Would you all be honest with me please???

Lisa13Q
Lisa13Q Member Posts: 677
in Ovarian Cancer #1
Ok, you all know my mother's liver tumor grew over an inch in 2 months, over x-mas. The PARPS sis not work. She's now on 115mg of taxol every 3 weeks,,,,then off a week...she seems to be doing much better...her attitude is good.....her gas is VERY bad....she is fatigued a lot, but we are attributing that to the chemo. Now, today, I asked the doc. down here, who is administering her chemo here (FL), what the effectiveness of Taxol is on liver mets? HE gave me the biggest BS answer.....so I asked again....again I got the biggest run around ever.....My mother's primary doc at MSKCC would have been so straight with me....anyway, I went on the web, and lo and behold....the stats say, she has 13 months....MAX.....ok......what would the symptoms be then that it is getting worse? How would we know whether it's shrinking or progressing....besides the CT scan.....what should I be looking for either for hopefullness or for reality? PLease be honest with me, I can take it. What I can't take is mamby pamby BS....I am looking forward to seeing NY doctor....again...she has always been honest with me....But when you're taking care of someone, some ideas of what I should be looking for might be helpful....Why would a doctor be so indirect...anyway, I thought he was an arrogant you know what....my mother said he's not the primary so he didn't want to say anything....well, you guys are way smarter than him anyway....so help me out..what are signs of progression? or regression? Can she live more than a year with liver mets?

Comments

  • kayandok
    kayandok Member Posts: 1,202 Member
    #2
    Hi Lisa,
    the short answer is they really don't know, but the experienced docs share honestly their opinions from working with hundreds of patients, right? Bonnie Rose that died recently was give a few months to live a few years ago. She outlived that by years!

    Is her tumor low or high grade? Is she receiveing 115mg x m2 (body surface) of taxol or is 115mg the actual amount? I receive 100mg of taxol every week which is calculated by (60mg x m2), for example. If her tumor is high grade then, the chemo works quite well, but if it is low grade, then not so well. But, if it is low grade, then it takes way longer to grow. Catch 22, so really hard to predict. I know several friends who died of ovca, and it was in their liver at the end. One gal was gone in a very short amount of time and one gal took years for the liver to stop functioning. Elizabeth Edwards died from "liver failure" but I am curious if that means she had tumors in her liver causing that, or if the chemo/meds caused her liver to stop functioning. Does anyone know? Anyway, I'm just rambling my thoughts and am not really going anywhere, except to say that no one really knows for sure!

    Lisa, it sounds like your mom is in a good place right now. I would take it a day at a time, with your mom. So much easier said than done, I realize.

    Hugs to you
    kathleen

    PS did you mean to say "115mg every week for 3 weeks, then off for a week"? If so, that is similar to the dosage I am receiving.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    I think the symptoms depends on where the implants are. I never asked about life expectancy and was never offered any information. I find that my daily outlook definately depends on how I am feeling. The first dose of Taxol knocked me back 2 days after infusion but now I'm feeling great!! Tired yes but able to do what I have to do. I found this link from Johns Hopkins about recurrent ovarian:

    http://www.ovariancancer.jhmi.edu/recurrentqa.cfm

    It dosn't really address your specific question but I found it informative. W
    Wishing you and your Mom good days ahead!
  • Barbara53
    Barbara53 Member Posts: 652
    #4
    what we don't know
    Hi Lisa, and glad to hear your mom is responding to the Taxol. My elderly mother responded well to carbo for her recurrance, but like yours, she is having digestive issues and some days she feels really terrible. She's been out of chemo a month, and may be redeveloping pleural effusion already. One day at a time.

    I did want to mention that there may be more options if the chemo stabilizes the tumor. A friend of my mother's has liver cancer secondary to ovarian, which could not be treated with chemo. She is having a "cyberknife" procedure where gold markers are inserted around the tumor so that it can be safely bombarded with radiation. It's day surgery, so can it be all that bad?

    In general, I have found prognostic tables to be useless, though like you, I have read them all.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #5
    Barbara53 said:

    what we don't know
    Hi Lisa, and glad to hear your mom is responding to the Taxol. My elderly mother responded well to carbo for her recurrance, but like yours, she is having digestive issues and some days she feels really terrible. She's been out of chemo a month, and may be redeveloping pleural effusion already. One day at a time.

