Crossroads

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nancyh
nancyh Member Posts: 2,644
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hey ladies,

I have a heavy heart, I'm down to the wire on treatments options, there's nothing very good left in the arsenal, only Ixempra and oral cytoxin. I'm scheduled to start Ixempra next week, but I'm pretty sick already and I know it is a tough chemo, so I'm not sure it is worth it from a quality of life perspective, plus I don't think my onc is optimistic it will do much to slow my cancer.

I am leaning toward skipping Ixempra and taking the oral cytoxin. I've had lots of cytoxin in the past, so it might not be effective, but it is an easy enough drug, there's no reason not to take it, in fact I think I can even be on hospice while taking it. My husband and I talked about it last night, but we didn't make any decisions, I think we're both trying to process things emotionally. He feels totally overwhelmed and doesn't want to break down in front of me, which breaks my heart because I don't want him to feel he has to put on a strong face for me, this is harder on him than it is on me.

I sent an email to my doctor this morning and let her know I'm contemplating not doing Ixempra and I have to say the feeling I have is relief. I almost think if I actively make a decision to stop treatment it puts me in control (well, sort of...you know what I mean). If I decline Ixempra, do the oral cytoxin, and maybe even move into hospice, I can end some of the uncertainty and shift gears mentally.

On a slightly different subject, my husband and I are struggling with communication to family and friends. Most of our friends and family don't quite understand where we are. They are so used to me switching treatments, they assume there is always another weapon in the arsenal. It is hard to bring up the subject and while I want to be direct and open, I'm having a hard time coming up with the right words. Any advice on that front?

Thanks for listening, just writing this post is helping me to process things. One of the things I've been struck with recently is it takes courage to start chemo and it takes even more to stop it.

Oh - and since I'm sure someone might bring this up - yes, there is a potential clinical trial. It doesn't open until April, so it isn't something I can do right away. If I'm well enough when it opens, I'll consider it, but it is not on the table right now. We've looked at other trials, but there's nothing worth pursuing at this time. Thanks again for listening.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2016

    Hi nancy,

    We have no words of advice, but just wanted to let you know we're here and sending you all the support you need, whatever you decide.

    ((((Big Hugs)))) to you and your hubby during this difficult decision time. Please keep us all posted.

    --Your Mods

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited February 2016

    I have no words of advice either but I wanted to say that you are truly loved by the community here and our thoughts and prayers are with you. I know that you posted a similar thread a few months ago and it looks like you have done all of your homework on your available options. I do hope that you are able to do the trial in April. I am sending virtual hugs to you and your family, I wish that I had more than that to send.

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  • steelrose
    steelrose Member Posts: 3,798
    edited February 2016

    Nancy,

    I just hate reading this news. I've followed you for years and you're truly an outstanding lady in every way… a friend to us all. I completely understand you not wanting to do a tough chemo at this point. I'm thinking maybe the cytoxin might hold you steady while allowing you to get some strength back for the trial in April? And quality of life is so very important… feeling well enough to enjoy the company of your dear husband, family and friends. As far as how to explain your situation to friends and family… ugh. I'm terrible at that and admit that I've chosen to remain private and elusive. I just don't have the energy for it. I know that others will have suggestions regarding that. Just know that I'm thinking of you and your husband and that I send you much love…

    Rose.

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited February 2016

    Nancy,

    Ugh, it sucks! It's a place none of us wants to be in, yet we all know we'll be there at some point. I offer you hugs and a hand to hold as you make these decisions. As far as telling people, just tell them what you feel comfortable with, even if that means telling them nothing. Quality of life means enjoying your time and being comfortable. Sending positive vibes your way!


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  • Boo123
    Boo123 Member Posts: 182
    edited February 2016

    Dear Nancy, I always follow your posts, and to read this makes my heart heavy too. Sending you love. I wish I could do more, but love is all I can offer, and I hope it is a little crumb of support. Love Boo


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  • AmyQ
    AmyQ Member Posts: 2,182
    edited February 2016

    Nancy,

    Sending you prayers and certainly hope for a miracle or new options. I wish there was something we could do for you. Hugs

    Amy

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  • diana50
    diana50 Member Posts: 2,134
    edited February 2016

    hi Nancy

    Sigh. My opinion is for you to trust what you are feeling inside re:oral cytoxin or Lxempra. Courage to start, courage to change and courage to make decisions.

