Rising CA-125

Missjessicalyn

Hi everyone,

I'm just three weeks out of my first line of chemo (6 rounds of Carbo/Taxol) and had my first blood test yesterday. My CA-125 went from 10 to 13. It had been declining steadily while on chemo (196 to 103 to 43 to 14, 10, 9, etc.) 8.6 was the lowest, and it's fluctuated a bit between 8 and 10 (up to 11 when I was put on hold for three weeks due to low counts). I know I shouldn't be, but I'm freaking out over the 3 point rise. I'm afraid it's just going to keep climbing. My diagnosis is Stage II carcinosarcoma, which can progress very quickly. Has anyone had this experience, where CA-125 levels fluctuated a bit, or went up right after chemo was finished? Just looking for some reassurance!

Thanks,

Jessica

 

mopar

MOST DEFINITELY

I know we live and breathe by those numbers, Jessica.  And they are a part of the diagnosis process.  But the number goes up and down for a variety of reasons.  I wouldn't worry about it.  Give your body time to adjust after your chemo.  Even an infection can make it go up.  I had a situation where I had taken Boniva, only one time and never will again, and it went from 9 to 48!  Talk about pushing the panic button!  About three weeks later it went right back down again.

Hope this helps.  Let us know how things are going for you in the days to come.  Prayers for peace and recovvery for you, Jessica.

Monika

 

NoTimeForCancer

Jessica, I agree with mopar.

Jessica, I agree with mopar.  Things can make this number go up - an infection for example, a cold - so try not to get too worried at this time.  Under 30 is considered normal.  I think all the women understand your anxiety.  I know I can't tell you when watching this number gets better.  I think we all get a little nervous when we have the blood test, scans, etc....

Hang in there. 

Carrot358

Hi Jessica,
For some reason I

Hi Jessica,

For some reason I didn't see your post when I was reading a bit ago.  I sure do understand the panic, even knowing that number is well within normal.  Hope you have some folks around who can let you feel those panicky feelings and move right on through back to enjoying your life.

Did you ask your MD about avastin?

I just learned of a day long workshop on integrative healthcare for those of us on this cancer trip. An hour workshop on mushrooms, diet, breathing and supplements are the ones I'm going to.  It's next weekend.  I'll let you know if I learn anything new.

Staying with you as we ride this roller coaster together.

Carrot

Carrot358

Carrot358 said:

Hi Jessica,
For some reason I

Hi Jessica,

For some reason I didn't see your post when I was reading a bit ago.  I sure do understand the panic, even knowing that number is well within normal.  Hope you have some folks around who can let you feel those panicky feelings and move right on through back to enjoying your life.

Did you ask your MD about avastin?

I just learned of a day long workshop on integrative healthcare for those of us on this cancer trip. An hour workshop on mushrooms, diet, breathing and supplements are the ones I'm going to.  It's next weekend.  I'll let you know if I learn anything new.

Staying with you as we ride this roller coaster together.

Carrot

Rising ca125

Hi Jessica,

I had my six week post chemo check yesterday.  CAT scan showed nothing and ca 125 was up to 15, well within normal.  I was declared "in remission" - has a nice ring, doesn't it?!

One thing I learned at the workshop I was at was presented by a former cardiologist who is now in primary care and prevention.  You can look this up on line, I don't know of one site to recommend.  She said that (Natrol) Melatonin 5 mg was good for those who have solid tumor cancer and she specified ovarian.  if you decide to take it, she said 5mg a night for a week, then up it by 5 mg for the next three weeks until you are at 20 mg.  stay at 20mg a night.

Hope things are going well for you!

Marilyn

 

Missjessicalyn

Carrot358 said:

Rising ca125

Hi Jessica,

I had my six week post chemo check yesterday.  CAT scan showed nothing and ca 125 was up to 15, well within normal.  I was declared "in remission" - has a nice ring, doesn't it?!

One thing I learned at the workshop I was at was presented by a former cardiologist who is now in primary care and prevention.  You can look this up on line, I don't know of one site to recommend.  She said that (Natrol) Melatonin 5 mg was good for those who have solid tumor cancer and she specified ovarian.  if you decide to take it, she said 5mg a night for a week, then up it by 5 mg for the next three weeks until you are at 20 mg.  stay at 20mg a night.

Hope things are going well for you!

Marilyn

 

Hi Marilyn,
I am so happy to

Hi Marilyn,

I am so happy to hear that you're in remission. What a relief! I met with my doctors after I had posted this and they were really insistent that a rise of three points was insignificant. It made me feel a little bit better, although I think it will ake some time before the anxiety subsides. This isn't an easy diagnosis to handle. I'm finding it a little bit difficult to transition back into "normal" life with the fear of recurrence hanging over me. It helps to have this forum and be able to talk with others going through the same thing!

I will look into the melatonin - I actually used to take 5mg melatonin to sleep, until they prescribed Ativan after this diagnosis. Perhaps I will try going back to the melatonin. Thank you for the info! I also started on a turmeric supplement, and I intend to start a mushroon one as well. Did you learn anything more about mushrooms at the conference?   

I hope you are well! Congratulations on your clean scan and CA125!

Jessica

 

 

Missjessicalyn

Thank you everyone! I met

Thank you everyone! I met with my doctors and I've been somewhat mollified by their reassurance that 3 points is insignificant. In fact, my oncologist told me that you could perform 10 tests on the same vial of blood and come up with 10 different CA125 levels, with a variation as great as 3 points. Idk if that's true, but it did make me feel a little bit better. My next test is in 2 months, so I guess I will wait until then to start worrying again!

