1

(10 replies, posted in General Discussion)

Hi JZ...we sent my brother's tissue sample to a lab in Arizona (TargetNow)...and they compiled a pretty extensive report on what treatments would/wouldn't work for him based on tests using his tissue sample.

More info on TargetNow:  http://www.brucehaney.org/site/default. … ;PageID=50

Hi Mark, my brother had dark urine and fluid retention.  It was discovered that he had a collapsed bile duct at the time and they were able to do a procedure to reroute the duct.  He also had a drain put in to drain the fluid from his abdomen, which was principally made up of lymphatic fluid.

Have they tested your father to see what the fluid is comprised of?  My brother's doctor also had his fluid checked for cancer cells and infection.  (He had neither.)

Is your father in good enough shape to receive additional chemo or targeted radiation?  I would recommend that you and your father create a list of questions and sit down with his oncologist to review what can be done and what the root of the issues are for his fluid retention.

I will be keeping your father in my prayers.

God bless,

Patti

Lanny, I am so sorry to hear of the loss of your dear wife, Cindy.  I wish I could find greater words of comfort to help you through this time.  We lost my brother Bruce 4 weeks ago, and I have an understanding of the grief, emptiness and pervasive sadness that is washing over you right now.  You were Cindy's rock and hopefully you can find solace in the fact that you gave her every measure of your devotion over the past 39 years....especially the last two.  Please know that I will add you and your family to my prayers for collective healing and a sense of peace, and for your memories of Cindy to live on within your heart.

God bless you and your family...

Patti

4

(13 replies, posted in General Discussion)

Dear Gerardo... My deepest sympathy at the passing of your dear and beloved Ginger.  We will be lifting you up in prayer for the healing of your broken heart and the strength of your continued memories to replace your grief.

Know that Ginger is at rest and the struggle is over...We will be keeping you in our thoughts and prayers.

God bless...

Patti

5

(56 replies, posted in Members' Cafe)

Dearest Lainy...you have continued to minister to us...and I had no idea that you were feeling so poorly yourself!  Sorry that I just saw this..and will immediately begin prayers for speedy recovery and subsidence of symptoms. 

Marion, thank you for providing the update this week.  Hopefully Lainy will be headed home today if she is not there already.

Lainy, I will continue with prayers and with lifting you up.  You are a bright light in so many lives!  We need you well!  smile

With love, prayers and hugs...

Patti

Great news Kathy!  So grateful to hear your excellent update!

Patti

Hi Melinda!  This is wonderful news for everyone!  This was the trial that I was researching for my brother Bruce...and one that he desperately wanted to get into.  Unfortunately, he was precluded from entering the trial due to one thing:  the fluid retention in his abdomen.  If only we had been able to convince him to go for the trial last July when he was "fluid-free."

My advice and lessons learned from this is to move fast with entering a clinical trial.  Don't wait until it is too late and you are not physically able to be a part of it. 

I believe, and my brother Bruce believed as well, that this particular trial holds great hope.  If anyone here is interested in talking with Bethesda regarding viability for being part of this trial (they were still recruiting when I spoke with them in early January), the contact info is:

Contact: June Kryk, R.N. (301) 451-1929 ncisbirc@mail.nih.gov (I spoke with June multiple times.)
Contact: Steven A Rosenberg, M.D. (301) 496-4164 sar@mail.nih.gov

Links to more info on the trial:
http://clinicaltrials.gov/ct2/show/NCT0 … mp;rank=48

http://www.cancer.gov/clinicaltrials/se … d=11144799

Wishing you all of the best!  We are all cheering you on, Melinda!

God bless,

Patti

Great news Pam!  We will be keeping Lauren in our prayers!

Patti

9

(13 replies, posted in General Discussion)

Dear Deane,

What a very hard January we both (and our families) have endured!  Your words had a very profound effect on me as I share the same sorrow and gratitude that you described so well. 

