I'm afraid I've not had a good day. It was my first chemo today. I've been doing very well with the positive outlook, being brave thing but it all went to pot today. I started out OK and tried the cool cap which was horrible to start with - ten minute brain freeze headache then bearable. Drugs etc fine. I was still in the 'grin and bear it its a necessary evil' frame of mind until I asked about my CA125 score.
I had what seems a tiny score compared to most - first time 101 then 98 pre surgery. I had persuaded myself that as they had physically removed all the bad bits (I'm 3Ca) and I have completely overhauled my diet etc since surgery that my score would be drastically reduced (in my head single figures) so therefore the chemo was just an insurance policy to get rid of any tiny cells left.
They said at the pre chemo check last week the score was 61. I was gutted as I was so sure it would be less. I had my first proper crashing meltdown. I managed not to cry but felt absolute and complete certainty that the chemo was not going to work and I am going to die soon. If the rate hasn't changed much my lymph glands must be riddled with it (that's where op found it had spread to.) I've cried once home properly for the first time. (Nice hubby hugs though.)
Trying to be rational - only six and a half weeks post surgery, CA125 can be raised due to inflammation, not a completely accurate indicator etc. However the terror was total. I obviously am one of those that doesn't show high rates so how do I know if the chemo works? Ladies with horrendous scores in the 1000's can see definite big results. How to tell if it gets worse/comes back if my scores are so comparatively small?
Can anyone remember what their rates were post op but pre chemo? Versus post chemo? Any info please very welcome as I'm properly shocked and scared.
Hope you all had more positive days.
Em
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Hi Em- my lowest score after chemo but before surgery was in high 30's (responded well to initial cycles). My sore 3 weeks after surgery, at start of chemo again was in 40's. I did have a good cry about it. My expectations were thinking the score would be way down. I get rechecked tomorrow as I begin my next cycle. Really can make us go insane. 🤞🏻To us both!
Hi Anne. Thanks for that - do you know what it was before chemo? I'm so keeping my fingers crossed for you for tomorrow. I know it's not a perfectly accurate indicator but sometimes it's all we've got!
- continued to climb during my first four weeks of treatment. Was a complete wreck watching it rise during chemo)
- maxed out at 1398 on Nov 9, 2016.
- then steady decline with a low of 31 after 4 cycles of carbo/taxol on Jan 4, 2017
- Surgery Jan 19, 2017. It was next taken on Feb 10 and was 45. This was the day I started post op chemo again. Tomorrow I will be taken again as my dr now wants it taken every 3 weeks.
Thank you. I've just read the report Choski has posted on CA125 which kind of puts it in perspective too. I hope u get a good result from today though. 🙏
I had a low CA125 of 26 before surgery, within the normal range. Post op and pre chemo it had reduced to 16. After 3 cycles of chemo it was still 16 and having had another cycle today is has only reduced to 15. I thought as it was so low to start with it would have dropped to single figures. It is obviously not a good marker for me as it has always been low. My oncologist said that this could be my baseline and it may never drop to single figures. She will only be concerned if the trend is for it to rise.
I like you was shocked and upset and wondered if chemo was actually working. Oncologist assured me it was and she was not at all worried.
We are all different how our bodies react and perhaps you should discuss your worries and concerns when you next see your oncologist. Hopefully they will be able to set your mind at rest.
Thank you so much for that. I needed to hear someone else's story that was more similar to mine. I can hopefully have slightly more realistic expectations from now on. I'm going to check with the onc but think that like you it is just not a great indicator.
Hey Em! Try not to get to concerned at this stage. I was 2000 pre op, 80 pre chemo, 55 after 1st cycle and now after 5th cycle am down to 9. If you can stay positive and active as possible through the coming months it will help you mentally and feel sure those numbers will be good to you. Take care and stay strong xx
Hi Em, I completely understand how you are feeling, although I had already had a couple of chemos when I had my scan results, and yes, my CA marker was not a lot lower than before the OP. I too was upset, but am happy to say that post chemo, and now on Avastin, my CA is 6. Keep the faith, and trust your oncologist. You are still at the start of your treatment.
