New here. Treatment ideas? Endometrioid Ova - My Ovacome

My Ovacome

17,721 members19,968 posts

New here. Treatment ideas? Endometrioid Ova

AnxiousDaughte profile image
16 Replies

You can see my mom's story on my profile. She has stage 3c Ovarian Cancer (endometrioid). She is only 58. She raised me as a single mom and is the only thing I have left in this world. Please provide any suggestions for treatments/clinical trials that worked. THANK YOU!

Step 1 (Dec 2017): Underwent a massive debulking surgery and hysterectomy.

Step 2 (Jan-Apr 2018): treated remaining cancer spots on outside of colon with carboplatin/paclitaxel (Taxol) regimen every 2 weeks for 4 months.

Step 3 (May 2018): CT scan clear and CA125 was 0 at one month post-chemo.

Step 4 (Aug 2018): CA125 result increased to 500. CT scan results pending.

Does anybody know what happens next? Any ideas on the next line of treatment? She lost all hair (she is ok with that). Still has lingering leg cramps & pain and is worried whether she can undergo more rounds of chemo. She is very healthy (weight/height). No pre-existing health conditions. Non-smoker & non-drinker.

Written by
AnxiousDaughte profile image
AnxiousDaughte
To view profiles and participate in discussions please or .
Read more about...
16 Replies
Katmal-UK profile image
Katmal-UK

Im so sorry yr mum and you are going through. Is yr mum worried because she doesnt think she is well enough or is it because she thinks the medical profession wont let her? as long as yr mum is able to cope with the side effects and her bloods are ok I cant see they wont offer her more chemo. Its worth asking yr mums onc about trials or looking at the cancer research site which will give details of what trials. are available and what the criteria is to be able to take part. Wishing you both all the very best, do let us know how things go. Big hug to you both xx Kathy xx

AnxiousDaughte profile image
AnxiousDaughte in reply to Katmal-UK

Thanks Katmal. My mom's blood counts have always been excellent throughout all of this so far (except the CA125). She is well enough, but were just worried about the efficacy and availability of 2nd line treatments for platinum-resistant cancer cells like her scenario. I am definitely researching clinical trials.

BeeWild profile image
BeeWild

Hi sweetie I had my first recurrence 4 months from front line chemo and was put on CEBOC trial in U.K.(do a search for the trial) I have had 13/18 weekly taxol with the addition of Cediranib.

It’s horrible getting a recurrence but don’t give up hope and your mum should be fine to get more chemo if she is healthy and coped with her first line ok.

I lost my hair the first time with taxol but this time I have used the cold cap and it’s actually grown whilst I’ve been on treatment x

I too am 3C and my onc has said there are still lots of options open for treatment there are ladies on here who have had 5 or 6 rounds of chemo and are still here and fighting this beast xx

Got everything crossed your mum is coping with the emotional aspect of a recurrence it’s awful but she is strong and can do this

Keep us updated and sending huge hugs

Bev xx

AnxiousDaughte profile image
AnxiousDaughte in reply to BeeWild

Thank you Bev! That really helps boost my hope and confidence!

BeeWild profile image
BeeWild in reply to AnxiousDaughte

Good keep us posted how it goes xx

Neona profile image
Neona

The leg cramps are very likely to be low magnesium. My original chemo caused my kidneys to leak magnesium but I was not tested for this until I inisted. Now I have to have regular infusions of magnesium. I have stage 3C clear cell, had a huge but successful operation and recurred immediately after frontline chemo. I was offered caelyx but decided to get a second opinion and paid for a consultation at the London Clinic. I am now on a clinical trial at the UCLH Research Facility and have been stable since I started just before Christmas. I travel to London from Cornwall every fortnight .

Lily-Anne profile image
Lily-Anne

If you recur less than six months after chemo you would be considered to be platinum resistant. So your mum may be offered chemo but it’s likely to exclude a platinum based drug such A’s carboplatin.

Until you see the scan results it’s quite difficult to know what is going on as it could be pelvic inflammation.

