CA125 down a bit from 1058 to 952 : Has anyone... - My Ovacome

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CA125 down a bit from 1058 to 952

Lovis profile image
15 Replies

Has anyone on the GEM, Carbo, Avastin regime found it is a gradual reduction in CA125 or has everyone else had a really big drop after the first one? I'm really glad it's gone down but was really hoping it would be more than that. I feel afraid that I'm becoming platinum resistant or am I just being a bit paranoid about it? Lovis x

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Lovis
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15 Replies
TrishLey profile image
TrishLey

Hi There. It was quite slow with me too Lovis. I didn't get down to under 30 until the very last session. I wasn't as high as you when I started. I was around 550 but all the same it took the whole 6 sessions (I did everything every three weeks) for it to come right down. Hope that helps in some small way xxx Trish

Izzystep profile image
Izzystep

Hi Lovis. My CA125 was 6600 when I started gem/carb/Avastin and it was a gradual decrease.

I had my last chemo 6 weeks ago and now just on the Avastin.

Last count was 430. I think it's just a number.......... at least it's going down. The time to be concerned is when it goes up and up and up!!!

Lots of things can affect the count - have a read of this that someone posted a while ago. Love Irene xx

foundationforwomenscancer.o...

jennybutler profile image
jennybutler

Not had this regime but its coming down thats good news, And no your not being paranoid its only natural to be concerned about platinum resitance but there are other drugs that do well.

Love Jenny xxxx

annielawrie profile image
annielawrie

Just had my 5th treatment. I saw two different Doctors,one before chem on after. Told different things. Before chemo ca125 was 4000 now 261, last doctor not happy she says its not coming down enough.Wants me to go on avastin,but it scare the hell out of me,now she has told me of the terrible side effects. Ihave ovarian peritoneal and lung cancer.Also blood clots in my lungs.Inject every day.They wont operate.I cant stop crying. im very confused withit all. ive also had TALC proceedure in both lungs. And a absess wound on my bum that is nearly healed just a small hole. I was told last time there was no fluid in my lungs now im told i have. any advise would be appreciated.Meg x

hannakat profile image
hannakat in reply toannielawrie

Terrible side effects of Avastin?? Wow, it was the best thing I have been on. Avastin actually was great, I felt so good on it at all times. There are less side effects with this than any regimen I have been on---7 regimens in ten years.

HumbleD profile image
HumbleD

It took between four and five treatments for me to see a reduction in my CA125 and I even had it go up at one point which no one could explain. In the end my CA125 came down to 12 and I was kept on Avastin for another eighteen months, three weekly and it CA125 stayed down for at least a year. I have just gone back on third line chemotherapy having had a break from the Carbo/Gem since Novemeber 2012. I am on Carbo again every three weeks at the moment as in third line they do not do combination chemotherapy. I would reccomend if you are concerned that both your CNS and on oncologist are the two people who have the most experience in what happens.

Love Wendy x

spikey62 profile image
spikey62 in reply toHumbleD

Hi HumbleD I just wanted to say I am on third line chemo of gem with carb but have not been offered avastin, I go to Christues fir treatment. I wonder why treatment can vary so much from place to place.

HumbleD profile image
HumbleD in reply tospikey62

I think that as far as first and second line treatment go, there should not be that much variation, although with Avastin that is an evolving situation. Once you get to third line chemotherapy there does seem to be more variation which must be down to the experience of the oncologist and as mine work as a team, I would also say, it seems to be down to the oncologist looking after me at any one time. There are NICE guidelines that cover first and second line chemotherapy, the treatment of recurrent OC was under review recently but although I was a patient expert for that review I am not sure what the outcomes of that review are at the moment. It would be nice to have the answer to why treatment does vary from place to place though.

iamstillme profile image
iamstillme

Sorry cant help Lovis . Didn't keep track of CA125 this time around . I would imagine that as this regime not as harsh as taxol/carbo combo that you may see a gradual reduction rather than a quick one but unfortunately that's just my way of thinking . Main thing focus on is going right direction x hope you are coping well with the treatment

Love

Ally xx

annielawrie profile image
annielawrie

although i have my 6th treatment in three weeks,and my oncologist told me about avastin, she did,nt tell about the plan if i turn avastin down. What else is out there, where do i go from here.? My macmillan nurse is coming next week maybe she will be able to give me advise. Meg x

hannakat profile image
hannakat

I'm into this OC for almost 10 years now, probably 6-7 different chemos, and now steadily on one,. My drops have all be very gradual, and then spiking up a few, down a few, but here it is, almost 10 years later, living on Chemo every 14 days, stage 4 for 10 years, and leading a good life.

charleee profile image
charleee in reply tohannakat

This is great to hear! Diagnosed 2007 and recurrence Jan 2014. In liver, lungs and pelvic mass. Have had 3 x carboplatin as first line but although mass shrunk more lesions on liver. Just started caelyx with plan for 3 every 4 weeks before ct scan. Hoping it works!! So scarey but joining this group I can see other peoples stories and hope one of the drugs will buy me some time even if cannot be cured. Good luck with your fight xxxxxxxx

annielawrie profile image
annielawrie

Thanks hannkat,it gives me something to think about,Avastin.Meg x

marianc profile image
marianc

Hi i am on this plan since march 14. Had 3 of 6 chemo. My CA125 was 2000 before startng. Now dropped to 278. It went up a little from 224 two weeks ago. Consultant nit concerned unless it keeps going up. It did take the third hit of chemo to push it down.

Like u i worry its that its disappearing as fast as it can..

hang in there hon. Get chemo and see what the reading is after the final one. It may just take time to get working.

annielawrie profile image
annielawrie

Thank you Marianc,To think it was over4.000 when i was first diagnosed, i thought i was doing well. Considering i had a delay when i was operated on , my abscess.That was twelve weeksMeg x,

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