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Ca125 up a bit more

zsazsa1
Posts: 553
Joined: Oct 2018

I was in for Herceptin yesterday.  They repeated my Ca125, and it's crept up a bit more.  It was 36, I think, at the time of diagnosis.  Of course it rose after surgery, but it slowly drifted back down.  I think that the lowest it got to, was just under 10 a few months ago.  Then 11. something.  Then 13.something, and I told myself it was because of a liver biopsy I'd had two weeks beforehand, that had caused a blood clot.  Yesterday, it was up a tad more, 15.something.  The other thing is that I've had a bad, metallic taste in my mouth for the past few weeks, for no discernible cause.  Otherwise, I'm pretty much okay, even with my enlarged spleen.

I'm very worried.  I know that with UPSC/clear cell, there is a significant chance of recurrence.  But I had finally started to relax, and get comfortable with the fact that maybe I had beaten this.  My kids are relatively young, and one is sick, and all three still really need me.  I've asked for a follow up appt with the local gyn-onc, and maybe I'll go back to see the specialist at Yale.  I'm trying to push this away, and just live my day to day life, but it's hard, knowing that a creeping up Ca125 probably is a foreshadowing of a recurrence.

Has anyone had their Ca125 creep up like this, and then go back down?

MAbound
Posts: 1105
Joined: Jun 2016

ZzaZza, I'm so sorry to hear the fear in your post. 15 isn't much, but I get that the persistant drift upward is going to get to you. Do you have plans for your kids should the worst happen? I'm staying positive here thinking you won't need them, but if you did I'm wondering if that wouldn't put you at ease so you can live your life in the moment easier? It's enough of a burden to contemplate a shorter life than expected without having to worry about dependent children at the same time. Sending ((Hugs))

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

All this uncertainty.   We all are with you waiting and praying.  The CA 125 is still in the normal range. You have done everything you can.  Hugs to you.  I bet your kids are wonderful.  

zsazsa1
Posts: 553
Joined: Oct 2018

My husband is wonderful, both as a husband, and as a father.  I am seeing the specialist at Yale on Tuesday.  My local medical gyn onc isn't very concerned, but from what I've read, steady upward creep of ca125 iin the normal range is often associated with recurrence.  I'm thinking PET/CT to see if it can be pinpointed where the recurrence is.  I'd be thrilled if I could play whack a mole for a few years.

I have a 23 yr old who is supporting himself quite well by working in a bank full time, but not yet nearly done with college - hasn't even finished his associates degree.  He's a bright, ADHD type who hates going to school.  I've been pushing/pulling him through college, a couple of courses a semester at night.  It's like pulling teeth.  He is still dependent upon us for emotional support, advice, guidance, and less and less frequent financial rescues.  I know that if I'm gone, he'll never finish college, but he'll probably be okay.  Then I have a 20 yr old with high functioning autism, very bright, who unfortunately has some undiagnosable chronic disease for the past two and a half years.  It has features like Whipple disease, but the test for it is negative.  Despite this, her doctor and I are trying her on antibiotics.  She's in pain a lot of the time, but is very stoic about it.  She had enough credits to be done with college after 2 yrs, but we keep her there because with autism, she needs the time to mature, socio-emotionally.  She's the one I worry about the most, because she really needs me, medically, in helping to find a diagnosis and treatment.  The third is 16, still at home, easygoing, steady, talented musician, high achieving.  He's a lot like his father.  They'll be okay together, but I wish that if this had to happen, it would have happened after he'd left for college.  He's already had to watch me go through chemo, and I don't want him to have to watch me go through recurrence, treatment, side effects, and decline and demise.  No teenage boy should have to live through that.  If he were already away at college, it would be bad, but not as bad as watching it happen, day by day.

Husband, I'm not worried about.  He is such a nice man, he will have NO trouble finding a good person in the future, if I'm not here.  I just feel bad that he has to go through this with me, if this is where the journey is taking us.

I seem to remember having seen people posting about slight bumps up in Ca125, that then resolved, but I also remember people having slight bumps up, followed by really big jumps, and then being found to have pretty advanced recurrence.  The one thing I do know is that the clinician researcher at Yale is probably the best in the area to be seen by.  I've just got to have faith that he'll do his best for me.

I'm very grateful to have this group where I can post my fears.  I miss those who've recently gone on - there were some giants that we have recently lost.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Your husband sounds like a great support for you, but as someone who was a special needs teacher for years, I also know how your heart hurts as you want to be the rock your children need. If it helps, my doctor has just stopped even thinking about my ca125 as it never moves. She also said re my genetic testing I should not even have cancer! So, I have stopped worrying and letting the scans or exams tell the story. This cancer is a strange beast and sometimes we never seem to be able to truly relax. Glad you have us for support. Wishing you the best news.

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

We are all a statistic of one.   I remember Lady Mox.  We were all diagnosed at the same time.  She was so happy when her CA 125 went down and then found out her tumor had doubled.   Sometimes it is accurate and sometimes it isn't.  It feels almost like inviting trouble to discount the CA 125.   But I do.   I don't have it done for this reason.  I hope you have a PET scan because it shows up small problems, and you will worry about it if you don't.   I have a daughter with ADHD.  She ws like your son until about age 30 and a light seemed to go on.  It sounds like you have a wonderful family.  Don't discount your continued well being.  You can predict the toss of a coin correctly 50% of the time.  And it is random.  I don't know the rate of CA 125's being correct, but I bet it's around 50%.   

zsazsa1
Posts: 553
Joined: Oct 2018

I hope you're right.  i remember LadyMox too.  That beautiful face, and gorgeous red hair, and then she went so fast.  She had endometrioid.  Mine is UPSC/clear cell, for which I think Ca 125 is a better marker.  but I'll try to keep it in mind.  I'm pretty sure there's a PET/CT in store for me very soon.  

