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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Would like your feedback: Metastatic Breast Cancer Awareness Day

Topic: Would like your feedback: Metastatic Breast Cancer 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: Aug 31, 2017 11:53AM - edited Sep 5, 2017 12:17PM by Moderators

Moderators wrote:

October 13th is National Metastatic Breast Cancer Awareness Day, a special day to recognize and bring awareness to issues affecting those living with metastatic breast cancer.

We are asking our community members with metastatic breast cancer and those who love and support them to join us by sharing their voices to help educate, motivate and inspire more people affected by metastatic breast cancer:

What is the most important thing you've learned about metastatic disease in this last year? What do you wish more people knew about living with metastatic breast cancer?

You can post here, or send us a private message. We'll share as many of your voices as we can in an upcoming blog post on Breastcancer.org in October.

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Sep 6, 2017 05:01AM Leapfrog wrote:

OK, I'll make a start. Interestingly, my diagnosis was on October 13th, 2016 so National Metastatic Breast Cancer Awareness Day will also be my One Year Anniversary. I've learned so much in the last year it's difficult to pinpoint one thing but, if I have to it's that people treat me differently. Some avoid me, most treat me gently as though I'm a piece of porcelain that could break if they're not careful...which probably has some truth in it! With extensive bone mets and, having had a BMX without reconstruction and having lost weight when I already had a very slight build, I do look rather delicate! There are others who want to see me as often as they can, as though they are afraid I will suddenly succumb and disappear from their lives, when the truth is that, with treatment, I should still enjoy at least a few more years with them. So, to sum up what I would like people to know about living with metastatic breast cancer....I would like people to know that I'm still the same person I always was, I'd still like to be treated the same way I always was, I still enjoy the same conversations, I still like to kid around and make my weak, pathetic jokes which I laugh at more than anyone else does, I'd still like to do the things that they can do but I can't. But the fact that I can't doesn't mean I'm not interested in hearing about their exploits...it makes my life more interesting, even if I do feel the occasional pang of envy.

I have always been philosophical and have accepted whatever life has handed me; I'm practised at this because I've had a lot of challenges and, before my diagnosis, I had been ill for three years; three years with an illness which could not be diagnosed but which was making me sicker and sicker until I was so ill I could not get out of bed, so when at last de novo metastatic breast cancer revealed itself, although that was a shock, at last I had an explanation for why I was so ill. The most important thing I've learned about having metastatic disease this last year has focussed my mind about what really matters in life and what I now believe is that almost nothing really matters if you have your health. This has become almost a mantra for me, although it isn't something I can say out loud because it could easily be misunderstood as envy or trivialisation of others' concerns, but I hear the trivial things that people think are important and I hear them making a fuss over them and I feel as though I live on a different planet now. When you have lost your health and you know it's a forever thing, you need to learn to find your joy in a different way; you need to find happiness on a different level, not attached to the material but belonging in abstract thought and, once you have learned to do this, life is beautiful despite all the discomfort, pain, inconvenience and dependence on others.

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)
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Sep 6, 2017 06:18AM Moderators wrote:

Thanks so much for sharing your experience and words of wishes with us Leapfrog.

Heart

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Sep 6, 2017 12:11PM - edited Sep 7, 2017 09:04AM by Grannax2

Sometimes I feel invisible. Here I am dealing with the biggest challenge of my life and very few understand it or see it, except for my virtual friends here. I'm not a fan of the pink ribbon. It feels fake to me now. Yes, I feel hope in the future but it's different..

I wish there could be more education on what it's like to have and cope with MBC. I don't think we "fit" into the typical awareness campaign that is popular in the media.

I have learned from my 9 months of experience: I'm probably not going to die in 6 more months like my mother did from MBC. My support group is online, on this forum, with ladies from all over the world, not at my hospital like it used to be. I now know I have a lot more to learn than I thought I did, my 25 years of BC did not prepare me for all of the new treatments available now.

Thankfully, I am responding to treatment and I'm so grateful for the ladies and researchers who have persevered to find new treatments.

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Sep 6, 2017 12:45PM Moderators wrote:

Dear Grannax2,

Thank you for responding to our request. We appreciate your sharing your story. The Mods

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Sep 11, 2017 01:29PM Moderators wrote:

Bumping this topic to get more replies.

