Treatment for platinum resistant mucinous ovarian cancer?

[mk66]

Hello everyone! I hope you are having a great day. I need your help. I am dealing with platinum resistant mucinous/endometrioid ovarian cancer.

I am amid my second recurrence and devastated that the Carboplatin & Doxil combo is not working.

Now, I am considered platinum resistant. My oncologist suggested either to join a clinical trial or try a different drug. She recommended a monotherapy with Gemcitabine, but I have read that drug combinations work better than a monotherapy alone.

For those of you who are platinum resistant and / or mucinous dominant, what drugs have worked for you?

Are you familiar with any suitable clinical trial that I may join?

Thank you. Hugs. ❤️

------------------------------------------

Diagnosed in May 2018. Surgery. Staged 1C1. No chemo. No gene mutations. ER/ PR negative.

First recurrence in February 2019. Two tumors in the pelvis and one in the liver. Six cycles of Paclitaxel & Carboplatin & Bevacizumab (Avastin). NED. Avastin for maintenance.

Second recurrence in June 2020. Several tumors in the liver one in the spleen. Two infusions of Carboplatin & Doxil, but the tumors keep growing.

[Melody6]

Hi there, very sorry to read about your situation. I am not sure about clinical trials for your cancer type, however, please see link:

clinicaltrials.gov/ct2/show....

You have probably though of this already, it have you considered a second opinion / surgery? Take care, love from Mel xx

[mk66 in reply to Melody6]

Thank you for sharing Melody6. Will check the trial. Surgery is not discussed at this point. Will definitely seek a second opinion, although my experience with it is that it agrees with the suggestions of my oncologist. Take care too. x

[lesleysage]

Hi,

I benefited from a second opinion as it was different from my oncologist and certainly saved my life.

You could try chatting over trials with the Ovacome Support team as well as looking at the link given by Melody6.

Take care, stay safe. L x

[mk66 in reply to lesleysage]

Thank you lesleysage! ❤️

[Tenacious66]

So sorry to hear about your situation. I am also platinum resistant. When I was told I was PR, I reached out for a second opinion. Although the 2nd opinion confirmed I was PR, the 2nd gyn-onc had a lot more chemo options for me to try, so I switched my care over. So glad I did!! I’m now on my 3rd line of treatment. 1st was standard carbo/taxol which worked until it didn’t at 6 months. 2nd was Doxil which gave me serious side effects (very bad mouth sores and nauseousness) and worked until it didn’t, about 6 months. And now, I’m on taxol and avastin, which is working ( resulting in lower CA 125 marker and liver function numbers). I’m only one month in, so we’ll see where I am at in 6 months 😬. At this stage, I just do what I can do maintain, and not see any new growth. Be well! If you have any questions, please don’t hesitate to ask!

xoxo,

Carol

[mk66 in reply to Tenacious66]

Thank you for your helpful response, Carol! Wishing you speedy healing! ❤️

[Neona]

Please take a look at the Atari trial. I’m not sure if mucinous is included but encometriod is so it is worth a look. Definitely recommend a second opinion at a major cancer centre where they do trials. The Atari trial is open and recruiting- it is for clear cell with an arm for other rare.ovarian cancers.

[mk66 in reply to Neona]

Thank you Neona. The Atari trial seems promising. I reside in US and hope to fine a similar one. My ovca is rare 65%Mucinous / 35% endometrioid, grade 1-2 and there are not many clinical trials that I may be eligible to participate.

[RachelFaye]

Dear mk66

I truly wish you best going forward in your treatment.

I was diagnosed on9/11 by telephone with stage 1A Grade 1 Endometrioid OC.(1A1)

Like you, no chemo.only surgery.

I am shocked that yours has recurred given that it was so early and lowest grade and I am frightened that mine will.

I didn’t know that one could have mucinous and Endometrioid at same time. Pardon my ignorance.

I pray you get every treatment you need ASAP

Rachel Faye

[mk66 in reply to RachelFaye]

Thank you RachelFaye. I did not expect my ovca to be so stubborn. What happened to me is not common. Stage 1 have an excellent survival rate and there is no need for unnecessary worries. Enjoy every day. Hugs.

[Petrolhead]

Hi MK

Do you know what grade you are? This can make a difference.

The US (and in Ireland) they use the FOLFOX regime for mucinous because mucinous acts like bowel cancer. Professor Gore the leading expert in the U.K. at the Royal Marsden before he tragically died of a reaction to a yellow fever vaccine has used Gemicitabine. He used to work closely with Prof Gershenson at the world leading hospital in Texas in the US especially if it is grade 1 ie a slow growing type. An acquaintance of mine was treated with this Folfox regime under his care for mucinous. I believe that Dr S B is now the resident expert at the Marsden.

Also Prof T P at Leeds is one of the experts in the U.K. for mucinous.

Is your oncologist a specialist in mucinous? If not then I would strongly recommend a consult with one that is because it acts differently to the usual oc whichever type.

FYI

FOLFOX | Cancer information | Cancer Research UK

Folinic acid, fluorouracil and oxaliplatin (FOLFOX). FOLFOX is a combination of chemotherapy drugs used to treat bowel cancer.

He recommended this regime to my friend and they went with this regime in the U.K. (she was private healthcare so did not have to follow the NHS required protocols )

Prof Gershenson (and his team) also do remote consults for people all round the world (don’t know the cost sorry).

Bear in mind that I don’t know your medical circumstances so do not know if this would suit you.

Just something to research and think about and ask the questions.

I know this information really relates to mucinous rather than the combo that you have but the information might be useful. Definitely worth looking at the information Prof G at the MD Anderson in the US.

Best wishes

Fay a 1C1 mucinous oc

[mk66 in reply to Petrolhead]

Thank you Petrolhead. I appreciate your useful response.

My ovca is 65% musinous / 35% endometrioid, Grade 1-2.

I will research FOLFOX and discuss it with my oncologist. She is experienced, but not a mucinous specialist. I guess, if she does not approve FOLFOX, I will bring a second opinion in support.

Sending you positive vibes. x

[Banana1522]

Hi mk66. How has your treatment progressed if I may ask? Well, I do hope. I am here because my gf had an MOC 1C1 G1 tumour on her right ovary and is post-chemo. Quite worried about a recurrence and hope you can shed some light on your story 2 years on. Wishing you well.