    I did want to mention that there may be more options if the chemo stabilizes the tumor. A friend of my mother's has liver cancer secondary to ovarian, which could not be treated with chemo. She is having a "cyberknife" procedure where gold markers are inserted around the tumor so that it can be safely bombarded with radiation. It's day surgery, so can it be all that bad?

    In general, I have found prognostic tables to be useless, though like you, I have read them all.

    35% of my liver is compromised by metastasis.
    My last CT/PET showed that 35% of my liver is now involved with cancer mets. I have NO symptoms and feel wonderful, even with this dire news. (I even went to the Bounce-Plex with my grandkids and did the trampolenes with them last weekend). My oncologist said you can have 90% of your liver covered with tumors and still have normal liver function. So, who honestly knows? Maybe it isn't all BS from your mother's oncologist. My statistical 'expiration date', according to what I could find online, was November 2010. I'm still here and living an excellent quality of life.

    I know you want to be emotionally prepared if things are bad and apt to get worse. I guess I'm telling you that there is no advantage in looking around that dark corner before you get to it. The past, the future, let both go, or you lose you chance to be happy in the NOW. ((((hugs))))
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #6
    kayandok said:

    Hi Lisa,
    the short answer is they really don't know, but the experienced docs share honestly their opinions from working with hundreds of patients, right? Bonnie Rose that died recently was give a few months to live a few years ago. She outlived that by years!

    Is her tumor low or high grade? Is she receiveing 115mg x m2 (body surface) of taxol or is 115mg the actual amount? I receive 100mg of taxol every week which is calculated by (60mg x m2), for example. If her tumor is high grade then, the chemo works quite well, but if it is low grade, then not so well. But, if it is low grade, then it takes way longer to grow. Catch 22, so really hard to predict. I know several friends who died of ovca, and it was in their liver at the end. One gal was gone in a very short amount of time and one gal took years for the liver to stop functioning. Elizabeth Edwards died from "liver failure" but I am curious if that means she had tumors in her liver causing that, or if the chemo/meds caused her liver to stop functioning. Does anyone know? Anyway, I'm just rambling my thoughts and am not really going anywhere, except to say that no one really knows for sure!

    Lisa, it sounds like your mom is in a good place right now. I would take it a day at a time, with your mom. So much easier said than done, I realize.

    Hugs to you
    kathleen

    PS did you mean to say "115mg every week for 3 weeks, then off for a week"? If so, that is similar to the dosage I am receiving.

    Thanks Kathleen
    Yes, I did mean to say 115mg every week for 3 weeks then off a week...in fact, the doctor changed it this week to 2 weeks on and one week off....her tumor is grade 3???? I think I remember....her chemo seems to have gone very well this week. We are 30 hours out and she has been active much to her surprise....we'll see tomorrow...I think it helps for her to have someone around....we are giving her monthly events to look forward to....February was her birthday....March an old friend comes down....April she goes back to NY....
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #7
    lindaprocopio said:

    35% of my liver is compromised by metastasis.
    My last CT/PET showed that 35% of my liver is now involved with cancer mets. I have NO symptoms and feel wonderful, even with this dire news. (I even went to the Bounce-Plex with my grandkids and did the trampolenes with them last weekend). My oncologist said you can have 90% of your liver covered with tumors and still have normal liver function. So, who honestly knows? Maybe it isn't all BS from your mother's oncologist. My statistical 'expiration date', according to what I could find online, was November 2010. I'm still here and living an excellent quality of life.

    I know you want to be emotionally prepared if things are bad and apt to get worse. I guess I'm telling you that there is no advantage in looking around that dark corner before you get to it. The past, the future, let both go, or you lose you chance to be happy in the NOW. ((((hugs))))

    Thanks Linda
    You're so smart......wisdom wisdom wisdom...yes, I am trying to prepare.....when we forget she has cancer, we have so much more fun!!!!!
  • ked419
    ked419 Member Posts: 13
    #8
    Lisa13Q said:

    Thanks Linda
    You're so smart......wisdom wisdom wisdom...yes, I am trying to prepare.....when we forget she has cancer, we have so much more fun!!!!!

    Lisa,
    You are so right, life
    Lisa,

    You are so right, life is so much better when we can forget about the cancer!

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