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In shock for now...

daylady
daylady Member Posts: 122

Ladies, I met with my oncologist this afternoon to review the results of my CT Scan.  Not good news.  The Topotecan isn't working, and the lesion on my liver has gone from 1.8 to 2.3 cm.  My CA125 is 63 which is the highest it has ever been.  He has suggested going  on Taxol (his first choice) or  Gemzar (2nd choice) but the real kicker was when he told me the prognosis was that I had about a year with or without chemo!!  I don't even know how to get my arms around that.  I'm completely asymptomatic and always have been.  I have no pain.  Nothing.  How can it be that I'll be dead in a year????  I want to run away.  When I told him that I have never been a person who was willing to accept that I have an expiration date stamped on my foot, he said he wanted more than anything for me to prove him wrong and for us to be laughing about it ten years from now, but I asked so he had to give me an educated guess.  Cytotoxic drugs have not worked for me up to now, so I am very reluctant to start in again, especially if  it is going to eat into the time I have left with my husband.  He is in shock. I just needed to unload so I'm sorry about this....I just don't know what to think...or do.

 

Comments

  • Nellasing
    Nellasing Member Posts: 528
    edited November 2016 #2
    Oh dear daylady

    I have no words.... I just read your bio and you've been through so much!  I will hold you and your husband and family close in my prayers and send you all the virtual (((HUGS))) you can take <3<3<3

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Dam* Cancer!

    Daylady, I am so sorry to hear this! And, I can't begin to know how you feel. But, this sucks BIG TIME!

    What about Keytruda? Or one of the other immunotherapy drugs? LouAnn seems to be doing well on Keytruda.

    Is surgery an option?

    I so wish you did not have to deal with this. And I can't help but wonder if you should get another opinion?

    Take care of yourself dear lady. Sending you major love and hugs tonight. 

    Cindi

     

     

  • Mmpeterson
    Mmpeterson Member Posts: 124
    I agree, why can't surgery be

    I agree, why can't surgery be done to remove the lesion.  I would definately get a second opinion.  No reason at all to be sorry, that is what this board if for to yell, scream, cry, etc.  Can't imagine what you are going through.  I am keeping you and your family in my prayers.  Many hugs!! Maryanne

  • Lou Ann M
    Lou Ann M Member Posts: 996
    Oh, Daylady

    I am so sorry that this is happening to you.  Topotecan did nothing for me either.  No one knows how long we actually have on this earth.  Both my father and my grandmother lived several year longer than what a doctor told them.  And very recently a good freinds father was told he ha little time left.  He lived anther four years.  All had cancer.  There is always hope, but I do know how you feel.  A little over four months ago I was in a similar situation.  My doctor told me that the only chemo that were left for me had very harsh side effects and a small percentage of working and I would have to make a decision has to what I wanted to do.  I asked about immunotherapy and he jumped at it.  Merck approved me for KeyTrudy under a compassionate use program.  It seems to be working and I am hopeful.

    Cry, scream, yell,, then hug your husband.

    Hugs and prayers, Lou Ann

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    edited November 2016 #6
    Daylady,

    this news is just unimaginable.  Devastating.  We care so very much so never use the word sorry here again.  I hope that keytruda may be an option.

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    edited November 2016 #7
    (((Helen))) I am so, so sorry

    (((Helen))) I am so, so sorry you have to go through this.  Being told by your doctor that you have a year without or without treatment is just plain crazy!!  There are other alternative treatments out there.  You live in a metropolitan area with several cancer centers.  Surely you can get a second or third opinion.  

    Love,

    Eldri

  • Editgrl
    Editgrl Member Posts: 903
    edited November 2016 #8
    Oh, Daylady

    I had been waiting for an update and dear God, this is not what any of us wanted to hear for you.  I remember that there were multiple small locations in addition to the nodule on your liver.  Could they not remove the lesion on your liver at least?  

    I know you are with Kaiser as am I.  What about a second opinion outside of the system?  Stanford?  UCSF?  I can absolutely understand not wanting to go through chemo if it's not going to change the outcome.  What would be the point of that?  There are other things out there... what about trials or the Keytruda as has been mentioned?  

    My heart is hurting for you...

