CA-125 rise drastically

uju99
uju99 Member Posts: 13
edited March 2014 in Ovarian Cancer #1
Hello
I'm a victim of OVC
I was found - I have this beast last year Sep 2009

When I landed at EMR - over there I was disclosed I have this - OVC

Did - 1rounds of Carbo/Taxol
2 rounds of Abraxane with Taxol
Surgery - removed all overies, FT and UTS
last 2 rounds of Carbo/Taxol

Surgery was done on Jan 2010.
Last chemo was March 2010.

CA-125 was 17 when it was left.

My initial CA-125 was 7000 ( when I came to know I have this disease ) , during treatments it increased to 21000 ( twenty one thousand ) and at end it settled to 17.

I believe it was massive response to chemo

In May 2010, I went to my regular family physician and they recommened me to to Vitamin D level test. The test came as 17.

Doc gave me
Vitamin D 50,000 ICU - once a week and
Vitamin D3 1000 ICU - every day.

Ever since, I started taking this.....looks like CA-125 has risen drastically.....Now it is 400. It was 17 back in April 2010.

So, I'm lost / worried and devastated....has the monster return this FAST ? or this is some sort of False Positive CA-125 ?

Any suggestions / ideas / thoughts.....

Love you all.....

thanks

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    JUST A FEW THOUGHTS
    Just curious why D AND D-3?

    Well, Vitamin D is known to be anti-inflammatory, and has been shown to be helpful against all types of cancer and other diseases. It is a known fact that most diseases start with an inflammatory process. According to my experience, the CA125 can elevate for lots of reasons, inflammation being one of them. So, I'm not thinking that the D is causing this. Other factors are stress (and that's a big one!), infections elsewhere in the body such as a cold, UTI, etc.

    I take a variety of supplements, including D-3. If you can manage about 10 minutes of sunshine several times a week, that is helpful also. I think it's really about the whole picture, so it's difficult to say one way or the other. Quite frankly, I wouldn't worry about it at this point. My doctor watches for a consistent rise in the CA125 numbers, not so much the ups and downs. I remember how I panicked when I had taken Boniva. My usual CA125 was 8-10 at that time, and after taking Boniva it rose to 28! As soon as I stopped taking it it went back down. I told my doctor I will NEVER take it again. It is HIGHLY inflammatory. I was so sick and in so much pain, and that's with just one pill. It's a no-no for me.

    I hope this helps. Most importantly, don't worry too much. Wait till your next blood test and let us know how it goes.

    Sending hugs and prayers!
    Monika
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    gyn follow up
    How are you being followed by your GYN/onc? I would only be following a regimen approved by my oncologist/gyn.

    You've been off chemo 3 months? Have you had an end of treatment ct or pet/ct?

    Call your gyn onc, see wht they say.

    good luck!
  • uju99
    uju99 Member Posts: 13
    #4
    mopar said:

    JUST A FEW THOUGHTS
    Just curious why D AND D-3?

    Well, Vitamin D is known to be anti-inflammatory, and has been shown to be helpful against all types of cancer and other diseases. It is a known fact that most diseases start with an inflammatory process. According to my experience, the CA125 can elevate for lots of reasons, inflammation being one of them. So, I'm not thinking that the D is causing this. Other factors are stress (and that's a big one!), infections elsewhere in the body such as a cold, UTI, etc.

    I take a variety of supplements, including D-3. If you can manage about 10 minutes of sunshine several times a week, that is helpful also. I think it's really about the whole picture, so it's difficult to say one way or the other. Quite frankly, I wouldn't worry about it at this point. My doctor watches for a consistent rise in the CA125 numbers, not so much the ups and downs. I remember how I panicked when I had taken Boniva. My usual CA125 was 8-10 at that time, and after taking Boniva it rose to 28! As soon as I stopped taking it it went back down. I told my doctor I will NEVER take it again. It is HIGHLY inflammatory. I was so sick and in so much pain, and that's with just one pill. It's a no-no for me.

    I hope this helps. Most importantly, don't worry too much. Wait till your next blood test and let us know how it goes.

    Sending hugs and prayers!
    Monika

    Stress
    Stress
    yes, this is one of the major, major, major event happened at this time.

    I went to some very, very traumatic event few weeks ago - and was crying every now and then......what happned was : just few weeks ago.....I heard that my mother back home also caught by same disease , its just few weeks ago....they found it I was very, very much worried, was crying all the day......nights......

    That is one of the main traumatic event - that happened just before that blood draw - I would say - 2,3 weeks ago.......

    The last blood draw was in April 2010 - it was 17
    and this time June 18 2010 - it was 400....

    So, may be that stress factor contributated a lot.......

    That is why - The doctors at Duke wants to Repeat The Test.....

    healthwise I'm absolutely fine, I do exercise, walking , cooking ....all in all...

    BTW, my CT scan back in April 2010 is very, very , very clean - no spot......that was 4 months after the sugery back in Jan 2010.

    Only the issue - they have found is : they found - a thyroid cyst / mass - less than 1 cm at upper right neck......and doctors did 2 times ultra-sound and they confirmed it.....so, I know that Cyst is there......and jew few weeks ago - I noticed some pain in that area too.......

    could that also cause the Rise ?
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #5
    uju99 said:

    Stress
    Stress
    yes, this is one of the major, major, major event happened at this time.

