Quick question for clarity's sake

[Maxjor]

Hi All,

I am impressed with how much you all know! I want to get a book and write down meds, clinical trial names, procedures, etc. and thank you all for sharing.

I was dx July 2016 (ca125 was 2100) BRCA II and when I started chemo, it was 3600. Throughout treatment, I got a ca125 taken every three weeks and it went down dramatically (3600 to 900 to 55 to 14). Then surgery then chemo again, last chemo Dec 30th and it was 14. Since then, 14 to 8 to 7 to 5 to 8 now 15. Doctor called me to say she wasn't thrilled and I have been obsessing ever since. I realize its not the number but the trend. I also know I know nothing yet and the next ca125 may show the trend (or not) and of course, still in normal range (but does that matter if up again next blood test?) But here is my question. IF my trend shows it is continuing to rise, and the "15" happened right before I hit 6 months post first line chemo, would I be considered platinum resistant? I know it has been said you need to go 6 months without recurrence to be considered platinum sensitive but doesn't the history of my reaction to the chemo (carbo/taxol) indicate I am sensitive to it anyway? I can't stop thinking about this and stress levels are high. If I can get some insight, it might help at least understand more (my doctor left after the call--permanently--and I don't see my new doctor till August 5th. Want to go in there already understanding what this may mean).

[Katmal-UK]

Hi Max Drs can be so insentive sometimes! For clarity I would speak with your nurse or call Ovacome. What I would say is that having the BRAC2 gene means that there is a tendancy towards higher rates of platinum sensitivity. What grade are you? have BRAC2, am in my tenth year and on a PARP inhibitor. Try not to worry, easier said than done but worrying can't/won't change anything. Definitely worth speaking to Ovacome. I wish you well xx Kathy xx

[Maxjor in reply to Katmal-UK]

And thank you Kathy. Hearing 10 years helps! I am in a double blind PARP trial so no idea if in it. (My WBC count remains low so "they" think I am in it which would also make this rise worrisome. But taking your advice and going to enjoy the holiday! Ox to you!

[Katmal-UK in reply to Maxjor]

Hi What trial are you on? I'm on a double blind but because of certain side effects my Consultant is 100% sure I am on the actual drug.

[Maxjor in reply to Katmal-UK]

Veliparib (Abbie). What is yours?

[Katmal-UK in reply to Maxjor]

Olaparib (Solo). Been on it for three and a half years, 4 years in remission this August.

[Maxjor]

High grade. Stage 4a. Agreed on the doc's sensitivity. just wondered if it's "fact" that I would be considered not platinum sensitive if less than 6 months whether BRCA or high grade. If it depends on other factors I will definitely reach out to ask.

[WorriedHusband]

Max,

I think your CA125 baseline is 14. If it stays around 14 you're fine. If it keeps going up and above 30 then a scan may be needed.

Yes I believe you are considered platinum sensitive.

Best of luck

[85live4ever]

Hi Max, I don't know if this will help or not or just confuse. I have been told I am platinum sensitive. My oc comes back about every 6 mouths or so. I am on my third line & when I finish this chemo they want me to go on to a PARP inhibitor. I am not BRAC positive but been told it would favour me if I was.

The best person to have on your side is Kathy ( katmal ) she has the same as you BRAC & is full of very wise advice. She is very postive in her view & has helped me out of many pickles.

Please stay in there lets hope your ca 125 stays put. I do feel your Dr shouldn't be worrying you over a low ca 125. Saying that my surgeon put his head down & said I only had 6 mouths with chemo. I have made 2 years+ so don't take what the doctors say too much to heart. Take care Cindyxx

[Sherrym in reply to 85live4ever]

Yes, those comments should be kept for the brink of action, it's the waiting around that's the killer. Although I always ask for the truth, the whole truth & nothing but.....

So, I am a bit torn there

[Maxjor]

Thanks so much Cindy. Your response helps! And you're right--Kathy really helped too. So lucky to have found you all and hope to be able to contribute too. Great on your two years and sounds like your attitude is also helpful. Here's to many more years (and a bit of a break between your chemos which a PARP inhibitor should do). Fingers, toes and everything else crossed for you!

Ox

[85live4ever in reply to Maxjor]

Hi Max, thank you for you kind words. What I love about this site is we all care about each other.

I wish you the very best in your fight & hope you stay in good health for many years to come take care Cindyxx

[Hidden]

Hi there,

I believe that you get classed as 'platinum resistant' if there is unmistakable evidence of disease progression within six months of finishing platinum chemo. A trending rise in CA125 is unlikely to count as unmistakable evidence when the absolute values are still so low; even more so when you are so very near the six month cutoff anyway already. In my experience, you would have to have a CT scan showing progression and/or have symptoms well within the six months, and/or display something like a quadrupled CA125. (the latter in my case earlier this year prompted a scan showing progression). In fact the only purpose of defining 'platinum resistant' vs 'platinum sensitive' is to decide which next chemo regime will be recommended, and there are additional factors in there which your oncologist (and you) will be considering anyway.

This is just my experience though, so worth chatting with your oncologist next time as to their view what constitutes platinum resistance in your case.

Hope all well otherwise -

Judith

[Maxjor in reply to Hidden]

Judith--thank you. Very helpful. I am at a Patient OC conference in Chicago and hoping to gain even more insight into many different related topics. I a sorry about your progression earlier this year and hope you are done with treatment by now and doing well (?)

[Hidden in reply to Maxjor]

Hi there, treatment has finished for the time being - might post separately about that. Am feeling good in myself and that's the main thing anyway. Thanks very much for asking. Judith