anyone's CA125 flatten out on weekly taxol?

lindaprocopio
lindaprocopio Member Posts: 1,980 Member
edited March 2014 in Ovarian Cancer #1
My CA125 only dropped 1/2 point this past week, according to this morning's pre-chemo labs. The last time I took weekly taxol, my CA125 flattened out after 6 rounds in the mid-40's and stayed there for 4 more rounds, and yet I got a clear CT/PET after 10 rounds of the weekly taxol and I took a 4 month chemo break. But those same lymph nodeas let up on my next CT/PET (malignacy in 1 confirmed by needle biopsy) and I went back to the weekly taxol. For reference, my lowest CA125 ever was 11. My CA125 at the start of this latest chemo was 130 and dropped to 102, then 83, then 72, and now 71.5 with the weekly taxol infusions.

Have any of you ever had a 'flat' CA125 while on weekly taxol? I guess I'd just feel better until I get my pre-chemo labs next Monday if I knew that this could happen on taxol and that it doesn't necessarily mean that I'll soon be changing chemo drugs. Maybe I'll get a good drop next week and will feel silly worrying. Thanks!

Comments

  • saundra
    saundra Member Posts: 1,370 Member
    #2
    UP
    Never took it weekly but once my CA125 starts up it has continued or else I have to stop due to allergies.
    Saundra
  • clamryn
    clamryn Member Posts: 508
    #3
    Rising CA125
    Linda I was on taxol for 6 infusions in 2008 and my CA125 continued to go down. Then I got a PET/Scan and I was NED until 2010. When my CA125 started rising (which wasn't a lot....I knew it was back). Went from 32, 48, 52. Now I am on doxil. My CA125 last month was 32 and it went up to 34. I am nervous as heck. When I had ovarian cancer in 1991 and went cancer free for the 17 years, my CA125 stayed around 8, 10. I can't really answer your question but I will definitely pray that your number goes down. Sending hugs to you. Linda
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #4
    clamryn said:

    Rising CA125
    Linda I was on taxol for 6 infusions in 2008 and my CA125 continued to go down. Then I got a PET/Scan and I was NED until 2010. When my CA125 started rising (which wasn't a lot....I knew it was back). Went from 32, 48, 52. Now I am on doxil. My CA125 last month was 32 and it went up to 34. I am nervous as heck. When I had ovarian cancer in 1991 and went cancer free for the 17 years, my CA125 stayed around 8, 10. I can't really answer your question but I will definitely pray that your number goes down. Sending hugs to you. Linda

    What stage?
    I'm wondering what stage you were diagnosed at since you were in remission for 17 years?
  • kikz
    kikz Member Posts: 1,345 Member
    #5
    Even though I have gone through three rounds of chemo, surgery and now on three more rounds of chemo, I still feel like there are so many things I don't understand. When you are getting weekly chemo is this for maintainance or because it has come back? God, I just want some relief from all this. I have felt good after chemo, waiting for surgery and after surgery waiting for chemo to start again. Of course I know about recurrance but am just hoping for some time to enjoy life for a bit. I know this is probaqbly my life from now on, but since my diagnosis on March 18, 2010 I feel like I have been in limbo. I haven't gone out or really enjoyed any kind of life. Will I be able to at some point? Please give me some encouragement.

    Luv, Karen
  • clamryn
    clamryn Member Posts: 508
    #6
    nancy591 said:

    What stage?
    I'm wondering what stage you were diagnosed at since you were in remission for 17 years?

    Stage 1C
    Nancy it was 1C. It was all contained in my ovaries but it was found in the fluid. I had a radiation injection at the time. It was a one time thing and I was the 10th person to have it done at the hospital I was at. It was called P132. They don't use it anymore. Then I was on chemo pills for about 6 months but my white blood cells kept going down so my doctor took me off of them and I went cancer free for 17 years. I thought I had it beat.
    Linda
  • kikz
    kikz Member Posts: 1,345 Member
    #7
    Even though I have gone through three rounds of chemo, surgery and now on three more rounds of chemo, I still feel like there are so many things I don't understand. When you are getting weekly chemo is this for maintainance or because it has come back? God, I just want some relief from all this. I have felt good after chemo, waiting for surgery and after surgery waiting for chemo to start again. Of course I know about recurrance but am just hoping for some time to enjoy life for a bit. I know this is probably my life from now on, but since my diagnosis on March 18, 2010 I feel like I have been in limbo. I haven't gone out or really enjoyed any kind of life. Will I be able to at some point? Please give me some encouragement.

