RISE IN CA 125 : Shell Shocked After 14 of 1... - My Ovacome

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RISE IN CA 125

Gemimablackvelvet
Gemimablackvelvet

Shell Shocked

After 14 of 18 weekly Taxol I was told today that my CA 125, which had recently dropped from 110 to 11, has now risen from 11 to 24 during the last 3 weeks. I don’t have to tell most of you ladies what that feels like. The oncologist says it looks like the Taxol has stopped working. He gave me a choice of stopping and having a rest or plodding on. I opted for plodding on. A CT scan will be arranged for me and the next plan of action will be discussed at the MDT meeting either this Monday or next. I’m more than worried as I’ve already had Carboplatin, Carb/Caelyx, Niraparib and Rucaparib. Taxol was my last hope but I pray there’ll be something else out there for me. The oncologist said there is always something else but he doesn’t want to kill me. I’m willing to try anything but not sure he will. Just how many chances do we get and how long can we hope to carry on with different treatments.

Feeling very down right now but tomorrow is another day.

Love to you all

Angela X

76 Replies

I was only thinking about you yesterday and wondering how you were getting on. I’m so sorry to hear that the Taxol has stopped working and hope they come up with another solution. Lots of love. X

Thank you for replying. Always makes me feel better to here from friends on hereAngela xx

Hello Angela - I am surprised that your oncologist thinks your taxol has stopped working as your CA125 has risen such a tiny amount, there are lots of things that could have caused that, I really don't think its time to throw in the towel. I think you are right to continue with your treatment, then have the CT scan which is a lot more accurate at detecting what is going on inside. I know its easier said than done but try not to worry. Good Luck Lyn x

Thank you Lyn, I have 4 more to go. I hope they let me carry on with all 4. Angela X

Forgot to say your Ca125 is still well within normal range - under 35. X

My CA has never been very high so not always a good indicator. The messages on here today have really lifted me. Thank you

Angela x

i'm-with-lyn,-angela.-seems-too-early-to-say-it's-not-working-if-they-planned-on-18.-dispiriting-i-know.-hopes-prayers-that-another-four-make-the-difference.-candy-xx

It's tempting to have a rest Candy but all my friends on here seem to be of the same opinion. Carry on regardless. Thank you

Love from Angela xx

Kayp
Kayp in reply to lyn1987

Agreed don’t stop

Hi Angela. I understand your being gutted by this but the number could be a blip. You haven’t had Gemzar yet or other less common for OC chemos. Or immunotherapy. Hang in there until you have the scan and know what’s what. I’m sending positive vibes and hugs.

Thank you Delia, I’ll try my best, just don’t know what to do with myself at the moment. Angela x

Hang on in there. I had a rise to 22 when having my first lot of chemo and it then went back down to 14. When is your next blood test? How do you feel? Also I had an appt. at The Marsden yesterday for a second opinion as my ca125 has risen on Olaparib and I'm BRCA2 so I feel your pain. The doctor told me that she doesn't go by the ca125, just how we feel and what our scans show. I was also told that there are several trials underway for ovarian cancer so we must always have hope for the future and new treatments. Stay strong, we are behind you xx

Thank you Sticky, my next CA 125 test in 3 weeks. I’ve had pains all over today but not sure if last Monday’s Taxol working or something else. We can never tell can we. I was hospitalised last weekend with a chest infection but the oncologist knew all about that. It’s practically cleared up now. Good to hear what The Marsden have to say about trials though. Sorry about your CA 125 rise but good that your doctor does go by numbers. They’re all different - so are we. Love Angela x

I also had a chest infection in September and was in hospital for a week. I had a ca125 rise then too from 11 to 15 and it then went back down again. What we have to go through mentally and physically is so tough and so unfair. If somebody had told me at my 50th birthday three years ago what was in store I’d never have believed it in a million years. We must be made of strong stuff. Try not to worry although that’s near impossible and take one day at a time. There are always new treatments being developed and we have to keep hold of that thought x

