Metastatic (again) & scared

crissyma
crissyma Member Posts: 5
in Breast Cancer #1

I’m relatively new to this. I was on here after diagnosed with brain Mets in 2011 or 12 and just kind of dropped out because I really didn’t find a huge benefit.  Thought I would give it another go and try again.

So here‘s a little about my cancer journey:

I was diagnosed in May 2007 with Stage 2 Breast Cancer intraductal in situ aggressive carcinoma....errrrr  something like that. ER+ PR- HER2-  All I really heard was you have cancer.  I was feeing a lump in my arm pit/far left of my breast & it was progressively getting bigger & more irritating, so I went to have it checked.  So, self exam & doctor confirmed, 2 weeks later, my breast was gone.  In 2011, I was having problems with motor function on my left side and went in to the ER for chest pain. After a long weekend in the hospital hooked up to EKG's and chest MRI's and CT scans, IV's, blood draws, etc...They were ready to send me home with a heart monitor for a couple weeks until I asked the doctor about the numbness I was experiencing in my left leg.  Shortly followed another CT and then the doc.  That dreaded look on his face when he entered the room.  Shut the door and said he had bad news.  ”you have 2 tumors in your brain. One on each side. That was a few days before Thanksgiving 2011.  They also found affected lymphnodes throughout my body as well. 

MULTIPLE UPDATES:

Since I’ve been on here last, I was confirmed again, in 2015, with affected lymph nodes in my left armpit, mediasternum and subclavicular (the region). I was on different types of target therapy (AI’s) and anti estrogen therapy (faslodex, arimidex, etc..and the most recent, ibrance with femora). Just had my scan done on 12/20/17 and showed the ibrance and femora didn’t work at all and in fact made me so sick I lost 25 pounds in 2 months. It was a grueling couple months. Not only the waiting 3 months to do scans to check to see if it’s actually working, but the physical toll it took on my body, hair, mood, fatigue etc... long story short, it’s moved again to my bone and liver and more lymph nodes in “the region” and now in my abdomen. Doc wants to put me on Xeloda now after my liver biopsy and I’m freakin out a bit. Trying to deal with more metastatasis and recoup from the meds that were making me so sick and the holidays, I’m just totally spent. I’ve heard that once it hits the liver, median life expectancy diminishes and it’s scary. I know not to believe everything you read on the internet, that why I’m here again. 

Im really freaked out over this. Doc wants to start on regular chemo now Xeloda, and frankly, I’m thinking of quality of life. Has anyone taken Xeloda/Cape with mets especially to liver? Any suggestions on how to proceed or not and just live. I have a 17 year old daughter who’s my youngest (unless you count my 16 yo stepson). I’m extremely worried about my daughter. My oldest (son) is 25 and is handling it like a champ, however, my daughter is not. Idk what to do. My quality of life has always what’s been important to me and my fear is if I take the xeloda and am sick and it didn’t work, I just wasted time and that’s not what I want. But at the same time, I want to feel like I’ve tried to do something to stay alive. Ugggghhhh... any suggestions, comments, criticism or jokes would be appreciated. 

Thanks,

Crissyk

Comments

  • Mike555
    Mike555 Member Posts: 8
    #2
    Xeloda

    My wife was ER+ but it turned triple negative. She's has been on Xeloda for 6 months and has numerous bone mets to spine. Xeloda's side effects (SE's) aren't too bad, lots of hand and feet syndrome and tiredness. After 6 months on it, most of her spinal mets are gone with a few stubborn ones still hanging on.  Xeloda is effective but slow working. With all of your progression usually, they give you A/C plus Taxol to really get the cancers attention. Their's another forum with a subtopic of liver mets. After reading the various forums the real one to dread is mets to the brain or brain lining.

    Good luck to you.

    MikeW.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #3
    You can always quit

    but you won't know how you will react if you don't try.  I am so sorry that you're dealing with this Chrissy.  I do not have any experience to tell you about, but I do know that everyone reacts differently to different medications.  And I also know that you can always stop if you feel it is effecting your quality of life.  