    The only thing about the Lxempra is lower dose may not be too bad and help with steroids. I kinda got used to it towards the end. Gemzar made Lxempra seem easy.

    I have a suggestion for communicating with people. I set up Carepages.com where you can INVITE the people you want. I couldn't keep up with friends and family. It has its own format and easy to get on. You send invites to whomever; they set up a user name and password. Every time you update it lets the people you've chosen know. That way you can talk about your situation; treatment issues and where you are on the blog. Sometimes easier for people to read and for bus to write then try to explain things to people. I would just say you are running out of treatment options and whatever else you wants I've put in my blog to not call me, leave me messages , boundaries and ways to communicate with me that I could handle without me being overwhelmed. It's a great place to talk about MBC and people can also leave you messages. Etc. carepages.com

    You've been doing this disease for a long time. borh you and your husband have been dealing with a whirlpool of emotions and decions the last 6 years. You both have stepped up and done that. Inside you both know what and how. It just has to work itself out.

    Love to you and husband friends and family

    Diana

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited February 2016

    Nancy, I am so very sorry about your situation and want you to know that I and so many others are so grateful for your encouragement and support all these years. Now it is your turn to accept hugs and ongoing good wishes.

    First, with regard to therapy, Ixempra is reputed to be a very difficult chemo to withstand. Perhaps you might circle back to a hormonal therapy that worked initially and that you've been off for a while. It has been known to work well on some hormone receptor positive patients. Another option is a mbc clinical trial, and you can search here for one: https://community.breastcancer.org/forum/8/topics/835239?page=1#idx_26 Please do not enter site of metastasis or your zip code, as doing so will skew results. Perhaps you may qualify for an Androgen Receptor (AR) trial. If your tumor tests positive for AR, there are several encouraging trials that target AR in much the same way that current hormonal therapy targets ER. You may also want to look at immunotherapy trials.

    Please consider Palliative Care to optimize your QOL. It differs from hospice. Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment. Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home. Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the your doctor. To obtain palliative care in order to manage cancer or treatment side effects, you can speak with your doctor or look up providers providers in your area at: http://getpalliativecare.org/providers/

    With hugs.

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  • NewGardener
    NewGardener Member Posts: 109
    edited February 2016

    Dear Nancy, I am so sorry to read your news. I greatly admire your energy (half marathons!) and thoughtful posts. I agree with your comment that it takes more courage to stop chemo and treatment. I'm glad that you are keeping your quality of life at the forefront as you consider your options. The suggestion of setting up a carepages.com (I've heard of caringbridge.org too) seems a good way to communicate to your friends and family openly yet efficiently. Wishing you strength, and yes, courage. Heather

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2016

    Nancy,

    You have always been dear to me. I have no advice, but know that I am thinking of you and wish you peace and comfort, regardless of which path you take.

    Caryn

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  • terri-c
    terri-c Member Posts: 180
    edited February 2016

    Nancy, you and your family are in my thoughts and prayers. I have no advice either, but I have gentle hugs for you.

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  • pajim
    pajim Member Posts: 2,785
    edited February 2016

    Nancy, I admire you for making the decision not to do Ixempra. Deciding against a treatment is one of the hardest decisions we will ever have to make. I hope I can make that decision with the grace with which you are contemplating it. I hope cytoxan works for you for a while.

    I see two options for telling "people". One is to nominate someone to do it for you. Not your husband. Is there a good friend or family member who can do it for you? The other is (as Diana suggested) a CaringBridge site or something like it. It can be a lot easier to write what is happening (or your wishes) on a page, rather than express them to a person.

    Many hugs and wishing you and your husband the best. . .

    Pam

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2016

    Nancy, I'm sorry to learn of these latest developments.