Kayp
Kayp in reply to sticky3006

Yes I too thought that other infections may alter the CA125 level a bit

Millie-c
Millie-c in reply to sticky3006

Hi There,

Would it be possible for me to ask how you managed to get a second opinion at the Marsden. Did u just telephone them?? I’m 5 years in on my journey. My onc has been amazing throughout, but I’m not sure I’m on the same page as him at the moment. I’m on olaparib, Ca125 rising slowly. Gone from 40-103 since last June, I’ve had ct scan which doesn’t show any change in my tumours or any new ones. I have pain in my right hand side but not all the time. Have no idea if this pain is cancer related or something else. My onc says because of the pain to start chemotherapy?? This would be my 3rd line. My worry is coming off the parp, which is keeping visible tumours stable to treat something that we don’t know where or what it is, leaves me in a position after chemo with no maintenance so surely the other tumours I have will eventually wake back up!! I wondered if we could stay on the parp and have chemo?? Loads of questions really!! Sounds like you are in a similar situation?? Any info would be gratefully appreciated??

sticky3006
sticky3006 in reply to Millie-c

Hi Millie-c, I'll send you a message as not sure we can put contact details etc. on here, thanks x

win_56
win_56 in reply to sticky3006

Would you be do kind to message me privately the contacts details at the Royal Marsden fir 2nf opinion. Thank you.

SASSY196
SASSY196 in reply to Millie-c

I know you are getting pm but I went to my GP who wrote. I don't know how to pm you but if you contact me I can tell you name of my oncologist there.

Dear AngelaI'm very sorry to hear about your blood result and can understand you feeling so down.

Think you're right to carry on with the Taxol for the time being and as other ladies have said there will be other things to try so please dont despair.

Just a thought, have you been unwell at all? I know one lady replied to a post saying her Ca125 went up when she had Covid and came back down again after.

Sending you a hug and wishing you strength.

Liz xxx

Hi again Liz, yes I was in Chesterfield Hospital last weekend with a chest infection but the oncologist knew all about it. I’ll just have to hope for the best and wait until the CT scan. Been in a bit of a panic today. Thank you for replying

Love Angela X

Just a quick note to say: please take heart as your CA-125 is still really low and well within acceptable range. Also my mother Laura/Lindaura loved your posts and admired your spirit; she was really inspired by you. As for what comes next, there are always trials. Although my mother's was unsuccessful, other people have had better results!

Love,

Jane

Dear, dear Jane, what a beautiful message. I think of you and your darling mum, Laura, often. I cannot imagine how you’re coping without her. It’s got to be the very worst time of your life. I pray you’ll find some happiness eventually but for a long, long time all you’ll want is her back in your arms. I’ll never forget her words of kindness and inspiration like many other ladies on here. Laura was the heart and soul of Healthunlocked we all miss her so much. My love to you and thank you for taking the time to message me. I’ll take it onboard.

Lots of love

Angela xx

I can completely understand how you are feeling. My onc also says she doesn’t only rely on ca125 levels as they are only an indicator and not the whole picture. When mines rose quite a bit I felt absolutely fine and when they dropped significantly I felt rotten. I became so obsessed with them that we have now agreed she won’t tell me what they are. I see you had a chest infection and that too might have played with the markets. Take care x

Thank you Karen, I’m going to take in all the lovely messages I’ve had today and try to think - all is not lost. Some ladies have gone through so much more and come through it all. I dread another scan but don’t we all. Tomorrow is another day.

Love from

Angela xx

Saying a prayer for you 🙏🏽 This disease is fking awful. Please let something come through for you🙏🏽

I’m with you Lind, please let something come through for us all. Miracles do happen

Love Angela xx

Hi Angela, I agree with the many ladies on here about the CA 125 levels. The CT scan shows a more accurate thing what is going on. I know we get worried when we have to wait for results from blood tests and scans. I hope things go good for you. Sending a big hug, Donna 😊

Thank you Donna, my CA has never been very high and usually a good indicator. In the past I had a recurrence at 37 when Carbo/Caelyx did a really good job but the Devil still didn’t relent. Thanks for the big hug. I needed it.

