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Christine B.
Christine B. Member Posts: 137
in Ovarian Cancer #1
Had my appt. with the chemo doctor yesterday and gyn/onc today. After a three month break from chemo, this after surgery and six rounds of carboplatin/taxol and a scan that showed a few small possible tumors in the abdomen. My CA 125 went up from 22.7 to 103, so I'm having a ct scan on Monday to see better what's happening. Today the gyn/onc said something that threw me for a bit....He was talking about the options people in my situation with Stage IV OVCA might take from here: Do nothing else so as to have a quality of life without the side effects of always being on and off of chemo, wait and watch until there are symptoms, continue with chemo no matter what. He said he would choose the first option for himself, and that's what threw me. I took it as his recommendation, but my husband didn't see it that way. He said that the doctor was telling me it was the choice of the individual and that is what his choice for himself would be, not necessarily for me. Now that I have stewed on it for a few hours, I decided that for me, the battle should go on. I did put up with the side effects of chemo, but they did not effect my quality of life except for that period of time. Other than the pain in the butt of having a colostomy bag, I am feeling better and healthier now than I have felt for years. Perhaps it's because of the surgery, chemo, and the healthier lifestyle I have adopted. I'm not ready to quit. Anyway, I would appreciate your good thoughts and prayers about the ct scan I'm having Monday the 6th and the direction I go from there.

Comments

  • antcat
    antcat Member Posts: 270
    #2
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    Your options
    Dear Christine, I agree with you. I too posted something today. I wish my gyn/onc would handle my chemo part because he is the kindest, most compassionate individual. Sometimes I don't think medical oncologists know how to talk to patients. I am trying also to fight, but my blood counts have been going down and down and down, yet the medical oncologist is doing nothing to increase them. I'm seeing my primary care tomorrow. It just seems that they don't know what chemo to give for ovarian cancer and it is very, very sad.

    Take care.
  • kikz
    kikz Member Posts: 1,345 Member
    #3
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    Christine
    You certainly do have my good thoughts and prayers. I agree with you, too. I want to always fight for my life.

    Karen
  • mopar
    mopar Member Posts: 1,972 Member
    #4
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    DEAR CHRISTINE
    God Bless you for your perserverance and fighting spirit! I'm with you - if I were feeling good I'd be ready to forge ahead, too. Seems like when you feel yucky it's harder to muster up the strength, even though you still can. Just seems that being in good spirits intensifies your resolve.

    So glad to hear you have made some changes throughout this journey that are for the better. I believe in doing all we can for ourselves, 'cause it sure can't hurt! You are in my prayers. Sending oodles of hugs, too!

    Monika
  • srwruns
    srwruns Member Posts: 343
    #5
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    I think we know or have that
    I think we know or have that "feeling" when it is time to discontinue a course of treatment. It sounds like you have a different drive or "knowing"... go with your instincts.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
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    You got it!
    I hear the positive fight in your post, Christine. Keep us posted.
    Prayers and hugs,
    kathleen
  • upsofloating
    upsofloating Member Posts: 466 Member
    #7
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    Sorry to hear your ca125 is
    Sorry to hear your ca125 is rising after your chemo break. Did you have a PET scan after chemo to confirm activity in the 'small possible tumors'? I would definitely want to see what, if any, changes have occurred per CT scan before coming to any decision.

    I'll share my experience: I had a clean post chemo CT then a CT at 6 months post chemo showed enlarged inguinal lymph nodes and ca125 had shot up to 200, a subsequent PET showed some increased uptake. My gyn-onc at the time wanted me to start chemo immediately, he had me get a port put in, told me the chemo he planned to use. Before the chemo could start he informed me he was leaving to go to another clinic and wanted me to follow but due to ins reasons it wasn't financially feasible and he had me referred to another gyn-onc in the group. He ordered an updated ca125 to be done before seeing new dr who would be handling chemo, treatment going forward. It was back down to 20! A repeat CT showed all nodes either resolved or resolving with comment of 'good response to treatment' - none had occurred. I had had a bladder infection just prior to first set of tests, most likely the cause. Then 3 months later another rise in ca125 to 200s, new CT/PET showed new enlarged nodes in different area. A biopsy confirmed the cancer. After that first go-round I opted to wait and see and repeated test and CT/PET in 3 months - these were essentially unchanged this time. I opted to revisit issue in another month, by then panic set in and I opted for chemo. Did chemo off and on all year, getting ca125 to normal and normal tests. Then after a another 3 month break we have new nodes, and a rising ca125. But now my bone marrow is not bouncing back too well so chemo will be more difficult.

