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All Topics → Forum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Mets Members: Could you share your insight?

Topic: Mets Members: Could you share your insight?

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.

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Posted on: Jun 22, 2017 02:57PM

Moderators wrote:

Are there instances when you rely on a source of inspiration or a strategy for motivation to help you to get through times of struggle when living with stage IV disease? If so would you be willing to share what you do?

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Jun 22, 2017 06:02PM Bigbhome wrote:

I love nature! If I need to quiet my mind, I go outside and it seems I can always find something beautiful to focus on...birds, butterflies, how the sun shines through trees,etc.

For motivation I have 2 horses and 2 dogs. Taking care of them or plying with them gets me Going. You might laugh but there are days like today, when I don't want to get out of bed, but I have a horse with skin issues and huge needs special medicine done. I got up because I was not going to let him suffer just because I overdid it yesterday. Then the dogs needed to be fed, I had a meeting this afternoon about a local support group I want too start here locally. Next thing I know its late afternoon and I have been productive all day!

One other thing, laughter! This morning a friend posted an old comic clip of Red Skelton. I laughed until my stomach hurt! Find a funny book, a clip of a comedian and have a good belly laugh!

Dx 5/2012, IBC, Left, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Radiation Therapy 4/17/2017 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Ibrance (palbociclib)
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Jun 23, 2017 01:02PM Moderators wrote:

Bigbhome, thank you so much for submitting! All great motivation.

Can't wait to hear from others!

--The Mods

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Jun 23, 2017 02:33PM boysmom5 wrote:

I've created a playlist on Spotify and added songs that I've found encouraging, grounding, or peace inspiring. When I'm having a panicky dayor start to worry, I play a few of those songs to help me get back on track.

Dx 7/11/2016, ILC, Right, 6cm+, Stage IIB, Grade 1, 1/27 nodes, ER+/PR+, HER2- Dx 7/11/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 1/27 nodes, ER+/PR+, HER2- Dx 7/11/2016, IDC, Left, 6cm+, Stage IIIC, Grade 3, 15/32 nodes, ER-/PR-, HER2- Surgery 7/14/2016 Chemotherapy 10/18/2016 Xeloda (capecitabine)
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Jun 23, 2017 03:08PM Moderators wrote:

That's an excellent idea, Boysmom5! Music can be very healing and inspiring!

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Jun 23, 2017 03:59PM Goodie16 wrote:

When I am feeling down or frustrated, I stop and make a list of things in my life that are good and that I am thankful for. I focus on what I have and what cancer CAN NOT take from me.

Dx 4/18/2014, IDC, Left, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 2/2015, IDC, <1cm, Stage IV, metastasized to brain, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Brain Surgery Mastectomy: Left Hormonal Therapy Arimidex (anastrozole) Targeted Therapy
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Jun 23, 2017 04:06PM Moderators wrote:

Great idea as well Goodie! Putting pen to paper to remind yourself of the important things in life. Visual impact is key! Thanks for sharing!

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Jun 24, 2017 02:22PM artistatheart wrote:

My art is what takes me away to another place. Focusing on a beautiful project leaves no room for ruminating on the dark stuff....I feel a sense of accomplishment which is important to me and it is something I will be leaving behind for others to enjoy and remember me.

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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Jun 24, 2017 08:54PM Sadiesservant wrote:

I don't know if this qualifies as a strategy exactly as it is a bit complex but below is the approach I have taken to deal with my ups and downs. I do want to make it clear that there are times, like everyone, when I struggle. But so far, those days have been few.

What's my strategy? I remind myself that each story is unique and that my situation is not dictated by old statistics. I also have a bit of a mantra: 'There are two ways to do this - Crying, gnashing my teeth and playing the blame game, or rolling with the punches, staying positive, laughing and working through the options with my oncologist as if he is a partner in crime rather than only my physician'. Ultimately, I feel that, for me, all the crying, worrying and anger will do little to change this story. If anything, it might have a detrimental effect. Instead I choose to live, laugh and enjoy. (I also refuse to give up life's little pleasures, primarily 🍷.)

Recently a colleague asked me to go for coffee. She has recently been diagnosed with stage IV lung cancer and was amazed at how good I looked (despite the twice weekly drainage of my lungs and the Ibrance fatigue) and my overall positive attitude. I explained my mantra to her and I do think it helped (and BTW she has had some positive news from a recent scan). Ultimately it comes down to one thing.... I absolutely refuse to wallow. Not in my DNA!

