CA125 up again

jane65
jane65 Member Posts: 277
edited March 2014 in Ovarian Cancer #1
Hi Ladies,
Yesterday morning my oncologist called, my CA125 is up from 17.3 to 28. I know it's still withing normal range, but he's concerned because it's the 4th month it has gone up, and it's always been a good marker for me. I'll be seeing him Monday to discuss a new plan.

I haven't had chemo for a month, because my May CT scan was clear and I really wanted a break from chemo. I been on chemo for 2+ years straight, except for a 4 month break almost a year ago when I finished carbo/taxol.
Four months later the CT scan showed cancer relapsed in the lymph nodes again. My CA also began to rise monthly at that time. My next chemo was Topotecan which worked for the past 10 months, and gave me my clear scan.

In view of the new report out of England, and presented in Orlando Fla. at the annual meeting of the American Society of Clinical Oncology, found that women who started chemo early based on CA test results, did not live longer than women who waited until symptoms appeared.
Dr. Gordon Rustin said, "For the first time, women can be reassured that there's no benefit to early detection of relapse, from routine CA125 testing."

It was not a huge study and I don't know what to think, reports come out and are changed a few months later, just look at coffee! I trust my oncologist,and will discuss it with him on Monday.
Have a good weekend, something else to mull over, I guess.
Jane

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    HERE'S HOPING
    Jane:
    Here's hoping and praying that this upward movement is related to one or two of the many other factors that can cause it to go up. I can certainly understand your concern. I must admit that in my case that was really the only thing that indicated there was something going on. And as far as the studies, even with that nothing is written in stone. We are all so different. Granted, we need some baselines to go on and start with.

    Let us know what your oncologist says. I will be seeing mine this Wednesday for my 6-month. CT scan was clear except for a nodule on the lung. I will definitely be discussing that with him. And I've been extraordinarily tired lately, and gaining weight again. I know my thyroid is a big factor, but the doctor handling it just doesn't seem to address it very well, and I don't think it's at therpeutic level yet.

    Well, enough about me. My prayers will be that your oncologist will give you peace about this situation. Enjoy your Sunday, Jane. Sending big HUGS, too!

    Monika
  • jane65
    jane65 Member Posts: 277
    #3
    mopar said:

    HERE'S HOPING
    Jane:
    Here's hoping and praying that this upward movement is related to one or two of the many other factors that can cause it to go up. I can certainly understand your concern. I must admit that in my case that was really the only thing that indicated there was something going on. And as far as the studies, even with that nothing is written in stone. We are all so different. Granted, we need some baselines to go on and start with.

    Let us know what your oncologist says. I will be seeing mine this Wednesday for my 6-month. CT scan was clear except for a nodule on the lung. I will definitely be discussing that with him. And I've been extraordinarily tired lately, and gaining weight again. I know my thyroid is a big factor, but the doctor handling it just doesn't seem to address it very well, and I don't think it's at therpeutic level yet.

    Well, enough about me. My prayers will be that your oncologist will give you peace about this situation. Enjoy your Sunday, Jane. Sending big HUGS, too!

    Monika

    Monica
    Good morning Monica,
    Please don't ever say "enough about me", it's never enough when you have feelings or concerns about yourself to get out. That's what we're all here for, right? To care for and support each other.

    I also have a thyroid disease, I'm hypothyroid and you should insist that your doctor order the blood test which checks the levels of your thyroid.

    Mine was checked and my Synthroid was adjusted, then 2 months ago it was rechecked, and my med. was lowered again. It's so important to get that straight, my internist told me it can eventually affect the heart.
    Be proactive Girl and get that test done!

    Best of luck Wed. with your oncologist, by the way he can order the thyroid level tests, mine did.

    Are you off chemo now? I hope the CT scan shows the liver nodule has shrunk, or is at least stable.

    Have a good Sunday, and let us know how the visit with your Dr. goes, I'll do the same.
    Jane
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #4
    Up again
    Hi Jane, sorry to hear your ca125 is on the rise ~ praying for a break for you too.

