Private Treatment advice

[Mariej2021]

I was wondering if anyone had experience of paying for private treatment with any of the immunotherapy drugs either in UK or in US and where you had treatment and how much approximately it cost if you are happy to share I would love to try immunotherapy for recurrent clear cell cancer of ovary and just had progression on Carboplatin and Caelyx Just trying to gather as much information as I can Thanks in advance

[Myohmy38]

Hi Marie. I’m in the UK but I couldn’t get immunotherapy when I had reoccurrence of squamous cell cancer of the ovary (also very rare type, it’s usually found on cervix and lungs). My insurance co said immunotherapy isn’t licensed for ovarian cancers in the uk so they wouldn’t cover me, even though I had a strong case for it to work. I was told it would cost about £10k per dose! And would need it every 3 weeks for first 5 doses then every 6 weeks for up to 2 years.

I was fortunate enough to get it via compassionate access scheme, which is when the drug company provides and funds it. My oncologist achieved this by writing to the drug provider on my behalf and explaining my case.

Hope that helps you. Definitely check with your oncologist what trial options are available too. Best wishes

[Mariej2021 in reply to Myohmy38]

Thank you for this really useful information I believe I would have difficult getting my NHS Oncologist to do this but I will explore it x

[Fluffyjumper]

Hi Mariej2021.

Have you looked into any trials? I have a friend who’s in the same situation with clear cell not responding to standard chemo and progressing to peritoneum and lungs. Have you investigated any alternative sources of funding or compassionate schemes such as the Cancer Drugs Fund? Have you had a consultation with a major cancer centre such as the Royal Marsden or the Christie?

Have you looked into whether Keytruda / Pembrolizumab may be available on the UK?

[Mariej2021 in reply to Fluffyjumper]

Hi Fluffyjumper I can't see a way to get Keytruda in UK I had a video consultation with Marsden but it wasn't fruitful about any practical way to access immunotherapy I am going to try another centre The trials are sparse at the moment

[Fluffyjumper in reply to Mariej2021]

I hope you find something. One of my friends is in a similar situation with CCOC not responding to chemotherapy, progression to peritoneum and pleura.

[Mariej2021 in reply to Fluffyjumper]

Yes that sounds very similar to me My NHS team are offering Abraxane and Avastin but still to be confirmed Cant really find positive accounts of improvement with these drugs Best wishes to your friend x

[SopSinger]

You're talking well into five figures per dose. I had chemo privately because I was covered by my employer's insurance, that was nearly 19 years ago and surgery plus chemo plus all the extra bits and pieces came to around £50k (the insurance company paid but I saw all the bills). Immunotherapy is very expensive because of being new.

[Mariej2021 in reply to SopSinger]

Thank you for the information x

[Doggies221]

hi Marie, as others have said, compassionate care from makers of immunotherapy drugs is prob a good way to access the drugs wherever you are at; or enrolling in an immunotherapy trial. Please check Dana Farber in Boston, where there is a pembrolizumab plus lenvatinib trial for ovarian clear cell. You might qualify and you might have to visit Boston often for this trial. But the drugs in a trial are free to patients, including the cost of follow up exams. So contact them regarding this trial. All the best of luck! 🍀 PS. I believe there was also a clear cell trial at Brown university:

onclive.com/view/nivolumab-...

and MD Anderson currently recruiting:

clinicaltrials.gov/study/NC...

And China:

ascopost.com/news/october-2...

[Mariej2021 in reply to Doggies221]

Hi Doggies That sounds like just the sort of trial I need The unfortunate thing is the logistics of travel to America

[Doggies221 in reply to Mariej2021]

It might be worth it. Wishing you the very best of luck and finding a treatment that works!🙏🍀🍀

[OvacomeSupport Partner My Ovacome Team]

Dear Mariej2021

Thank you for your post. You have received really useful information from the forum members. I just wanted to add that this web page from Macmillan Cancer Support may be of interest, about different funding options: macmillan.org.uk/cancer-inf...

If you need any more information or want to talk anything through, please do get in touch with us. The support team are here Monday-Friday 10am-5pm on 0800 008 7054, we can also schedule a call with you at a convenient time or book in a videocall if you prefer.

You can also direct message us through this forum at OvacomeSupport, email [e-mail], or text/WhatsApp us on 07503 682 311. There is also instant chat through our website ovacome.org.uk.

Best wishes

Anna

Ovacome Support