BONIVA & CA125

mopar
mopar Member Posts: 1,972 Member
edited March 2014 in Ovarian Cancer #1
Seasons Greetings to all of my wonderful friends!

I received a copy of my December 5 CA125 report - it is 27! That is up (2 months earlier) from 10. You can be sure I was upset when I received the letter from my physician. But here's some thoughts I have had:

Since end of chemo July 2006, my readings have been anywhere from 8-13. I started a new exercise program and continued my healthy diet and emphasized a few other elements since that time. All labs were good. We lost our niece in October (extreme stress); I abandoned my exercise and good diet since then; put weight back on; had a CT scan October 28 - all clear. My doctor appointment was December 5 - usual pelvic+ exam was perfectly clear. He took the CA125 that night (midnight!) because they didn't renew my RX for the lab the 2 months before. So this test was taken in his office, after being up at 6am, going to work, then to his office, sitting there till midnight (that's normal), probably dehydrated a little, didn't eat well that day.

So, I've been thinking. I'm aware the CA125 can go up and down for a variety of reasons but this number is frightening. Maybe all the stress, lack of good diet, etc. influenced the test, especially since the CT was clear (not always definitive, I know). Maybe they test was wrong. But here's the biggest thought I had in the middle of the night - The doctor gave me Boniva to take. I took it on October 14 and it was horrible - I had SEVERE bone pain, joint pain, headache, chest pain, fever, on and on. I contacted the pharmicist, the doctor, and the pharmeceutical company. These symptoms lasted 10 days and it was as if I had taken chemo. Now I'm wondering if the Boniva spiked my CA125??? I have done some internet research and I'm finding other accounts of bad reactions, two of which are being related to the onset of cancer. If anyone has any info, I'd appreciate it. At this point my doctor just says to get a test in January. But I'm getting a little 'nervous' abou this. And the more I find out, the more I'm concerned that the Boniva really has done a job on me.

Your thoughts, please. Thank you all so much!

(((HUGS)))
Monika

Comments

  • curlee8661
    curlee8661 Member Posts: 56
    #2
    Hi Monika,
    First of all: HAPPY BIRTHDAY!!!
    It's really a shame that you have to spend this day worrying. I'm sorry to hear that you had such a bad reaction to Boniva. I don't have any experience with or knowledge regarding that drug, but I do hope that your suspicions are just plain wrong! The likelihood, I think, is much greater that the numbers jumping up a bit is of no consequence. You're probably right about your temporary laps in nutrition and exercise along with the added stress effecting your body slightly. The unusual circumstance surrounding your last testing may also be the culprit. As you know, both nutrition and stress can cause changes in your body. Now that you're back on track, the next blood test will probably have more favorable results.

    I've done a little Internet research as well in the past few days, and I came across a website (http://www.cancer-prevention.net/) which you may be familiar with already. It describes several cancer research theories and results that point to the underlying causes of cancer, and ways you can prevent or perhaps even "cure" it. There's discussion of nutrition as well as stress among other things. It's a lengthy read, but I think worth the time to learn (or remind ourselves) of how to help our body become or stay healthy.

    As I think you know, my own CA-125 numbers have jumped from 5.3 after the last chemo, to 15.7 right after my "second look" surgery 3 months later. Since the pathology report came back showing NO sign of cancer, I'm confident that this elevated number is meaningless, and not worth worrying over. From what you said, there's no reason to believe otherwise in your case either. So, as difficult as it is, please try not to worry! It will only cause you more stress which you don't need. I'm getting my blood test in a couple of days, so in about 10 days I'll know about (and will let you know) my results, wich will hopefully boost your confidence as well.

