BAD DAY-BONE METS PROGRESS

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Maryiz
Maryiz Member Posts: 975
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I learned today that I have progressed on Faslodex with multiple bone mets in my spine and ribs.  I have been very hopeful of new treatments, new therapies and new vaccines on the horizon.  Today, I feel less hopeful.  I don't know what to hang on to.  I see right now, just more radiation and more chemo for the rest of my life.  I am sorry, I feel like a farce, I was such a good cheerleader for awhile.  I don't feel optimistic today.  I try to put a good face on for my elderly mother and my family.  My husband sees my tears.  My oncologist is pretty black and white.  He doesn't try to boost my morale with hopes of a cure or new therapies on the horizon.  In essence, it is what it is.  I hope you will forgive me for these negative thoughts.  Today just isn't the day.  You all are so loving and supportive.  I am sorry for the post.  Maryiz

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  • everyminute
    everyminute Member Posts: 1,805
    edited February 2009

    Never apologize.  You are so encouraging to others and now need some encouraging!  Hugs.

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  • Pattyb0639
    Pattyb0639 Member Posts: 35
    edited February 2009

    Dear Maryiz, please don't apologize, that's why this group is here.  I am going thru something similar so I can empathize with you completely.  Have you tried other AI's?  The bone mets can be treated with rads (today was my last day for such tx to my spine).  Your profile doesn't say what your dx was but regardless, there have to be other options out there for you.  Have you looked at any clinical trials?  If your onc isn't giving you the support and encouragement you need, go get a second opinion!!!  I recently switched oncs and it was the best decision I ever made.

    We can't be optimistic all the time and no one really expects us to.  I'm also a "cheerleader" type and it can be pretty draining can't it? My heart goes out to you as I know how sad you must feel.  Today is a bad day but tomorrow is a different day.  It comes down to more decisions on your part and that is the most difficult thing.  I am debating chemo or no chemo and I go back and forth every day.  We will make it thru this and I want you to know that I and all these wonderful sisters are here for you.  God Bless.

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  • EWB
    EWB Member Posts: 2,927
    edited February 2009

    everyminute is right. This is where we can come and say whatever is going on, whats in our hearts. I am so sorry for the progression and pray the docs find the right combination or treatment. Take it one day at a time and know you are not alone.

    Gentle hugs and sweet prayers.

    Elaine

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Thank you everyminute, patty and EWB. I am ER positive.  I have tried Tamoxifen, Arimidex and Faslodex.  I feel like the Als have been patch therapy for me.  The Arimidex just about killed me and sucked my bones dry.  I feel I need chemo now.  I am not looking forward to it.  I want there to be a prize at the end, like you were having a baby and nine months later, after the battle, there was something so special to look forward to that it made it all worthwhile.  My doctor, I believe, has a time limit in his mind for each drug and its efficacy.  Why can't one work for a long, long time?  Isn't that possible?  That is why I have lost some zip.  He is not one to pep talk.  I just don't know what to hang on to for the future.  All of my shoes have dropped.  Thanks for the encouragement.  I really need it.  Love, Maryiz

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  • jancie
    jancie Member Posts: 2,631
    edited February 2009

    Maryiz - I am so sorry and I know those words are not adequate enough but I don't really know what else to say.

    I do know that when I am upset and angry, I come here to vent and it helps so much, sometimes just writing out your thoughts and it keeps me from going off on my hubby.

    (((((hugs))))))

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  • cp418
    cp418 Member Posts: 7,079
    edited February 2009

    Mary - sending you hugs.  I know you are on these forums as much as I am trying to read the lastest news. Have you been given Zometa in the past?  The University of Arkansas is starting a vaccine trials this spring for women with mets?  Is there a possibility that you qualify?  It is not for Her2 patients but I believe it is for hormone positive patients.  I will keep posting any news I find - - this disease not only destroys our bodies but our souls - - I hate it.  You have every right to be upset and do not apologize for your feelings.  Hugs Joann

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Joann, I have declined the Zometa.  I know it sounds silly, but I had a broken jaw and I have pins in the jaw.  I know if I did develop osteonecrosis of the jaw it would put me over the edge.  It would be the last straw for me.  I am holding out for Denosumab which is in clinical trials and does not cause ONJ.  You know how lonely this disease is.  I am only able to connect to people that walk in my shoes.  I thought I could endure more.  I thought something dramatic was on the horizon.  I am just having a bad run.  I need hope.  I need to believe there is something now in trials that is truly hopeful, that has longevity.  I talked to someone who did the vaccine trial somewhere else and she has progressed, so I was hoping for something else.  Thanks, Joann, you have been a tremendous support to me.  Maryiz

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  • spar2
    spar2 Member Posts: 6,827
    edited February 2009

    Aaawwww Maryis, so sorry you are going through all this.  We need a cure so badly.  A miracle soon.  I hope this Denosumab works for you and we can't forget prayer because it can work miracles also, have seen it happen.  gentle hugs. sherry

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  • curlieqs
    curlieqs Member Posts: 1,179
    edited February 2009

    No Maryiz! Ohhhh, I am so upset with you. Do you know when Denosumab will be available? Sweet gentle hugs to you..............

