Advice and help please

[NIKKibailie]

Hi

I was diagnosed 2 years ago with clear cell ovarian cancer and had 6 rounds of carbo taxol after a hysterectomy.I went to UCLH in london who discovered I did not have clear cell in March 2019 but germ cell yolk sac. I then needed more surgery and they found a new lesion that tested positive. Because of that and then going to imperial college, I had work up chemo and then high dose chemo and a stem cell transplant that left me with coelitus, sepsis and hours to live. I was on life support for 2 weeks and in hospital for 10 weeks. I had to learn to walk again and have a stoma as a result of losing my colon.

Fast forward 5 months and my afp which is the germ cell marker is up and they’ve found 2 spots on a pet on my liver and bowel. I’m due to have radio frequency ablation in a few weeks and then they want to use immunotherapy. Pembromizulab. The next thing is I have to find the money! The nhs doesn’t pay and I can’t go on a trial because of my rare mixed tumour! It appears now that the tumour may be mixed, changed, god knows but I’m a total rarity and I’m feeling I’m running out of options. I am 41 and have two kids aged 12 and 10 who’ve already watched their mummy with hours to live. I’m so scared and am reaching out to anyone who may have some wisdom! Had anyone had ablation? Immunotherapy? Help?!

Sending a much love as I can muster x

Nikki

[Coldethyl]

Sorry things are up in air and even more confusing than you thought - firstly I know you are on Instagram so I’d reach out on there about the ablation - I’m thinking the likes of bowelbabe has had liver ablation and cyberknife to her liver so may have advice - the immunotherapy drug is Keytruda so worth hitting the breast cancer community for advice as I know it’s used there for secondary bc x

[NIKKibailie]

Thanks for your advice. Means a lot x

[susras]

So sorry that you had to hear this awful news. I have clear cell ovarian cancer and was on the PEACOCC trial taking prembrozimulab which is keytruda. Unfortunately it didn't work for me but was not a difficult drug to take. The drug works in some cases apparently and you need to try. I knew it wasnt working early on as my cancer has grown quickly but had to wait until they did the scan for the inevitable news that it had spread in my liver. I would get as much info as you can on this before making a decision and possibly a second opinion if you can. I am now on chemo again under the NHS to try and reduce tumours.

I dont know about ablation.

Not sure if this helps.

Good luck

Susannah

[NIKKibailie in reply to susras]

Thanks so much. We will see what happens. I wish you much luck x

[vipervictoria]

I've heard some woman have very good results with ablation. The tumours are destroyed by radiation or heat. You'll find women who've had this treatment on the Inspire OCNA sight. As for having to pay for Keytruda, words fail me. Even if you can afford it, it simply isn't right. Some women try crowd funding - it can raise the money you need, but you have to be very active on social media. There are sometimes ways of appealing to the NHS for funding, which you onc can help with. Also, you can campaign initially through your local newspaper and radio station & by writing to your MP. Of course, given your situation, finding the energy and chutzpah to do this isn't easy. Can you try to phone Ova come for advice? From time to time other women on tis site have crowdfunded treatment successfully, but it's not easy. Can only with you luck & prayers. xxx

[NIKKibailie in reply to vipervictoria]

Thanks so much. We will have to see but time is of the essence!!! X

[Summergold2]

Are there any trials you can qualify for with your type of cancer? They have ongoing ones here in San Diego. MD Anderson Cancer Centers is the one that asked me to do the trial