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Sep 11, 2017 04:37PM Bekadawn1 wrote:

I will have my one year anniversary of de novo stage 4 on November 15th. This year has been a rollercoaster ride of highs and lows. I have learned that I am not as strong as I thought I was and that my husband has become my safety net. Cancer has made my children are afraid to touch me and taken their childhood innocence from them. I only hope that I see them grow up.

Dx 11/15/2016, ILC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, 8/8 nodes, ER+/PR+, HER2- Surgery 11/30/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 2/1/2017 Ibrance (palbociclib) Hormonal Therapy 2/1/2017 Femara (letrozole)
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Sep 11, 2017 05:16PM illimae wrote:

The important thing I've learned is that MBC isn't necessarily the immediate death sentence, I first thought it was.

I wish people would remember that there is still no cure and that MBC'ers are never done with treatment, even if scans look good, progression is always possible.

I feel good but I'll never ring any bells.....

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/19/2017 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 11, 2017 09:20PM marylark wrote:

I wish the medical profession would be more willing to join me in the fight, not just walk me toward my demise. I wish the pink ribbon folks would spend their money on MBC.

Dx 5/1/2015, IDC, Right, 5cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Chemotherapy 5/13/2015 Taxol (paclitaxel) Chemotherapy 8/12/2015 AC Dx 4/2017, Stage IV, metastasized to bone Chemotherapy Xeloda (capecitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole)
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Sep 12, 2017 02:29AM TarheelMichelle wrote:

I've learned how important it is for me to prioritize friendships with other positive, intelligent metastatic women. During this past year, I appeared in videos with three other women to share our advice and experience about metastatic breast cancer. A link to the videos is at the end. I gained so much wisdom and energy from those women. I consider all breast cancer patients my brothers and sisters, but I've learned to be more selective about who gets my free time. No more overinvolvement with gloomy patients who don't even know the names of the drugs they are taking, or listening to early stagers who boast about crushing cancer when they technically only had it for 3 weeks. I will develop the best version of myself through spending tim with women who share my diagnosis and similsr aspirations.

And finally, I wish more people knew how unpredictable life expectancy is with metastatic breast cancer.

https://www.us.kisqali.com/metastatic-breast-cance...



Ronda - Extensive mets to lungs & bones. 9/13, subcutaneous skin mets. My life is Stage IV precious. Celebrating 6 years with Stage IV 12/2017. Ev Dx 2/14/2008, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/11/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 4/17/2008 Dx 12/19/2011, Stage IV, metastasized to bone/lungs, mets, ER+/PR+, HER2- Hormonal Therapy 1/31/2012 Aromasin (exemestane) Hormonal Therapy 12/19/2012 Faslodex (fulvestrant) Hormonal Therapy 7/16/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/24/2014 Reconstruction (left) Radiation Therapy 11/21/2014 External: Bone Targeted Therapy 11/17/2015 Afinitor (everolimus) Targeted Therapy 5/20/2016 Hormonal Therapy 6/1/2016 Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 12, 2017 02:28PM Moderators wrote:

bump, again ThumbsUp


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Sep 12, 2017 03:02PM BeagleMom3 wrote:

I am newly diagnosed with MBC, and I think perhaps my oncologist has made it seem less serious than it really is. She likened it to having high blood pressure. If you have high blood pressure, you're monitored by a doctor and you're on medication, but you'll never be off the medication. I'm frightened because I really thought I had beaten the Stage IIIC cancer I had that had been diagnosed in 2010. Then, my cat jumped on my hip in bed and I felt some tenderness there -- not pain, just tenderness. I made a mental note to talk to my oncologist about it the next week when I had my regular appointment with her. I did, and she said she didn't feel anything and I wasn't having any symptoms, but she ordered an abdominal ultrasound just to be safe. The ultrasound found two tumors in my liver (obviously, nowhere near my hip), and the roller coaster began. Biopsy, chemo to shrink the tumors, and now Ibrance and Letrozole as a possibly permanent protocol.

I'm a single mom to a 17-year-old high school senior boy. I also have a friend of his living with me for this senior year because his parents moved out of state. I want to see my son get married and I'd sure like to meet my grandchildren. Upon reading the Ibrance literature, however, I noticed that it has only slowed the growth of MBC for two years. I'd sure like to live longer than that. I'm also not certain what to expect with the Ibrance. I had horrible joint pain and weight gain with Arimidex when I was on it for seven years; I'm assuming the Letrozole will be similar.