    Best,

    Suzanne

  • Beepositive
    Beepositive Member Posts: 259 Member
    #4

    Hello Crissy sooo sorry you are having so much to deal WITH ....I CAN TELL YOU THIS  KEEP FIGHTING ITS HARD BUT TRY AND FOCUS ON SOMETHING POSITIVE AND BE AROUND POSITIVE THINGS LIKE YOUR KIDS..ask them what they are doing and let them talk to you about their friends and their lives..just to focus a little on something else...she is probally scared also and dont know how to help you..let her help with things around house i always say changing bathroom mat colors is refreshing especially something you see everyday change is good.

    But health wise..keep fighting and asking questions of your doctors about what options you have.......HANG IN THERE   ..YOU ARE STRONG AND A FIGHTER IM SURE...PRAYER TO YOU AND YOUR FAMILY...BEST WISHES FOR A HAPPY NEW YEAR!!! TRY NOT TO BEAT YOURSELF UP SO MUCH ITS A ROUGH ROAD FOR YOU BUT STRESS IS NOT GOOD ON ANY LEVEL IM ON TWO BLOOD PRESSURE MEDS NOW AND REALIZED I NEED STAND BACK AND CALM MYSELF DOWN AND FOCUS ON MY FUNNY GRAND TWINS WHO ALWAYS ECHO EACH OTHER ONE SAY SOMETHING AND THEN THE OTHER ONE SAY THE SAME THING... SOMETIMES I LET THEM FACE EACH OTHER AND i SAY.."LOOK IN THE MIRROR" LOL  THEY ARE SUCH A BLESSING AND JOY..NOW 7 YEARS OLD  IDENTIAL  .. HUGS AND PRAYERS 

    BEEPOSITIVE Smile

  • Apaugh
    Apaugh Member Posts: 850 Member
    #5
    Prayers going up

    Prayer going up for positive outcome and strength to make it through.  Take it a day at a time.

    Hugs,

    Annie

  • crissyma
    crissyma Member Posts: 5
    #6
    Mike555 said:

    Xeloda

    My wife was ER+ but it turned triple negative. She's has been on Xeloda for 6 months and has numerous bone mets to spine. Xeloda's side effects (SE's) aren't too bad, lots of hand and feet syndrome and tiredness. After 6 months on it, most of her spinal mets are gone with a few stubborn ones still hanging on.  Xeloda is effective but slow working. With all of your progression usually, they give you A/C plus Taxol to really get the cancers attention. Their's another forum with a subtopic of liver mets. After reading the various forums the real one to dread is mets to the brain or brain lining.

    Good luck to you.

    MikeW.

    MikeW

    Thank you so much for the info and encouragement. 

     

  • crissyma
    crissyma Member Posts: 5
    #7
    Beepositive said:

    Hello Crissy sooo sorry you are having so much to deal WITH ....I CAN TELL YOU THIS  KEEP FIGHTING ITS HARD BUT TRY AND FOCUS ON SOMETHING POSITIVE AND BE AROUND POSITIVE THINGS LIKE YOUR KIDS..ask them what they are doing and let them talk to you about their friends and their lives..just to focus a little on something else...she is probally scared also and dont know how to help you..let her help with things around house i always say changing bathroom mat colors is refreshing especially something you see everyday change is good.

    But health wise..keep fighting and asking questions of your doctors about what options you have.......HANG IN THERE   ..YOU ARE STRONG AND A FIGHTER IM SURE...PRAYER TO YOU AND YOUR FAMILY...BEST WISHES FOR A HAPPY NEW YEAR!!! TRY NOT TO BEAT YOURSELF UP SO MUCH ITS A ROUGH ROAD FOR YOU BUT STRESS IS NOT GOOD ON ANY LEVEL IM ON TWO BLOOD PRESSURE MEDS NOW AND REALIZED I NEED STAND BACK AND CALM MYSELF DOWN AND FOCUS ON MY FUNNY GRAND TWINS WHO ALWAYS ECHO EACH OTHER ONE SAY SOMETHING AND THEN THE OTHER ONE SAY THE SAME THING... SOMETIMES I LET THEM FACE EACH OTHER AND i SAY.."LOOK IN THE MIRROR" LOL  THEY ARE SUCH A BLESSING AND JOY..NOW 7 YEARS OLD  IDENTIAL  .. HUGS AND PRAYERS 

    BEEPOSITIVE Smile

    Thank you

    thank you for the kind words and encouragement!