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Denosumab is in clinical trials.  I know MD Anderson is doing one of them.  Check their web site and I think it will tell you what phase it is in.  Maryiz

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  • anitach
    anitach Member Posts: 191
    edited February 2009

    Mary,

    I so hate it to hear you are down...... you HAVE been such a wonderful cheerleader to all of us on this board. Always encouraging and giving us hope that a cure is in the pipes. Now you need to be your own cheerleader!!! You will find that tx that will work for you.... I wish your onc. would assure you of that. If he won't maybe you should find a more aggressive onc. that will be more hopeful. I will be praying for you all day today Mary.... not just for your physical healing but mostly for God to grant you peace and contentment and mostly that HE will restore your hope that you WILL beat this cancer!! You are strong Mary.... don't forget that!

    Hugs,

    Anita 

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  • 33skidoo
    33skidoo Member Posts: 1,029
    edited February 2009

    You could try Aromasin.  Its different somehow than Arimidex and Femara, and there are some others that are lesser known.  Radiation completely knocked out the mets in my spine.  Definitely get another opinion.  Hang in there. 

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  • hollyann
    hollyann Member Posts: 2,992
    edited February 2009

    Maryiz  have you tried Zometa and Femara combined?.......My sister's oncologist says there was a trial on this and it proved effective...It was approved last December.....Hugs and good luck, sweetie.....Lucy

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  • apple
    apple Member Posts: 7,799
    edited February 2009

    it is what it is.

    that's such a profound statement for me, which has brought me peace.  I wouldn't trade my life for another.. no how no way. 

    I hate that we must suffer, bear the burden of illness, watch our families suffer, but it is what it is.  I wish you luck, happiness and peace as you bear your suffering.  My sister in law has lived with bone mets for almost 7 years (16 after her initial bc diagnosis)  She continued to teach and has travelled just about EVERYWHERE in the world.  her life goes on and yours will too.

    once again, peace

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    You all are incredibly sweet.  You make me cry.  I just feel this last week that I have lost my way, my focus.  My good friends tell me that 'it's coming."  I do have my faith, but I also know that children die of cancer all of the time.  I have read so much research and do feel they are working on it, but I think BC is a little bit more enigmatic than say testicular cancer.  We have so many varieties.  Thanks for all your posts.  I do search for them. They help more than you can imagine.  Maryiz

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  • Pattyb0639
    Pattyb0639 Member Posts: 35
    edited February 2009

    Hi Maryiz, how are you doing today? Okay dear sister...this has been a bad week and you have tried different AI's but you haven't tried Aromasin.  Many woman go thru this and then bam! one of them kicks in.  You might want to look at the Recurrence and Metastatic group to find these women and read their stories.  I was on Femara, lupron and Zometa for the last two years (lupron because I still have my ovaries).  The Femara stopped working about 2 mos. ago and so I am now on Aromasin, lupron and zometa.  I have been one of the lucky ones with minimal side effects.  I saw the onc today and asked if I should be looking at chemo at this point and she insisted that we should exhaust all the AI's first.  FYI..there is a clinical trial going on at Georgetown which resensitizes tumor cells to AI's.  I don't know what the qualifications are for the trial but it might be something to look into.  When all else fails, the onc says we go to chemo and she was very optimistic that women live a long time (years) with this therapy as well.  SO....don't give up sweetheart and I really think you need an upbeat, optimistic onc!!  By the way, how do your good friends know that "it's coming"?  It sounds like you still have a good fight in you so I hope you will find the strength to get back in there!!  When you can no longer find a good reason to live and you are no longer enjoying your life...you will know.  I'm praying for you. Love and warm hugs.