I am blessed to have colleagues who are caring and nurturing, especially when it comes to my breast cancer. I wish everyone could understand just how scary facing MBC can be, regardless of the assurances I receive from my oncologist, especially when this is located in my liver. I wish I could see into the future to know just how long I have, but then again, maybe not.

Perhaps I'll have learned more in a year; I hope so. This is all very new to me, and I'm still not certain what to expect.

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Sep 12, 2017 03:16PM Moderators wrote:

Hi Judy and thank you for joining and sharing your story. We're so sorry that you find yourself here, but we're really glad you found us! You're sure to receive amazing support here -- in fact, the Ibrance thread is a wonderful, active thread where many members share their experiences with taking the drug and how it's been working for them. We hope you'll join in there, say hi, and share your story.

Looking forward to hearing more from you soon!

--The Mods

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Sep 12, 2017 03:57PM ShetlandPony wrote:

Judy, I responded to you with a private message, so as not to take this thread too far off topic.

SP

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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Sep 12, 2017 09:17PM exbrnxgrl wrote:

Ah, so much that could be said... The biggest thing I wish others understood is that MBC is the only type of bc that people die from, and they still die in alarming numbers. Due to pink washing, a surprising number of people believe that breast cancer is very curable and you have no worries if you get regular mammograms and do self exams. They are stunned to find out that about 40,000 still die annually.

I have lived with MBC for 6 years, and live a, mostly, normal life. I am fully aware of how lucky I am, but am equally aware that I represent the minority of those with MBC . The sad truth is that most of the women dx'ed with MBC at about the same time as I was have passed away, so I would hardly consider it a chronic disease for most. One day in October dedicated to MBC? It seems that people don't need bc awareness, but rather awareness and research in to the only type of bc that people actually die from. Why is MBC still so hidden from public view?

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole)
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Sep 12, 2017 11:38PM - edited Oct 3, 2017 01:56AM by jensgotthis

I've learned to not put my happiness on hold.

Jennifer, 42, Los Angeles Dx 12/3/2015, IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone, Grade 1, 0/12 nodes, ER+/PR+, HER2- Chemotherapy 1/5/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2016 External: Bone Hormonal Therapy 5/23/2016 Surgery 5/25/2016 Lymph node removal: Left; Mastectomy: Left Targeted Therapy 9/14/2016 Ibrance (palbociclib) Hormonal Therapy 9/14/2016 Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy
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Sep 13, 2017 12:05AM molliefish wrote:

I will start by saying at this point I am not mbc but a good family friend is.. She was diagnosed almost exactly a year after me, with TN BC. She took a little more agressive chemo than mine, and we ended radiation almost exactly the same day a year apart. She and her husband and 8 year old daughter were planning their one year from diagnosis victory type trip for June this year when they had to cancel so she could be treated for brain mets. Shortly after her scans revealed mets to the liver lung and chest wall also. She recommenced chemo and about 2 weeks ago now, underwent subsequent scans that show NEDin the brain. That is pretty exciting but overshadowed by our conversations about how they live 24 hours at a time. Every day I wonder (if just for a second) when the other shoe will drop for me, or worse yet for my 15 year old daughter. I follow new treatments and research quite closely and I hope for the best for all of us.
Dx 5/24/2015, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 6/8/2015 Lumpectomy: Left Chemotherapy 8/14/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/10/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast
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Sep 13, 2017 06:19AM - edited Sep 13, 2017 12:33PM by Moderators

Thabks so much for sharing your stories exbrnxgrl, Jen, and Mollyfish.

Keep them coming!


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Sep 13, 2017 04:04PM Moderators wrote:

and bumping again, since we really want to hear from more people.

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Sep 14, 2017 01:23PM Waitingforspring wrote:

Hi my story began on January 5, 2013 when I found a lump in my left breast and boy did it hurt.

