Additional chemo

[ElayneZ]

Hi all! I’ve just finished 6 rounds of Carbo & Caelyx for first recurrence after 18 months NED. My Ca125 is again in normal range (20) but since it is still decreasing each month the doctor said chemo is still working and he’d like to see CA125 plateau before I stop. I was so ready to be done. Wondered if any of you continued chemo to lower the CA125 even when it was within normal? I said I’d continue a couple more months and see how chemo goes. It does wreck havoc with white and red blood cells - but I’ll continue to be very careful. Thoughts are appreciated! Blessings to each of you! Thank you!

[delia2]

Hi. That’s interesting. I had six carbo caelyx and still had some cancer left but my oncologist seemed fine with stopping and going on Olaparib. My CA125 is always low so not useful. Are you having a scan?

[ElayneZ in reply to delia2]

Hi - thank you. He said I’d do a scan again 4 weeks after the “last” chemo. I am having another echocardiogram this month. I had one 6 months ago which showed no problem. 🙏 My CA125 has come down from 210 when I started this combo to 20. My average was under 10 for the 18 months NED. He said since CA125 is still coming down ea month - he wanted me to do 2 or 3 more chemos because it was still working. Hope you are doing well!!

[Doglover1410]

Interesting, I was in the same boat and asked for some more to keep getting it down and was told in no uncertain terms no!! I started on Niraparib after this combination and it has come down between 8-12 for nearly 2 years, so maybe he was right!! (Don’t tell him that though 🤣) hope you continue to have success with the extra ones x

[ElayneZ in reply to Doglover1410]

So good to read the Niraparib is working well for you. Blessings!

[purfekt10]

I had four rounds of chemo, then debulking surgery, then another four rounds of chemo which brought my CA 125 to 3 over two years ago. It now stays at 5.

[Eriksendi]

I had four rounds of chemo, then debulking, followed by a further 3, total 7. My ca125 has been at 10 for 3 years.

[Ruebacelle]

Yep white cells here in france they give us a shot to boost ... it sounds as if your onc wants to get rid if wandering cells so if you can srand it go for it. Good luck

[ElayneZ in reply to Ruebacelle]

Thank you. Good luck to each of us!!

[January-2016-UK]

If you're going to be properly monitored, I'd go for it. I was NED and with a CA-125 of 35 but within three months I'd recurred. It's possible there are still microscopic cells lurking around and NED means no "evidence" of disease. It only needs one of the cancer cells to eventually start another tumour, even though they sometimes lie dormant for a months / years.

[ElayneZ in reply to January-2016-UK]

I agree! Thank you! Blessings!

[Jackmlondon]

Hi Elayne, was your scan showing new disease when recurrence was diagnosed or recurrence just diagnosed on CA 125

[ElayneZ in reply to Jackmlondon]

Hi - after 18 mos of CA125 under 10 - first recurrence was realized due to the monthly increase. The CT and Pet scans were inconclusive. But each monthly chemo since June has consistently lowered the CA125. Hope you are doing well!

[MarleyZ]

Had the chemo at time didn't ask much about CA125 numbers mine was at post op stage 70 the numbers fell and at even 4 where it's levelled off and remains I still had chemo sessions this was to combat the possibility that 5 of the 9 lymph nodes showed high risk hence in my case they went for the chemo at time just felt this is what life would be like feeling tired no energy feeling totally devoid of normal life have finished the chemo still have few side effects which remain but getting there back to normal life if one can say that with covid around still ..wish you all the best.

[LesleyGB]

Mine wasn't a recurrence but I continued with chemo before my operation which was fter my third chemo when my CA125 was already normal. I then finished the other 3 cycles when it dropped a tiny bit more. x

[Seaway1]

Hi I’m 5 years out from debunking then chemo. My CA125 stays between 11 to 14. I’m wondering if it recurs generally after so long?

[ElayneZ in reply to Seaway1]

You are doing great! Embrace the stability of your CA125! Blessings!