Hi everyone. I was diagnosed in July of 16--Stage 4A high grade serous ovarian. BRCA II. Finished first line chemo (carbo/taxol) while in a PARP double blind clinical trial, December. Stayed on the PARP (much higher dose when done with chemo--felt nothing, no reaction and bloods stayed the same) since. Yesterday, found out my ca125 is going up fairly quickly and is at 73 from 15 the test prior. 15 was up from 8. My trend is confirmed. I see my surgeon and my oncologist (a immunotherapist as well as medical oncologist) next week. I am at MSK.
Question: Do you put all your faith in what they say to do or do you ask questions about other treatments and "push" something you may want more? I do not think I am on the PARP inhibitor and would much prefer to do that over chemo again so soon.
What have you or would you ask? For those of you who had your first relapse--what treatment did you do? And how did it go??? Considering it was only 7 months of no treatment I am worried it may mean I won't be able to reach remission again. I am a ball of tears!!!!! Trying NOT to cry in front of my family but just feel like crawling up into a hole, and bawling. Need my OC sisters input. Thank you!
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Maxjor
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The OC team at msk is strong. I'm not high grade so I can't suggest specifics but definitely ask all of your questions but ...it's more than ok to push for what is the best treatment for you with them or elsewhere. Find out why they are recommending what they are so you understand their reasoning. Ask about your preferred treatment and ensure you understand the pro and cons of that versus what they are suggesting. This is your life. Don't feel you need to hold back.
Consider a second opinion as well. They can be very valuable. Giving peace of mind if they agree with your original team or if they suggest new and sometimes better treatment options new hope. Try and ensure they are independent and not at msk. Your team won't mind. It's common.
Then whatever is decided you with have peace of mind that you have chosen the best treatment for you. Good luck.
Such good advice, thank you. Your first line made me cry (ugh--so easily right now). I love the idea to ask why their suggested treatment pros and cons over mine, if not the same. And I love the idea of a second opinion outside of the MSK arena. Thank you!
Push for anything you can get your hands on, ask about alternative treatments done let them decide this is it and as always if in doubt seek a second opinion xxx
Do ask as many questions as possible and their reasoning for it. You have to feel like you are doing the right thing for you above all else. Once those tears get out of your system you will regain your strength and be able to face this head on, we are told to think of it as a chronic condition and this is supposed to help us not have so many Low and bluesy days.
I am in that wait and watch as my numbers are slowing going back up, as I had to tell my husband Friday my doctor feels I have either reoccurred and most probably didn't ever really have a NED status. Stay strong
rppizio---didn't you have CT scans to confirm NED? And how quickly are your numbers going up? How often are you tested? Thank you for your input too! MaxJor
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