Another CA-125 anxiety post: Oh, you fiendish CA... - My Ovacome

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Another CA-125 anxiety post

Angela2932 profile image
Angela2932

Oh, you fiendish CA-125 tests! I know there's lots of posts about this, but I'm stewing about this issue as well. It's such an emotional battle; cognitively I know it's within normal limits, but that doesn't completely help the panic about it. My CA-125 just doubled from 9 last month to 18, this month. I'll see my oncologist (in person! Yeah!) on Tuesday. Its been 14 months since end of front-line chemo for me, I'm on 100 mg of Zejula, and am HRD-. My CA-125 does seem to bounce around; 13,11, 11, 12, 13, 13, 11, 23, 13, 15, 9, 18 all since the end of chemo. So 18 is scary to me, although it was 23 once (no clue why) and went down. Maybe allergies? Maybe because I have an inflammatory arthritis but cannot take Humira for it anymore because of OC? As fast as I can come up with reasons why it's ok, I come up with ominous statements of "it's the end." I was even feeling pretty confident about this last blood draw, and now I feel like I jinxed it by not being anxious. It's so hard to explain to family or friends (they want to reassure) how much CA-125 can haunt us. . . .

Thanks for listening, you wonderful ladies!

30 Replies

Hi Angela,

There is actually a disorder called CA125 neurosis, apparently.

I have a type of RA, but I am on a different drug for it. I can well understand why your concern about your numbers but CA125 is a non specific test for abdominal inflammation and one doubling doesn't mean your cancer is back.

It could be you've had a stomach upset or something like that. RA does affect CA125, so could it be that?

I just wish you all the best on Tuesday, when you will find out more. Please try to relax until then, and trust your body to heal itself. It's only 2 days away now, so give yourself a rest.

Vvxxx

Oh, I definitely have that neurosis now! My arthritis affects tendons and my gastrointestinal system (it’s weird). I’m suspecting my feet are having some inflammation. . . But neuropathy in my feet are masking some of that pain with the different feelings of neuropathy. . Of course, I would love for this to be the explanation, but the I worry I’m grasping at straws.

It definitely bounces around with GI inflammation. I know mine tripled when I had heat stroke and then grew by a factor of five when I had a surgical hernia repaired. It's now bouncing around in the hinterland of 25 - 35, but there is no recurrence - that's after 11 years.

XXX

Thank you so much! It's so wonderful to hear stories like yours! 11 years! Keep on going!

Thanks Victoria, really needed to hear this today!

Oy the marker. I have 3 small tumors. Marker never more than 9. Variables too numerous to count. Take a deep breath and wait for consult

I hope it nothing but here is my mums since the end of first line treatment. 13,11,10,15,18,17,16,17,18,19. We are also a little nervous but it can and does bounce around.

Angela2932 profile image
Angela2932 in reply to N-A-58

Thank you for sharing this. And to make it more challenging, I think two women could have exactly the same variations, and for one, it means nothing, for the other, a time for more treatment. I can't wait until there's more research on parp inhibitors so we can know exactly how much more hopeful we can be, now that that's part of the treatment for many of us.

N-A-58 profile image
N-A-58 in reply to Angela2932

I will point out and add that my mum had a clear scan in March.

Whole thing designed to send you bonkers! I’m one of those who never ask what it is, sometimes they tell me without me asking , head well and truly in sand.

Except suddenly , from no where I’ve received scan appointment! I’m now in overdrive, does this mean they’ve seen something or is it routine . I’m 15 months post chemo on Olaparib . Only had a telephone appointment every 3 months during this time . Had no information from hospital that this was happening, so I’m spending the w/e anxiously creating scenarios of doom ! so I understand what you’re going through, messaged cns , got out of office .

I’ve had vaccine , maybe that’s pushed it up, although I don’t even know that it’s up!!!!

Can’t tell daughter, she worries to death, husband more anxious than me.

