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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Thoughts as we approach MBC Awareness Day

Topic: Thoughts as we approach MBC Awareness Day

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Oct 11, 2017 07:04PM

50sgirl wrote:

I want to tell you a true yet timely story. I received a call from my son the other day. He was on a business trip when one of his associates received a call from his wife. She had just been told that her bc had recurred, and this time it is in her bones. The man had so many questions, and my son began texting me for information. I can only imagine the panic and fear that swept over that woman and her husband as he struggled to find the quickest flights home. He knew he needed to be with her. She felt lost and weak without having him there for support. The next day the questions continued from the couple to my son and then to me as the couple was told of treatment options. They were trying to make sure that what they were being told by her doctors made sense because they were too upset to fully process information by themselves, and they were too overwhelmed to do research. They needed help from someone like me, someone who has been through the nightmare that was just beginning to unfold for them. Luckily, their questions were about basic things that I could comfortably answer, and I think I was able to calm them just a tiny bit and let them know that they are not alone. I know they must still feel so lost. I still remember the day that I was told that I had breast cancer that had spread to my bones. I remember all the feelings I had - fear, guilt, sadness, helplessness, desperation, anger, ignorance. I also vividly remember that my DH immediately put his arms around me and told me that we would face it together. He has never let me down.

So it was, that through my son, I heard of one more person diagnosed with MBC. It is one more too many. How can we end this? I really want to know. Metastatic Breast Cancer Awareness Day is just two days away. We on this site are already aware. When will we be aware of a cure? When will we have an annual event to celebrate that MBC has been wiped out, eliminated, CURED?

My life has changed since my diagnosis. There are some good changes. I appreciate each day more than I used to. I say, "I love you" more often. I take more risks. I am less apt to let trivial little things bother me. I am slower to anger. I laugh more freely. I don't take myself as seriously anymore. I appreciate my family, warts and all. I eat better and exercise more often. I hope I have become more accepting and more kind. Don't get me wrong. In spite of the good changes, I wish I didn't have MBC. There are also negative changes to my life. I will need treatment for the rest of my life, and that is tough to accept. I am never more than 28 days from my next doctor's appointment and/or lab tests. I always worry about results of tests and scans. Actually, worry is not a strong enough word. I feel that the black cloud called progression is always waiting close by. I try not to wonder how much longer I will live, but you know how that goes. I have learned to like the word "stable" but dream of the terms "NED" and "NEAD, two terms that may never apply to me.

I have met many truly wonderful people on this site. It amazes me that there are so many people willing to help strangers without a second thought. Do you know how special you are? Your words move me. I rejoice when you post news of good test results, stability, and improvement, and I tear up when I read about pain or progression. I have suffered and cried to learn of lives we have lost. Some of the people we've lost had become dear friends to me. They gave me support when I needed it most. They gave me advice when they had knowledge I lacked. The losses are personal for me and serve as reminders of the ugliest side of MBC, a side I cannot ignore.

One more thing, then I promise I will end this way-too-long post. I want to thank you all for being here. You touch my life in ways you cannot imagine. Each of you contributes to these wonderful threads even though you might not realize it. You give me strength. You understand my issues as no one else can.Thank you, thank you, thank you.

Love, hugs, and prayers to all of you, from Lynne

Dx 6/5/2015, IDC, Left, 3cm, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/25/2015 Arimidex (anastrozole) Dx 8/9/2016, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 1, ER+/PR+, HER2- Hormonal Therapy 8/10/2016 Faslodex (fulvestrant) Targeted Therapy 8/31/2016 Ibrance (palbociclib)
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Oct 11, 2017 07:26PM Micmel wrote:

Lynne~ you're truly a gem in a sea of rocks!! I think your posting was heart felt and kind. I am sending good thoughts and strength to that lovely couple you speak of. Sending caring warm hugs to you. ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Oct 11, 2017 08:16PM Legomaster225 wrote:

Lynn, that was a beautifully written and honest post. I pray that you remain stable and that research will allow the dreams we all have of being NED or NEAD to become reality. Thank you for putting into words the feelings that many of us share

Dx 12/3/2016, IDC, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 1/19/2017 AC + T (Taxol) Dx 6/22/2017, IDC, Left, <1cm, Stage IB, Grade 1, ER+/PR+ Dx 6/22/2017, DCIS, Left, <1cm, Stage 0, Grade 1 Surgery 6/22/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 8/21/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/17/2017
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Oct 12, 2017 01:35AM - edited Oct 12, 2017 01:38AM by ShetlandPony

Lynne, thank you for your post. Your warmth and kindness contribute so much to our support group here.