    Luv, Karen

    Sorry, must be chemo brain.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #8
    kikz said:

    Even though I have gone through three rounds of chemo, surgery and now on three more rounds of chemo, I still feel like there are so many things I don't understand. When you are getting weekly chemo is this for maintainance or because it has come back? God, I just want some relief from all this. I have felt good after chemo, waiting for surgery and after surgery waiting for chemo to start again. Of course I know about recurrance but am just hoping for some time to enjoy life for a bit. I know this is probably my life from now on, but since my diagnosis on March 18, 2010 I feel like I have been in limbo. I haven't gone out or really enjoyed any kind of life. Will I be able to at some point? Please give me some encouragement.

    Luv, Karen

    Sorry, must be chemo brain.

    WEEKLY taxol is for a recurrence; once-a-month is 'maintenance'.
    Taxol is given weekly sometimes for a recurrence, like in my case. If taxol is being used as maintenance to hopefully KEEP you in remission, it's usually given just once a month.

    Back in late November 2009 3 of my lymph nodes lit up on my CT/PET scan and since it was so close to the holidays, my chemo-onc gave me the option of taking a fractionated dose of taxol, weekly, to "hold me until after the holidays when we'd talk about putting me on Doxil". The logic was that weekly taxol is an easy chemo to take, and usually only makes you bald and tired but no other real side affects, and so I could enjoy Christmas. Anyway, my CA125 kept dropping with the weekly taxol, and so after the holidays we decided to just stay on it. 10 rounds of weekly taxol and I had a clear CT/PET, and went off all chemo.

    But after 3 months, my CA125 shot up from 45 to 130 at my routine check-up, and that triggered another CT/PET that showed that 2 of the lymph nodes were active again (confirmed malignant with a needle biopsy). So I went back on the weekly taxol because it worked so good the last time. But after 5 rounds, this tiny 1/2 point CA125 drop has me concerned that taxol is no longer working its magic with me.
  • kikz
    kikz Member Posts: 1,345 Member
    #9
    lindaprocopio said:

    WEEKLY taxol is for a recurrence; once-a-month is 'maintenance'.
    Taxol is given weekly sometimes for a recurrence, like in my case. If taxol is being used as maintenance to hopefully KEEP you in remission, it's usually given just once a month.

    Back in late November 2009 3 of my lymph nodes lit up on my CT/PET scan and since it was so close to the holidays, my chemo-onc gave me the option of taking a fractionated dose of taxol, weekly, to "hold me until after the holidays when we'd talk about putting me on Doxil". The logic was that weekly taxol is an easy chemo to take, and usually only makes you bald and tired but no other real side affects, and so I could enjoy Christmas. Anyway, my CA125 kept dropping with the weekly taxol, and so after the holidays we decided to just stay on it. 10 rounds of weekly taxol and I had a clear CT/PET, and went off all chemo.

    But after 3 months, my CA125 shot up from 45 to 130 at my routine check-up, and that triggered another CT/PET that showed that 2 of the lymph nodes were active again (confirmed malignant with a needle biopsy). So I went back on the weekly taxol because it worked so good the last time. But after 5 rounds, this tiny 1/2 point CA125 drop has me concerned that taxol is no longer working its magic with me.

    So it's
    all just a crap shoot. I know I am wanting answers no one can give me. I'm sure you understand where I am at right now. I need relief and my family and friends need relief. I just have to pray that my numbers hold up for a while.

    Thanks, Karen
  • msfanciful
    msfanciful Member Posts: 559
    #10
    Hi Linda,
    I recently
    Hi Linda,

    I recently completed my weekly taxol (12-weeks total).

    After 4 weeks of taxol my numbers went from 63 to 11 after 8 weeks to 3 and after the 12th week it was still 3 .

    Next week I am due to see my oncologist, don't know what to expect; but I really enjoyed the break that's for sure.

    Not sure if this is the answer you were looking for, but thought I'd offer the info and hope it helps.