    ((Hugs))
    Marianna
  • floridajo
    floridajo Member Posts: 480
    #3
    Mopar,
    You could be right about alot of things, from the change in diet and excercise to the new medication. It sounds like it was inflammatory to you and we know any inflammation will cause an upwards number. Keep your self as positive as you can. You had a clear CT scan!! That is what my Onc goes by. I know it's hard to not freak out, but worrying will not change a thing. I will pray that your numbers go back down and your ct scan stays clear....enjoy your dance with NED...(((hugz)))..Joanne
  • mopar
    mopar Member Posts: 1,972 Member
    #4
    floridajo said:

    Mopar,
    You could be right about alot of things, from the change in diet and excercise to the new medication. It sounds like it was inflammatory to you and we know any inflammation will cause an upwards number. Keep your self as positive as you can. You had a clear CT scan!! That is what my Onc goes by. I know it's hard to not freak out, but worrying will not change a thing. I will pray that your numbers go back down and your ct scan stays clear....enjoy your dance with NED...(((hugz)))..Joanne

    Thank you Joanne, Marianne & MM! for your thoughts, prayers and helpful reminders. Joanne, I forgot all about the 'inflammatory' factor. I will get restested as soon as I can after the new year rings in. Then I will call to get the results, as opposed to waiting for a mail response.
    Luv and hugs to you all - I'll leave it in His loving hands!
    Monika
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #5
    Dear Monika, I am so sorry to hear about the added stress. The rise could be from anything but understand the worry. I am glad your doc is rechecking in January. Saying an extra prayer for peace and a lower CA125. Hugs N Prayers Bonnie
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #6
    Oh ya.... ♫ Happy Birthday ♫
  • mopar
    mopar Member Posts: 1,972 Member
    #7
    BonnieR said:

    Oh ya.... ♫ Happy Birthday ♫

    Thank you, Bonnie! All prayers welcome!
    (((HUGS)))
    Monika
  • bozeta
    bozeta Member Posts: 17
    #8
    Hi All, I wouldn't be concerned with the ca125 at 27 all dr.s use the number 35 as being normal in a ca 125 count . They also say plus or minus 3 in this normal range . So according to them a 125 count of 38 can actually be normal meaning no cancer. So just stay calm and don't be concerned unless it more than doubles. Plus all your other tests, ct, pelvic were clear so I'd say celebrate. I go on the 31st for my 125 test and see the doc on the 9th. On my last visit my count had gone from 16 to 26 with all tests normal. My 125 has never been lower than 16 hoovering around the thirties for a year and my dr. is very happy with it. So try not to worry.
  • collins
    collins Member Posts: 69
    #9
    Dear Monika

    My onc says anything below 35 on a ca125 is normal. I had my ca125 spike up to 18 because of a slightly infected tooth. The endocronology specialists here recommended only taking a shot of boniva in very light doses four times a year if necessary. A lot of the drugs for osteo they don't recommend for cancer patients. Hope all goes well with you and your counts will be down. hugs and prayers.
    eleen
  • mopar
    mopar Member Posts: 1,972 Member
    #10
    collins said:

    Dear Monika

    My onc says anything below 35 on a ca125 is normal. I had my ca125 spike up to 18 because of a slightly infected tooth. The endocronology specialists here recommended only taking a shot of boniva in very light doses four times a year if necessary. A lot of the drugs for osteo they don't recommend for cancer patients. Hope all goes well with you and your counts will be down. hugs and prayers.
    eleen

    Thank you, Bozeta and Eleen for the encouraging words. Why no Boniva for cancer patients, Eleen? Just curious. Wonder if my experience could be the reason why.

    I'm not panicking (too much, anyway!) just yet with the numbers. But the thing is my CA125 has always been the most indicative of a problem, even when nothing has shown up on CT or exam.

    Nonetheless, I'm feeling a lot better hearing from all of you these last couple of days. God bless you all!

    Monika
  • saundra
    saundra Member Posts: 1,370 Member
    #11
    My oncologist warned me last visit that the CA125 might go up from my low of 5 and that I should not panic as that happens sometime. Glad to see others do from inflamation and such. I will stay away from Boniva, I think. Keep us posted. Saundra
  • groundeffect
    groundeffect Member Posts: 639 Member
    #12
    Hi Monika, and Happy Birthday!

    I wouldn't be surprised if the Boniva hasn't caused a jump. Are you on the 0-20 CA-125 scale, or 0-35? I've suspected that my CA-125 has never been particularly low because I've had a very slow-to-go tooth root problem for years now. It's hard to explain, but the tooth is very important, next to impossible to work on, and it's monitored by an endodontist - and take it from me, a dentist will just give you a blank look if you start talkin' CA-125 to them!