My feeling coming up to mbc awareness day is a mixture of sadness, anger, hope, and defiance. I am sad for myself and for all of us and our loved ones. I am angry that mbc research has been neglected and mbc patients made invisible while so much effort has gone into pinkwashing. I have hope because I think the tide is changing and our voices are being heard more. Lynne asks, "How can we end this [mbc epidemic]?" I went to an mbc conference and came back feeling hopeful. There are some amazing activists out there (many of them living with mbc) and they are working hard to educate and influence, and to fund mbc research. Two great groups that come to mind are the MBC Alliance and Metavivor. The National Cancer Institute is now working on statistics to count mbc people in order to demonstrate the need for more mbc research and more support for people living with mbc. I believe we all can find ways to help that suit our own personality and circumstances; for example, joining activist groups, educating others, donating wisely, supporting each other, etc. The defiance is about thumbing my nose at cancer by finding love and enjoyment in my life in spite of it.

On mbc awareness day I honor all of us who endured or are enduring. I feel the sadness and anger for myself and for all of us and our loved ones, but I also feel the hope and the defiance, determination, and willingness to help each other. I feel grateful for our community here and for the caregivers -- friends, family, and medical professionals-- who stand with us.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda
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Oct 12, 2017 07:08AM DivineMrsM wrote:

Fiddies girl,

Yes, too many women are still being diagnosed with metastatic breast cancer. I cannot say if we will ever be able to get that message out to a wide audience thru a media that insists in sanitizing the disease to make it palatable for the average American, and which seeks to minimize women's issues.

Still, knowing our words and our images about mbc may not always reach the masses, we can continue to speak up and speak out about mbc and reach out to those who need info on it when they find themselves or a loved one dealing with it.

Here is a video that was shared on another post:



found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~
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Oct 12, 2017 10:56AM Bigbhome wrote:

Lynn, As usual , you have beautifully articulated what so many of us are going through.

I want to add, from my experience, I had the Oncogenes testing which gave me an 86% of survival with a certain set of treatments. I not only did everything they recommended but went over and above with A/C , which I barely survived. My thought was always, if it almost killed me, surely no rogue cancer cells could have survived. I wish someone had told me that 30% of breast cancers metastasize. There are several things I would have done differently

Also, even though I appreciate the kind thoughts from people when they say "you will beat this", I always want to educate them, and depending on my mood, it could be nicely or not. Now I just do hmm, as I try to remind myself they are being kind.

I previewed another Juliesque commercial for Ibrance and was again appalled at the rosy picture it paints. I want people to understand how many of us there are and that we live our lives from scan to scan, always with the dark cloud of progression hanging over us. Always with the randomness of the side effects of the treatments, living from day to day-to-day, never knowing how we are going to feel each morning when we wake up, or when we are going to hit our wall as the day progresses, and that things affects not only us, but the people were love also.

They need to find a cure for us, or at the very least, better treatments with less side effects. But really, were want a cure! We want to live!

Hugs and prayers

Claudia

Dx 5/2012, IBC, Left, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Radiation Therapy 4/16/2017 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Ibrance (palbociclib)
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Oct 12, 2017 01:49PM 50sgirl wrote:

I have tried to stay clear of the pinktober propaganda as much as possible this year. I have heard several radio promotions. Today I heard that although a cure is needed, the main focus of my state's bc coalition right now is on screening and prevention. (They went on to say that there is really no way to prevent the disease, and that although some eating and exercise recommendations are out there, nothing is guaranteed to prevent bc. I did like that part of the statement since I remember someone asking me if my MBC was due to skipping mammograms or not having checkups. You can imagine how that made me feel right after dx.) The radio interview made me sad to think that so many people still believe that it is acceptable that a cure is not at the top of priorities. I realize that screening is important, but I know first hand that screening does not prevent deaths from MBC. Many MANY of us with mbc followed all the rules and recommendations, yet here we are.

Claudia, I do try to educate people about MBC. I had no idea about it prior to my own diagnosis, so I can't blame people for their lack of knowledge. Those Juliesque commercials do little to educate. I suspect that they do generate requests for prescriptions from patients, but that's probably it. One of my friends did ask me if I am taking Ibrance. She knows that my blood counts tank every month, so at least she is paying attention.