Of course this was on a Saturday but I warned hubby that we were in for a roller coaster ride. Got on a very fast tract for all of the testing to be done. Stage 2b of a triple negative tumor. I had chemo first surgery on May 3rd then radiation all summer. I did all I was asked to do and was told it was gone. Gone but not forgotten. This past Chirstmas Eve I had an awful pain in my head and mentioned to hubby that I had this with numbness on my right side. Went to my primary care couldn't find anything nor would she ever had found this. I was taken to the ER mid January of this year. I had set same triple negative tumor that metastizized to my brain, liver and lung nodules plus blood clots in my right lung. Stage IV here we are. The brain was operated on Jan 19th of this year right cerebellum where the large tumor was removed. There was a small tumor on the left front of the brain. Radiation of the head was begun. Then a visit to my mdical oncologist I am on Xeloda 2500mg for two week so then one week of rest then we start all over again for the rest of my life. This week my radiation oncologist told me there were no new tumors in my brain,the left lesion is just about gone and the hole in my brain is clear of any cancer.

I don't let cancer define who I am. I continue to be very active but in the things that make me happy I am very blessed

Cheryl Chemotherapy Xeloda (capecitabine)
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Sep 14, 2017 03:52PM dlb823 wrote:

The most important thing I've learned is that having an onc who deals with a lot of mbc patients and is up on the research because they attend all the major oncology meetings and are probably involved in mbc research themselves, can make a big difference in how we are viewed, our tx recommendations, and even our outcome. Sadly, I've observed that too many local, general oncs just don't have the same survival vision for us as those at the larger, NCI-designated medical centers do, nor are they as on top of the latest mbc research as those who are immersed in treating only mbc are.

The second most important thing I've learned is you need to get control of any pain you're having so that you can get your head into thriving -- not just survival -- mode. If we are not committed to thriving, our support team probably won't be either. MBC is probably as much a mind game as it is a physical disease.

And because this question is from BCO, the importance of community support can't be overlooked. I'm pretty sure there must be stats showing that those who feel supported simply do better than patients who do not have support.

Lastly, I wish people knew how many women die from mbc each day -- something like 113, I believe -- many of them mothers with young children; many of them dx'd de novo -- and that in spite of improved treatments, survival stats basically have not changed in the past 40 years. We need people to understand that all the pink hoopla in the world hasn't and isn't going to change this dismal picture, and what we desperately need is a dead serious focus on mbc and a lot more funding for mbc research. Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Sep 15, 2017 07:52AM Milaandra wrote:

I'm three years from de novo diagnosis and I'm doing fine so far. But even when we are nicely stable the ugly cloud still hangs over our heads...when will the drugs fail? The drugs will fail. When? Will this be the scan that shows progression? What if I end up with progression in an area they don't scan?

All the little aches and pains that people usually ignore become cause for panic and speculation.

People don't seem to know what to make of me. I've had people ask when I can stop taking the drugs. "When I'm dead", I say with a grin. "Oh, don't say that!" They just don't understand. "But you look really healthy"

I hazard a guess that people expected me to die within the year. And some of us do. But if we don't, people seem to think that our condition has been exaggerated. That's just a theory, though.

I still feel very fragile physically. I had a couple of lytic lesions on the spine (one was huge), and they are now sclerotic. Does that mean my spine is as strong as it was before? What if I get into a car accident? By the time I go through weeks of scanxiety then the long wait in the office, when the doctors say "stable" I'm in a rush for the door. I forget to ask these things and no one thinks to volunteer the information.

I also often feel sorry for myself, because I feel I would like to be cared for. Maybe I'm wrong, and it would actually be annoying. :)

But I'm working full-time, taking responsibility for my own health, dealing with the finances and somehow feel judged because I'm less than perfectly groomed and polished and I don't go jogging every night and I really don't want to do any overtime on the weekends and I take the elevator.

No one has ever asked me if I need help. Ever.

To be fair, maybe I'm just good at hiding. After all, I look really healthy... LOL!

Oh, I side-tracked a bit. The most important thing I've learned is that treatment doesn't have to be intense and debilitating to work well. And that there is no way to know in advance who gets how many years. So never pay attention to longevity charts!

Kathleen, 54 - 10/29//2014 posterior fixation L3 to L5 Dx 8/6/2014, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2- Hormonal Therapy 8/8/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/28/2014 Lumpectomy: Left Surgery 10/28/2014 Radiation Therapy 11/23/2014 Bone Radiation Therapy Whole-breast: Breast, Lymph nodes
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Sep 15, 2017 09:05AM edwards750 wrote:

Hope this is okay for me to pose a question about Stage IV MBC. I am not at this stage but a friend is as of last year.

