my beanies - for sleeping and wearing around the house.  So cozy and comfy and keep your ears warm while you're sleeping! I found one silver lining in the cloud of hair loss - the absolutely wonderful feel of a warm shower on your head.  It was a pure blessing during a time of trial.  Enjoy it, and enjoy being able to get ready and out the door much faster when you just have to toss that wig on your head and go!

Armywife said:

Metformin

Connie, I'm not sure metformin helps with chemo, but it seems to help prevent cancer recurrence.  If you google it, the studies will come up to show you the hows and whys.

Also, you will probably start to lose your hair about 3 weeks after you start chemo.  I know it sounds awful, but it is so temporary and it really will be ok.  Go and choose a wig you like so you'll have it ready to go.  The cancer society has resources, and your health insurance may cover the cost of a wig.  I'd also suggest some soft cotton knit (like t-shirt material) caps - I called them my beanies - for sleeping and wearing around the house.  So cozy and comfy and keep your ears warm while you're sleeping! I found one silver lining in the cloud of hair loss - the absolutely wonderful feel of a warm shower on your head.  It was a pure blessing during a time of trial.  Enjoy it, and enjoy being able to get ready and out the door much faster when you just have to toss that wig on your head and go!

 

Army Wife, I was writing my response when you posted yours, so I didn't see it until after I posted mine.  I'm so glad you mentioned soft caps; they really helped me at night. A friend knitted me mine, and they were much softer than the ones available commercially -- at least the ones I tried. 

It's funny how different we all are. I hated the feeling of water on my hairless head. I was used to gathering all my hair up on the top of my head to shampoo it, and to have nothing there made me sad every time. Fortunately, I mostly took baths, so I didn't have to deal with it much except when I washed my scalp. Seven months after my last chemo, and I still hate washing my hair and feeling how short it is. 

I'm sort of a one-woman campaign when it comes to talking about hair loss. Most of the really good sites for chemo patients, like the Mayo Clinic, talk about the stress or trauma of losing one's hair, but the prevailing attitude among many otherwise sympathetic people seems to be "it's only hair." It's gotten to where anytime someone tells me that, or tells me to "rock" the look, I fantasize about someone shaving that person's head so that they can rock the look and see how they like it. Until then, I never knew I had a mean streak. I wish there were a site or forum devoted to chemo hair loss. There are lots of individual blogs by women who've experienced it -- usually after breast cancer chemo -- but a lot of the information on those sites is not accurate. One of the things I like about this discussion board is the high quality of the information women who post here share.

yetti said:

Metformin

Hello EZ. LIving. I am a stage 4 survivor of endometrial cancer. I am on letrozole. And Im NED. For 1 yr and 4 mths. Since April. 2019. I was also prescribed. Metformn. I take in the evening after dinner. 500 mg daily.  I was hoping you could tell me how this med helps with cancer. Thanks. Yetti 

I'm sorry I just saw this. Takingcontrol58 is the one to "talk to." During chemo my blood glucose was going over 600 and even though it came down my GP was willing to prescribe it for me. There are some clinical trials using it to keep the UPSC from spreading. I will be NED (No Evidence of Disease) for five years this September 30th. Is it because of the Metformin? I don't know but I'm not going off of it.

Love,

Eldri