     

  • crissyma
    crissyma Member Posts: 5
    #8
    Apaugh said:

    Prayers going up

    Prayer going up for positive outcome and strength to make it through.  Take it a day at a time.

    Hugs,

    Annie

    Thank you

    Thanks Annie!

  • crissyma
    crissyma Member Posts: 5
    #9
    Double Whammy said:

    You can always quit

    but you won't know how you will react if you don't try.  I am so sorry that you're dealing with this Chrissy.  I do not have any experience to tell you about, but I do know that everyone reacts differently to different medications.  And I also know that you can always stop if you feel it is effecting your quality of life.  

    Best,

    Suzanne

    Thanks Suzanne

    thanks for your words of encouragement. 

    I have decided to go that route. I will take it as long as I feel well enough. The last couple days I have felt great and am not really looking forward to changing it, but like you said, I can always quit.  

    Thanks so much!

  • Beepositive
    Beepositive Member Posts: 259 Member
    #10
    hapb

    yes we all are going thru one way or another..bee positive helps with some of the negitive feeling sometime I always try to find something good and positive..yes we all have our moments but if we focus on the good ..out weighs the bad.. and yes this site is a good release tool that helps ..thanks for all your support!

    happy new year to you...God Bless

    beepositive.

  • HapB
    HapB Member Posts: 527
    #11
    Beepositive said:

    hapb

    yes we all are going thru one way or another..bee positive helps with some of the negitive feeling sometime I always try to find something good and positive..yes we all have our moments but if we focus on the good ..out weighs the bad.. and yes this site is a good release tool that helps ..thanks for all your support!

    happy new year to you...God Bless

    beepositive.

    beep

    Happy New Year to you! I hope you are doing ok?

    It really is ok to have the full range of emotions and I find it is not helpful to tell a cancer patient to be positive, and in fact does more harm than good and I find it can be offensive.  We need to keep it real and we all have good days and bad. You cope with it in your own way and others cope with it in their own ways.  We are here to support each other through the ups and the downs. 

  • Beepositive
    Beepositive Member Posts: 259 Member
    #12
    hapb

    we all have our own opinions ..and see things different as you do .....GOD BLESS ..BUT I WILL STAY ON TH BEEPOSITIVE SIDE; A LITTLE POSITIVE ENERGY NEVER HURTS ANYONE.

    SUCCESS TO ALL THIS YEAR WITH TREATMENTS AND RECOVERY!

    HUGS TO YOU!!!

    BEEPOSITIVE

  • HapB
    HapB Member Posts: 527
    edited January 2018 #13
    Beepositive

    This is a point of view you might consider.

    http://nancyspoint.com/what-does-telling-a-cancer-patient-to-just-stay-positive-really-mean/

    Of course there is a time to stay positive, but it is generally NOT helpful to tell someone who is suffering how to feel. It minimizes the person and does not allow the person to express their feelings. There are ways to encourage without insulting someone by telling them that they should “beepositive”. 

     It is always rude to tell someone how they should feel, but it is really cruel to tell cancer patients who are posting their issues here. I hope you reconsider because I know you mean well, but it is not helpful.