    In dealing with family, you may want to write what you're feeling down and kind of refer to it when speaking to others. Or begin a caring bridge page, or care pages as Diana suggests.


    The title of this thread is where you want to start in informing others "Dear Loved Ones, it has become apparent that I must share some personal formation with all of you. Please know that although I have had a good run for a number of years with treatments for breast cancer i now find myself at a crossroads. I am at a place where I must make decisions to ensure I have quality of life for what time I have remaining, These are my choices to make and i ask kindly for your respect and support and your prayers. My choices may not be easy to understand when you haven't walked the same journey as me, but I have given much thought to how I want to proceed from this point. I love and care deeply for all of you, so my decisions are not easy ones to make, but they are the ones I feel are right for me in my situation."

    Of course, if this is not how you feel, adjust the words accordingly. If you are speaking to someone on the phone, having your words nearby can help you if you get emotional. Or if your husband is going to speak on your behalf, he will know what to say.

    You are in my thoughts and prayers.
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  • artistatheart
    artistatheart Member Posts: 2,176
    edited February 2016

    Nancy, That must have been a very difficult post to write. It was so eloquent and direct that I think whatever you decide to do for friends and family will be the right choice. I have such a heavy heart right now. You are one of the first people I started to follow on here and you have always been so kind and caring for all of us. I too hope that the old treatment cytoxin surprises you with excellent results and will bring you a lot more time. I am simply amazed at the courageous way you are facing your dilemma and wish you and your family every bit of peace and comfort you deserve. We all care for you so much! I will be thinking of you every day.....

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  • olisad
    olisad Member Posts: 377
    edited February 2016

    nancy,

    Most every night before I fall asleep I pick up my iPad and visit this site. I really don't know exactly why - habit, curiosity, genuine care and concern for women here who have helped me. Bon is right, whatever you decide is the right choice. Now then, talking with family and friends. I know you are surrounded by lovely people, your posts here illustrate that. Start there, with them.You will likely cry more than talk, but those lovely people - lovely women - will listen and give what you need. Help. Talking, explaining, listening to others.And you will in turn give what they need - time. Memories. With you. A few weeks after joining the boards, Konakat, Elizabeth, sent me a note, "girlfriends are the bestest." No one has ever been more right.

    With kindness and aloha, Lisa

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited February 2016

    Nancy

    You sure have been through so much. So many treatments over the years. We all think about how it may go down when our time for options is over or when we decide it is over. I don't feel like I qualify for advise but my thoughts are when telling others you don't need to explain really anything. You don't owe an explanation nor do you need to go through the details of options, etc. I like DivineMrs. thoughts as it really doesn't leave any room for someone to prod or make suggetions.

    My thoughts and prayers are with you and your husband.

    Jen

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2016

    ((((Nancy)))))

    Have you discussed taking estrogen with your doctor? I have come across a handful of people who have tried this. But maybe they have only had anti-estrogen therapy. I can't recall. Cytoxan is certainly worth a try. Hope you get some results with it at least until April.

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  • Xavo
    Xavo Member Posts: 364
    edited February 2016

    Nacy, the situation you are in saddened me. I have read many of your posts and greatly recognized your warmth as a friend, kindness and generosity as a fellow crew in this MBC boat, courage,  strength, wisdom, and success as a fighter. I love you and admire you from my quiet corner. I wish this world had more to offer to you. I hope you would manage to preserve yourself well into April as the least. I believe there are many, many on this forum who feel the same. You are in our loving thoughts...

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited February 2016

    Nancy,

    I can't begin to tell you how this post breaks my heart. I have admired your tenacious spirit for years. I guess the key word there is 'years.' I would never venture to advice you on a treatment plan. Way outside the scope of my knowledge. Only you can decide what is important to you right now, and which of the drugs that have been offered as a possibility will give you the experience that you want to have.

    You have, of course, received very good thoughts from others. I am not as sage, but you know your body. Go with your gut.