Sorry to download

Help

Jennifer

Angela2932 profile image
Angela2932 in reply to Rankij11

Jennifer, thank you! You and I are in the exact same boat! It makes it tough to be around our loved ones and friends; I don’t want to worry them, and I don’t want to sound like a drama queen and be Pooh-poohed (is that a word? Reassured by people who don’t really know what they’re talking about). It feels lonely.

Rankij11 profile image
Rankij11 in reply to Angela2932

It’s very lonely and like a relentless alarm going off in your head! Even the golf is failing to distract me entirely this w/e🤪. But I think as yours (ca125)does swing , and you have an inflammatory problem , seriously could be the explanation. Good you’re feeling well and have appointment Tuesday, so you can download worries then . I shall keep some positive vibes going for you!!BW

Jennifer

Angela2932 profile image
Angela2932 in reply to Rankij11

Is your scan on Monday? And I, too, shall send lots of positive vibes your way! Keep me posted on what you find out, and hopefully it'll be good news.

Rankij11 profile image
Rankij11 in reply to Angela2932

Thank you , and also for the chat , definitely good for the spirits! It’s on 22 and I will ! Take care

Jennifer

Rosiemd profile image
Rosiemd in reply to Rankij11

Hi Jennifer, I have been on olaparib for 14 months. I have bloods taken monthly followed by a telephone call from my oncologist the following day. I have a scan every six months. So far all good. The best of luck to you but I wouldn't worry too much.

Rankij11 profile image
Rankij11 in reply to Rosiemd

Oh thankyou , that’s really kind.It’s strange how protocols are so different!

May the Olaparib keep working for us both

Jennifer

Umm, I'm not sure of the exact protocol, but I think it's routine to have a scan after treatment. Certainly where I go, you do, and even after so many years in remission I still get very carefully examined and then every so often a scan to check.

I had one last year. The thing that really helped me was getting to know my own body, learning about it, and then a long slow struggle to escape the shadow of death and begin to believe that I could get through this.

Vvxxx

What various doctors do varies so much! Mine doesn't believe in scans after treatment. . . unless something seems to warrant it, like rising CA-125 (doubled, twice), or symptoms. Happily I have no symptoms, except constipation (my life-long friend) increased by Zejula, which was one of the few symptoms I had before diagnosis. If the next CA-125 rises, I'm going to ask for a scan. My doctor's philosophy is that the research does not show quicker treatment results in less progression or outcome, just less quality of life.

Well, mine takes the opposite view. He believes in active investigation ASAP and treatment ASAP after that. Thing is, he has quick access to a PET scanner and can use that if physical examination and blood test findings suggest a recurrence might be happening.

It's so confusing. There are so many studies here in the UK, and many many more abroad, and a few of them contradict each other. What he does is encourage you to hope. He's old, and he now sees his 30+ years survivors, one sent to him as a hopeless case in the late 1980s. He's said he's had patients who have had as many as 90 cycles of chemo over the years, and they are still alive and well.

Hi Angela I know what you mean..it can drive you a little mad! I think the fact you have inflammatory arthritis (as I do) and can’t have your treatment is significant. My ca125 varies a lot... it was 250 in the months before my recurrence but it was supposed to be stable because it wasn’t rising or falling.

I am trying to persuade myself that the ca125 is only half the story and to rely more on scan results. I think we are in a unique position having to factor in both diseases xx

vipervictoria profile image
vipervictoria in reply to Lyndy

I think that's a good idea. Also, getting to know your own body, and working out if anything unusual is going on, especially in your abdomen, eating habits, poo-ing habits, etc.

Thanks Lyndy! I may have to tattoo "the ca125 is only half the story and to rely more on scan results. I think we are in a unique position having to factor in both diseases" on my arm, but that might cause my CA-125 to rise too!

Does anyone think that allergies to pollens affects CA-125?