    Chris

     

  • daylady
    daylady Member Posts: 122
    edited November 2016 #9
    Thanks so much for all your

    Thanks so much for all your thoughts!  It means so much.  I have a phone conference with my naturopathic oncologist tomorrow, and once my husband and I have a chance to take a breath, we will decide where we will go for a second opinion (or third).  It's a journey and I am certainly not ready to throw in the towel, or accept an expiration date!  To be continued...... hugs to all~ - Helen

  • beccabtown
    beccabtown Member Posts: 234
    edited November 2016 #10
    I'm so very sorry to hear

    I'm so very sorry to hear this. Your positive attitude will help you find the best way through this. Please keep us posted.

  • Red Corvette
    Red Corvette Member Posts: 114
    edited November 2016 #11
    IMHO

    Ms Daylady, if you are feeling good, not in any pain, and able to do your usual activities then you're certainly not going anywhere fast. Definately get another opinion and try and take it one good day at a time. My sister had stage 4 kidney cancer and a doctor told her she had 2 or 3 years to live. She lived 10 more years with a very good quality of life. When she would start having anxiety about her mortality, I would ask her well how do you feel today. If you're feeling good, then your not dying today, tomorrow, this week, and more than likely not this month. No doctor knows how long someone has until you're really really ill, in pain and feeling horrible which is not you. Sorry you are dealing with mental anguish because some doctor flat out took a guess about your mortality. Prove him wong, stay strong, believe that you will have all the time you want and it will happen. 

    Red 

     

     

    feel

  • Soup52
    Soup52 Member Posts: 905
    edited November 2016 #12
    Oh Daylady, I am so sorry.

    Oh Daylady, I am so sorry. Prayers for second opinion and possible immunotherap! Our hearts and prayers are with you!

  • MAbound
    MAbound Member Posts: 1,156 **
    edited November 2016 #13
    Ignorant Doctors

    I think we've seen time and again that doctors just don't know everything. Instead of giving you an expiration date, your doctor would have been more intelligent to just admit he couldn't answer that kind of question. I have more respect for doctors who can admit when they don't know and offer to help find out if there's an answer elsewhere. I think doctors have been trained to exude the impression that they are all-knowing so that we will take their word on everything they say without question. Sorry, but I can't be that kind of patient...none of us should be. Our questions will keep them on their toes and reinforce that they should never stop learning because the science never stops evolving. Please, pick yourself up from this setback, get mad and keep on fighting! This doctor, this cancer, does not have the final say. By all means see if you can't get the opportunity to try Keytruda. If cytotoxins don't work for you, it seems to make sense that this might. Sending hugs and prayers to give you strength. 

  • janaes
    janaes Member Posts: 799
    edited November 2016 #14
    I am so glad you are going to

    I am so glad you are going to get a second or third opinion.  I think i would.  I am so sad to hear that a doctor has told you how long you have to live.  Thank goodness doctors are wrong sometimes.  I like what red corette said about his sister. Doctors were definetly wrong about her. 

    Hugs Janae

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    edited November 2016 #15
    daylady, I can't imagine

    daylady, I can't imagine hearing that OR wrapping my head around it.  Please try to keep in mind you are a statistic of one.  There are people, even here on the boards, who have shown the doctors you don't have an expiration date. 

    Hugs dear one. 

  • Kvdyson
    Kvdyson Member Posts: 789
    edited November 2016 #16
    Helen, good for you for not

    Helen, good for you for not accepting that doctor's guess as a fact! This is an unexpected bend in the road for sure but it's certainly not a dead-end. There are many, many options for you. If your doctor won't help you find a trial then you can search for one on the National Cancer Institute's website. Please don't give up hope! Kim

  • paris11
    paris11 Member Posts: 159
    edited November 2016 #17
    Daylady

    I am so sorry.  Prayers for you.

  • DrienneB
    DrienneB Member Posts: 182
    edited November 2016 #18
    Stronger Than You Think, Statistic of One

    Dear Helen,

    Terrible to hear things said the way they were said. It hurt me to hear it. Sorry for you, for your husband and rest of your family. But of course, no one does really know about the span of your life but God. You have been an inspiration to me already and I know you will go forward one day at a time with grace.

    jane