Refused Chemo after surgery

[Hope2010]

Hi all, CA125 starting to went up a couple of months ago, after CAT scan and CT scan surgeon indicating another surgery but I refused chemo afterwards, anyone knows about any kind of immunotherapy that can work instead?? Take care xx

[soyoon]

I am in a similar boat, getting tired of chemo and its limited effect on the cancer. I started looking into immunotherapy, and there are several options.

1) antibody conjugated to chemotherapy drug--the targeted proteins with antibodies are mesothelin (CA125 receptor), MUC16 (CA125), folate receptor. The chemo part is typically taxol. You need to have your tumor tested for its expression, like mesothelin and folate R.

2) CAR-T cell therapies. There are many different varieties in trials. The basic concept is to obtain T cells from your blood or tumor (in this case, tumor infiltrating T cells), and modify it by introducing a new segment in T cell proteins so that it can recognize unique or highly expressed proteins on the tumor (mesothelin, MUC16, and folate R). Sometimes, this approach alone doesn't work well, so it is combined with PD-1/PD-L1 antibody.

PD-L1 is typically expressed in tumors (mine has it as well), and PD-1 in tumor combatting T cells. When T cells reach tumors, it is being inactivated by the PD-L1 in your tumor. So, the antibody is designed to bind to PD-L1 on your tumor, so that your T cells can do the tumor killing job.

There are many efforts trying to make T cells more combative, so the field is continuing to modify T cells by various means. Also, researchers are continuing to look for markers that are expressed only in specific tumors, and its number are growing.

You can get a lot of information in NIH or NCI clinical trial website. Or, you can visit hospitals that are doing a lot of immuno therapy trials. In the US, they are Sloan Kettering, MD Anderson, University of Pennsylvania, Roswell Park Hospital, and Dana Farber.

Once you are interested in one, you contact the person in charge, and they will send you a questionnaires which would help them decide your eligibility.

[Hope2010 in reply to soyoon]

Thank you so much for the information, with this I can ask my oncologist and see what she says about it. Hopefully she will give me the chance. I’m in UK, so not quite sure where they can have the trials, I’m gonna look for it, take care you all xx

[Belladrum]

HelloLike you I refused chemo after my first surgery as my oncologist said it was not usually effective in the type I have (clear cell). However, after recurrence and a second surgery and then further recurrence I contacted some of the trial leads, and all required at least a try at chemo. I had to be referred by my oncologist, so he liased with trial leads who agreed I could have carboplatin alone. A scan after 4th chemo confirmed cancer growing so chemo stopped, and hopefully 🤞🤞🤞🤞🤞I start PEACOCC trial next week - to have a second stage of screening on Monday before confirmed.

I am in UK too - will be getting my treatment in Edinburgh, but think the trials are UK wide.

Good luck!

[Neona in reply to Belladrum]

Hi Belladrum, I am very interested in the Peacocc trial- please do let us know how it goes. Wishing you good luck.

[Belladrum in reply to Neona]

Will do! Get scanned at 8 weeks ( after 2 infusions 3 weeks apart ), so should have an idea then if working. The trial lead told me that only about 25% ( I think that is what he said??) of women have responded, but those that do, have responded very well. Thank you! X

[Neona in reply to Belladrum]

Dr Kristeleit, who designed the trial told me that, when immunotherapy works, it can work for a long time. Fingers crossed. I had expected to move on to this trial but the trial I am on turned out to be a miracle- I am not NED but have been stable/ partial response for 3 years and 2 months so far. Last scan was a bit dodgy though.

[Belladrum in reply to Neona]

Hope stays stable for you for a good while yet. I would be happy with stable 🤞🤞🤞

[Hope2010 in reply to Belladrum]

Thank you Belladrum I will ask my oncologist and see what she say about it. If is another way I will do it too.

[Belladrum in reply to Hope2010]

Good luck! X

[Neona]

In UK I believe you have to have failed at chemo before you can get on a trial as they are obliged to give you the best treatment available. However I don’t know if this is the case for all trials but it certainly was for the one I’m on. I don’t agree with this protocol as chemo didn’t work for me and left me with kidney damage- however it got me on this trial which I have been on for 3 years so far.