I just realized that your mom and my brother entered heaven on the same day and same time:  January 17 at 5:00PM -- Did anyone mention to you the most amazing sun set at that time?  It was on the news in Pittsburgh, and according to family friends, people were pulling off the parkway on their way home from work to capture its beauty.  I like to think it was my brother saying goodbye...and now will include your dear mom in that thought.

How beautiful that you and your brother are finding ways to honor your mom's name...through generosity and through service!

I will keep you and your family in my prayers, as well, for continued healing and peace.

With love and God bless,

Patti

Dear Beverly...my condolences on the loss of your father.  What a difficult Christmas this must have been for you and your family. 

Although I do not know of any connection to exposure to chemicals as it relates to CC, I would not be surprised.  It truly is a conundrum why some people develop cancer and others exposed to the same environment do not.  My personal belief is that there are complicated and mitigating factors that line up to create a perfect storm. 

My brother, who passed away 2 weeks ago, was an executive who did not have any exposure to chemicals...unless it was perhaps on a golf course.  (I have actually heard talk some time ago about the danger of golf course chemicals, so perhaps there is merit to the connection between chemicals and cancer.)  However, not all golfers develop cancer.  I personally believe that diet and state of the immune system  and perhaps other factors, have large roles, as well. 

Good luck to you in your search for answers.  Please know that I will keep you and your family in my prayers for peace and healing.

God bless,

Patti

Thanks Lisa & Jennifer!  Bruce wanted so much to help others in this battle.  He truly does leave an amazing legacy of selfless acts for others...I am so proud to be able to call him my brother.

Best to everyone in this continued war on a dreadful disease.  Keep the faith!

Love,

Patti

Lisa, prayers and healing thoughts being sent your way!

Thank you Darla & Julia...Your kind words are a solace. 

Love and God bless,

Patti

Thank you Lauren and Pam!  Bruce's greatest quality was that he thought of others first...always.  Although he is no longer with us physically, his legacy will help others to continue the fight...

Love and God bless...

Thank you, Randi & Kris, for your kind words and compassion.  Bruce was truly (and I mean this with all of my heart) the kindest, most generous, and bravest person that I know.  He was also (along with my husband), my best friend, confidant, and sage advisor...I am having a bit of trouble figuring out how to move forward without him, although I know that he would want all of us to forge ahead. 

Truly, thank you all for your assistance and advice over the past 3.5 years...and for your heart-felt and kind sympathies now when I need them.

Once I get past the deluge of tears, I will be back to add more info (some lessons learned over the past 5 months) that may help others who are fighting this most dreadful disease.

With love and God bless,

Patti

Thank you Lainy!  You have been an angel providing support, hope and encouragement as we made this journey with Bruce...and are now providing comfort and solace.  The blessing from the book "Benedictus" by John O'Donohue, which you provided, is beautiful and touches me deeply.  Thank you for sharing!

Although my heart is broken, I am grateful that Bruce was in my life.  To have never known or loved him would have been the greater tragedy.

Bless you for all that you do...

Dearest friends, it is with the heaviest of hearts that I share with you the news of the passing of my dear brother Bruce.

Bruce fought the most courageous battle against cholangiocarcinoma over the past 3.5 years, after being originally told that he would only have 4-6 months.  He was a beacon for many fighting this terrible disease.  Bruce's cancer was diagnosed after a routine physical in 2009. He did not shy away from the battle and used the setback to help raise a half-million dollars for the Raizman-Haney Endowed Fund to finance liver cancer research. This fund will be used to teach and train surgeons to work with bile duct cancer.

Bruce went peacefully January 17th, not in pain and at home. Bruce was a brilliant meteor blazing across the sky - flashing with beautiful and amazing light, but gone too soon. Our hearts are so heavy with grief...but filled also with gratitude that he is home and safe.