Drain was done on 6th Feb and its built up again but they couldn't do it this week as whilst there is enough the entry points are too near my liver and bowels so back next Tuesday for another scan to hopefully find I'm fuller and there is a clearer entry point! So surreal isn't it!
Hi. Try not to worry about the numbers and just focus on the fact it is coming down. Mine was 4000 before surgery then came down to 250 afterwards before chemo. Every time I saw my oncologist I was obsessed with what it was and it did come steadily down with each chemo and finished on 13. It's really easy to obsess about the number- I was disappointed that it wasn't in single figures but I was still NED at the end of first line chemo. Xx
Hi. It is hard to keep being brave. Waiting for, then getting, results is a rollercoaster. I'm sure your bravado will return, especially with cuddles. CA125 can come down slowly. I've read somewhere that it is given off from the surface of cancer cells as they die. It may continue to come down after the end of chemo. It does for some people. My lymph nodes were already involved when they found I had OC, over 6 years ago. Good luck.
Thank you for the link Choski - very interesting read.
Hi Em. I've been on the OC treadmill for 5 years now. I thought I knew a thing or 2 but to be honest, the 6 months that followed diagnosis back in 2011, are now pretty much a blur, caused by the shock of the whole thing at that time, so I clearly remember that bit of what you're going thru'. I was 3C at diagnosis with CA125 of 440. I could be wrong here but I didn't think we should expect that CA125 to be back down to normal levels until the 6 doses of chemo were all done.
My OC, as well as a big tumour, had travelled to a few places, including a lymph node in my groin. I seemed to cope with everything as well as can be expected and went into remission when the chemo was over. I did have a recurrence 18 months after chemo had finished - I felt a lump in the lymph node again, so needed to have more chemo. Again, I coped with everything as well as can be expected and went into remission following that chemo too. So what I'm trying to say is - DON'T PANIC. Five years on, CA125 is currently 15 and I'm well. I'm quite sure you're not about to die. So, repeat after me - I'M NOT ABOUT TO DIE AND I WILL NOT PANIC. Best wishes. Pauline
I was diagnosed in Feb 2015 with a ca125 of 600 . I had 4 carbon/taxol before surgery and my Ca 125 dropped slowly to 199. After surgery it was 113. I had 2 more chemo and then Avastin for a year. My last ca125 was 18 in Jan 16. It then rose slowly for the next 10 months but scans were clear. It was a stressful time. Last scan showed progression and ca had risen to 409 so I am back on carbo taxol. I went this week for bloods and second chemo and was so upset that my ca level had risen to 497. I really can't understand as it dropped well during my first line. I am going to be positive and wait until next session but I really do want to scream and shout and let it all it!
I think sometimes it's absolutely normal to have a good cry. Something will trigger it, & we almost need that release to let stuff out. I know I do!!
If it helps my CA125 was down to 100 pre-op & I felt shocked when I heard it had risen again to 177 PT-surgery, but my Onc reassured me saying after surgery you can get all sorts of false positives. However it doesn't help that they forgot to test me last week and so I'm still awaiting that reassurance that it is indeed coming down again now I'm nearly 8 weeks post-op & on my second round of chemo. I had a moment yesterday where I thought 'what if' but my husband was there, as always with words of positivity so I didn't let that thought take hold.
Am at chemo now so they will test today, & I'll hopefully get the results at some point next week 🙏🏼
Hang in there....
Re the cold cap, stick with it. Am about to have my 13th weekly chemo session today, & touch wood still have my hair! Make sure it's on as tight as can be, & I take a painkiller about 20-30 mins before hand to try & help ease pain. It's also my husbands job to distract me for those first 10 mins till my head goes semi-numb & the pain is more bearable.
It's a real roller coaster. Post op 2 weeks later started 18 rounds. Ca was 1921 pre op. After treatment started went all the way down to 3. Then started going up slowly. Finished round of 18 again and then did start to rise(99) Two weeks ago started a drug Rubraca (pill) This is for OC with positive Braca gene. Try to stay positive as well, some days good, some days not so good. We have to just keep fighting!
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