I’ve heard that even having the covid vaccine can raise your CA125 as it causes mild inflammation initially. So can allergies and inflammation can be in a pimple! So I think there has to be definite pattern if steep rising before anyone believes it to be a matter requiring any intervention. Hope you soon feel relaxed again,

Alex x

I think that might be true. I had the vaccination a few weeks ago, and my stomach was slightly upset. Vvx

Please try not to worry anything under 30 is normal my was in the thousands at one time mine seems to go from 9 to 15 its presently at 10 so try and talk to your nurse to reassure you.But your not alone we all worry about scans & blood tests. Stay well & keep positive sending love & hugs to you all SheilaFxxx

Hi Angela,

I think I may be in the same boat as you; my CA125 has been steady, at 6 and even went down to 5 since surgery and chemo in 2019. But now, for the first time, it has shot up to 25 within two months.

I'm under rheumatology at the moment, although I don't seem to see them very much, not my preference. They initially said that I have osteoarthritis that seems to have been triggered by having Avastin treatment, as thats when my shoulders started to freeze and my achilles started to grow a big bump on it. I now suffer badly with inflammation, arthritis and tendonitis throughout my whole body. My tendons in my fingers are always painful and stiff, the same with my achilles. I have joint pain in ALL of my joints and the ligaments/tendons in my knees feel unstable. My wrists often feel sprained. My achilles in particular are really sore and tight, and I hobble about a lot of the time.

I was given Naproxen to ease the inflammation but it played havoc with my stomach and gave me horrid frothy acid reflux and a constant lump in my throat. I then tried Etoricoxib for a number of months but that didn't do anything and again I started have stomach issues. I had to stop taking any meds for a while as i was getting hives, stomach cramps etc. Now that things have calmed down i'm back to taking Etoricoxib, although, i'm aware that GP's don't really like to prescribe it because it causes heart disease... but I don't think i have any other choice at the moment as I haven't been advised about anything else that might help.

At this point, I have no idea what has caused my CA125 to jump from 6 to 25, but i'm really hoping that it's inflammation. My neighbour who also has OC (diagnosed 19 years ago) and suffers with Arthritis, is very convinced it is inflammation. I spoke with her and told her I was getting a lot of pain in my torso (which is new to me since surgery), at my sides and round the front; shooting pains, sharp stabbing pains. She says she's sure it's inflammation and that it can be very painful (which it is)- so I'm trying to stay calm. I see my oncologist on 15th April and by then they should have my recent CT scan results.

So let's both hope that our raised CA125 is indeed inflammation. Tell me Angela; What meds have you been on, are on, that help with your arthritis? I'm desperate to find something that eases my arthritis.

Best wishes

Lisa

I was in a similar position at one stage. the stabbing cramping pain was due to a surgical hernia which was then repaired. After that my CA125 skyrocketed and then settled. I was then diagnosed with fibromyalgia, which makes my CA125 wobble around a bit. FM is a type of rheumatoid arthritis that is mainly in the nervous system but when it is triggered it causes inflammation in the abdomen. It's OK at the moment, and I am cancer free.On we go..

VVxxx

Hi Lisa,We definitely seem to be in the same boat! Was your arthritis diagnosed recently? Mine was diagnosed about 15 years ago, although I'd had symptoms for about 35 years. Rheumatology is a "fuzzy" field, and they keep renaming things: mine has been called undifferentiated seronegative arthropathy, and/or enteropathic arthritis (I can get gastrointestinal symptoms with it), or undifferentiated spondyloathropathy, or inflammatory arthritis, and these days it's listed in my medical charts as rheumatoid arthritis (which it most definitely is not!) When it was finally diagnosed, I was on various NSAIDS, and eventually celebrex, which I suspect is what your medication may be. It's an NSAID that is more protective of your stomach, and I'm thinking about asking for a return to that, or "dabbling" on my own with over-the-counter NSAIDS.

I need to go back to labs that my rheumatologist usually does, because I know there's a few that pick up on inflammation (and I'm hoping that were I to have that tested now, it would show some elevation.) The medications that worked the best for me have been first Humira, and then when Medicare wouldn't pay much for it, Remicade. Unfortunately, though those were wonderful for me, my oncologist does not want me on those, or methotrexate. In the past, I've taken oral steroid medications, and then tapered down, to deal with flares in my hands. I've also had fluid drained off my knees.