Molly110
Posts: 186
Joined: Oct 2019

My ex, a physician, always reminded me that we are all an N of one, and that has been weirdly true for me since my UPSC diagnosis. I've had so many chemo side effects that my amazing gyn/onc calls "rare" that my sister tells me I should buy a lottery ticket. My regular gyn was sure that I didn't have cancer because my CA125 was really low, and testing for that is not included in my pre/post chemo blood tests, perhaps because for me it hadn't been a marker? As a physician yourself, you're in a position to know every worst possibility, which must make it tough to be calm or optimistic. The most important thing I've learned from the women in this group is that people who are not supposed to get better quite often do. I hope your Yale consult and scan are good news!

MAbound
Posts: 1105
Joined: Jun 2016

Thank you for sharing about your family. It helps to understand where your some of your stress is coming from. You have a lot to be proud about for what you have accomplished raising your children. My sister is kind of in a similar situation with her family as you and dealing with some serious health issues resulting from all of the years of stress from it, yet she still puts her concerns for her family first. All I can do since we live very far apart is be a good listener for her when she needs to unload her troubles. It can really bring me down, but it's cathartic and needed for her. I wish I could lighten your worries, too, but I think finding out what's going on with your CA-125 will do a better job of that than anything. You've been very vigilant and pro-active for yourself, so hopefully if something is brewing, you'll have caught it very, very quickly.

barnyardgal
Posts: 273
Joined: Oct 2017

I hope and pray that all is ok. And if it is a recurrence you've caught it early. 

zsazsa1
Posts: 553
Joined: Oct 2018

So I met with the Yale specialist today.  He is taking my concerns seriously, is ordering a PET/CT.  But he also offered reassurance that despite the steady creep upwards of the Ca125, it is still low, and this could be due to any other type of inflammation, likely is NOT a recurrence.

He also is sending me to the GI Onc guy there, because of the precancerous pancreatic cysts (what joy).

And I still have to decide on what to do about the darn enlarged spleen.  Yet, I was very relieved when I left Yale.   I'll be even more relieved if the PET/CT is negative.  Having it done next week.

Molly110
Posts: 186
Joined: Oct 2019

What wonderful news about the CA 125 issue! Congratulations.

I'm hoping the remaining issues resolve as successfully.

MAbound
Posts: 1105
Joined: Jun 2016

You'll probably still have that cloud, but anything that helps you to sleep better and live in the moment is a good thing. It changes nothing to be in a constant state of angst and it is such a waste of precious time. Be sure to keep doing things that make you happy even in the midst of all you have on your plate. Consider it a prescription for getting through it all.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Glad to hear this.  Thorough is always best!  And I know my gyn/onc never even tested my CA 125 until I asked for it.  I had it tested twice, though she said it's not a reliable marker for me.  It was 14 one time and 15 another.  I haven't asked for it again since my clear PET scan in October.  Wish you the very, very best!  I believe you're going to be fine!

barnyardgal
Posts: 273
Joined: Oct 2017

Good news! 

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

Again.  Doing everything you can do.  I'm glad it's a PET.  You can have confidence in it.  Keep us up to date on your results.  We are praying for you!  It's so nice to find a doctor who listens.

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Tamlen
Posts: 294
Joined: Jan 2018

I'm glad you're getting a scan and that it's a PET. Without that information, you're really left in the cold, wondering and worrying. Good work advocating for yourself and good on that doc for being responsive to your concerns.

HelenAmerica
Posts: 2
Joined: Apr 2019

Good luck with the PET! I was diagnosed 2 years ago this week. Went through surgery; just a polyp so they said no chemotherapy, even though it was UPSC, but I was on a 3 month "watch".

My CA125 was 4.4 in December of 2018. In March of 2019 it jumped to 23.6.  The Nurse Practioner said "Oh, it is still normal."

Except, I had read the reports that anyone with UPSC who has had a jump of 10-15, is a concern. (even if it is normal) Went through, CT scan, PET, and biopsy.

Sure enough UPSC was back.  Went through Chemotherapy last summer and CA125 is now at a 6. Needless to say, my NEW oncologist and I are monitoring it.

BE YOUR OWN ADVOCATE! 

zsazsa1
Posts: 553
Joined: Oct 2018

Thanks, Helen.  I already went through the chemo once, and radiation.  It's only up from a low of 9.something to 16.something, over about 9 months, I think, but it's been a steady climb.  It's funny, the local oncologists kept saying that my insurance would NEVER approve a PET/CT - and the Yale oncologist just assumed they'd approve it, which they did, without any trouble.

I hope for your sake that the chemo got the last of it, and that it will be only smooth sailing for you from now on.

HelenAmerica
Posts: 2
Joined: Apr 2019

You too!! 

zsazsa1
Posts: 553
Joined: Oct 2018

I had herceptin yesterday.  They did a Ca-125.  It was stable at 15.something, right where it had been three weeks ago with last herceptin.  Reassuring.

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BluebirdOne
Posts: 375
Joined: Jul 2018

(there is no like button)

zsazsa1
Posts: 553
Joined: Oct 2018

I asked them to add a CA125 on to the bloodwork before rituximab on Tuesday.  They sent it to Quest (had a lot of fun tracking that down), but I was finally able to get them to email me the result.  13!  Woohoo!  I don't know if it's different labs, but the last one was 16 I believe, so the drop to 13 is reassuring.  Of course, we all know that it's an imperfect marker, but mine was 36 at diagnosis, so I'm taking this as a good sign.

Stay isolated, and be well.  This pandemic will pass, hopefully soon.

Denise66
Posts: 74
Joined: Aug 2018

So happy for you!

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