My Mum finished 1st 6 rounds of Carbo for High grade serous EC stage 4. Had last CT scan April and saw Dr face to face last week. She was v. pleased with results, all nodules on peritoneum reduced to 2-3mm and main mass on mesocolon stable at 12mm and uterous the same size as previous scan(still told unable to operate because to high risk co-morbidities). My Mum has been told there is no maintanence drugs for endometrial cancer so we will do a scan in september to see whats happening and let them know if any new symptoms!? Is that it!!
Im v. worried! Can chemo keep it stable for months after? Has anybody kept stable for years with just chemo? I dont want to sit and wait for it to spread and grow! and surely it should be only 3 months to next scan? Thankyouxx
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Cobweb2
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Have you had a second opinion? If not I would certainly get one as soon as you can.Does your mum have a blood marker done,such as ca 125 to monitor her?
It can feel very scary to come to the end of treatment but your Mum’s oncologist must be confident that the cancer is back in its box to suggest leaving the scan until September. Everything is possible...my ca125 continued to fall after chemo for 4 months. No one can predict what will happen now, there is an element of wait and see.
Your Mum can enjoy herself, hopefully she will feel well and have a good appetite. Chemo takes a lot out of you...so whatever happens next, a bit of R and R will be very welcome.
Unless your Mum is keen to pursue a second opinion or more treatment now, I am going to suggest you try to put your worries aside and enjoy time with her. I have come to appreciate time when I have energy and strength to get out there and have fun.
If your Mum finds that the cancer is on its way back...that would be a good time to get a second opinion. All the best xx
Hi. My ca 125 is always low but always checked for small rises. I strongly suggest a second opinion from a major cancer center. My understanding is that endometrial is treated the same as OC. Good luck!
I have same cancer and had 3 separate rounds of chemo in past 3 years. Serous is very aggressive and almost impossible to cure. Chemo reduces the size of tumors but it does not stabilize it for me. Within 6 months the tumors grow quite large again & need more treatment. I just finished 9 chemo treatments in April 2021. But the last 3 cycles did not shrink the tumors anymore, which means the drugs are not killing the cancer cells anymore. The cancer is becoming resistant to the drugs. I was told that happens if you have too many treatments too close.The CA125 is more for ovarian cancer. It does not mean much for endo cancer as I was told. My doctors don't even bother to test for it.
I heard of some ladies being cured with only 6 rounds of chemo, but that is very scarce. The best treatment is radiation, which is almost always successful from what I've seen in cancer support groups.
I was told there is no maintenance drug currently available , but I did find some clinical trials where ovarian cancer drugs are being tested for endo cancers.
Governments in USA, Canada & Australian approved Keytruda as maintenance drug in 2019 for endo cancer. It is prescribed in USA & insurance pays for the treatments. From comments in chat groups, it does help cure/stabilize some patient's cancer. It is still in clinical trials in Canada & is available for between $9,000 to $14,000 per dose.
My doctors do not do a 3 month scan because they know the cancer is growing. The doctors know the speed of growth or rate of tumor doubling. For me , it is OK to wait for 6 months for a CT scan.
I am sorry that there is no good news for serous endo cancer. I cannot make plans beyond 6 months, except to plan when nest round of chemo will be. So far I consider myself lucky (my keep fingers crossed) that the cancer stays in the lymph nodes and has not spread to any organs.
Just been searching through and came across your post, reading it, and helentess reply feels like I’m reading my own thoughts.
My mum is in the same position, just finished second round of chemo after debunking and 7 months remission. She’s now been told there is nothing else they can treat her with because of the type of cancer. She’s being considered for another trial but will be patient zero and is in pieces with worry.
My heart goes out to you all, whether you are personally going through it, or a close relative is. My mum is so much stronger than I could ever be, it just breaks my heart I can’t fix her.
How are you? I just wanted to reach out to you. Unfortunately we are in a similar position to yourselves.
My mum has a recurrence of endometrial cancer in her lymph nodes after after a hysterectomy three years ago and receiving the all clear.
She’s just finished her 6th and last cycle of chemo last week. Her scan is next week abs we are desperately hoping for the best….
Caz - if you don’t mind me asking. … did your mummy have a recurrence in her lymph nodes? My mums recurrence is in her pelvic lymph nodes and para ortic lymph nodes…. We are desperately hoping the chemo will zap it away..
Also, my mums on an immunotherapy trial ( we thinks and not on placebo) called Atezolizumab. Apparently, it’s supposed to be quite effective. Can you try and see if this will benefit your mum?
Sending you and your mum lots of love xxx ❤️❤️❤️❤️
I’m so sorry to hear your mum is in the same position as mine. Yes mums latest reoccurrence is in her Lymph nodes in the groin area. She started on a trial last week of AZD7648 with PLD, the first PLD is tomorrow. She’s not quite patient zero but close enough that they don’t know the success rate of it.
I’ll have to do some research on Atezolizumab as not heard of that one, I feel so helpless all I do is research.
Hope your mums scan brings positive news this week, please keep in touch and let me know. I’ll update with news of mums trial as and when I get it.
Not sure if you are from the UK like us but mum is on a trial from the Royal Marsden and the immunotherapy drug we think she is receiving is Atezolizumab. Does this help? I’m completely new to this… 😞. Is your mum on the same trial or a different one to my mum? There seem to be a few around and I get confused with it all plus different countries take a different approach… xxxx lots of love xxx
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