I've got PPC 3C, diagnosed in August 2016. I had 3 Carbo/taxol followed by sub-optimal debulking then another 3 Carbo/taxol. NED in February 2017 (some microscopic disease was still present, but not considered troublesome). I've had 13 out of 18 cycles of Avastin and have pretty much resumed a normal life. But, my CA125 has been rising over the last few weeks it is now 170 (the lowest it has been is 22). I have no other real symptoms apart from vague abdominal discomforts. I've had a scan which shows no change in my residual disease. My consultant is calling my current condition 'stable'.
I've been really positive so far but for some reason this has knocked me back a bit so I guess I just need some support from folk who may have been in the same position as me.
Thanks for listening. Best wishes to you all, Ali x
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Hi Ali, I can see how this would knock you back . I haven't been in the same position and I take it that your are to continue with the Avastin? Just wanted to send you a big hug, Kathy xx
Hi Alifit...I know exactly how you feel. I just found out the same thing yesterday. Dec 2016 diagnosed with Stage 4 OC, I'm 38 yrs old and have a young child. Did carbo/taxel for 6 rounds (6th round had reaction to carbo) then May 2017 had complete hysterectomy/debulking. After surgery another 6 rounds of cisplatin (due to allergy), avastin, and gemzar. Originally was at 16 then 21 then back down to 14. Now it has been rising about 50 points everytime I take c-125. Found out this morning it went from 84 to 137. So, I feel exactly the same as you. Only difference is that 2 small nodules pop up on my cat scan. I have a PET scan scheduled for tomorrow so hopefully it will be more definitive. My head is spinning...I'm in process of getting appointment for 2nd opinion from Sloan kettering in NYC. If you can try to get a second opinion...there must be a reason its going up..maybe inflammation? Please know you are not alone and yes, it's scary! Wishing you all the best! Sending HUGS!
Hi Marina , thanks for your reply. I'm in Birmingham in England and am going to hold fire on second opinions for the time being - my Hospital is a centre of excellence for OC, but I have still researched possibilities should I feel the need arise.
I was diagnosed when I was 62 - and although I don't feel old, I have had a great life and have done pretty much what I came here to do (three wonderful children, four amazing grandchildren and a great partner to support me) so it makes me really sad to hear of younger women having OC. Sending love to you, Ali x
I’m stage 3c. I finished first line in January this year. I was still on avastin but my CA125 was rising slowly. They stopped avastin at number 13 as it was affecting my kidneys.
It does knock you back when you get news you don’t want. It’s very hard to be positive all the time. Xxxxx
Hi Suzanne, it is a knock back and I get cross with myself for feeling this way because I am really lucky - even since diagnosis I've tried to live as normal a life as possible and to be positive about the whole thing. Also I know it's not the end of the world, I've only had first line treatment and there are many more available, however, I was just feeling a bit deflated and wanting a bit of reassurance. Thank you for your reply - it helps to put it back into perspective.
We all need reassurance. We go along feeling positive and normal then we get whacked with a sledgehammer. Totally normal to feel how you feel.
I’m only going to begin second line but I had a wobble. Just thought, here we go again. I just want to live a normal life and forget about the gremlin but he’s always there lurking. Bloody thing.
Sending you a big hug. We are all here for you. Xxxxx
Thank you. I'm having Avastin number 14 today, but am going to a Macmillan coffee morning first at the school where I taught. It'll be fun to catch up with folk (although I don't miss working at all!).
Hi Ali like you I was diagnosed in Sept 2016 with PPC Stage 3. I had debulking before start of chemo. My CA125 has risen over the last six weeks going from 13 to 85 and had a CT scan recently. I got the results yesterday at my 3 weekly visit for Avastin - 13 out of 18. No tumours detected but ascites present. CA125 level risen to 385 but they don't seem concerned. I have always been positive but this has thrown me as I have been feeling ok. This has just topped off a bad week having my car written off and my college course cancelled. It has got to improve!! Best wishes Angie
Oh Angie, what a horrid week for you. I'm just home from Avastin 14 and feel really tired - I have done the coffee morning and had coffee with my friends too. I'll try to put this week behind me otherwise I know I'll overthink it (story of my life!) - not always easy though. The support from you and all who have taken time to reply to my post make a huge difference in finding the correct perspective for this.
I'm sure it will improve - hopefully it's just a hiccup in the proceedings. Love to you, Ali x
Hi Ali, with a CA125 of 170 and microscopic residuals , what does the Onco mean by stable? To chemo or not to chemo?
Hi Angie, shouldn't a CA 125 of 385 be a cause of some concern at least? I do agree that there are no thumb rules here as the CA 125 levels mean different for different people. Reason I'm asking is even if there are no visible signs of the disease in a CT scan , im told that there may be microscopic remnants due to which the CA 125 levels are higher.
My wife Gauri has had her second cyto reduction last month and her CA 125 was 39 on 12 Sep approx a month post her second op.We are to wait and watch her CA 125 levels mid next month and for every month thereafter to monitor the same . Increase in levels may warranty a second cycle of chemo, which is dreaded.
Wish both of you all the best in health and happiness.
She means stable as far as my diagnosis goes - my debulking was sub-optimal - apart from a large tumour on my omentum, most of my disease was scattered over my stomach but there was also a tumour on one of the blood vessels to my stomach which they couldn't remove without extensive damage to the blood supply. Obviously during the operation, after they had removed my omentum and associated tumour, they checked all the contents of my peritoneal cavity and found nothing else. The chemo shrank this tumour on my blood vessel which resulted in the NED opinion in February. According to this week's scan this hasn't changed and there is no ascites either. I think that CA125 is a somewhat fickle marker, so I am not going to worry about it any more, just monitor myself for other symptoms that might indicate a recurrence. I'll deal with that if it comes.
I hope Gauri continues to do well. Thanks for replying, best wishes, Ali x
Hi Naimish, I have been thinking of you and Gauri, I hope the 125 stays as it is or reduces. I hope Gauri is recovering well post surgery, all the best
If your oncologist is happy to continue with Avastin, I suggest that is a positive thing. I got stable from Avastin and I am still stable two years later so please dont despair.
Well done you; yes I think you are right. I've tolerated Avastin really well so I'm happy to finish the course - my last one is scheduled for two days before Christmas - there's a celebration! In the meantime, I think tonight's toast will be 'stability'.
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