I am getting carbo/taxol and my CA125 is 114. After 6 cycles the doctor wants to start avastin as maintenance. I am afraid that stopping the chemo and having only avastin won't keep the CA 125 down.
Has anyone received maintenance avastin having a high CA125? Did it keep the CA125 at the same level or lower?
Hi Alex29 as I understand it Avastin works rather differently. It prevents blood vessels forming to feed solid tumours. This in turn helps to hold back progression.
It would be unusual to have more than 6 cycles of chemo because it is so toxic to your whole body.
You could look for a second opinion or a trial perhaps? But I suggest you talk to your oncologist about your worries and get them to explain what they hope the Avastin will do for you xx
Hi Alex, I wouldn't worry too much, my numbers were higher than that after I had the avastin. I'm now on Tamoxifen and my numbers go up and down all the time. They have never gone below 100 but I feel fine. I recently had a scan and that was fine. I'm on 3monthly blood tests watch and wait but I'm still here enjoying life. Everyone is different but you can't always go off the numbers. If you're body is telling you, hey I feel OK then listen to it and visa versa. Only you know how your feeling but worrying makes us feel ill I think 🤔. Sending you my best wishes xx
Hi Alex its a journey thats for sure l had same combo of chemo my CA125 was over 4,000 but after 6 months chemo my count was 9 please give yourself time it worked for me they didn't give me anything else. So try not to worry 3 years on lm NED and it 12 at the moment, your oncologist will give the right treatment for you. Sending love & hugs SheilaFxxx
Hi Alex, Lyndy is right no one gets more than 6 cycles of carbo/taxol because it is so hard core. I went on to Avastin plus Olaparib afterwards because I am HRD positive. CA125 hovers around 50. I had spread to the lymph nodes in my neck and chest. These disappeared after Avastin. The fact that it comes at the tumour from a different angle is what you need to hang onto here. We don’t know how or even if these drugs will work for us but hang on in there it sounds as though your team know what they are doing. Good luck and hugs. Gill X
I had 8 rounds of carbo/taxol when I was diagnosed five years ago. It returned this past October and I just completed another 8 rounds of carbo/taxol and my latest CA 125 is five.
Hi, I've just read that you was on the Avastin & Lynparza, I'm really struggling with it, how did you get on with it?I'm tired & breathless a lot of the time & had to have a blood transfusion as red blood cell & platelets were constantly low & it was down to Folic anemia deficiency but that helped for a month but now feeling exactly the same but my blood levels are ok, most strange?!!xx
Hi Alex, I had 8 cycles of carbo/taxol and am now on Niraparib. Bizarrely my CA125 wasn’t even high at diagnosis and I was told by my oncology team, it’s only one of several things they look at. But I am stage 4/a and it had spread to my peritoneum. I was given 6 months to a year by the surgeon however I’m happy to say I’m still here after two. Everyone is different. As others have said, your oncology team will give you the right treatment for you. Big hug, stay strong. ❤️
Hi Alex29, I have had the same combo twice with 3 recurrences, my CA125 dropped each time when on chemo and then maintained between 10 and 30 on the Avastin…I got 3 years and 4 months remission when I stayed on the Avastin but when Avastin stopped the beast was back within 6 months, had surgery and chemo again and back on maintenance Avastin so I wish you all the best with your treatment and hope you have longevity with it ❤️
thank you everyone for all the answers. They are very helpful and give me very valuable information.
have they done a recent CT Scan? How was it? Avastin kept my two (OVCA) psoas muscle Tumors under control for years. It eventually didn’t work as well so I was put on Gemzar to knock it back. I am now back on Avastin. My CA hovers around 50. Hope this helps. I believe they limit Carbo/taxol to 6 cycles.
any talk of a PET Scan?
After carbo/taxol/avastin and surgery all was well initially but avastin alone did not work for me. I had peritoneal stage 3c. A PET scan showed spread so I went on carbo/caelyx which worked well. I have been on Niraparib for a few months now and so far so good. I have a friend ( we met in hospital) who is on Avastin and Olaparib and is doing really well. In a nutshell what works for one person does not necessarily work for another. Best Wishes Katy