I think that more research projects are beginning to focus on MBC and a cure. Unfortunately, It is likely that no one cure will fit every case of MBC. It seems that we are still learning how many unique characteristics exist for this disease. We see again and again that a treatment that works well for a while for some people is useless for others even though all the people receiving the treatment appear to have the same "type" of cancer. We are still scraping the surface. Since there are so many areas of research now, I am hopeful that cures for all will be found.

Better treatments with fewer side effects until a cure is found? I am all for that! We need more and better treatments that work longer with few or no SEs.

Devine, Thank you for reposting that wonderful video here.

Shetland, Thank you for mentioning our loved ones who suffer right along with us. I feel guilty for putting my DH through this even though the situation is beyond my control. I know he wants to help me, to save me, to make me well, and he feels helpless and frustrated. I can see it in his eyes everytime test or scan results aren't as good as we had hoped for.




Dx 6/5/2015, IDC, Left, 3cm, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/25/2015 Arimidex (anastrozole) Dx 8/9/2016, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 1, ER+/PR+, HER2- Hormonal Therapy 8/10/2016 Faslodex (fulvestrant) Targeted Therapy 8/31/2016 Ibrance (palbociclib)
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Oct 12, 2017 02:57PM Bigbhome wrote:

50'sgirl, The people who have been diagnosed with breast cancers are the ones I really worry about. If I had known more about the symptoms to watch for, the high percentage of MBC, maybe, if nothing else, I would have found it sooner. I'm sure there are many people out there today who are blowing off their back aches, or whatever other symptoms they should be paying attention to due to lack of knowledge.

I hear what you are saying regarding a cure. We see it here on these boards day in and day out how each person's disease are completely different. We also see how each person's side effects on the same medications can be vastly different. Somewhere is the key to all of this in our bodies. We need them to find the lock.

I can't believe not spending precious resources on research. Does that mean they find 30% to be an acceptable amount? Does that mean its ok, as long ad they can save 70%, the status quo is acceptable? Do they feel that we are such a small percentage that more education is not needed? These are questions that make me go hmm.

Claudia

Dx 5/2012, IBC, Left, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Radiation Therapy 4/16/2017 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Ibrance (palbociclib)
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Oct 12, 2017 04:28PM Kandy wrote:

Awww, 50'sgirl, what a sweet post. I have so many of the same feelings. I tear up thinking about all the ladies here. I am truly overwhelmed by the love and caring on this forum. People that not only understand but actually care. Each one of you are in a special place in my heart. It's amazing that even when someone is not in a good place, they still will reach out to help someone else. Amazing. God must have a very special place for people like this. Take care ladies. Praying for a cure.

Dx 1/20/2009, IDC, 1cm, Stage IIIA, Grade 3, 4/9 nodes, ER+/PR+, HER2- Surgery 2/25/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 3/8/2009 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Navelbine (vinorelbine) Radiation Therapy 10/6/2009 Breast, Lymph nodes Hormonal Therapy 1/3/2010 Arimidex (anastrozole) Dx 10/31/2013, IDC, Stage IV, Grade 3, ER+/PR+, HER2- Radiation Therapy 11/17/2013 3DCRT: Bone Hormonal Therapy 12/2/2013 Faslodex (fulvestrant) Targeted Therapy 10/7/2016 Afinitor (everolimus) Hormonal Therapy 10/31/2016 Aromasin (exemestane) Chemotherapy 2/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 5/8/2017 Carboplatin (Paraplatin) Chemotherapy 8/14/2017 Halaven (eribulin) Targeted Therapy
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Oct 13, 2017 12:36PM AnimalCrackers wrote:

Thank you for the lovely post 50sgirl!  

Cathy, diagnosed Stage IV de novo June 2014 (age 52). Bone mets at initial diagnosis (2014). Progression to Liver April 2017. Bisphosphonate infusions (Zometa) every 3 months. Clinical Trial 5/18/17 LSZ102 (oral SERD) and Kisqali (Ribociclib). Dx 6/23/2014, IDC, Left, 4cm, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 6/23/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/5/2016 Femara (letrozole) Targeted Therapy 1/5/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/18/2017 Targeted Therapy 5/18/2017 Kisqali

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