Rising CA125

[LesleyGB]

Hi. Looking for some advice. I completed 6 cycles of chemo (carbo, taxol plus avastin) in early October with a CA125 of 16 (op was in July). I have continued with Avastin. My scan in mid Jan was okay but my blood test last week shows my CA125 is now 23. I know this is within normal levels, I still have 5 more cycles of immunotherapy to go, and the chemo nurse wasn't concerned. But I am! Is this normal? When do I start to panic?! Thanks for any advice. Lesley

[mupash]

HI LESLEY,

CA-125 CAN GO UP AND DOWN SO DON'T BE UPSET NOW. YOU STILL HAVEN'T FINISHED THE TREATMENTS. I KNOW IT CAN BE VERY UPSETTING BUT IT CAN START TO GO DOWN . WISH YOU THE BEST OF LUCK!

LEE

[LesleyGB in reply to mupash]

Thanks Lee! My onc told me three weeks ago that my scan was very good and reassuring, then I got this and it through me a bit or rather a lot! I have treatment on Tuesday so will ask my nurse about it too. X

[mupash in reply to LesleyGB]

HI LESLEY,

HERE IN U.S. THEY ARE NOW USING PARP DRUG "OLAPARIB" WITH CHEMO. IT USED TO BE USED AS A MAINTENANCE DRUG. YOU MIGHT WANT TO ASK ABOUT IT. LEE

[LesleyGB in reply to mupash]

Hi Lee! Its certainly something to ask. I understand that the treatment I am on is the "gold standard" here the UK. All very confusing but only two days til I am at the hospital for treatment so hopefully will be able to stop panicking a bit when I speak to them. All the best, Lesley

[RoseMS]

Hi LesleyGB: when you say you have 5 more cycles of immunotherapy to go, is this in addition to the Avastin? Are you BRCA positive or negative? Just wondering if you are on a trial as so many of us seem to be on PARPi after chemo these days. Also, have you had a recent vaccine/UTI or anything that may affect your CA125, it can vary widely. If your chemo nurse wasnt concerned, that has to be reassuring. Apparently we have to watch for trends in CA125 values so your next blood test hopefully it will return back down. Good luck.

[LesleyGB in reply to RoseMS]

Hi - thanks so much or responding. I have just been on immunotherapy (avastin) since chemo finished ( 5 Oct) - I was having it alongside chemo. Genetic tests were negative. I did have my first covid jab in Feb but have had no infections. I am having my next avastin on Tuesday so will speak to someone then. Just a bit of a shock as my scan in mid-Jan was very good and reassuring according to my oncologist. Will try not to panic..the nurse didn't mention my CA125 until I specifically asked: just said my blood results were good. Hope you are doing ok.

[RoseMS in reply to LesleyGB]

Its a monthly stressor isn’t it, the bloods/CA125 result. Had mine done yesterday, results take a few days and they dont contact me, i have to request result. Might give it a miss............I’m based in London Lesley, where are you? I suppose with Avastin your bloods are checked more often, so easier to see any trends. Ive noticed they are giving PARP Zejula for non -BRCA maintenance now, and it can be given alongside Avastin apparently but unsure if this combo is available in UK. Worth asking though?

[LesleyGB in reply to RoseMS]

Hi. It really is a stressor! I am in Welwyn Garden City and having treatment at the MacMillan Centre in Stevenage. I was having 3 weekly bloods since I started treatment but then had a gap when chemo was finished but picked them up again after my scan in January. Have to have wee test because of the Avastin. The nurse seemed surprised that I was concerned as the CA125 was still in the normal range but it has gone up! Hope to get sone answers in Tuesday. Interesting about the Zejula... thanks.

[Meridian14]

Hi LesleyGB, I'm in a bit of a similar situation.