Please lift up my family and Bruce's many family members and friends in prayers for strength and healing. We loved him so! And OH did he love us! I will miss you always, dear brother...until we meet again...

mommysgirl wrote:

Hello everyone. I'm so excited for each and every one of you and to read your milestones is encouraging. My mom was diagnosed with CC July 2012 and is doing good.  She's getting ready to start her 4th cycle of gem/cis.  Her oncologist even told us her CT from 3 weeks ago was better than he had expected.  For this our entire family is grateful.  I was hoping some of you might be able to also share what helped or is helping you get and remain either symptom or cancer free? Was it a change in diet, Whipple, resection? We continue to pray for the day she will be told she is cancer free. 

Lots of love, Zonia.

-----------------------------------------

Hi Zonia!

Here is a post that I started a while ago which does list some of things that we have done to help Bruce fight this disease.  I believe that there is no magic silver bullet, but that a multi-prong attack on all fronts does help.

http://www.cholangiocarcinoma.org/punbb … hp?id=6261

Good luck and God Bless!!!

Patti

Hi Marion and PCL...thank you both for the thoughtful responses.  It has been a very wild past three months, and I have not been as good at keep my various websites, blogs and threads up to date.

Bruce is now over 3 years since his diagnosis of cc.  As you might remember, at the time of diagnosis, Bruce was told that he had 4 months and was pronounced inoperable.  Being who he is (the quintessential fighter) he found someone to operate and here is he.  His cc came back in August and he has had multiple procedures and chemo's to eradicate the tumors:  cyber-knife/targeted radiation; systemic gemzar/cisplatin; chemoembolization  (chemo delivered directly into liver); and then a new chemo - Erbitux.  His body was basically assaulted. It was so hard to watch him so weak and suffering from the effects of the treatments.

His platelets dropped, causing his exhaustion and weakness, and he has fluid retention (ascites) in his abdomen.  The fluid is caused by low albumin levels, which in turn causes the capillaries to leak fluid into surrounding tissues.  All of the symptoms that Bruce is experiencing have been caused, we believe, by the chemo (and perhaps along with the radiation.)  His platelets actually dropped to 10 (should be 200) - causing him to require 2 platelet transfusions.

We stopped the chemo treatments in order to allow his body to heal & strengthen - which is now happening.  His platelets, as of this past week, are 173 - and his fluid levels have dropped some.  His blood work was actually remarkably normal and he is beginning to sound like his normal self.

Bruce's biggest concern right now is that his CA199 spiked from the normal range (where it had been for most of the year) to 135.  This past week, it dropped to 125.  They drew some of the fluid from his abdomen to test for cancer cells, and we are awaiting to hear that news on Monday/Tuesday.  The last time they tested the fluid (a month ago), it was cancer-free.

Hence, I was hoping to find out where others' CA199  markers were during their long stretches of beating back this disease.  It might ease Bruce's mind a bit to know that 125 is not a horrible number.

I cannot begin to thank you all enough for this wonderful website, discussion board, shared knowledge and support...it has been a bright light in our uncharted navigation through very rough seas!  THANK YOU THANK YOU THANK YOU!!!!

With love always,

Patti

Hi folks!  Just wanted to ask a question of those who have been surviving cc for a few years.  Where is your CA199 marker?  Has it been in normal range (0 - 33) or high?  My brother Bruce has now been battling cc for over 3 years, with his CA199 in normal range for almost a year.  He went through a very rough stretch the past 3 months but is doing better this week.  His CA199 took a leap about a month ago and is now around 127 (down from 135 last week) - but he has not had chemo in weeks.  Just wondering if we are hoping that cc can be treated more as a chronic disease, rather than a fatal one, whether a higher CA199 matters.  Thought that I would check in to see what others think.

Dear srengle,

You have my deepest sympathy for your loss.  You are right:  this disease is devastating...  Please take comfort in knowing that he went peacefully with your family surrounding him...and know that you have many here on this "board" who share your sorrow.

May God bless you with excellent memories and healing of your heart.