Not sure if this is helpful or what you are looking for.


Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/21/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib)
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Jun 24, 2017 08:59PM Moderators wrote:

Love these, thank you!

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Jun 25, 2017 12:48PM Becs511 wrote:

My personal mottos and mantras are "Why am I going through all of this to try and prolong my life, if I am not going to go out and actually live it?" and "I am more than my diagnosis". Repeating these things myself help me during my down days to motivate myself to do "small" or "normal" things, like meeting a friend for lunch or a movie or shopping.

I also find that advocating (being a member of the metastatic breast cancer alliance), fundraiser (Im the op individual fundraiser for The Breast Cancer Research Foundation), and sharing my story and experiences (as a writer and staff member of www.theunderbellyorg) are all motivating. Helping advance research, understanding, and policy for MBC on behalf of all MBC patients, myself included, helps keep me going. Knowing that I maybe working towards potentially preventing others go through what we are all currently going though is a huge motivating factor.

Age at DX: 32. Childhood Leukemia survivor. Triple Positive mets and Triple Negative at the same time! www.theunderbelly.org Dx 5/5/2014, IDC, 5cm, Stage IV, mets, ER+/PR+, HER2+ Targeted Therapy 5/22/2014 Perjeta (pertuzumab) Chemotherapy 5/22/2014 Taxol (paclitaxel) Targeted Therapy 1/16/2015 Kadcyla (T-DM1, ado-trastuzumab) Surgery 6/17/2015 Prophylactic ovary removal Dx 7/1/2015, IDC, Left, ER-/PR-, HER2- Chemotherapy 7/20/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx 2/2016, Stage IV, metastasized to brain Radiation Therapy External: Brain Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine) Chemotherapy Other
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Jun 25, 2017 02:25PM Moderators wrote:

Thank you Becs,

Those are great insights!

Keep them coming

Heart

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Jun 26, 2017 01:00PM mashahinda wrote:


I have a question for people in this forum. I would like to know how, if they had Taxol infusions, they experienced them.

To me, taking a drug that is very hard on the body could be worth it if recovery and healing is the end result.

For me, however, there is no cure--I'd be having the infusions purely and only to prolong life, even a life that could prove to be unbearable because of Taxol side effects.

So, taking such a drug, in order to live sick from the chemo is something I question (for myself), and I'm looking for input from others in such a situation--people who have opted FOR chemo, and people who have opted AGAINST it.

So, if someone out there is on "end-stage" chemo, I'd very much like to hear your experience, whether you are happy with it, how many days during a cycle you're feeling "good enough," etc.

Thank you very much,

Marsha

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Jun 26, 2017 10:09PM - edited Jun 26, 2017 10:13PM by Siegelinde

hi Marsha,

It would help to see your diagnosis info.

I took six rounds of taxotere last summer and lost my hair. It's back now. But found a nice wig, it helped.

Now I take Herceptin, perjeta and xgeva

Chemo affects you in a negative way, certainly, but untreated mets I believe are even more painful and fast if untreated. Chemo side effects are better than a completely unmanaged cancer.

Before I was diagnosed I often thought If it ever happened to me, I would choose not to suffer thru horrible chemo side effects as seen in movies, etc. BUT, chemo has not been as bad as it was in the past, they use things like steroids (which made me feel better than normal!), and they have better anti nausea meds. I never had nausea, but I had the prescriptions filled just in case.

If you are in pretty good shape to begin with, you may do pretty well.

I still work and have never stopped except for treatments, dr visits and vacations, even overseas, lots of walking and so on.

I would give it a shot. You can always bail out and take the gamble on not continuing treatment. But treatment will likely work for awhile, and if you cruise this website, there are a LOT of women living several years plus w grim diagnoses to start with. And living pretty well.

The best shot is asap with chemo. See how the cancer responds, you will likely be amazed.