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Pattyb0639, thank you for thinking of me today and responding so optimistically.  You asked about my friends commenting "it's coming."  I think some of it is based on research and impressive results from different trials, but getting out of trial can sometimes take forever.  However, and a big however, I spoke to someone whose son works for the FDA; mind you, he didn't know I had breast cancer, just that I bought the stamps from him at the PO, and he casually mentioned his son working for the FDA and he said "they have got it" and it should be two years.  Of course my husband chastised me for putting so much credence in this statement, but for lord's sake, the man's son works for the FDA.  Also, the man is not a talker and it was definitely out of the blue that he said this to me.  He is a man of few words and personally, being an Irish Catholic, I felt it was one of my angels.  Of all of the articles I have read, I still fall back to this man and his comment.  This past week with the progression, it just hit me and I felt like will I have a life again and how much.  I truthfully am eager to start chemo because of the multiple bone mets.  In addition to that, there is an article printed in another forum about revising the tenet that Stage IV is not curable, because there have been documented cases of cure with certain chemos for certain people, and then some successful autogeneic transplants.  I want to go for it now.  I am on lupron and declined Zometa because of preexisting jaw problems (broken jaw)  I am sure that this is more than you want to know, but I think I stumbled badly this week and want to get up but don't know if I have it in me.  Thanks for caring. Maryiz

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  • EWB
    EWB Member Posts: 2,927
    edited February 2009

    Maryiz,

    I am so, so sorry you've had a tough week. I wish I had some magic words or wisdom to make it all better but I don't. All I can offer is prayers of faith that everything will work out and hope that the right people will be in the right place at the right time for whatever you need.

    I believe with all my heart that you can and will get thru this, one step at a time, one day at a time. Angels are all around us, we just need to open to them.

    Gentle hugs and sweet prayers,

    Elaine

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  • Pattyb0639
    Pattyb0639 Member Posts: 35
    edited February 2009

    Maryiz, I'm kind of laughing at myself right now.  I thought your friends were telling you that you were dying by saying "it's coming".  I'm so glad they meant a new tx or an answer to all of this!!:)  I think you may very well met an angel in the man that said "it's two years away".  We need hope.  I just read the info on autogenic transplants...very interesting stuff....wish I knew more. By the way, I'm a "good, Irish Catholic" girl myself!!  Where do you live?  I live about an hour from D.C. and Baltimore.  If you ever decide to visit these areas, we have an extra bedroom/bath and you are more than welcome to stay.  Think positive thoughts...I know it's hard!  Love, Patty

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  • anitach
    anitach Member Posts: 191
    edited February 2009

    Mary,

    Please don't forget that just as God sent you an angel at the PO that day, He sends you to us to spread that uplifting news as well!!

    Praying for your positive spirit to come back to you soon!!

    Anita

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Thank you soooo much for your well wishes.  They truly lift me up.  I will continue to research and hope to find newer and better treatments on the horizon.  

    Patty, I am glad I could make you laugh.  I made my husband laugh today when I hung on to the stove for support and I broke the handle on the oven door.  You are all incredibly generous with your outpouring of spirit.  I hope we all can celebrate the cure some day. It is so strange that we are tethered at the hip ( or breast) by this disease.  I feel closer to some of you than I do some of my own relatives.  It is not their fault, they just can't get it unless they walk in our shoes (or bra).  Sorry for the pathetic attempt at humor.  Much love, Maryiz 

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  • cp418
    cp418 Member Posts: 7,079
    edited February 2009

    http://www.drugs.com/nda/denosumab_090218.html

    Hi Mary - I didn't know if you had seen this article on Denosumab.  Hugs Joann

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Joann, thanks so much for that link.  That is why I was not eager to take the Zometa, in hopes that I might be able to get the Denosumab.  Thanks for doing that research, I didn't have that particular article.  I wish I could tell you in person how much I appreciate your support.  Your research gives us all hope for a better future.  Maryiz

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  • anitach
    anitach Member Posts: 191
    edited February 2009

    Mary,

    I am so happy to hear you sounding more like your beautiful, positive self today!!! I hope you can find the strength to keep your faith. Please remember how loved and valuable you are to all of us here on this board.... especially me!! You've always been so generous with your knowledge of Her2 news and helped me stay positive when I wasn't sure if I should be or not. As TripleNeg always says on the METS board - give yourself permission to have hope!

    So grateful for you,

    Anita

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Anitach, I think you are one of my angels, checking in on me and lifting me up in faith.  I read in the paper today that they actually think they can grow human teeth and replace them in humans.  I did always believe this was true;years ago, I thought if sharks can do it, why can't we?  After all, it must be some sort of gene that we don't have.  When I read that my suspicions or optimism for new teeth may become reality soon, I thought why not a cure for breast cancer?  I so hope to be here to celebrate that day.  Much love to you all.  Maryiz

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Maryiz, just wanted to say that I am praying for you.  Please keep us posted on how you are doing.  Also, if you ever want to talk, I can call you.  Much love,

    Melissa

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2009

    Thank you, Aug242007.  I am Irish Catholic, so I love the prayers and I really believe in them.  Hope you are doing well.  Maryiz

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