She has an aggressive BC. Last year she found out it has metasized to her hips. Doctors planned to do radiation but a test revealed it was too scattered to radiate the affected area so they opted for chemo drugs instead.

She is currently being treated at the Cleveland Clinic. A recent scan showed it's not in remission as she had hoped so they opted for different meds.

I'm sorry Idk details yet but my question is how do we as her support group help her? What to say? She is coming back home next month. When she texted us the recent results no one responded at least publicly. Of course we are sorry and scared for her and of course praying for her silently and going to church at services for healing.

My heart breaks for her and you guys as well. I have already lost 2 friends to this despicable disease. Hitting way too close to home.

Diane

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Sep 15, 2017 12:41PM - edited Sep 15, 2017 12:43PM by dlb823

Diane, there is probably a better place for your question than this thread from the mods, but I can share some quick thoughts with you. First, while we're all different, with bone mets only, your friend probably still has an excellent long range survival prognosis. Changing meds is a common need. Thankfully, there are quite a few available, and just because one fails, the next one hopefully will work better and for a very long time. Stay optimistic for her. It's also very normal not to know what to say, but don't let that prevent you from being there for her. If she's a good friend, you no doubt have much to talk about with her besides her mbc. Don't let that suddenly define her or your friendship. Many of us live fairly normal lives -- just dealing with a lot of fatigue and some other SEs from our meds, as much or more than from our disease. Let her know you're there for her, that you're praying for her, and look for practical ways to ease her life if she's having physical difficulties, such as offering rides or errands if she needs it. But drop any negativity and doom and gloom stuff. It's not helpful

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Sep 15, 2017 12:54PM Moderators wrote:

dlb823, thank you for your kind, and helpful response to edwards750. edwards750, we do have a forum where you may find some more helpful suggestions: community.breastcancer.org/for... Thanks for reaching out!

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Sep 15, 2017 05:42PM nowaldron wrote:

I have been living with MBC with bone mets for 19 months. As other posters have mentioned, MBC is little discussed when talking about breast cancer. I am a college professor and have not taken any time off from school thus far. Many of my colleagues assume that because I appear and act well, I am cured. I feel the need to educate them that I will never be cured, my disease can only be managed. Often I get horrified looks from them as they must be thinking "how can she walk around knowing she has a disease that will kill her." I have faced many hardships in my life including losing my life partner while I was undergoing cancer surgery - he went home the night of my surgery and died of a massive heart attack at only 56. I have always faced every hurdle as a challenge to be overcome. Though I know I will never overcome MBC, I am determined to live my life with a positive outlook and be as productive a person as I can possibly be. I also think that the pink ribbon campaign while valiant in its efforts, neglects to recognize those of us who won't be cured. In many ways, we are the invisible victims of breast cancer. 

Thanks and good health to all!

Dx 2/5/2016, IDC: Medullary, Left, Stage IV, metastasized to bone, ER+/PR-, HER2+ (IHC) Radiation Therapy 2/7/2016 External: Breast, Chest wall, Bone Targeted Therapy 2/17/2016 Herceptin (trastuzumab) Chemotherapy 2/18/2016 Taxol (paclitaxel) Hormonal Therapy 9/14/2016 Femara (letrozole)
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Sep 16, 2017 08:08PM auroaya wrote:

ahí my name is Aurora and I am in my 4th year since dx stageIV. I have gone through at least 7 different treatments some in combination. The hardest one was Xeloda which gave me horrible bleeding blisters so I had to stop it. But I continue to read thread for Xeloda and happily see that for many it is working with few se's. This only show to prove that my poison maybe your road to NEAD.

I'm currently on IV chemo (Abraxane) since February of this year. My se's are some nausea and vomit and of course I lost my hair. But it's all doable and most importantly it is working!

My advice to anyone facing this terrible disease or someone whose loved one is going through it is to never give up! New medications are being created as we speak which will bring healing to many. However, there still needs to be more research and more funding for that in order to save lives.

My biggest problem in facing MBC is finance. I am permanently disabled and on Medicare. Medicare only pays 80% of my medical bills I don't qualify for Medicaid in Florida because I make "too" much money! Please fix the system!