LA xx

AnxiousDaughte profile image
AnxiousDaughte in reply to Lily-Anne

Yep, I just came to the conclusion that this is platinum resistant. Ugh. Hoping that the FDA's recent approval of Bevacizumab (Avastin) for endometrial ovarian cancer will work or maybe some other treatment. Still waiting on the scans today and for the oncologist's recommendation tomorrow.

Maus123 profile image
Maus123

Hi. I'm sorry for what your mom and you have to deal with, but just wanted to add my vote to the other ladies and say: Even if it's a recurrence (wait for scan result) , don't give up. Maybe surgery is an option, else a different chemo therapy or even a trial could be offered.

If side effects prove too much, there is always the option of reducing the dosage a bit, or possibly switching to another drug.

Sad truth: About 70% of ovarian cancer cases are diagnosed at a late stage, because the disease is often undetectable in early stages. Nonetheless, it's quite possible for many of us to keep living a worthwhile life for years to come, even with/between treatments and recurrences.

I'm heartened by the fact that you follow the medical details of your mom's cancer (personally, I believe it's useful to stay informed) and support your mom so well. Let us know how you two get on. Best of luck with the scan. Maus

AnxiousDaughte profile image
AnxiousDaughte in reply to Maus123

Thank you for the encouragement Maus. Yes, it is very unfortunate that this was diagnosed so late. Still holding out hope as endometrioid seems to have a better response rate to chemo than other cell types. You only have one mom in life, so I have to take care of her like she cared for me as an infant.

Lizchips profile image
Lizchips

Ok,leg cramps drink more water. Banana a day. If cancer is back in an organ they can remove they will, and chemo again. Are you in us or UK. Treatment. Varies by country. I'm in US stage 3 also. Diagnosis 2014, April. Best wishes go as aggressive with treatment as your mom can handle. And your daughter needs to have ca125 test done yearly. Hope everything goes well. ❤❤Liz

AnxiousDaughte profile image
AnxiousDaughte in reply to Lizchips

Wow good to hear you are still fighting! My mom is a tough lady in good health (minus the cancer), I definitely believe she can make it through more chemo. We are in US. I will definitely keep up with CA125 results. Thank you for the advice!

Lizchips profile image
Lizchips

US has very aggressive treatments. I did regular IV chemo along with intraperitinel chemotherapy, aka stomach wash chemo. Ask Dr about it supposed to add yrs to life and time btwn reoccurance. It's an aggressive approach. I'm in so Cal, my doc is in Palm Springs. Best wishes, Liz

Lizchips profile image
Lizchips

I was diagnosed at 51 yrs I'm 55 now. Your mom looks young, stay positive. She'll be ok.

DJT1988 profile image
DJT1988

Hello there... I joined this site very recently and as my two daughters and two sons are very upset and worried your post struck a chord with me... A week or so ago I found a large tumour on my breast which is cancerous, and Im about to be told the results of the histology,and decisions will be made for treatments , which of course is very scary and will include surgery and chemo most likely. I hope your mother is doing well and Im sure your love and support will be a huge factor for her mental strength. xx

AnxiousDaughte profile image
AnxiousDaughte in reply to DJT1988

The fact that more advanced treatments for cancer are available these days helped assuage my fears about chemo. Although the uncertainty of it all is terrifying, I am hopeful because there have been so many advancements in this area including radiology, surgery, and meds. Good luck, I hope you find some good news.

You may also like...

Post treatment controls

you've had follow up CA125 blood tests and CT scans to monitor whether your ovarian cancer is kept...

New here 😍

Ovarian Cancer .... But hold on, I didn't have OC !!! Now I am having chemo (Taxol/Carbo)....

Third line treatment imminent but not till the New Year.

the cancer had gone to the liver and next to the spleen, I have had my oncologist appointment. She...

Endometrioid adenocarcinoma?

Histology suggested (not 100% conclusive) endometrioid adenocarcinoma. Advice was hysterectomy...

Feeling Scared (again)

post first line treatment. Day before, nurse at GP surgery confirmed CA125 was 52 post chemo 6 same...