Love,

Patti

PS -- Bruce is also meeting with his team of doctors in Pittsburgh this week to review options going forward as they see it.  He spent quite a bit of time yesterday talking to his surgeon (Yes, on a Sunday! - Dr. Marsh is an incredible, compassionate and passionate human being...extremely dedicated!).  Bruce has been off of the chemo (gemzar/cisplatin) since July and has had some reoccurrence of tumors in his liver along with some FDG avid areas in his abdomen.  Dr. Marsh is proposing a different approach which we will need to review with Dr. Marks (Bruce's oncologist).  We also have been consulting with Dr. Sun, who is an expert in CC.  We will be holding a very intense family pow-wow once we have all data from the Pittsburgh team and CTCA.

Although my brother Bruce is receiving excellent care from his team of doctors in Pittsburgh, and although he is still with us after more than 3 years in the battle (having been told initially that he only had 4 - 6 months to live), we are going to be exploring CTCA in Philadelphia for options going forward.  Why? Because after all of this time, we do believe that there is still a missing piece of "medical oversight" - which looks at Bruce's body & mind systemically, integratively and holistically.  And because we believe that we must be constantly vigilant and constantly assessing all options.

Here is the information on the integrative approach from their website:  "At Cancer Treatment Centers of America (CTCA), integrative cancer treatment isn’t a buzzword or a recent trend. It’s what we’ve provided to our patients since 1988.
Unlike other hospitals and treatment facilities, at CTCA you will find a comprehensive and integrative approach to fighting cancer—all under one roof. Our integrative cancer treatment expands the boundaries of conventional care by bringing together traditional tools for fighting cancer, such as surgery, radiation,chemotherapy, and immunotherapy, with supportive therapies, including nutritional support, naturopathic medicine, mind-body medicine, oncology rehabilitation, pain management, and spiritual support.

We are committed to treating all of you—not just your disease—using leading-edge medical technology and innovative medical therapies. With our unique approach, we aim to fight your cancer on all fronts, and with every available resource. Your care team members collaborate on your treatment by sharing essential information and collectively determining the best treatment plan for you."

Bruce plans to call them today.  I will let you all know what we discover along the way.

Best wishes, prayers and love to all of you in your own battles and searches for answers.

God bless!

David and Lisa...this is wonderful, fabulous and joyous news!  Thank you for sharing!  We will continue with prayers for Lisa's health.  Wishing you both all of our Lord's blessings...

Patti

25

(187 replies, posted in Hospitals)

Thanks for the comments, Lainy and Lisa!  Bruce has had a very rough past month...he has been exhausted (could hardly lift his head), had chills, fevers and some pain.  Also, some "distention" in his abdomen.  He has been around the barn with his doctors and in the hospital...everyone looking for an infection and not finding it.  The only news we did come up with was that his hemoglobin levels were low which contributed to the exhaustion.  They did give him a blood transfusion and we added more iron to his diet.  He has also had some reoccurance: (small) tumor in his liver and a lymph node that "looked like it might be cc" so they have been radiating those spots.  Because of low platelets, Bruce has been unable to take chemo (gemzar/cisplatin) which has been excellent at reducing tumors or keeping at bay.  Bruce's CA199 has been around 10-14 for the last several months which is great.  Bruce had his CA199 checked last week (worried, as he has not been on chemo) and it has moved up to 33.  Still...it is at the high-end of the normal range.

After meeting with Dr. Sun, he informed Bruce that his distention is being caused by low albumen levels which cause fluid to build up in cells.  He wants him to take a protein powder to raise those levels and add more protein to diet.  He also told Bruce that the chills & fever are what he believes to be cholangitis...which we had suspected...but the other doctors had ruled out.  He said that it was hard to diagnose the cholangitis (I believe these are his words) because it was "contained" in the liver.  He wants Bruce to complete the radiation and them will start him on a new chemo regimen...which I will provide more details when I have them.  The best news of the day was that he "had answers" for my brother on why he felt so sick...and my brother sounds like a "new man."  He just needed a good dose of hope and Dr. Sun provided it.  I will write more when I know more.  On with the roller coaster ride...

Love and God bless!