Aurora


Dx 12/23/2009, Stage IIA, 11/16 nodes, ER+ Chemotherapy 1/10/2010 Taxotere (docetaxel) Surgery 5/5/2010 Mastectomy: Right Hormonal Therapy 9/1/2010 Radiation Therapy 9/1/2010 3DCRT: Breast, Lymph nodes Dx 7/17/2013, Stage IV, 0/0 nodes, mets, ER+ Hormonal Therapy 7/19/2013 Arimidex (anastrozole) Radiation Therapy 9/1/2013 3DCRT: Bone Chemotherapy 3/23/2015 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 4/12/2016 Faslodex (fulvestrant) Targeted Therapy 4/12/2016 Ibrance (palbociclib) Surgery
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Sep 16, 2017 10:11PM Moderators wrote:

We just want to give all of you amazing people huge hugs for all you have been through and have to battle Medicating

Thank you for sharing with all of us.

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Sep 17, 2017 12:35AM artistatheart wrote:

I guess the most important thing I have learned is that everyone is an individual who responds in her own unique way to the disease and the treatments. What happens to one does not happen to everyone. What treatment works well for one may fail completely for another. So I try not to get too upset or too hopeful when I read others posts.

Like Leapfrog I also learned that not much matters without your health. Most of the things I used to worry about just dissolved after my diagnosis. Also, like Tarheel I have become much more selective in who gets my free time. I resent "friends" who haven't called to socialize in years, suddenly wanting to rush in for the "obligation" visit just in case.....I just say I'm too busy.

I would like people to know that the mind portion of this disease is just as hard as the physical aspects. The worry, fear, confusion, pressure to research, figure out finances, try and prepare your family and still squeeze in some living with happiness can be extremely overwhelming.


Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Sep 17, 2017 06:25PM YeuxDeux wrote:

March 26, 2015. 3 am.

No one forgets the day when awareness of the physical imposition of MBC steamrollers your life. Flattened by a set of diagnoses all heavy and all ugly. My husband came back to the hospital at 4:30 am. Since then he's still a tangled mess of blue depression ribbons. I am a pink mess. Pretty? No. Pretty ugly. Could it be much worse? Could be gone. So while I'm here...

I walk in the light of the day, believe my heart and soul and not what anyone else wants me to believe. Perhaps you agree. I ask questions. Lots of them. We have a lot in common. Besides MBC. You and me were born to live on this miraculous planet and have the ability to communicate. Wow! That very fact brings me to joyous tears. Impossible but possible.

The fact of living in this great world against all odds provides the impetus to keep on going. How stupid to take ourselves for granted. My blog canceebus a metastatic breast cancer survivor's web site with more words than you probably will be able to stand, is out in the ether of the web, should you like to read them. Now and again my poems, my essays, my elaborations, and general information show up and wait for life to breathe into them by a reader. Like CPR.

As I've lived so I've come to realize our words are the gift we were given by our cool brain parts. We are born with the ability to grow our words into vocabularies and to know the truth is our "word." And we live by our word, sometimes we even die for it. Our words make music, make laughter, make tears, make love. Our words will be here when we are not. Keep talking.
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Sep 19, 2017 08:25PM Tanya_Djamila wrote:

Stage 4 diagnosis after 13 years of survival is enough to make you swoon. My companions and loved ones are cheering me on from the sidelines with remarks, "you beat it once", "we'll be by your side", blah blah blah. The reality is that all the well wishes are nice and heartfelt but the gurney roles you into surgery, the needle sticks in your vein or your behind, you go in the for a MRI, CAT, or PET scan, radiation burns are on your skin, the nausea, sores, hair loss are endured by you alone, alone, alone. The fear is in your every step. You can see it in the doctors face as he reads your chart. And yet somehow we manage to get up everyday take one more pill, test, side effect and deal with it.

I am still in the beginning of my Ibrance journey and don't know if tumors have stopped growing or shrunk. Inshallah I'll have a PET scan in October. I meet strong women who are crying through the process. They have life and all of its' complications and beauty to look forward to; they weep about the unknown and known. I wonder why I don't cry more often. I am suspended between a PET scan result and a tissue full of tears.


Dx 8/19/2003, ILC, Right, 6cm+, Stage IIIA, metastasized to bone/other, 28/28 nodes, ER+, HER2+ (IHC) Dx 4/19/2017, Stage IV, metastasized to bone/other, 0/0 nodes, ER+, HER2+ (IHC) Surgery 6/2/2017 Hormonal Therapy 6/20/2017

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