Hi @RobCat1 sounds like you’re on a good path on all fronts!
I did inform my oncologist about the drugs I’m taking. I’m being treated at MD Anderson in Houston (they were my 2nd opinion after my initial surgery in 2018). They had done the chemo-radiation treatment for recurrence #1, which ended in May 2019, got a clear PET/CT in Aug 2019, clear pelvic exam in Nov 2019. Then I insisted on a scan for the Feb 2020 which they did, and found the stage 4 metastasis (vaginal cuff, abdominal wall and lungs) which was recurrence #2.
During 2019 radiation, they’d told me not to take any supplements, antioxidants, vitamin c IV etc, so as not to counteract the treatment. They were only ok with a multivitamin, Vit B complex, Vit D and Melatonin. I did exactly that.
So when I had the recurrence #2 in 2020, I told him given my dire prognosis of <20%, that this time, I would do ANYTHING and EVERYTHING I deemed necessary and I that was just letting them know upfront. He said ok in that case, talk to the pharmacist and run it by them to discuss any potential contraindications.
Pharmacist said there was no contraindication on 3 of the meds. The only one she advised me against was Mebendazole. She said she knows some patients on it whose liver enzymes became abnormally high. When I asked my COC oncologist about this she said that’s not their experience and that the Statin is the one more likely to cause that. In any case, I decided all I have to do is monitor my labs closely, since I got them taken every 3 weeks on chemo day. To this day, my liver enzymes have been normal.
Bottom line is, I didn’t expect or need my medical oncologist at MD Anderson to endorse or approve my plan, his obligation is to treat me according to the “standard of care”. They were my primary care team and then I had the COC oncology team as my secondary team for the “alternative” stuff.
The funny thing is after 6 chemo cycles and a NED PET/CT (Aug 2020), I refused to do the recommended 3 more cycles immediately after, (oncologist wanted 2 clear PET/CTs before stopping chemo) and I asked to get a 3 month break to recover. Dr said ok. Then we did a PET/CT in Nov 2020 which was also NED!! So at this point I told my oncologist, hey you know I’m still taking the COC off-label meds, what d’you think, should I stop? He said “DON’T CHANGE ANYTHING”. I had also stopped taking the Estrogen supplement and vaginal cream Premarin, in Feb 2020, with the paranoia that it contributed to my recurrence. I asked him if I should get back on it, he said no, just keep doing what you’re doing.
He jokes with me and told me one time “so what are we going to do next? seems you’re the one telling us what to do”. haha…that’s not entirely true, but I do know how to advocate for myself and insist on tests and scans even when it’s not “routine”. I figure I’m just a patient number, if I don’t look after myself, no one will. Especially considering I don’t/didn’t have the kind of family support that is crucial during such a crisis.