    I went to some very, very traumatic event few weeks ago - and was crying every now and then......what happned was : just few weeks ago.....I heard that my mother back home also caught by same disease , its just few weeks ago....they found it I was very, very much worried, was crying all the day......nights......

    That is one of the main traumatic event - that happened just before that blood draw - I would say - 2,3 weeks ago.......

    The last blood draw was in April 2010 - it was 17
    and this time June 18 2010 - it was 400....

    So, may be that stress factor contributated a lot.......

    That is why - The doctors at Duke wants to Repeat The Test.....

    healthwise I'm absolutely fine, I do exercise, walking , cooking ....all in all...

    BTW, my CT scan back in April 2010 is very, very , very clean - no spot......that was 4 months after the sugery back in Jan 2010.

    Only the issue - they have found is : they found - a thyroid cyst / mass - less than 1 cm at upper right neck......and doctors did 2 times ultra-sound and they confirmed it.....so, I know that Cyst is there......and jew few weeks ago - I noticed some pain in that area too.......

    could that also cause the Rise ?

    I would guess that it's more
    I would guess that it's more likely the other way around - the chemo may have caused the cyst on your thyroid. Chemo is very hard on the thyroid gland, or so I have read.

    Unfortunately, OVCA can come back that quickly. The average recurrence, after first line chemo and surgery, is 6-12 months. That means half recur earlier and half later (or not at all).

    Don't panic. Most of us know going in that we will have to deal with a recurrence - or more than one. It's the nature of the beast. But many women have survived multiple recurrences and treatments. I know one who has never been in remission for more than 12 months, and that was only the one time, and she is still going strong 11 years after her diagnosis.

    If you are not seeing a gyn/onc specialist, you should be. That's number one. He/she will guide you thru your next treatment options. You may get carbo/taxol again, since it worked so well the first time. Or you might be a candidate for the new drug, Avastin.

    I was diagnosed the same month as you (Sept, 2009) and had surgery, followed by carbo and taxol. I completed my treatment in late Feb of 2010 and was NED (no evidence of disease) via a clean CT scan and CA 125 of 6. I am now doing a year of Taxol only maintenance (monthly) and my CA 125 has been holding at 6 and 7, but waiting for each one makes me a nervous wreck. I wish I could have it checked weekly.

    My next CA 125 is coming up on the 30th and I could very well be on here the next day, posting that it has jumped back up to 4000 - which is where it was before I had surgery. I pray every night that's not the case, but I hope that in my mind, I am prepared for the worst case scenario. That's what I hate most about OVCA...it breaks your heart. Most of us (over 80%) go NED after surgery and first line chemo and we rejoice, of course, and thank God and all the saints....then it comes back and just knocks the wind right out of our sails.

    The chemo might be the cause of my recent thyroid failing, or not. My regular doctor bumped my meds (Armor Thyroid) up to 60mg per day. You should see someone about your thyroid. It may have to be removed, but that's so small stuff, compared to what you have already been through.

    Because we have cancer, we tend to blame everything on it, or on the chemo, but the truth is, stuff goes wrong with people's bodies all the time and it has nothing to do with cancer. So keep going for those regular check-ups, ladies.

    Carlene
    I cannot control the wind, but I can adjust my sails.
  • mopar
    mopar Member Posts: 1,972 Member
    #6
    uju99 said:

    Stress
    Stress
    yes, this is one of the major, major, major event happened at this time.

    I went to some very, very traumatic event few weeks ago - and was crying every now and then......what happned was : just few weeks ago.....I heard that my mother back home also caught by same disease , its just few weeks ago....they found it I was very, very much worried, was crying all the day......nights......

    That is one of the main traumatic event - that happened just before that blood draw - I would say - 2,3 weeks ago.......

    The last blood draw was in April 2010 - it was 17
    and this time June 18 2010 - it was 400....

    So, may be that stress factor contributated a lot.......

    That is why - The doctors at Duke wants to Repeat The Test.....

    healthwise I'm absolutely fine, I do exercise, walking , cooking ....all in all...

    BTW, my CT scan back in April 2010 is very, very , very clean - no spot......that was 4 months after the sugery back in Jan 2010.

    Only the issue - they have found is : they found - a thyroid cyst / mass - less than 1 cm at upper right neck......and doctors did 2 times ultra-sound and they confirmed it.....so, I know that Cyst is there......and jew few weeks ago - I noticed some pain in that area too.......

    could that also cause the Rise ?

    HELLO AGAIN
    Sorry to hear about your mother. I can certainly understand your concern for her. Yes, it could have caused a rise in numbers. I'm glad you're getting a repeat on the test. That's really the only way to get an idea. I will also say that since my 2 rounds of chemo, and probably all the CT scans with triple contrast that I have had, I have major thyroid problems. I don't believe a cyst has ever been detected (not that I know of), but maybe that's also contributing to the numbers.

    Well, let us know what you find out. Till then. . .

    Hugs and Prayers,
    Monika

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