    Take care,

    Sharon
  • upsofloating
    upsofloating Member Posts: 466 Member
    #11
    lindaprocopio said:

    WEEKLY taxol is for a recurrence; once-a-month is 'maintenance'.
    Taxol is given weekly sometimes for a recurrence, like in my case. If taxol is being used as maintenance to hopefully KEEP you in remission, it's usually given just once a month.

    Back in late November 2009 3 of my lymph nodes lit up on my CT/PET scan and since it was so close to the holidays, my chemo-onc gave me the option of taking a fractionated dose of taxol, weekly, to "hold me until after the holidays when we'd talk about putting me on Doxil". The logic was that weekly taxol is an easy chemo to take, and usually only makes you bald and tired but no other real side affects, and so I could enjoy Christmas. Anyway, my CA125 kept dropping with the weekly taxol, and so after the holidays we decided to just stay on it. 10 rounds of weekly taxol and I had a clear CT/PET, and went off all chemo.

    But after 3 months, my CA125 shot up from 45 to 130 at my routine check-up, and that triggered another CT/PET that showed that 2 of the lymph nodes were active again (confirmed malignant with a needle biopsy). So I went back on the weekly taxol because it worked so good the last time. But after 5 rounds, this tiny 1/2 point CA125 drop has me concerned that taxol is no longer working its magic with me.

    Linda, is there a
    Linda, is there a possibility that weekly taxol could see less dramatic results in the numbers (lower doses, less dramatic response)? At least there is not an uptick at this point. Stay positive, I'm pulling for you. Annie
  • upsofloating
    upsofloating Member Posts: 466 Member
    #12
    msfanciful said:

    Hi Linda,
    I recently
    Hi Linda,

    I recently completed my weekly taxol (12-weeks total).

    After 4 weeks of taxol my numbers went from 63 to 11 after 8 weeks to 3 and after the 12th week it was still 3 .

    Next week I am due to see my oncologist, don't know what to expect; but I really enjoyed the break that's for sure.

    Not sure if this is the answer you were looking for, but thought I'd offer the info and hope it helps.

    Take care,

    Sharon

    Sharon, such great news for
    Sharon, such great news for you! Your numbers sound awesome! --Annie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #13
    upsofloating said:

    Sharon, such great news for
    Sharon, such great news for you! Your numbers sound awesome! --Annie

    This week (still on weekly taxol) my CA125 went UP 7 points!
    Well, now I really do think taxol has stopped being effective for me. My labs before Monday's weekly taxol infusion showed that my CA125 went from 71.5 to 78.3. So they've cancelled this next Monday's taxol infusion and are working to get me in for a CT/PET scan early next week to see what's going on. Counting the 6 carbo/taxols of my initial treatment protocol, I've had 23 rounds of taxol all together, and maybe that's as good a run on it as I can get. I hate to leave taxol behind as it has been such an easy chemo for me with no side effects other than baldness and some fatigue. If the CT/Pet shows no disease progression and some improvement since my last CT/PET 3 months ago, I'll stay on the weekly taxol and we'll just assume that my CA125 is no longer such an effective marker for me. (Included in that thought is that I has a CA125 of 45 the last time I was in a short remission with no evidence of disease on my CT/Pet). But I think it's more likely that the scan won't be that rosy and that I'll need to switch chemo drugs.

    My next chemo line will be Doxil, so I'll need to get a MUGGA scan next week, too, if they can squeeze that in. I have mild lymphodema in my ankles from all the radiation I had, plus the 25 nodes removed during my surgery, and now the recurrence that metasticized in 3 lymph nodes. I'm worried that I won't be able to wear the compression stockings that keep the swelling under control while I'm on Doxil. I saw a lymphodema specialist about it yesterday and she said to try putting my compression stockings in the freezer before putting them on, and that I will probably just have to go without them and keep my feet propped up for the week right after each infusion. Anyone else have the combo problem of Doxil skin and lymphodema or any ideas for me?
  • bea-mil
    bea-mil Member Posts: 108
    #14
    lindaprocopio said:

    This week (still on weekly taxol) my CA125 went UP 7 points!
    Well, now I really do think taxol has stopped being effective for me. My labs before Monday's weekly taxol infusion showed that my CA125 went from 71.5 to 78.3. So they've cancelled this next Monday's taxol infusion and are working to get me in for a CT/PET scan early next week to see what's going on. Counting the 6 carbo/taxols of my initial treatment protocol, I've had 23 rounds of taxol all together, and maybe that's as good a run on it as I can get. I hate to leave taxol behind as it has been such an easy chemo for me with no side effects other than baldness and some fatigue. If the CT/Pet shows no disease progression and some improvement since my last CT/PET 3 months ago, I'll stay on the weekly taxol and we'll just assume that my CA125 is no longer such an effective marker for me. (Included in that thought is that I has a CA125 of 45 the last time I was in a short remission with no evidence of disease on my CT/Pet). But I think it's more likely that the scan won't be that rosy and that I'll need to switch chemo drugs.

    My next chemo line will be Doxil, so I'll need to get a MUGGA scan next week, too, if they can squeeze that in. I have mild lymphodema in my ankles from all the radiation I had, plus the 25 nodes removed during my surgery, and now the recurrence that metasticized in 3 lymph nodes. I'm worried that I won't be able to wear the compression stockings that keep the swelling under control while I'm on Doxil. I saw a lymphodema specialist about it yesterday and she said to try putting my compression stockings in the freezer before putting them on, and that I will probably just have to go without them and keep my feet propped up for the week right after each infusion. Anyone else have the combo problem of Doxil skin and lymphodema or any ideas for me?

    Lymphedema
    "Symptoms of Lymphedema
    Lymphedema can develop in any part of the body or limb(s). Signs or symptoms of lymphedema to watch out for include: a full sensation in the limb(s), skin feeling tight, decreased flexibility in the hand, wrist or ankle, difficulty fitting into clothing in one specific area, or ring/wristwatch/bracelet tightness. If you notice persistent swelling, it is very important that you seek immediate medical advice (and get at least one second opinion) as early diagnosis and treatment improves both the prognosis and the condition.

    Lymphedema develops in a number of stages, from mild to severe,referred to as Stage 1, 2 and 3:

    Stage 1 (spontaneously reversible):
    Tissue is still at the "pitting" stage, which means that when pressed by fingertips, the area indents and holds the indentation. Usually, upon waking in the morning, the limb(s) or affected area is normal or almost normal size.

    Stage 2 (spontaneously irreversible):
    The tissue now has a spongy consistency and is "non-pitting," meaning that when pressed by fingertips, the tissue bounces back without any indentation forming). Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.

    Stage 3 (lymphostatic elephantiasis):
    At this stage the swelling is irreversible and usually the limb(s) is/are very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery called "debulking" at this stage.

    When lymphedema remains untreated, protein-rich fluid continues to accumulate, leading to an increase of swelling and a hardening or fibrosis of the tissue. In this state, the swollen limb(s) becomes a perfect culture medium for bacteria and subsequent recurrent lymphangitis (infections). Moreover, untreated lymphedema can lead into a decrease or loss of functioning of the limb(s), skin breakdown, chronic infections and, sometimes, irreversible complications. In the most severe cases, untreated lymphedema can develop into a rare form of lymphatic cancer called Lymphangiosarcoma (most often in secondary lymphedema).

    Treatments for Lymphedema
    If the lymphedema is not caused by infection: Depending on the severity of the lymphedema, the recommended treatment plan should be determined using an approach based on the Complex Decongestive Therapy (CDT) methods which consist of: a) manual lymphatic drainage; b) bandaging; c) proper skin care & diet; d) compression garments (sleeves, stockings, devices such as Reid Sleeve, CircAid, Tribute, as well as other alternative approaches); e) remedial exercises; f) self-manual lymphatic drainage & bandaging, if instruction is available; g) continue to follow prophylactic methods at all times.


    Contraindications
    1.Post-cancer surgery lymphedema patients who experience a sudden marked increase of swelling should immediately cease treatment and be checked by their physician for possible recurrent tumor or disease. Tumor growth can block the lymphatic flow causing a worsening of the condition. Although not yet proven in a controlled clinical study, many lymphedema specialists believe that patients with recurrent or metastatic disease should not undergo Complete Decongestive Therapy (CDT) in order not to promote the spreading of the cancer. Be sure to discuss this treatment with your doctor."

    you can read more: http://www.lymphnet.org/lymphedemaFAQs/overview.htm

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