LorettaMarshall

Missjessicalyn said:

Thank you everyone! I met

Thank you everyone! I met with my doctors and I've been somewhat mollified by their reassurance that 3 points is insignificant. In fact, my oncologist told me that you could perform 10 tests on the same vial of blood and come up with 10 different CA125 levels, with a variation as great as 3 points. Idk if that's true, but it did make me feel a little bit better. My next test is in 2 months, so I guess I will wait until then to start worrying again!

Jessica~Hope U Kick that CA-125 count down the road

Hi there Jessica:

Certainly agree with your doctors that a rise of 3 points in your CA-125 count isn’t enough to be “worried about.”  My count has risen from 10 in December to 157 three weeks ago.  I have a monthly consult with my oncologist and have a CA-125 count each month.  He and I have agreed that at this point, we are just going to “watch it.”  Yes, I know it’s way above the normal range, but none of us “advanced cancer patients are going to maintain a normal range CA-125.  I get periodic CT Scans when something seems to be going awry.  And I would go along with your own advice to yourself, put off worrying about it for a couple of months.

When I attempt to contemplate what’s next, my imagination can run wild.  So I’m better off just dealing with today’s problems and don’t we all have them?   

When I take a look at other poor folks at the Oncology lab, I say, “I’ll just keep my own set of problems.”  My cousin has Alzheimers and doesn’t know where she’s at!  So the more I look around me, and all the problems that beset others that I know and love,  I’m more appreciative and content with  my own set of circumstances. At least I can still walk on my own power, and still have an appetite, still have “body fat!” Sure it’s hard to tell where the boobs end and the belly begins, but a belt helps.  But when I talked with my surgeon he said, “I like my cancer patients fat!”  And yes, I’m still in my right mind. 

Now they say that a woman who will tell her age will tell you everything, so let me tell you I’m 77 years and 2 months old, am 5 ft. 1”, and weigh 163 and a half pounds, and wear a 7 ½ size medium shoe.  Haven’t measured my waist lately, since I can hardly find it since my Cytoreductive surgery sorta’ shifted things around.  Since my “fat apron” has been removed, all the parts just sorta’ meld together!  But I’m alive today.  My husband’s alive 14 years after Esophageal Cancer Stage III when most won’t ever live 5 years after diagnosis.  It’s a deadly cancer.  April is Esophageal Cancer Awareness Month here in Virginia.  And so I feel blessed. 

I bet you’ve got a lot of things going for you too Jessica. Each time I wander off the range, God reminds me to get back to where I am in the real world.  I’m cooking a big meal today for my middle son who is 52!  I’m making all his favorites.  It’ll be homemade rolls, macaroni and cheese, as well as mashed potatoes and green beans.  I told him I’m not baking a cake today since I don’t want to risk setting the kitchen on fire from all the candles, so I just made some blonde brownies 

And I get hugs every day from my grandchildren, and they tell me how much they love me.  And in reality, I’m more concerned about their future than my own.  They’ve got a tough world to grow up, and I’ve already lived a full life even if the Lord took me home today.  When I concentrate on the things I do have going for me, it pushes the “worry woman” in me onto the back burner.  That’s where everything belongs that is beyond my control anyway.  None of us put cancer at the top of our “wish list”, but now that it’s shoved its way to the top, I refuse to let it crowd out all the things I still have going for me.  So in a sense once you’ve had cancer, “King of the Hill” is a game that we will play every day.  Or should I say, “Queen of the Hill?  Whose gonna’ be on top?  It’s a daily challenge.  So kick the CA-125 off the hill today.  (Do friends call you Jesse?)   I crown you “Queen for a Day!”  Remembering that “Life isn’t about waiting for the storm to pass—it’s about learning how to dance in the rain!

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV  

 

Carrot358

Missjessicalyn said:

Hi Marilyn,
I am so happy to

Hi Marilyn,

I am so happy to hear that you're in remission. What a relief! I met with my doctors after I had posted this and they were really insistent that a rise of three points was insignificant. It made me feel a little bit better, although I think it will ake some time before the anxiety subsides. This isn't an easy diagnosis to handle. I'm finding it a little bit difficult to transition back into "normal" life with the fear of recurrence hanging over me. It helps to have this forum and be able to talk with others going through the same thing!

I will look into the melatonin - I actually used to take 5mg melatonin to sleep, until they prescribed Ativan after this diagnosis. Perhaps I will try going back to the melatonin. Thank you for the info! I also started on a turmeric supplement, and I intend to start a mushroon one as well. Did you learn anything more about mushrooms at the conference?   

I hope you are well! Congratulations on your clean scan and CA125!

Jessica

 

 

Mushrooms

Hi Jessica,

Mushrooms were talked about in their own workshop, food workshops, supplement workshops and the "former" cardiologist also recommended them.  She had the exact brand that I use on her screen and you can get to know the man who put this combination together on a youtube presentation, Paul Stamets.  Host Defense mushrooms, MyCommunity comprehensive immune support is what I am taking?  You can google that too to find a way to order them.

This whole thing is a lot to adjust to.  Don't pressure yourself to feel "fine" too much.  Keep living your life and acknowledge when the next interesting feeling appears.  You will know the supports that work for you, let them in!  I'll look forward to hearing from you.

All of the best,

Marilyn - Carrot