    All the best,

    *susan*

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited February 2016

    Nancy, I have read many of your posts since my dx last year. I have always admired you for your ability to give loving support, advice, and comfort to other people on these boards. It saddens me to hear that you are facing such a tough decision now. I will not offer any advice on the decision, for only you know what is truly right for you. I am here just to offer you my prayers and hugs so you can begin to understand how much all of us support you now and will continue to support you in the future. My hope is that the treatment you decide upon will give you the QOL you deserve and want for as long as possible.

    It is difficult to give such impactful news to friends and loved ones. You have received many good options from others on this thread.

    (((Hugs)))

    Lynne


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  • AmyQ
    AmyQ Member Posts: 2,182
    edited February 2016

    Nancy, I'm still praying for answers or clarity but also peace and comfort. Your post punched me in the gut and also broke my heart. I just cannot imagine how you are dealing with this reality right now. I am so sorry.

    Mrs M, What a perfect message for friends and family. No room for misinterpretation. You have a gift for saying the right thing so often.

    Amy

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited February 2016

    I have watched and read your posts for years and marvel at your strength and fortitude. I am humbled by your example of grace under fire. Whatever choice you feel in your heart and soul is best for you and your husband will be the "right one." Standing by you to offer support and love. gentle hugs!

    rosevalley

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  • nancyh
    nancyh Member Posts: 2,644
    edited February 2016

    Thank you, ladies! You're the best, so nice to hear such encouraging words.

    My onc called me last night and suggested we try a low dose of weekly Ixempra and see how it goes. She thinks it is worth a shot and will be lower side effect given weekly. I'll keep you posted, thanks again for the kind responses, you gals are the best.

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  • ConnieJC
    ConnieJC Member Posts: 15
    edited February 2016

    I am praying that the weekly dose works for you and is not too difficult to tolerate. You are such a role model and loved by everyone. I too, marvel at your strength and courage.

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  • Mab60
    Mab60 Member Posts: 487
    edited February 2016

    Nancy, I am fairly new to the stage 4 threads but I can certainly feel the love and support of so many people for you. I hope you feel it as well. You will be in my prayers.

    Mary Anne


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  • BionicBunny
    BionicBunny Member Posts: 146
    edited February 2016

    Nancy-I too will be praying that this is a successful and tolerable treatment for you. Your posts always inspire and bless me. Thank you for doing so much for so many of us.

    Hugs to you and your husband.

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited February 2016

    Oh Nancy...I'm at a loss for words.  I think Bon said it best...you will make the right decision.  From climbing a mountain, to running miles & miles, sailing with your beloved & cuddling the little people in your family, to leading us onward & showing us strength & perseverance....you have truly lived life.  My prayers are the same as each sister's...that this tx will show promise...leading to an April trial...and we will be beside you.  Your family & friends (us) will never want you to leave them...but is it possible that they do know how this disease has progressed, and are afraid to admit it to you?  Is it possible they may find peace in knowing you are at peace with your decision?  I am so thankful for your oncologist's wisdom in treating you, finding new & different treatments when they were needed.  You will know, my friend.  Love to you & your love.

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  • teacher911
    teacher911 Member Posts: 853
    edited February 2016

    Nancy, I will keep you in my thoughts. I am so glad you have a wonderful husband and family and friends to support you through your decision making process. You are well loved here and we will be here to support you always <3 Michele


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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited February 2016

    nancyh, I just read this post and each word dropped the pit of my stomach.  Since I only drop in occasionally I don't feel the heartache and pain this disease is causing so many everyday.  I can honestly say you cannot make a wrong decision here.  I always tell my friends and family that I keep my self informed on the tx options available and what new things are out there so I can always make an informed choice in my next step through this illness.  The one thing I do not want at the end of the day is to look back and say "what if I would have done "x" instead of "y"?"  It sounds like you and your husband have a good handle on that point and no matter what you choose to do is what is right for you.

    I will definitely keep you in my prayers that you are good in whatever choices you make and always for a miracle to happen.  I will keep an eye on your posts even if I don't log in. 

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  • Ohmydarlin
    Ohmydarlin Member Posts: 292
    edited February 2016

    Sending love and prayers!

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