Angela xx

You’re very welcome. 😊

Hi Angela, vey sorry to read that your CA-125 has risen - hopefully it’s just a blip. Perhaps try not to worry until you know something for definite. And perhaps seek a second opinion? Oncologists do have a lot of drugs in their arsenal. Take care, love from Mel 💖 xx

Morning Melody, feeling a little more hopeful this morning and trying to look on the brighter side. A second opinion is very tempting but I would feel so disloyal to my oncologist, who I dearly love. Not love exactly but you know what I mean. He’s a bit of a Job’s comforter yet always has a twinkle in his eye when he’s delivering both good and bad news. Love from Angela x

Hi Angela, apologies for the delay in responding. Just to say - I do understand how you feel about your oncologist, however, it’s your body and life, not his! Don’t feel guilty about a second opinion - you are entitled to it 💖. Love from Mel xx

Thank you for replying Mel, it's never too late. I do love my oncologist actually. He's funny and explains everything in great detail but my hospital believe in quality of life not quantity. I would seek a second opinion if necessary but I would feel guilty.

Love Angela x

No problem at all, Angela, and thank you. Your oncologist does sound lovely!

I did seek a second opinion prior to starting chemo as my oncologist was kind of on the fence about it herself, kind of leaning away from chemo in my case due to my stage, grade and histology. She got second (and third!) opinions for me, which were pretty much the same as hers - lol.

I did opt for the chemo just for that potential extra couple of percent that it confers - my surgeon advised me to have chemo - I went with her - no regrets as I know that we threw everything at it. I did feel guilty asking my oncologist about a second opinion as she is really lovely also, and very experienced. She seemed a little annoyed if I am honest! But she did it for me with bells on - as I say, she is lovely, as is my surgeon.

I think she was glad to discharge me back to my surgeon after chemo was completed! But Hopefully, this is just a blip 💖. Love from Mel xx.

Hi Angela agree with the comments , just a little rise so hopefully it’s nothing to worry about , and your scan will be fine

Sending hugs 🤗 take care Lesley xx

Thank you Lesley, I hope you’re right. Love from Angela x

That must have been a really tough day to find that out. It’s sounds like you have the determination to keep going and give everything a try. Fingers crossed for the next few treatments and the scan x

Thank you Wonnie, I still have 4 to go. I had such faith in Taxol which did work wonders until now. I had no side effects, except losing all my hair of course 😀Love from Angela x

Hi Angela. The exact same thing has just happened to me, on the 5th of Feb. I went in for my appointment to be followed by treatment, and my world stopped.

I had completed 17 treatments, and it had worked an absolute dream, taking me quickly from 597 to 18. I was a little worried, as before I had always dropped down to 10 - 12. But Then my fears were realised week 16, when it went to 21, then 36, and on the 5th, (which would have been 18), a reading at 65. At this point the Oncologist told me it was no use continuing, as it was no longer working. Just waiting for my ct appointment so we can determine what is going on. This was 4 th line treatment for me. My remaining options are apparently an oral one which I cannot recall the name of, (not etoposide), Gemcitabine by itself, and finally Caelyx, which I will need to pay for, as it us not funded. Xx Therese

Morning Therese, I’ve just lost a long reply to you. I hope you don’t get it twice. I think I recall your last post about your dilemma and I’m really sorry. When we reach 4th line we worry there’s nothing left but it seems there could be. Some ladies on here have gone beyond that number and pulled through. I had so much faith in Taxol, like you and really hoped it would at least give me a break. Every good wish for your scan results. Hope to hear from you with good news shortly. Love Angela

Don’t despair hon., I am told CA125 can often go up & down during treatment so much so I have stopped checking it. Am up to 16 of 18 Paclitaxel & am not looking forward just taking it week by week. Inside X

Morning Inside, good luck with the last 2 Paclitaxel. I pray it gives you a long cancer free remission. Love from Angela xx

Understand completely how you must feel. Even a small rise in CA125 is enough to shake us. Fingers crossed it is a blip. Agree with your decision to continue Taxol until you get the scan results. Thinking of you xx

Morning Numi, I’ve made some dreadful decisions in the past so hope the decision to carry on another 4 weeks will be the right one. Love from Angela x

Hi AngelaI am in exactly the same place as you. Last Taxol Monday, scan the week after then consultant on March 8th, (our wedding anniversary).

Very scared but still not ready to give in if possible.

Thinking of you and wish you the best of luck and that the "magic" pill is waiting round the corner.