  • Beepositive
    Beepositive Member Posts: 259 Member
    #14
    HAPB

    SORRY IF I OFFENDED ANYONE ESPECIALLY YOU..WE ARE ALL HERE TO EXPRESS OURSELVES AND FOR SUPPORT..CANCER IN ANY FORM IS NO JOKE AND I AND HERE FOR SUPPORT JUST LIKE EVERYONE ELSE....LETS STAY FOCUS ON OUR REASON WE ARE HERE... TO SUPPORT EACH OTHER.  AND I HAVE NOT BEEN TELLING ANYONE HOW TO FEEL JUST TRYING TO GIVE A LITTLE POSITIVE ENERGY ON A TERRIBLE THING THAT WE ARE ALL FACING IN ONE FORM OR ANOTHER...SORRY IF YOU TOOK MY KINDNESS FOR RUDE  I APOLOGIZE  TO YOU .BUT EVERYONE DO NOT FEEL THE WAY YOU DO..SOME PEOPLE NEED WORDS OF ENCOURAGEMENT I KNOW I DO.... GOD BLESS YOU HAPB MUCH SUCCES TO YOU AND YOUR RECOVERY!

    PRAYERS TO YOU

    BEEPOSITIVE

  • Beepositive
    Beepositive Member Posts: 259 Member
    edited January 2018 #15
    HARP

    THIS IS my last reply to you on this ..sorry if you took things the wrong way.  it was not intended ..support is what im always about.

    hugs   we all have bigger fish to fry then back and forth on this.

    beepositive

  • Shawneek
    Shawneek Member Posts: 1
    #16
    Zeloda

    This is my first time on this site. I had breast  cancer, mastectomy. Chemo and radiation in 2005. I’ve been in remission since May of 2017.  Ow I’ve bden diagnosed with metastatic breast cancer to the liver...  it not a new site, just breast cancer in the liver, Zeloda .. 2 weeks on then 1week off... twice was too strong. My legs got so weak I had to use a walker then I could not even get up out of bed by myself and was put in a nursing home for 3 weeks until I could use a walker. I’m now on kisqali and Famara (letrozole). Ive been on for 3 wks then off a week. No I’ll effects but I still need to use a walker. Rubber legs. Will be able to walk on my own again? Did this happen to anyone else?

  • apntx2ap
    apntx2ap Member Posts: 3
    #17
    Yes. When I was on Xeloda for

    Yes. When I was on Xeloda for just a few weeks I started having a lot of joint pain, which led to me stumbling a lot because my legs and feet. Eventually, it hurt too much to stand and my doctor took me off it. Within a month I was back to normal, if there is such a thing anymore. I personally have gone thru all of the FDA meds and I'm in clinical trials now and I wish you the very best of luck and prayers on this journey.

  • Mariangel43
    Mariangel43 Member Posts: 79
    edited January 2018 #18
    I have breast cancer Stage II

    I have breast cancer Stage II and my sister died from met breast cancer.  She could not tolerate the chemo again so she decided for hospice care.  However, I have been following two young ladies, Nalie Agustin and Emily Hayward, from Canada and UK respectively.  Nalie has Stage IV met cancer (lungs).  Emily has had melanoma for seven years in different parts of her bodies (brain, lungs, breast, hip and leg, etc.).  She's been fighting cancer for a longng time.  

    From them I learned that attitude is important.  If you feel defeated, cancer will win.  I believe that if you have fought for a long time, you will not stop now.  However, is your decision.  You have to decide to take Zeloda or not.  I have always heard that the worst is doing nothing.  And remember that you will never die on the before or the day after, just on the exact day.  I will pray for you dear so you will be enlightened into whatever is best for you.

    Maria

  • anniemshe
    anniemshe Member Posts: 91 Member
    #19
    Crissyma

    Will be praying for you. God bless you . We are all fighting this each in their own way. We all have fear but I guess we plod on hoping for the best.

    Take care 

     

     

  • HapB
    HapB Member Posts: 527
    #20
    Crissymaprq

    I am sorry you have to go through this.  Pray for the strength to try new treatments to see if they work for you.  You didn’t say what treatments that you had when you were first diagnosed.  

     Keep talking to your daughter and let her ask all od her questions. I know what it is like to have had a sick mother and I worried about her for my entire childhood. Let her know how helpful she is to you. Find ways to share simple joys together every day If you can. 

    Keep the faith and hope, but feel free to express real feelings here is you need to. It is not healthy to be told to “be positive” and it is not helpful to anyone to suppress real feelings. We are here to support and listen.

     

    Prayers and hugs to you and your children.

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