Re: Daughter of Newly Diagnosed 58yo Mom

Good to hear--- i especially liked your update on the Y 90 as my
husband is undergoing this on Tuesday of this week!

Good to hear about good results.

He had his mapping two weeks ago and all went well there.

Thanks for sharing this information!

dorien

Re: Daughter of Newly Diagnosed 58yo Mom

Aticon -
Sounds like things are going so well for your mother. Wising her - and you - all the best. And the words resection are the best in the world to hear with this disease. We will all be keeping out fingers crossed for February.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Daughter of Newly Diagnosed 58yo Mom

Has it really been a year since my last post? Wow...

Well, the unfortunate news from me here today is that my beloved mother died last Saturday (1115/2014). She was so strong and positive throughout her 20-month battle with this atrocious disease, but the widespread metastasis produced multiple systems failure which her precious body couldn't combat any longer. My heart is broken. Today will be the first of many Thanksgivings without her, and her 60th birthday would have been 1 week from today.

The usual things people say to me are that at least she's no longer suffering; now she's at peace; and she'll always be with me...all this is true and encouraging, but the pain of her loss is still very acute.

For what it may be worth to future readers of this post, here's a brief history of my mom's process. She wanted her "case" to be used to help support the medical community, others who might learn from her experience at all, and people making decisions about treatment options. I'm relaying this in that spirit.

*March 22, 2013: Diagnosed with Stage IV cholangiocarcinoma; mets to liver, lung, bone and lymph
*April, 2013: Neurosurgery procedure to remove diseased C4 vertebrae, replaced with titanium cage
*May-Aug, 2013: Radiation on spine to treat bone mets to thoracic and lumbar regions
*May-Jul, 2013: Started first chemo: Gem/CIS -- completed 6+ rounds; minor liver tumor shrinkage.
*Jun-Sep, 2013: Chemo-embolization and ablation treatments.
*Aug-Sep, 2013: Started second chemo: 5-FU...also completed 6+ rounds. Didn't respond well.
*Sep-Nov, 2013: Started third chemo: FOLFOX...toughest one yet. Lung mets became aggressive.
*Nov, 2013: First Y-90 procedure. Results showed dramatic reduction in tumor markers.
*Jan, 2014: Second Y-90 procedure. Sustained liver tumor shrinkage but caused stomach perforation.
*Jun-Jul, 2014: Prescribed Tarceva for continued tumor shrinkage. Lungs worsened.
*Jul, 2014: Began routine paracentesis for abdominal ascites drainage. Averaged 3 Liters, 1-2x week.
*Jul-Sep, 2014: Prescribed Irinotecan to combat lung mets. Didn't respond well. Declined quickly.
*Oct-Nov, 2014: Constant coughing from lung fluid buildup. Thoracentesis drained 750mL 1x/week.
*Oct, 2014: Took a break from treatments/procedures to contemplate next move.
*Nov, 2014: Met with dr. to discuss immunotherapy. Not proven for CC, only melanoma. $75k/trtmt
*Nov, 2014: Admitted to ER with shortness of breath; oxygen levels 94 (out of 100). Put on O2.
*Nov 9, 2014: Declined to pursue further treatments and elected hospice care (in-home).
*Nov 14, 2014: Hospice was approved and came in to provide a hospital bed, morphine, etc.
*Nov 15, 2014: Died at home, surrounded by her family. She was 59.

I've left out the many, many MRI's, x-rays, CT scans, blood transfusions, blood tests, and visits to specialists, hospital and ER teams. Often her hemoglobin was so low that she required blood transfusions in order to qualify for her next round of chemo. She was greatly fatigued, but never lost optimism or hope right up to the very end. Mind-body connection was always positive and strong. She was a devoutly faith-filled Catholic and this sustained her. She prayed daily for all those afflicted with cancer and chronic pain. She ate very carefully...was essentially on a vegan diet (no meat, soy, dairy, gluten, sugar, or alcohol). She also juiced regularly.

Her care team was primarily supported by:
-Dr. Saeed Sadeghi (Hematology Oncology, UCLA)
-Dr. Lisa Chaiken (Radiation Oncology, Providence St. John's Health Center)
-Dr. Edward Lee (Interventional Radiology, UCLA)
-Dr. Antoni Ribas (Immunotherapy, UCLA)
-Dr. Timothy Weiss (Hospice/Palliative Medicine, UCLA)
-Dr. David Wallenstein (Hospice/Palliative/Pain Management, UCLA)
-Skirball Hospice & Palliative Medicine

If there are any detailed questions or further inquiries that may assist others, I would be happy to share anything that might be of help.

I wish all those who struggle with this terrible illness, and those who love and care for those afflicted, the most heartfelt love, strength, courage, and fearlessness as you pursue your own treatment options and work tirelessly for a cure.

~Stephanie

Re: Daughter of Newly Diagnosed 58yo Mom

Stephanie,

First, I'm so sorry your mom has lost her war with CC.  I want to put my arms around you and hug you until everything gets better for you, if it could.  The pain you feel right now, will eventually lessen, but honestly, it will never really go away entirely.  There will always be days or events that you will find yourself wishing she could be here with you.  But, I promise, you will find strength to get through the days, the weeks and the years, and eventually, look back and smile now and then.

Thank you for posting your mom's history with CC treatment.  I know that there will be many people who access that post in years to come, looking for information

I am headed to Mayo Clinic this afternoon..yes, Thanksgiving Day, for a 3 month consult, blood tests and CT starting at 6:50 Friday morning,  and am going to try to carry your mother's positive spirit with me.  You see..she has helped someone already.....I really needed to see your post today and feel your mom's strength.

Julie t.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Daughter of Newly Diagnosed 58yo Mom

Stephanie I am so sorry to hear of your Mother's Passing. The hurt eventually gets a little softer and really the good times and memories begin to take over.

Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Daughter of Newly Diagnosed 58yo Mom

Dear Stephanie,

I am so sorry to hear of the loss or your mom.  Yes,  the pain is there and nothing anyone says can make it better, but please do try to take some comfort in the fact that at least for her the fight is over and she is no longer going through all the pain and suffering.  She truly will always be with you in your heart and all the wonderful memories you have of her and in time those memories will help your heart start to heal.  It is a long and gradual process and it never truly goes away, but it will slow begin to get better.   You and your family have my heartfelt sympathy at this very sad and trying time.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Daughter of Newly Diagnosed 58yo Mom

Stephanie, My heart goes out to you and I am sorry for your loss.  It is so generous of you to share your Mom's history to help others.  It is greatly appreciated.
Catherine