CA125 DOWN FROM 27!

mopar
mopar Member Posts: 1,972 Member
edited March 2014 in Ovarian Cancer #1
Yes, my level actually came down from 27 on December 5 to 16 on January 3! I am so elated, I'm sure you all understand. I told my physician's PA to please let him know that I really believe it was related to the Boniva. She agreed, since I told her earlier about the horrible side affects I had, and that she say's Boniva can be highly inflammatory.

So, please, please, please, all of you out there, be sure you really think about taking any biophosphates (Boniva, Actonel, etc.). And if you are taking it, ask your doctor to consider that when getting your CA125 readings. I'm personally going to follow up with my doctor AND the pharmeceutical company on this. I've already given them permission to discuss this with my doctor, but now with these readings I'm more determined to pursue it.

Luv and Hugs to you all!
Monika

Comments

  • saundra
    saundra Member Posts: 1,370 Member
    #2
    Thanks, Monika for this valuable information. I took Fosamax for two years before being diagnosed and quit when my bone scans got back in the normal range (2 yrs. ago.) I was wondering if I should start again but now think i will just let it alone. Luv and hugs right back to you. Saundra
  • mopar
    mopar Member Posts: 1,972 Member
    #3
    Thank you, Saundra.

    And I hope I didn't put a scare in anyone. Just wanted to alert everyone to the possibility that these particular types of drugs could be a problem for some. Just something to watch out for.

    Monika
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • mopar
    mopar Member Posts: 1,972 Member
    #5
    unknown said:

    This comment has been removed by the Moderator

    Some of the other reasons it can fluctuate is infection (even something as simple as a cold), stress, diet, etc. etc. I don't think we know all the factors, but from my personal experience I can sometimes explain my fluctuations. Also, in my case, it's the consistent upward climb that my doctor looks for, which was the only thing that alerted us to something going on both the first time and my recurrance (CT didn't show anything). I know, it's a complex situation. Just wanted to say don't get too concerned if it goes up a little, and goes back down. Do you get checked monthly? bimonthly? It was monthly for me, now every other month. Although they say no need to fast, I like to take my test first thing in the morning (I just show up at the lab near me when it opens up), nothing to eat or drink before. The test that showed 27 happend to be taken in my doctor's office at midnight, after a long day (getting up at 6, going to work, fighting afternoon traffic to his office, and being in the waiting room for 8 hours!, had taken Boniva a few weeks before, we had also lost our niece a few weeks before also, lots of stress).
    Anyway, sending hugs your way. Hope all is well.
    Monika
  • floridajo
    floridajo Member Posts: 480
    #6
    Thanks for the info and I'm so glad that your numbers have come down!!! Who would have thought that something like Boniva could elevate a ca-125??? Good luck, I hope your numbers will be down lower next time and you'll get a break from chemo...(((hugz)))..Joanne
  • floridajo
    floridajo Member Posts: 480
    #7
    unknown said:

    This comment has been removed by the Moderator

    Nancy707,
    Isn't that ca-125 test a little monster?? We depend on it to tell us how we are doing, but it's so unreliable!!! This is probably why most onc's don't get up set when they see a rise in the number, they usually look for a trend of rising numbers before they get suspicous. For me it was 8 months of numbers doubling and tripling before another recurrence was confirmed!! Hope all is good today for you..(((hugz)))...Joanne
  • mopar
    mopar Member Posts: 1,972 Member
    #8
    floridajo said:

    Thanks for the info and I'm so glad that your numbers have come down!!! Who would have thought that something like Boniva could elevate a ca-125??? Good luck, I hope your numbers will be down lower next time and you'll get a break from chemo...(((hugz)))..Joanne

    Thank you, Joanne!
    (((HUGS)))
    Monika
  • curlee8661
    curlee8661 Member Posts: 56
    #9
    Hi Monika,
    Well it's good news for the both of us! What a relief! I called about my CA-125 results on Friday, but didn't belive the numbers since it was exactly the same as the one before the last one: 5.3. The last one was at 15.7 a month ago, and 5.3 two months before that. Like you say they look for a trend, so they ordered another one a month after the spike. As we know, many things can cause the numbers to go up and down, but in my case I suspect lab error, since it's the exact number as before the spike, down to the decimal. What are the odds of that happening? When I finally got to see my Gyn/Onc yesterday, he confirmed the current number being 5.3 and said that these numbers can fluctuate, but in my case it's likely a lab screw up. I know the lab guys are human and capable of making mistakes like the rest of us, but I hope they don't do that again!

    Congrats!
    Marianna
  • mopar
    mopar Member Posts: 1,972 Member
    #10
    curlee8661 said:

    Hi Monika,
    Well it's good news for the both of us! What a relief! I called about my CA-125 results on Friday, but didn't belive the numbers since it was exactly the same as the one before the last one: 5.3. The last one was at 15.7 a month ago, and 5.3 two months before that. Like you say they look for a trend, so they ordered another one a month after the spike. As we know, many things can cause the numbers to go up and down, but in my case I suspect lab error, since it's the exact number as before the spike, down to the decimal. What are the odds of that happening? When I finally got to see my Gyn/Onc yesterday, he confirmed the current number being 5.3 and said that these numbers can fluctuate, but in my case it's likely a lab screw up. I know the lab guys are human and capable of making mistakes like the rest of us, but I hope they don't do that again!

    Congrats!
    Marianna

    Congrats, Marianna! Like Joanna said, that little 'monster' keeps us coming and going. I actually considered lab error as another possiblity on my reading, especially since I do not normally have it taken through that lab.

    5.7! I've never seen numbers like that! My lowest was 8, and for that I am ever-grateful. Hugs to you all!

    Monika
  • Unknown
    Unknown
    #11
    mopar said:

    Some of the other reasons it can fluctuate is infection (even something as simple as a cold), stress, diet, etc. etc. I don't think we know all the factors, but from my personal experience I can sometimes explain my fluctuations. Also, in my case, it's the consistent upward climb that my doctor looks for, which was the only thing that alerted us to something going on both the first time and my recurrance (CT didn't show anything). I know, it's a complex situation. Just wanted to say don't get too concerned if it goes up a little, and goes back down. Do you get checked monthly? bimonthly? It was monthly for me, now every other month. Although they say no need to fast, I like to take my test first thing in the morning (I just show up at the lab near me when it opens up), nothing to eat or drink before. The test that showed 27 happend to be taken in my doctor's office at midnight, after a long day (getting up at 6, going to work, fighting afternoon traffic to his office, and being in the waiting room for 8 hours!, had taken Boniva a few weeks before, we had also lost our niece a few weeks before also, lots of stress).
    Anyway, sending hugs your way. Hope all is well.
    Monika

    This comment has been removed by the Moderator
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #12
    Monika, I am sooooo glad to hear it was the Boniva. Hugs Bonnie

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