    I found the study interesting but also know we are all unique and the ca125 means different things for different people. I know I shared this before but my ca125 can go down to 6 and that is with lots measurable tumor. It just tells us the cancer is staying still and the chemo is holding it at back. When it is moving upwards it means my cancer is getting moving, we do base treatment changes on a steady rise for me.

    Let us know what your onc says. Hugs ♥ Prayers Bonnie
  • jane65
    jane65 Member Posts: 277
    #5
    BonnieR said:

    Up again
    Hi Jane, sorry to hear your ca125 is on the rise ~ praying for a break for you too.

    I found the study interesting but also know we are all unique and the ca125 means different things for different people. I know I shared this before but my ca125 can go down to 6 and that is with lots measurable tumor. It just tells us the cancer is staying still and the chemo is holding it at back. When it is moving upwards it means my cancer is getting moving, we do base treatment changes on a steady rise for me.

    Let us know what your onc says. Hugs ♥ Prayers Bonnie

    Bonnie
    Thanks Bonnie,

    You're such a wise and caring lady, and I appreciate what you wrote.
    One person had said to me that choosing the right path is a "crap shoot", my oncologist said there are no right or wrong answers. Sometimes it feels like being blindfolded and spun around and told to pick the right door.

    No, I didn't know that about your CA being low with active disease going on. We ladies should repeat things we've said it the past, with so many of us writing, and new ladies joining us all the time, repeating things is a good thing to do.
    I think that my oncologist is concerned that even though the CT was clear, the slowly rising CA125 shows active disease, and since the lymph nodes are involved, we must consider that they may take the cancer to my organs.

    I'll let you and the other ladies know what he says tomorrow.
    Good health and a long life to you!
    Jane
  • mopar
    mopar Member Posts: 1,972 Member
    #6
    jane65 said:

    Monica
    Good morning Monica,
    Please don't ever say "enough about me", it's never enough when you have feelings or concerns about yourself to get out. That's what we're all here for, right? To care for and support each other.

    I also have a thyroid disease, I'm hypothyroid and you should insist that your doctor order the blood test which checks the levels of your thyroid.

    Mine was checked and my Synthroid was adjusted, then 2 months ago it was rechecked, and my med. was lowered again. It's so important to get that straight, my internist told me it can eventually affect the heart.
    Be proactive Girl and get that test done!

    Best of luck Wed. with your oncologist, by the way he can order the thyroid level tests, mine did.

    Are you off chemo now? I hope the CT scan shows the liver nodule has shrunk, or is at least stable.

    Have a good Sunday, and let us know how the visit with your Dr. goes, I'll do the same.
    Jane

    THANK YOU, JANE!
    Thanks for your personal words of encouragement!

    I am a very, very proactive person. I won't go into details as to what that all means to me me. But I just wanted to let you know that I have had all the tests done regarding my thyroid. The doctor I am seeing just doesn't seem to be aggressive enough with this dosage. Tests can be fickle, meaning even though your levels may be near what's considered 'normal', symptomology generally wins out over lab work. Lethargy, fatique, depression, low blow pressure, inability to think clearly, weight gain, inability to lose weight, etc. I'm sure you know all the symptoms. So, most often the adjustment of meds is determined by how well the symptoms are controlled. In the beginning, I felt a whole world better. But it seems that once my body adjusted, I noticed the onset again of certain issues. So he raised it 'a little'. These past 3 weeks I have gone downhill again. I am thinking of asking to be switched to Synthroid. The Armour Thyroid I take is a natural substance, which is usually preferred. However, because of that it can have fluctuating efficiency. The synthetic may be more reliable. Oh well, I'm going to look into it. I have also started taking kelp. I'm going to give it a few weeks to see if it helps.

    Well, today is your day. We'll be waiting for some good news. Catch up to you later!

    Hugs & Prayers!
    Monika
  • kayandok
    kayandok Member Posts: 1,202 Member
    #7
    New plan
    Jane, sorry to hear about your rise in CA125, but It sounds like your doc is very proactive and on top of your situation. Looking forward to hearing what he has to say tomorrow and what the new plan is for you.

    I know I will be discussing my next steps with my doc, and having to decide on that soon also.

    Warm hugs,
    kathleen:)

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