I had to try and find ways to deal with flares on my own before I finally got correctly diagnosed. For ankle, Achilles, or plantar fasciitis, I found that using various kinds of athletic tape to add support would give me brief help. Surprisingly, ice was very helpful! I never thought I'd want to soak my feet in icy cold water, but it helped! I used to try to get back massages in the past to relieve the back pain, but gave up when the relief was so awesome but so temporary! And the massage therapists would say things like "what did you do to your back," which made me realize that this wasn't the run of the mill back problems. I did come upon something called "trigger point therapy", which has you apply pressure briefly to any knots you mights identify. There's actually a cane you can order through Amazon, a Theracane, which helps to get to the spots and apply pressure. This was surprisingly helpful for the back (along my shoulder blade) and the spots in my shoulder. I just can't find them well on my own. Some day, as the pandemic subsides, I'm going to try and find a trigger point therapist.

There are message boards for spondyloathropathy that can be helpful for searching for ideas, and this might be helpful for you. These days, I suspect my feet have some inflammation going on, but I think the peripheral neuropathy is masking it!

I so hope that the inflammation I'm feeling in my shoulder right now, and my back, is the culprit behind the CA-125. I don't know why I keep "collecting" these relatively rare diseases! Thank you so much for telling me about your neighbor!

UPDATE after my oncology appointment: I saw the nurse practitioner on Tuesday, just before seeing my oncologist. They usually do the appointments this way, and there's often more time to ask the NP questions than the oncologist. I found the NP to be more reassuring, saying that she's "not worried", but that my next CA-125 will be "telling." (Oh, how we parse the words after an appointment!) She explained that we know my range is 9 to 23, and pointed out that once it dropped from 23 back down to 13. She said it's possible that the increase could be from my inflammatory arthritis. But, she said that the next reading will likely show whether I'm staying in my range, or moving rapidly upward. In the past, both she and the oncologist tended to talk to me about "cure"; neither used those words this time. The NP said that "we know that 85% of women with OC with stage 3C go on to a recurrence eventually." That shocked me! I think I've heard that before, but somehow, I REALLY heard it this time. She talked about how there are so many ways to deal with recurrences, but they'd like to keep me NED as long as possible.

I used this as a time to ask some of the things that have been on my mind, but never felt I could really ask, partly because it seemed to alarm them so much! I wanted to know how women die from ovarian cancer (STOP READING IF THIS IS TOO MUCH FOR YOU!!!) that what I could piece together is that women often experience intestinal blockages. She said yes, that for some, it goes quick, others much more slowly, and that their goal is to keep women as comfortable as possible, preferably at home and with hospice. She said as a person begins to die, there is much less interest in taking in nutrition, as the body begins to shut down.

She dissuaded me from my idea that keeping myself on the verge of diarrhea would help avoid intestinal blockages, and explained that ovarian cancer progressing is less like tumors, but more like "caking", like frosting coating the inside of the intestines, causing kinks, and thus blockages.

(IT'S SAFE TO READ AGAIN!)

But then she said "Don't plan on dying in the next five years," so then my "hope pendulum" swung back in the optimistic direction.

The law has changed in the US, and now medical facilities have to make test results immediately available to the patient, even if this means before the physician sees them! The NP said they could change this in the system if I didn't want to see the CA-125 before them, or if they thought it was in my best interests. I was vehement that I wanted to see them as soon as possible; even if I have an initial panic, I'm invested enough in myself to take care of myself and settle down, and be in a better position to ask questions when I see them.

My time with the oncologist was very brief, a quick review of the numbers and more of the physical exam, which she said was "great." But then she said if the next CA-125 went to 32, "we'd have to look further." 32! 32 is not double 18, but she said it would be an indicator that CA-125 is rising, and even without symptoms, that want to rule more out. I think this only means I would get scans, which has not been part of the ongoing monitoring, which I would certainly want at this point.

Today, I'm strangely peaceful with all those, feeling much more of the commitment to appreciate the moments of my life and to make what is left, count, no matter how long or short it might be.

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