Immunotherapy.. clinical trial imgn 385 - My Ovacome

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Immunotherapy.. clinical trial imgn 385

Tracex profile image
13 Replies

Hi all hope all doing ok.. just need bit advice i started this clinical trial well just ad my 6th dose.. and am worried as my ca 125 seems to be increasing not dropping after 2nd cycle it dropped really gud but last 2 cycles is getting higher at start is was 1600. Dropped to 1100.. and now its 3800 im worried with the rise and whether its worth staying on trial.. as what if its not working.. i do av a scan next week and dreading results.. any advice guys thanx sending u hugs xxx

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Tracex profile image
Tracex
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13 Replies
Sherrym profile image
Sherrym

Immunotherapy is so new to us, but CA125 can raise for other reasons, I believe. Is it massive inflammation in the pelvis as it tackles the C? Don’t accept my supposition, PLEASE! Ask yr specialists immediately-you know yr body best.

The only folk who can answer yr questions are the experts, but if the tumours are shrinking, that’s their answer. How does yr tum feel?

Good luck

gwyn64 profile image
gwyn64

I would speak to your specialist!

Maxjor profile image
Maxjor

Tracex---when I was on an immunotherapy trial, my doctor made it very clear that they do not use the ca125 as measurement of disease progression. It seems not to be clearly indicative of that measurement. I am sure they are going to tell you to wait for the scan. How do you feel? I had fatigue pretty badly on it but that was about it.

Tracex profile image
Tracex in reply to Maxjor

I feel ok yeah bit tired and bit bad tummy for couple days but feel well... i got checked by oncologist last week no lumps or bumps she said.. which was positive then she said but your ca125 as skyed so it knocks u down again.. i no i shud'nt worry bout the ca125 marker but at our hospital they go on that and i no alot of hospitals dont.. my research nurse was going mad.. she says the hospital shoud'nt tell you as u get ok news when they examine you. Then kick u down ive got ct-scan nxt wk fingers crossed thank for ur replys sending u hugs xxx u still on trial as it helped you xx

Maxjor profile image
Maxjor in reply to Tracex

My trial was with Opdivo and did not work. My onc said Keytruda is showing promising responses and results so down the road we would try that. I’m currently on Olaparib for 2 months now and I think it’s working. My last chemo should still be working so who knows yet. But tolerating it well and fingers crossed. Fingers crossed for you too!!!

Tracex profile image
Tracex in reply to Maxjor

Pleased its wotking for you.. let me no how u get on sending u hugs... have ct-scan next week fingers crossed xxx

Maxjor profile image
Maxjor in reply to Tracex

Mine is July 2nd. Good luck to us both. Ox

Zena41 profile image
Zena41

Hi we’re is this trial ?

Tracex profile image
Tracex in reply to Zena41

Im in the Uk ... its an american phash 3 trial...

Zena41 profile image
Zena41 in reply to Tracex

Really which hospital?

Zena41 profile image
Zena41 in reply to Zena41

And are u high or low grade?

Tracex profile image
Tracex in reply to Zena41

New ccross hospital at diagnoise in 2015 it was high grade stage 3b and for last 3yrs just chemo after chemo no break really xx

Zena41 profile image
Zena41 in reply to Tracex

I hope u get a break with this x

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