Love

Janet

Good morning Janet and thank you for caring. wishing you all the very best for March 8. Love Angela xx

I'm sorry. Hoping the MDT has some ideas xxx

Hi Sashay, so do I but the thought of several doctors getting together is frightening. Bit like a jury.

Love from Angela xx

Oh my. 1st ca125 not necessarily an indicator i dont get mine done anymore as it is always low and i still have tumors. But we have all been here and it is hard but there are always more options. Hiw are you physically? Can you take long walks distract yourself sleep ...its the not knowing that makes us nuts. Stay strong hugs from france

Good Morning Angela, sending prayers from me to Gods ears for toy today💕Susan

Thank you so much Susan, i really appreciate those words. Love from Angela xx

Hi Angela,

The numbers are stacking up- I’m another who thinks the small rise in your CA125 could be for other reasons and may not be significant!

It’s strange how different our treatment regimens are. I’m about to start Paclitaxel for 3rd line - I’ve had it each time (for 2nd line after an allergic reaction to Carbiplatin(.

There are so many options now that I’m sure there will be something for you, even after Paclitaxel.

I hope you find some comfort in all the replies you’ve received. Just don’t give up!

Sending hugs, Iris 🤗 🤗

That's good to know Iris, thank you. Yes I have found some comfort from the kind ladies on here. They're unbelievably kind and caring.We're like a family in a way..

Good wishes and love

from Angela xx

Did u get ur vaccine recently ? Apparently it can put it up a bit

Hi Gemstone, yes I did get the vaccine but it was 3 weeks before. I had a chest infection 2 days before the CA 125 test and was admitted to hospital overnight. It appears to have gone now but my oncologist knew all about that. I'm hoping that could be something to do with it but why wouldn't the oncologist pick up on it. I only can only hope.Thank you for replying

Angela x

Dear Angela I am so sorry to hear all that you’ve been going through. After awhile my chemo’s were non-responsive as well, and I’ve been on Avastin once a month for quite a while now. It is keeping my CA 125 marker steady. Have you discuss this type of treatment with your doctor? Praying for you and all my OVCA sisters!

Good evening Leniko! yes I have asked my doctor about it before but he said Avastin would cost me over £4.000 per month. I assume it's not funded in England. I asked about 18 months ago but surely he'd have mentioned if it was an option. I'll see what the scan shows and take it from there.. Do you know anything about funding Leniko?Thank you for your reply.

Love from Angela xx

Some drug manufacturers will work w patients. It may behoove you to email or call them? . It is covered here in the US.

That's interesting Leniko, I can't understand why it's funded in America and not here. It surely has to proved successful before the insurance companies will accept it. The same with many cancer treatments. I'll definitely look into it closely and thank you.Love from Angela x

And Love to you! 🙏

I am sorry to hear this. You have sent me some very kind replies when I have been worried . I haven’t the experience to offer any advice but hope you find some helpful and supportive advice on here. I have had covid and my ca 125 has gone up, again, so hope your small rise is due to something other than what we all worry about. Fingers and everything else crossed for you xx

Thank you Laz, let's try to think it's just something to do with your Covid and my chest infection. I can't think why my oncologist didn't suggest that though. I've searched everywhere for answers. I suspect you have too. All the very best to you

Love from Angela xx

HI ANGELA,

SO SORRY TO HEAR THAT NEWS. THE C-SCAN WILL TELL YOU MORE AND THERE ARE SO MANY MORE KINDS OF TREATMENTS OUT THERE. I'VE KNOWN PEOPLE WHO WERE SWITCHED TO CISPLATIN AND THAT WORKED WHEN CARBO DIDN'T. I HOPE YOU CAN ARRANGE FOR THE SCAN SOON. PLEASE KEEP US POSTED AND KNOW YOU ARE WISHED THE BEST!

LEE

Hi Lee, thank you for replying. I’ve heard of Cisplatin I wonder if it’s any better/stronger than Taxol. I’ve felt really rubbish these last few days and hoping another dose of chemo on Monday will make me feel better or worse. I’m going of course I just hope I’m not piling on the agony for nothing. I feel blessed being involved with this wonderful group. I don’t know what I’d have done without it.