    I have a possible symptom now that is to be biopsied for possible palliative radiation treatment. This is first time I have ever been aware of the cancer. And now my bone marrow may not be able to tolerate treatment. I am wondering if I should have passed on that first year of chemo and saved myself for when the symptoms surfaced or at least tests showed increasing progression. I had been given the same options your doctor gave you and I finally opted to start the battle. But maybe I should have waited and entered the war later. Now I will never know.

    Sorry for long post but it might help you to get a perspective. Each person's situation is different from both the cancer and the general physical well-being standpoint as well as the need to take charge and fight, or kick back and wait for the enemy to really make itself known. I think about the three months of no changes and wonder if I should have watched, waited, and taken action only when things got a little more aggressive.
    Thinking positive thoughts for your CT scan.
    Annie
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #8
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    upsofloating said:

    Sorry to hear your ca125 is
    Sorry to hear your ca125 is rising after your chemo break. Did you have a PET scan after chemo to confirm activity in the 'small possible tumors'? I would definitely want to see what, if any, changes have occurred per CT scan before coming to any decision.

    I'll share my experience: I had a clean post chemo CT then a CT at 6 months post chemo showed enlarged inguinal lymph nodes and ca125 had shot up to 200, a subsequent PET showed some increased uptake. My gyn-onc at the time wanted me to start chemo immediately, he had me get a port put in, told me the chemo he planned to use. Before the chemo could start he informed me he was leaving to go to another clinic and wanted me to follow but due to ins reasons it wasn't financially feasible and he had me referred to another gyn-onc in the group. He ordered an updated ca125 to be done before seeing new dr who would be handling chemo, treatment going forward. It was back down to 20! A repeat CT showed all nodes either resolved or resolving with comment of 'good response to treatment' - none had occurred. I had had a bladder infection just prior to first set of tests, most likely the cause. Then 3 months later another rise in ca125 to 200s, new CT/PET showed new enlarged nodes in different area. A biopsy confirmed the cancer. After that first go-round I opted to wait and see and repeated test and CT/PET in 3 months - these were essentially unchanged this time. I opted to revisit issue in another month, by then panic set in and I opted for chemo. Did chemo off and on all year, getting ca125 to normal and normal tests. Then after a another 3 month break we have new nodes, and a rising ca125. But now my bone marrow is not bouncing back too well so chemo will be more difficult.

    I have a possible symptom now that is to be biopsied for possible palliative radiation treatment. This is first time I have ever been aware of the cancer. And now my bone marrow may not be able to tolerate treatment. I am wondering if I should have passed on that first year of chemo and saved myself for when the symptoms surfaced or at least tests showed increasing progression. I had been given the same options your doctor gave you and I finally opted to start the battle. But maybe I should have waited and entered the war later. Now I will never know.

    Sorry for long post but it might help you to get a perspective. Each person's situation is different from both the cancer and the general physical well-being standpoint as well as the need to take charge and fight, or kick back and wait for the enemy to really make itself known. I think about the three months of no changes and wonder if I should have watched, waited, and taken action only when things got a little more aggressive.
    Thinking positive thoughts for your CT scan.
    Annie

    be careful
    did you have other labs done, as a cbc to check your wbc. hemoglobin and magnesium? Have md check these labs if you do start chemo again. If they are stable I would have more chemo. Good luck ...val

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