CA125 has always stayed stable at 6 until recently. I had surgery in 2019 followed by chemo and Avastin. I had the usual 6 infusions of Chemo. I was supposed to have 18 infusions of Avastin but had to stop at 14 as it was causing my joints to seize up... this doesn't happen to everyone, many woman tolerate Avastin without any problems. A few women I have spoken to say that Avastin seemed to cause them problems with their shoulders, and other joints.

Anyway, I now have arthritis and they think that I may have had underlying arthritis before being diagnosed with OC and the treatment has triggered it/exacerbated it. I suffer badly with inflammation and so i'm hoping that it's inflammation that has caused the spike in my CA125. My last CT scan was clear and I had another recently which i'm awaiting the results on.

My neighbour who was diagnosed with OC 19 years ago, also suffers with Arthritis and she is convinced that it's inflammation that has caused my rise. I see my Onc. on 15th April and I will receive CT scan results. Fingers crossed!

After all that rambling, my point is, is that it could be a bit of inflammation....

Also, a few women have said that their CA125 jumped up after having the Covid vaccine. That would also seem to be true in my case. Stable at 6 since June 2019, then after Pfizer jab it rose to 25. So, i'm not sure if mine would be due to inflammation or Pfizer jab, but hoping it's nothing sinister.

Doesn't sound like you need to panic, especially being that your scan three weeks ago was good. xx

[LesleyGB in reply to Meridian14]

Hi! First of all good luck for your Onc appointment later this week and hope the results are good. The Avastin did cause aches and stiffness but now with just 5 more cycles of 18 to go it suddenly stopped apart from one shoulder which has eased off. Today my Senior CNS rang to postpone my Avastin as I broke my ankle on 22 March and who knew you shouldn't have Avastin within 4 weeks of a break! Anyway he said not to even blink an eye at the rise in CA125! He gave me the readings since June 2020 and they have been up and down each month but never above 35. Quite a relief! Thanks for responding to me and being reassuring. Will keep my fingers crossed for you for 15th. Xx

[Meridian14 in reply to LesleyGB]

Thanks Lesley, Good to hear that the aches and stiffness eased off.

There you go - I like his style "don't even blink an eye". He's clearly not worried and so that's very reassuring.

Ouch - broken ankle! Avastin does something to the blood supply; it stops the blood vessels growing towards any tumour, so the tumour can't feed off the blood. So I assume that any sort of injury would need good circulation of blood supply around it to heal quickly and therefore Avastin not good if you need to heal from an injury.

I'm hoping to get a stoma reversal at some point and was told by my surgeon that it cannot be done any sooner than 4 months of Avastin stopping. But it actually turns out that my Onc. said to wait at least 2 years for reversal surgery as my body is still weak and delicate (and presumably don't want to risk activating any dormant cancer cells).

Good luck with the ankle, hope you're not in too much pain.

Best wishes

Lisa.

[LesleyGB in reply to Meridian14]

Hi Lisa

Ankle is okay - in fact I walked at least a mile after "spraining" it (and even went to minor injuries to get my cut hand superglued and didn't mention it) - then it got bigger and bigger and went some lovely shades of purple so got it checked! Just have to wear a walking boot. What you say about Avastin does make sense.

Yes, Mark is very reassuring - my white cells were down once and he told me they would be fine and it was just because I had gone for my blood test too soon after my treatment and he was right!

How soon before you can have your stoma reversal? Two years seems ages away but time goes so fast! All the drugs we are given certainly take it out of us - I think most people who haven't been through treatment don't realise and think once your chemo is over you are back to normal. If only!

Lesley

[Meridian14]

I'm not far off two years since surgery. Surgery was June 2019. However, I need to get stronger as this onslaught of arthritis has really had an impact on my fitness levels. I'd like to try and sort this inflammation out and find the right treatment to ease the arthritis. I'm not sure I could cope with surgery and arthritis flare ups at the same time... plus, i'm not sure having surgery whilst suffering with inflammation is a good idea. I certainly need to do some research first and ask some questions.

Lisa