CA125 Rising Even with Chemo

[Unclear]

I’m struggling with a recurrence right now and feeling defeated. I’ve had Avastin 3 times (3 weeks apart) and carbo and taxol every week for the past 4 weeks. After the first treatment of Avastin my CA125 went from 211 to 157. I was encouraged and feeling good about treatments. Now, after 2 more treatments of Avastin and 4 weeks of carbo and taxol my CA125 has risen to 234.4. I’m devastated. They moved my PET up to next Friday, October 12th instead of November. I’m so scared.

[Katmal-UK]

Hi. Not sure I can offer any advice but so wanted to send you a hug . Please let us know how you get on. Hope your scan goes well. Kathy xx

[Unclear in reply to Katmal-UK]

Thank you Kathy.

[Cropcrop]

I can’t give any useful advice either but am sending big hugs and love also. Keep us informed and try to to worry too much lovely ❤️Xx Jane

[Unclear in reply to Cropcrop]

Thank you Jane.

[coksd]

Hi I don't know what to advise as I'm just after getting recurrance and my CA 125 rose while on avastin for maintence it did come down from over 1000 to 181 after 6 sessions of chemo From dec 17 to april 18 and had my last avastin sept 21st my CA 125 was 310 that day. I have my doubts if avastin ever done anything for me I did have it with chemo every 3 weeks but that was probably the carbo/taxol that worked. I know some people have had very positive results with it but I personally didn't, I feel deflated too its hard to know what to do, I never had a PET only ct scans, Please do keep us updated on how you are getting on, Take Care of yourself try and not to get too stressed. i know its hard.. Clare xxx

[Unclear in reply to coksd]

Thank you Clare. I’m sorry you’re dealing with this also. I know I just have to wrap my head around this and keep moving forward. It just takes me a day to absorb the news before I can forge through.

[Hertsmum]

Hi so sorry you are going through recurrence and feeling like this, i’ve been there and I know it’s very tough. The worst thing is not knowing what’s going on so it’s good they have brought scan forward. I hope it won’t be as bad a picture as you fear, but if current regime is not working you need to know and they can come up with a different plan for you. Do you have a CNS you can talk to about your fears or perhaps try phoning the Ovacome nurse helpline?

Let us know how you get on, sending you a big hug.

Madeline xx

[Unclear in reply to Hertsmum]

Thank you Madeline. I’m in the US so I’ve talked to my chemo nurses but they really don’t say much. I contacted my surgeon who performed my original surgery in Nov 2016. He was the one who said let’s move your scan up.

It’s discouraging but I will get through it.

[Hidden]

Hold on in there, a recurrence can be worse than the diagnosis. Perhaps it could be the bloods in the lab were in some way not stored properly. I wish you well with your petscan and let us know how you get on

[Unclear in reply to Hidden]

Thank you. They took blood today at my treatment (which obviously they always do) and they are going to retest the CA125. For some reason that test takes a couple of days for the results.

[Maus123]

Agree with the ladies and just want to add my virtual hug. Hang in there. Xx. Maus

[BeeWild]

Hi lovely I am exactly where you are but maybe a couple of weeks on from you having had my scan which has shown mixed results but ultimately new tumours have appeared whilst in treatment!! (Please see my earlier post)

I am on a trial and hoping I stay well for the next couple of weeks so I can start on olaparib and see if that zaps these new beasties. If not my team have another plan to start more chemo which I’m dreading having only just completed 18 weeks of taxol! They are sure they can get me into remission . I am devastated like you but having had since Monday to digest this news I’m confident in my oncologist and his team and they already have plans in place so that has helped!

You won’t know til after your scan and hopefully you don’t find yourself in my position but if you do im sure your team with have other options to try. I’m sure I also read that avastin can sometimes initially raise your Ca125 so fingers crossed that has something to do with it to xx

Good luck with the scan and keep us updated xx

Huge hugs to you xxx

Bev

[Maxjor]

I have not had this happen (yet) and I am so sorry you have that defeated feeling but I truly believe we all have a formula that works for each of us. Your onc will have to see what's next if it is decided you should stop this treatment. Any tumor they can use for testing? They will find the right one for you! Wishing you luck, and please keep us posted.

oxoxoxo Judy

[Suzanne333]

Hi I had avastin with taxol and carbo. Did well on those but when I had avastin only my CA125 rose.

I’ve had taxol on its own and it didn’t work. I’ve sort of gone pretty much straight into recurrences.

It’s so disappointing when it happens. There are other treatments though. Something else will work well for you. We all respond differently to treatments.

Let us know how you get on.

Sending hugs xxxx

[Travelmonster]

Hi Unclear, I'm in a similar situation. I finished first line chemo mid December 2017, by the time my first check up came round in April my CA125 had risen from 32 to 123. I went on watch and wait but by June my CA125 was up to 430 and a scan confirmed spread and recurrence. I went on to Carboplatin, Gemcitabine and Avastin end of June. The first cycle bought it down to 276 so I was pleased with that, but I've had five cycles now and each subsequent cycle my CA125 has gone up, so I'm back at 331. However, I did have a mid treatment scan which showed the tumours had shrunk. My oncologist says that the CA125, whilst dissapointing isn't always the whole picture, so I'm trying to concentrate on the shrinkage. I've got an end of treatment scan in a few weeks - depending on cycle 6 going ahead as it's temporarily been stopped as my PICC line has caused an infection and blood clot - so I'm just hoping the scan results are the same. I have my fingers crossed that your scan also shows shrinkage despite your CA125 rise.

Much love

Paula

xxxx