Dx 10/2013, DCIS, Left, 6cm+, Stage 0, metastasized to bone, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Dx 4/2016, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, ER-/PR+, HER2+ Targeted Therapy Perjeta (pertuzumab) Chemotherapy Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy
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Jul 10, 2017 08:38PM - edited Jul 12, 2017 05:27PM by nowaldron

This Post was deleted by nowaldron.
Dx 2/5/2016, IDC: Medullary, Left, Stage IV, metastasized to bone, ER+/PR-, HER2+ (IHC) Radiation Therapy 2/8/2016 External: Breast, Chest wall, Bone Targeted Therapy 2/18/2016 Herceptin (trastuzumab) Chemotherapy 2/18/2016 Taxol (paclitaxel) Hormonal Therapy 9/15/2016 Femara (letrozole)
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Jul 10, 2017 08:59PM nowaldron wrote:

My work as a teacher has been my inspiration. But, after living with this disease for 17 months, I am starting (again) to feel uncertain. I had a rough go of it as my Mother died in February 2016, I was diagnosed a few days later. I had surgery in April to insert a rod in my femur for stability and, so sad to say, my loving, wonderful partner of 13 years went home after my surgery and passed of a massive heart attack. In the meantime, I have been trying to move on and enjoy my life as it is. My docs are great and I have had rad, chemo and now am on immumo and hormone therapies. But, my question is this, does anybody with MBC just get tired of waiting for it to progress? I don't mean to sound crude or despondent, but I find it hard now trying to figure out my life with this disease. For example, do I go back to school in the fall or take advantage of my disability benefits. I would hate to keep working and then be so sick that I can't enjoy even the basics of life. If I go out on disability, I could enjoy my life for as long as I have it....I know this makes no sense...sort of like my life right now.

Dx 2/5/2016, IDC: Medullary, Left, Stage IV, metastasized to bone, ER+/PR-, HER2+ (IHC) Radiation Therapy 2/8/2016 External: Breast, Chest wall, Bone Targeted Therapy 2/18/2016 Herceptin (trastuzumab) Chemotherapy 2/18/2016 Taxol (paclitaxel) Hormonal Therapy 9/15/2016 Femara (letrozole)
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Jul 10, 2017 09:17PM cive wrote:

Marsha, for my first 18 months as a metser, I was only on an AI, which is very tolerable.  With progression, I'm on Ibrance and faslodex which isn't too bad.  I get fatigued more often but no real side effects other than that and the hot flashes due to estrogen suppression.  I've told my MO that there is a limit to the amount of side effects I'm willing to put up with and will make the choice at some point to not do more treatment and if that will cause my death within a year, go on hospice.  I live in a right to die state so that's also an option.  It's an individual choice, some people keep trying different treatments until the end and some decide to call it quits at a point where the treatment becomes worse than the disease.  We are all different

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Jul 26, 2017 03:17PM NineTwelve wrote:

Last year my family had a series of crises, and I came out of it determined to live and to look for happiness, no matter how awful things got. In those days I frequently quoted Winston Churchill, "When you're going through hell, keep going." (Also, some Zen wisdom, "What's in the way is the way.")

Relax and breathe, I tell myself. Every day, all day long. I need all those reminders. Not everyone does.

I do better when I am focused on the here and now. We have a limited number of days here. All of us. But in Stage IV, we can't escape that awareness. Search for what makes you feel light, free, grateful, happy. Look for what elicits positive emotions. Forgive yourself and others. Be patient, be kind, be appreciative. Be curious, be open.

It's been nearly three years since my stage IV diagnosis, and I frequently forget that I have terminal illness. I feel okay right now, and it's a beautiful day.


Right thoughts, right words, right action! - Franz Ferdinand Dx 9/12/2014, IDC, 4cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 9/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 9/30/2014 Dx 7/2016, IDC, Stage IV, metastasized to bone/lungs Hormonal Therapy 8/15/2016 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 8/15/2016 Ibrance (palbociclib)
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6 minutes ago vancouverdeb wrote:

Hi Nowaldron, I have a similar struggle - what am I supposed to do with my life? I was in hospital last summer for two months when first diagnosed as metastatic. I literally could not stand up and all I hoped for was to get out and to be able to go travelling with my kids - I didn't know if I'd ever leave the hospital (the word 'palliative' was mentioned several times). I was so thrilled to be able to move, and when I was discharged I stopped working and have spent the past year taking my kids to Hawaii, New York etc. I'm going on a cruise in August with my 14 year old son!

it's been a great year and I'm so lucky I was able to spend it this way. In many ways I've come to terms with my diagnosis, I've spent time with friends and family and working on my art, which I love. But I'm finding I need more. I was in the process of going back to school for my CPA when I was diagnosed - but the first few years are lots of work. I don't want to spend the last few years of my life stressing and fretting over something I'll never reap the rewards of. How much time do I have? If I knew I had six months, I'd keep travelling. Dare I hope that I have years? I know I'm lucky because I do have energy and most of my mobility has returned. Still figuring it out....

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