    I wish you the best with your levels. Mine have been up since I had my test before my five year anniversary check-up (in early Sept.). My CA-125 had hovered at about 17, and now it's been in the 40's for a few months. I feel fine and have had a useless CT scan, so until I don't feel good - I'm not going to worry! I'm just a little put out that I have to go in for testing once a month, and see the doc every three months now - I thought I was going to be able to go to yearly checkups after that five-year mark! The lab "we" use has the test that uses the 0-20 scale.
  • mopar
    mopar Member Posts: 1,972 Member
    #13
    groundeffect said:

    Hi Monika, and Happy Birthday!

    I wouldn't be surprised if the Boniva hasn't caused a jump. Are you on the 0-20 CA-125 scale, or 0-35? I've suspected that my CA-125 has never been particularly low because I've had a very slow-to-go tooth root problem for years now. It's hard to explain, but the tooth is very important, next to impossible to work on, and it's monitored by an endodontist - and take it from me, a dentist will just give you a blank look if you start talkin' CA-125 to them!

    I wish you the best with your levels. Mine have been up since I had my test before my five year anniversary check-up (in early Sept.). My CA-125 had hovered at about 17, and now it's been in the 40's for a few months. I feel fine and have had a useless CT scan, so until I don't feel good - I'm not going to worry! I'm just a little put out that I have to go in for testing once a month, and see the doc every three months now - I thought I was going to be able to go to yearly checkups after that five-year mark! The lab "we" use has the test that uses the 0-20 scale.

    Thank you for the birthday wishes!
    The scale was changed on my tests from the 0-35 to 0-21. I asked the doctor why they did that and he said that's the lab's choice (??) and he really did't clarify which one he uses. Anyway, again the test has always been more indicative for me, because of the absence of symptoms, CT evidence, and exam findings. So, that is why I was really floored when I got the report. Nonetheless, I am taking everything everyone says into consideration and trying to let it ride until my next test. I will probably go next Thursday, and you can be sure I'll be calling the doc by the following Monday or Tuesday for results. I'm not going to wait to get it in the mail.

    Sorry you've had issues with your tooth. Tooth pain can be horrible, especially to have it going on for years. Are you on Boniva? There is definitely a connection between Boniva/Fosomax, etc. and dental problems, including the jaw. The PA at my doctor's office has a sister who was on Fosomax for years. She now has brittle bone disease. And she found this out while they were on a cruise together, she fell and broke her hip. She is a young woman. Anyway, I will not be taking anymore of these types of medications.

    Thank you so much for your comforting words. We'll just pray and hope for the best, for ALL of us, in 2008.

    Luv and hugs to you!
    Monika
  • dorion
    dorion Member Posts: 183
    #14
    I love you Mopar and I sure wish there was something I could say or do to make you feel better. You've been so supportive during my thing I had no idea Sweetheart that you are going through this. Unfortunately, because I'm so new to this I have no idea what any of this means, forgive the ignorance, I'm just learning as I go. but remember those Angels? They are surrounding you too. We will get through this, I'm with you all the way as you are with me, right? We're all a team here on the same side fighting the same cause. WE WILL WIN!!!!!!!!
    Hugs to you and lots of love always. Linda
  • mopar
    mopar Member Posts: 1,972 Member
    #15
    dorion said:

    I love you Mopar and I sure wish there was something I could say or do to make you feel better. You've been so supportive during my thing I had no idea Sweetheart that you are going through this. Unfortunately, because I'm so new to this I have no idea what any of this means, forgive the ignorance, I'm just learning as I go. but remember those Angels? They are surrounding you too. We will get through this, I'm with you all the way as you are with me, right? We're all a team here on the same side fighting the same cause. WE WILL WIN!!!!!!!!
    Hugs to you and lots of love always. Linda

    Thank you, Linda. You have no need to apologize. I'm doing just fine and you are right - WE WILL WIN! You are already an inspiration! Keep up the good fight!

    Luv ya!
    Monika

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