Looking for hope through your experience

SuzieP

So my outside world is in a blizzard and my inside world is a hurricane. Pathology on Pleural fluid removed yesterday is positive for cancer - so here's the long short of my story....

2008 DX Stage III ERPR+ HER2-, the size of the tumor and one lymph node with a microscopic positive took me from 2B to 3B -
Adriamyacin+Cytoxan+Paclitaxol. 6 years remission on Tamoxifen, then routine bone scan showed lesion on 5th rib. Too small to be retested for molecular structure. Radiation to 5th rib and Femara with monthly Xgeva , two years later, progression to spine and ribs Initially treatment began with Faslodex and Ibrance but new biopsy on illiac lesion came back ERPR- HER2+, so new CLEOPATRA trial of Herceptin+Perjeta+ Taxotere, for six rounds with Xgeva every 3 months, then Perjeta+Herceptin for two rounds until progression to liver. MARIANNE trial in September, two rounds Kadcyla and now progression to lung. MRI on brain scheduled for Sunday and then a trip back to Mayo. Next up if Mayo confirms is Xeloda+Tykerb. My Mayo Doc might have something else in mind - in the meantime, fluid is also being tested for molecular structure.
I am so Distraught - I'm losing hope - this Fucker is dodging treatment! Has any one else experienced anything even remotely similar - can you give me hope?

Tina2

SuzieP,

I'm sorry you've been through such an onslaught. Someone who's dealing with a similarly wily F---er should be along soon. In the meantime, please hang in. Do not give up hope. Everything seems uncertain now, but will feel more promising when you have a new treatment plan in place.

Tina

Bestbird

I am sorry to hear that you are going though more treatments than one might have hoped, and from what you've written about your treatment thus far, it has been the standard of care for your types of disease.

My first thought would be to perhaps consider consulting with a Naturopathic Oncologist in addition to your medical team. Naturopathic Oncologists (NOs) order specific tests that medical oncologists generally do not request, and then use these special test results - along with conventional medical test results and physical examinations - as indicators of the patient's health. NOs will then recommend a customized protocol consisting of supplements, dietary recommendations, and/or other therapies that may help to enhance the patient's health, reduce treatment and cancer-related side effects, and hopefully help suppress their cancer. The patient's integrative protocol is also designed to work with their mainstream cancer therapy. Among Naturopathic Oncologists, those who carry the title "FABNO" (Fellow by the American Board of Naturopathic Oncology) have passed stringent examinations in order to meet the highest standard of the profession.

A list of Naturopathic Physicians by location can be found at: https://oncanp.org/find-nd/

Decades ago, integrative cancer care was nearly unheard of, but it is now becoming more widely available.It is the author's hope that in the future it will become the norm instead of the exception.

I have been working with an NO in addition to my Medical Oncologist for several years, and since we live in different states, we correspond via email and phone. When my husband was diagnosed with prostate cancer, I immediately augmented his conventional care with that of my NO. As is the case with Medical Oncologists, their degree of care and expertise may vary, so you will want to find someone (if you are interested) with whom you feel comfortable.

I hope your next protocol stabilizes and diminishes your cancer for years to come!

sharethehope

Hi Susiep I think they should rename Stage4 bc the yo-yo disease because that's how we seem to live. I think bestbird gave good advise about an integrative onc for supplements. I've had this help from start of stage4. Also if you haven't yet, a cancer psychologist might be helpful. Get all and any help you can. I'm starting Taxol this wed know how unsettling life can be but don't give up. April

LuAnnH

Suzie,

There is nothing worse than hearing the words you have stage IV breast cancer and that it is not curable.  It took me a very long time and lots of hours with my onc to finally realize that dx was not the end of the world.  These boards can help you learn more about what is going on with you.  Bone mets themselves are actually not terminal.  They can be painful and cause lots of damage but they won't kill you.  I have had rads and RFA (radio frequency abalation) on my spine to help spinal damage caused by tx.  I was dx stage IV, since then all this has gone on:

1. 3 or my 4 children where minors
2. in 2007 my oldest started college and my first grandchild was born
3. I had one sign enlist in the Army and spent several years in Iraq and Afghanistan
4. 2 of my children graduated college, 2 are still currently in school with good careers started
5. My family has grown from 4 children adding 1 spouse, 2 significant others and a total of 4 grandchildren
6. In my 10 years with mets I have been in 100% remission for 3 years now

I won't say these 10 years were always easy, I had gone from bone to bone and lung mets but all is gone and scans are awesome.  I spend more time at doctors for side effects from tx trying to keep as healthy as possible so I can enjoy my life.  I was widowed at my stage IV dx and am currently successfully dating.  The current guy things are going really well so I am keeping my fingers crossed!

I have to say Education was my best friend.  I read the boards faithfully whether they pertained to me or not so I help others.  There are conferences help by Living Beyond Breast Cancer (llbc.org), they offer financial assistance for you to attend if necessary.  They are really great especially the ones specifically for stage IV patients.  I met a women at one of them many years ago that was 30 years with stage IV.  You get some opportunity to speak with the specialist in attendance and speaking.  They will not try to dx you but will offer you suggestions to bring up to your onc.

Seeing as how you are on trials is always good, since I was eligible for hormonal tx my onc did that rather than start me with IV tx's.  I do take Herceptin for life and have been on it about 8 years now and will use it til it stops working.  When the mets hit my lungs we used navelbine for awhile and then on to afinitor to restart the hormonals.  If you are uncomfortable with your onc, feel free to get a 2nd opinion, some oncs will actually tell you to if they feel confident about what they have done for you.

I hope your storm calms down and you can get a handle on your new life.  It's just figuring out how to live with the new normal.  It doesn't happen over night and we all take different amounts of time to get to normal.  Don't be afraid to use anti depressants of see a counselor if you think it will help.  I personally have done all of the above and still take anti depressants and have anti anxiety meds that I use with no shame!  So please know what you feel is normal and hopefully things will stabilize and allow you to get a handle on things.  Most of all, trust these ladies that have been around here, they will try to help you get thru this no matter what you need.

1. 
   

sharethehope

Luann so impressed with your responses. helpful & encouraging. Continued good luck with your remission & may it be contagious. April