Hi lovely ladies,
I hope everyone is doing well and wishing everyone the very best in this horrible time. Does anyone know after how many months does the chance of reoccurance drop? I mean with this horrible disease you can never be optimistic. But just curious.
Thinking of everyone and praying for the best for all you wonderful ladies. Wishing you a happy new year.
Hi. I am on 4th line treatment. Diagnosis Feb 2017 fallopian cancer stage 3c hgs.
The first time success, and I had 11.5 months,(carb/paclitaxel).
The second time success, with similar results, using carb/gem), however it did actually come back before 11.5 mths, (just over 6 months), but we extended treatment start as long as possible (to 12 months), before starting treatment again.
This time it had also moved to liver, with third time treatment being carb alone, however sucess again, finishing in late February 2019, liver clear, and other tumours/nodules reduced.
Unfortunately it started ramping up almost straightaway, during lockdown in March/April 2019. Pick up was only made when finally had face to face. CA125 was moving up very quickly, and I had symptons. Thee was a delay waiting for scan (covid issues), to see what was going on. We again tried to delay treatment as long as possible, but it was moving quite fast, and ct showed it had now metastisised to a number of other places, so started weekly paclitaxel in early August. Again it was successful, and has dropped the CA125 relatively quickly, and areas of pain have disappeared. I did this for 15 weeks, (2 one week breaks during this, for a blood transfusion, and an eye operation, as a result of a retinol bleed caused by chemo).
I have not had another scan as yet, however I have moved to a maintenance regieme of two weekly treatments, in a bid to try and hold it for awhile until treatment starts to fail. I have just had the third one today.
So summarising, three times treatment has knocked it back, and the tumour marker has dropped to between 10 and 12, and the ct has shown reduction, however the time between re-occurrence has been shortening each time. This latest journey of weekly paclitaxel dropped it to 18, and my Oncologist recommended I went straight into maintenance treatment.
I should say here, that it is important to note that I know people who have had the weekly paclitaxel and have gone into remission for up to two years and counting. My gut feel is I am not going to be one of those unfortunately, but the hope is still well and truly alive.
We are all individuals, and while it is helpful to get a gauge on how others have gone, every body is different,. This is just my own story.
I will be 4 years next month, albeit half of that in treatment. Fingers crossed that I get past 5. 💙 Best of luck, Therese
Hello Lind58 I think you have asked the 64 million $ question!
I am not sure that risk does drop...just that some recur and others don’t. I was picked up after 3 years following first line with ‘something on the scan’ but nothing happened for nearly 2 years... then it recurred big time... although just para-aortic lymph and liver. Having said that I am nearly NED again...just about to do my remaining 2 cycles. OC does not appear to play by the rules! xx
Hi Lind58,I was diagnosed 3C in September 2015 and have been NED since completing chemo in April 2016. At that time I was told that I had more than 80% chance of recurrence within 2 years, so had 3 monthly review appointments with my oncologist until April 2018, when I moved to 6 monthly checks., on the basis that recurrence is then less likely.
Recently a new oncologist tried to move me to annual appointments, but I felt that was too soon and have one more in April before changing. She told me the chance of recurrence after 5 years was much less, but as my tumour grew rapidly originally, without any symptoms, I am uneasy about moving to annual appointments. However, I shall be happier doing so if I can still get my CA 125 reading checked more frequently, as I know that is a reliable marker for me.
Sorry for such a detailed reply, but it seems to be that the longer you are NED, the less chance of recurrence, but there are people on this forum whose experience has been different, as we are all individuals and none of us follow the same route exactly.
Hope my reply is helpful and that you continue to keep well.
Love, Barbara
Hi Lind58. One thing this disease has taught us is that it unpredictable and behaves badly when and where it pleases! I was just coming up to my 5 year NED when an inguinal node started swelling. My CA125 rose to 85. When I was able to get in for a CT scan, and biopsy it had grown to 3.5 inches! I had an operation to revive it and the labs said it was definitely my Ovarian Cancer on the move. I did 25 radiation treatments and I will get a CA125 test next week to see if it went down.
For the ladies with mucinous OC
Face creams/ mouth wash
Happy New year and update on Christmas day lunch Lorraine 
How many have been diagnosed with Carcinosarcoma?
