Topic: Life does not end with a stage IV diagnosis (really!)

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Mar 9, 2014 05:42PM - edited Mar 9, 2014 10:14PM by exbrnxgrl

Posted on: Mar 9, 2014 05:42PM - edited Mar 9, 2014 10:14PM by exbrnxgrl

exbrnxgrl wrote:

Our sister, kayrnic, started a thread celebrating being 2 years (hooray!) out from her stage IV dx. I was thinking along those same lines when I read her post.  So often, those newly dx'ed stage IV, think they've been handed an immediate death sentence and panic or plunge into some very dark places. This is understandable, as the dx is shocking and what will happen is a great unknown. After the initial shock wears off and you learn as much as you can about stage IV (knowledge really is power!), many of us discover that, though changed, life can be surprisingly...normal. Before I go further, I fully acknowledge that this is my experience. Others may have very different experiences and I am in no way marginalizing the difficulties they face.

So here is how my life has progressed since my stage IV dx (bone met), almost 3 years ago:

-I continue to work full time as a first grade teacher. I love it and for me, teaching is a calling.

- I walked my younger dd to the chuppah, when she married her lovely husband.

- Sadly, my mother became ill and passed away about 3 weeks after the wedding. I am grateful that I was able to spend most of the summer with my dad as we mourned my mother's passing.

- I have become a grandmother. My beautiful granddaughter will soon be 2 years old.

- I have taken a two week cruise (including very long flight) to New Zealand and Australia. At the end of the cruise, I climbed the Harbour Bridge in Sydney.

- I'll be going on a one week California Coastal Cruise in early April. Winery tour in Mexico, biking in San Diego are on the agenda so far.

My everyday life is largely unaffected by bc, though there is never a day when I don't think about it. I still have to get my port flushed (not on IV tx, but I'm not having it removed, for obvious reasons) . More doctor visits than I'd like, and waking up feeling stiff as a board each day, due to Arimidex. I do tire more easily, but I have the luxury of lots of quiet time when work is done since my children are grown. Let me be clear, I am not bragging about how great my life is or how "easy" stage IV is. I just want others, particularly those just dx'ed with mets, to understand that you could very well have a fairly normal life for some time to come. Lastly, never, ever discount the power of anti-anxiety or antidepressant meds if you need them. I have been on Effexor since my dx and wouldn't be without it. I have no se's from it and it hasn't  dulled or numbed me in anyway. I also keep Ativan on hand to use as needed. Breast cancer will be the end for the vast majority of us stage IV ladies, someday. Don't let it steal your life one day sooner than it has to.

Fondly, Caryn

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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May 5, 2022 08:38PM elderberry wrote:

bigpeaches: Happy Anniversary in advance in case I am not on the Forum tomorrow. Congratulations on 4 years as well.

De Novo - this isn't a "brave battle" - it is a "furious struggle" Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Aug 2, 2022 03:47PM cowgal wrote:

I know that this thread has been quiet all year but I bet that some of us have done some things this year non cancer related. I have wanted to take a jewelry making class for years but unable to do so working full time. Our local community college offered an enameling jewelry course a few Saturdays ago that lasted 6 hours. I wasn't really sure exactly what enameling entailed but signed up and had a wonderful time and now enjoy enameling and learned how to use a jeweler's saw to cut out your designs on metal. The instructor teaches the full jewelry making course so I talked to him about maybe doing that as a series of Saturdays next summer and he is open to that!

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Aug 2, 2022 04:20PM tina2 wrote:

Cowgirl, that's wonderful. Enamel can be gorgeous--the designs, the colors. You can make so many beautiful things!

Tina


Stage I, mastectomy, 1985.Stage I, mastectomy, 1995. Stage IV, lung mets treated with Faslodex 2011-/2018. Treatment hiatus 9/2018-3/2020. Ibrance and Faslodex 3/2020. Faslodex only 11/20. Dx Stage IV, mets, ER+/PR+
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Aug 5, 2022 02:28PM el_tigre wrote:

That sounds like so much fun cowgal!