Love from Angela xx

Hi, Angela. Sometimes, as in the case with PARPs, your CA is driven up by inflammation you may have in your system. I am on Zejula and my CA has been climbing while scans have been clear. Hard to do, but, please try not to worry about the numbers. I do the same thing and I get so tired of being stressed. Hope it all works out. Best to you!

Marisa XOX

Thank you Marisa, I resisted the temptation to stop treatment and went ahead with chemo today. It was a strange feeling having been told it had stopped working but I tried to think, like almost all the ladies on here, it could be a blip. The pending CT scan will be the decider I suppose. So happy for you and the clear scans. It’s amazing!

Love from Angela x

Hang in there. The anticipation is so brutal, more so than the issue itself at times. I’m hoping it’s all a big nothing or if it’s something....it will be small enough to blast out of you. Best to you!

Marisa xox

Thank you Marisa, I hope you’re rightAngela xx

Hi how are you? I have just found out today that my CA125 is also rising, mine has gone up by 300 - so like you have an anxious couple of weeks ahead waiting for CTscan and then results. Lots of sleepless nights 🥲

Oh Lyn I'm really sorry. You were doing so well. After a few days you may feel better. I certainly do. There has to be something more out there for us. Why did Taxol work so well in the first part of our treatment and then stop working. I think my oncologist used the words 'run it's course' and gave me the option of carrying on until the scan. Why did he let me carry on if there was no hope of it working any more. Have you asked if you can carry on? II had number 15 yesterday. It was a really strange feeling not knowing if I was wasting my time. I've been ok since and eaten like a horse, hardly any sleep because of the steroids in chemo. amongst other things of course. Lots of tears and fears. Have you finished your 18? I was hoping to carry on with Taxol after a a short break had it worked. The oncologist said I could before it apparently stopped working of course. I've decided with a lot of help from the ladies on here that all is not lost. Don't try to hide your feelings. You need to talk. Cry if you want to - it's normal. Your CA is obviously much higher than mine which has never been above 225 when i was diagnosed almost 3 years ago. Before I started Taxol it was 110. It went down to 11 in 4 months then back up to 25 after 13. I've forgotten what yours was before you started Taxol. I'll try to look back. Please keep in touch. We all here to listen and comfort each other.

Love from Angela xx

Hello Angela - I have finished cycle 3 (minus last weeks infusion that I couldn’t get due to the weather) my scan is on Monday then I get the results the following Monday when I will be told if I can carry on or not, my Ca125 was 4000 when I started Taxol it dropped to 550 but this week has gone back up to 850 - I am hoping it is just a glitch and they allow me to finish the course and maybe increase my dose as I am only having 60% due to previous neuropathy. I feel full of anxiety which is churning up my insides - or is it the cancer!

I am glad you continued with your treatment, good luck with your CT scan - Lyn

Hi Lyn, seems very early to be having a scan after only 3 infusions but the oncologist knows more than we do of course. I haven't had a scan since September 2020. I don't like to leave it so long but I suppose it's because my earlier CA had dropped dramatically, like yours did. Looks like your oncologist is doing the same thing. Booking a scan for you because of the rise. So strange how there's such a vast difference in high and low numbers in CA markers yet the results will probably be the similar.. You cold be perfectly fine. If you go by percentage rise, yours is perhaps not as bad as it looks. I wish you all the best for Monday. Everything could be alright. It's early doors to be so anxious but we're all the same deep down. Anxiety is constantly with us. I hope you can relax a little over the next few days and maybe put the scan at the back of your mind until Monday at least. So easy to say-almost impossible to do.

Love from Angela xx

Hello Angela - my hospital always do a scan halfway through a treatment regime, guess to check its working, and then another one at the end of the regime.

I am trying to stay busy and not think about the worse case scenario. This is my 5th line of treatment and I am not sure there is much left in the arsenal for me, I don't want it to be the end just yet, I haven't got my bucket list completed - Thanks Covid!!

I tend to worry inwardly and have dreadful GERD so am back on Lansoprazole, it seems to only flare up when I am anxious. Going out soon for a nice long walk to clear my head and hope it strengthens my resolve. Have a good day. x

P.S - 3 infusions = 1 cycle - so I have had 9 of my 18 infusions.

Let’s pray that “Things can only get better” Still time for the Taxol to do it’s job. Love from Angela xx

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