2nd Recurrence - treatment options

[Itha]

Hi everyone

I am afraid it is back....4 months after second line treatment which means I am now platinum resistant. CA marker tripped (mine very sensitive). PET scan on Thu to see what is going on. I am devastated as I had such a good response and successful surgery for the first recurrence.

I am stage 4 high grade serous, BRCA1+ (56 years old only). Diagnosed Oct 2020. First recurrence Sept 2022. Second occurrence now, Oct 2023.

My head is spinning and my heart feels heavy. I am healthy and fit and eat well and look after myself. Carrying 2-3 kg's etc. at the moment.....

There is NOTHING fair about this disease. My mom who was diagnosed 11 years ago (stage 3, BRCA1+) is still cancer free despite a super unhealthy life style....

My question: what treatment options did you consider and what did you choose?

I look forward to your response. The questions and answers on this site is always so useful

xx

[Goingwiththeflow]

I'm sorry, I have nothing useful to offer by way of treatment suggestions, I just wanted to say that your post really resonated with me. There truly is nothing fair about this disease.

I was diagnosed in Oct 2022, stage 4B HGSOC, Brca 1 (somatic) positive, great response to front line treatment, now on continued Avastin with addition of Lynparza for maintenance, so far so good, but very aware of the possibility/likelihood of recurrence. I'm doing what I can to help my immune system out, by being very mindful of diet and exercise and stress management, but I was doing all those things before diagnosis too, so who knows.

Much love to you as you navigate this step xx

[Kamloops]

Hi Itha

I also don’t know details of treatment options BUT your team will. I’m writing this because of things I’ve learnt on my journey. I know it will not be easy to do but have belief in yourself. You are in a good place physically and a PET scan is planned. We all know the hardest time is the waiting for all the information to be gathered to take to the planning table with the MDT team.

Try and stay in the moment and not to let the fears and uncertainty of the future give you pain now. Embrace support of friends and family and allow yourself some grief time but don’t let it take over your whole day.

I hope you post soon with your plan because there will be one 💕

[Itha in reply to Kamloops]

Hi Kamloops,

The biggest part right now is the uncertainty of the way forward. But, PET scan tomorrow and then we can start to understand the next steps.

I am lucky to have an oncologist who really cares. However, I do find the information shared by women on this platform going useful and often add to the conversation I can have with my Dr or the research she might not have seen. Since she is a generalist (I am in a small town and go to a small treatment centre) she doesn't necessarily read all OC research all the time (understandable). I have to play my part...it is my body and my life after all.

I am lucky enough to be a very positive and optimistic BUT realistic person. But there is still a heaviness in my body when I wake up in the morning...the heaviness of plans that are now up in the air, the heaviness of a husband who has to put his life on hold....

I do what I can do to be as fit and healthy and strong as I possibly can be and yes, I am enjoying life....working less and less and doing other things. AND, I live in 'paradise' with mountains on my doorstep where I walk my dogs every day...the coast an hour away....fresh air, nature....and great friends

[Lizz49]

Hi Itha,

So sorry to read your news it’s hard to take I know, am I’m a similar situation unfortunately with a recurrence 6 months after my op. You’re probably feeling very up and down like myself at the moment. I’m Low Grade so my treatment options will be different to yours, but I’m sure there are still lots of different options that you can try.

Just wanted to send you hugs and let you know that you’re not alone, sending positivity to you and all ladies going through this Xxx 💖

[Saintgermain]

I can't add a lot as I don't have the same subtype, I'm currently going thru my first recurrence I have low grade 3B but wanted to share that in addition to carbo/taxol I was 22 months out my Onc added Keytruda I don't know if this is an option but wanted to share with you. There's no rhyme or reason with this awful disease who will recur as you know 2 people same subtype one does one doesn't. I pray that your team finds the right cocktail for you I know they use Doxil and Avastin but I don't have any experience with this my Onc said after my initial 6 treatments I'll continue to have the Keytruda infusions every 3 weeks if no side effects pop up.

[Itha in reply to Saintgermain]

Thanks! I haven't had Doxil yet. Been on Avastin previously (17 treatments) and again now..

[delia2]

Hi. So sorry you are facing this. Did you have Olaparib already? There is a new drug for platinum resistant OC available in the US called Elahere. You might see if there’s a trial of it in your country. Xx

[Itha in reply to delia2]

Thanks! I will look at it and do my research

[Itha in reply to delia2]

I had Lynparza previously (16 months) and again now (6 weeks already) but it isn't working to keep the cancer away

[Lizchips]

What type of cancer do you have? The gene stuff isn't important to me. I had clear cell carcinoma it responded really great to interperitinel chemotherapy in conjunction with IV chemo. Best wishes, Liz

[Itha in reply to Lizchips]

Hi, high grade serous. Diagnosed at Stage 4B as peritoneal (Oct 2020)

[FlowerRose]

My heart goes out to you, Itha. Not fair, indeed. I hate this for you. Sometimes it must feel like it's nothing but good luck or bad luck. I wish you all the good luck in the world. Hugs from Los Angeles.

[Goodgirl98]

wishing you the best, Itha. I know nothing about this is fair but stay positive and you will get past this hurdle also. Hugs to you.

[Summergold2]

Hi Itha

I am on the same path as you started chemo Jan 2020 had 5 months of NED and then it came back. I am on my 4th chemo it is abraxane and seems to be working ever so slowly but markers went up to 1200 while on Keytruda, Avastin and Cytoxcin. they thought I would die in June as I was in a wheelchair and couldn't even take a shower with out help. Changed to abraxane and in 1 and 1/2 months walking, riding hiking able to work out and climb short staircases. This disease is devastating but hang in there look at all options This site is very informative as there is so much out there not all oncologist are well versed in all ovarian cancer options. We are all different.

Good luck and hugs from California

Debbie

[Itha in reply to Summergold2]

Thanks Debbie! Incredible what a change of regime can do for you

[Itha]

Update: PET scan confirmed recurrence. At the moment localised and one lesion only, pressing on ureter pipe (high kidney). Getting a stent on 8 Nov. Not doing anything else for now but continuing with Lynparza (hoping it surpasses and slows down) and Avastin (same). PET scan in Jan and then make a decision about surgery (or not) and treatment.

[Pinkredorange]

Just reading your post and hope you are doing ok after stent.