I went ahead and indulged in watercolor art. Let's make Art website has sales and deals and I bought 2 art boxes. It was fun and the step by step tutorial and some background music made it very relaxing.

tigre

Dx 6/12/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 8/19/2015 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 9/25/2015 AC + T (Taxol) Radiation Therapy 1/27/2016 Whole breast: Lymph nodes Hormonal Therapy 3/8/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 4/15/2016 Herceptin (trastuzumab) Targeted Therapy 12/9/2021 Kisqali Targeted Therapy 3/12/2022 Verzenio Targeted Therapy 6/1/2022 Piqray (alpelisib) Dx IDC, Other, 2cm, Stage IV, Grade 2, ER+/PR+, HER2-
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Aug 5, 2022 02:51PM - edited Aug 5, 2022 02:52PM by dean75

I celebrate all who are doing well in Stage 4. This past Tuesday I had a pet scan that showed that my cancer had metastasized, bones liver and more. My oncologist said that without treatment I would have 6 months to a year to live, and he was being optimistic. He is suggesting Ibrance that might give me 2 or 3 years. I am 76 years old. I am on Anastrozole and suffer from the side effects. I also have severe depression and I am on Sertraline and Xanax. Neither seem to be working. On July 14th, I was diagnosed with shingles which has made everything worse. Before the 14th I was watching my grandkids and living life. Now I am always fatigued and have no appetite nor desire to do anything. This is not what I consider QOL. I am considering stopping all treatment. I am tired of the tests, anxiety, appointments and everything else that goes along with this diagnosis. I am just tired and needed to let this out.

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Aug 5, 2022 04:04PM mocogram wrote:

dean75, you've been hit with a lot in the past few months. I can understand why you are depressed and discouraged. It would help many of us on this forum to give advice if you could fill out the information on your specific diagnosis and treatment.

Everything seems very dark and scary when you are first diagnosed. Once you are over the effects of shingles and have a treatment plan in place, hopefully things will look brighter. You might also consider getting a second opinion. Please check back here and let us know how you are doing. You could also "talk" to people on the bone mets, liver mets and over 60 sites.

Dx 5/2016, ILC, Left, Stage IIB, ER+, HER2- Surgery 7/28/2016 Lumpectomy; Lumpectomy (Left) Chemotherapy 9/19/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx ILC, Other, Stage IV, ER+/PR+, HER2+, IHC Radiation Therapy Breast Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Targeted Therapy Herceptin (trastuzumab)
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Aug 5, 2022 04:41PM exbrnxgrl wrote:

dean75,

I am so sorry that you are facing so many challenges. I agree that a second opinion couldn’t hurt but understand that tx and side effects can be overwhelming. That being said, this may not be the best thread to address what you are going through as we mainly discuss the “normal” life and happenings despite being stage IV. Browse through the stage IV forum and you will find many threads to offer comfort and support! Take care.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Aug 5, 2022 09:20PM sunshine99 wrote:

dean, I'm so sorry. I agree with exbrnxgrl to check out some of the other Stage IV forums. You may find more support from those who are in a similar situation.

(((hugs)))

Carol

my-sunny-side-up.com Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External Local Metastases 5/5/2020 Radiation therapy: Bone Radiation Therapy 5/12/2020 External Local Metastases 5/12/2020 Radiation therapy: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Aug 5, 2022 10:29PM elderberry wrote:

Dean: I am very sorry that you have shingles. It is hideous and painful. My DH had it tice before he got Shingrix. I had my two doses and hope it will save me the anguish. If it helps at all, the chemo for Stage IV is more gentle than the treatments for early stage. They are not out to cure but to slow it down and keep you as pain and symptom free as possible. My Taxol was nowhere near as bad as I have heard it was from early stagers. Yeah, I went bald and had a red face but I was never nauseous to the point of vomiting. In fact, I was barely queasy. Get a second opinion. I hope the best for you.

De Novo - this isn't a "brave battle" - it is a "furious struggle" Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Aug 6, 2022 01:00AM - edited Aug 6, 2022 01:02AM by chicagoan

Dean-Sorry to hear about your diagnosis and especially the shingles. But as this thread maintains-there is life after a Stage 4 diagnosis. I was diagnosed six years ago and am still on Ibrance/Letrozole so you never know your expiration date despite what the doctor may predict. Today life is good-I am sitting on a deck in Denali village in Alaska watching a river flow by. Had a wonderful tour today- saw caribou, moose, and grizzlies! I then took a hike alone in Denali Park-it was spectacular. They warn you not to hike alone but it was raining and no one else from my group wanted to go so I just kept singing so that I wouldn't surprise any bears. Life can be sweet, even with cancer. Hope you have better days.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/27/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/27/2016 Ibrance (palbociclib)

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