1 (edited by Patti77 Sun, 04 Dec 2011 09:17:17)

Topic: What we have learned so far...

We are so grateful for the extra time we have with Bruce and are anxious to share some of the things Bruce has done or is willing to do to provide for a longer, better quality life.  Bruce was originally told that he had less than 6 months.  It has now been 26 months and he is doing very well at the moment.

If I were to sum up in a short list of recommendations, based on our family's collective experiences, I would say this:

(PLEASE NOTE THAT SOMEHOW MY ORIGINAL POST WAS DELETED...SO THIS LIST MAY BE SOMEWHAT DIFFERENT THAN WHAT WAS HERE ORIGINALLY.  But to the best of my recollection...here goes!)

1.  RESEARCH like crazy.  Use the internet as a tool.  Turn over every stone.  Sites like this one (www.cholangiocarcinoma.org) have been a God-send for information and for support.
2.  ALWAY GET SECOND OPINIONS.  If you hear something that rocks your world, make sure that you are getting the same prognosis from as many sources as possible.
3.  BE YOUR OWN BEST ADVOCATE & CHECK ALL OPTIONS!  My brother Bruce was originally told he was totally inoperable...by many doctors!!!  But he finally found one (Dr. Wallis Marsh at UPMC in Pittsburgh) who WAS willing to operate...and he saved Bruce's life!)
     NOTE:  When Bruce was operated on, we had Dr. Marsh send tissue samples to TargetNow (a lab in AZ) that will determine what treatments (chemo & other) work best to eradicate your specific instance of cholangiocarcinoma.  For instance, we found that there were many chemo's and alternative therapies that will work to fight Bruce's CC.  Thus providing, as Bruce likes to phrase it, "more arrows in my quiver!"
4.  EAT LIKE YOUR LIFE DEPENDED UPON IT.  It does!!!  Books like:  Anticancer, A New Way of Life by Dr. David Servan Schreiber; The China Study; Forks Over Knives; etc. give similar information about following an anti-cancer diet with great success.  Bruce has been eating like this for over 2 years, and is doing well...he was originally given 4-6 months.
5.  LET YOUR FRIENDS & FAMILY HELP.  Allow your friends and family to help you.  Your friends and family are looking for things to do to assist you...they love you.  Let them in!  We had friends/family members cooking (using anti-cancer recipes), holding prayer vigils, writing cards (get-well card campaigns with 100's of cards), sending organic fruit, attending chemotherapy appointments, and more.  It is a great way to make them "feel better" so that you can "feel better".
6.  PRAYER WORKS!  Keep praying and solicit others to pray, too.  It does work!  My brilliant youngest brother found a scientific article that is now providing proof that prayer works.
7.  LAUGHTER!  Use humor as a weapon...It is healing!  (Proven fact!) Do everything possible to keep your spirits up...stay around optimistic and joyous people. It has been proven that there is a positive impact from this.  We, as a family, have looked for ways to lighten and brighten Bruce's day...from sending him funny movies in the mail, to playing mild practical jokes. 
8.  TAKING CARE OF THE CARE-GIVER.  We made sure that we were taking care of Bruce's wife Andrea, too.  She is there day-in and day-out facing grim news...and we knew that she couldn't help Bruce if she was struggling herself.  So we took time to relieve her for a few hours, a day, a week at a time, so that she could rejuvenate and come back to her role as Bruce's prime support rested and in a better place.
9.  REALIZE THAT THERE IS PROBABLY NO "MAGIC BULLET," so use MANY alternatives to reach your goal...Yoga, diet, herbal treatments, tea, prayer, support groups, along with traditional medicine.
10. KEEP THE SPIRIT OF A FIGHTER IN YOU.  Use determination and strong will to your best advantage.  As Winston Churchill said:  "Never, never, NEVER give up!"


I believe that this was the essence of my original post.  I will continue to review and add more if I find a particular recommendation that I missed...or if I remember a salient point.

I am also maintaining my brother's website:  www.brucehaney.org.  The full story on Bruce is here:  www.brucehaney.org/brucesstory.

Our entire family is wishing you all well in your journey and your battle!

With love and prayers,

Patti

2 (edited by Jim Wilde Sun, 29 May 2011 09:21:15)

Re: What we have learned so far...

Patti, it's always nice to hear of medical adventures with a good outcome.  I read elsewhere about Dr Marsh and what he accomplished.  There are not many surgeon who take 'inoperable' patients.  Bless the ones that do.  My surgeon, Dr. Tomoaki Kato, is another who has done successful surgeries on many such patients.  While I wasn't considered 'inoperable', I certainly was clearly high risk (cardiac issues, etc.)  I had a left hepatic lobe resection (12 hour procedure) done in April 2009, and so far, am clean. 

Your story gives compelling reasons to get additional opinions with CC.  Many places just don't see enough patients to be very experienced and don't have the creative and brave surgeons it takes to combat this horrible disease.

Good luck to Bruce.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: What we have learned so far...

Patti, thank you for this wonderful post. No wonder Bruce has done so well. Your family is simply awesome and your advise is excellent. Do you mind telling us where Bruce is being treated and who his doctor is? There may be someone in your area looking for a good doctor who is not afraid of CC. Keep up the good attitudes and I agree laughter is the best medicine. I couldn't repeat some of our joking, people thought we were crazy but it does get you through some tough times. Great thoughts and best wishes to Bruce and your family!

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: What we have learned so far...

Thanks for the quick replies, Jim and Lainy!  Jim, Bruce was actually talking to Dr. Kato, too, and we heard great things about him.  Dr. Wallis Marsh, in Pittsburgh, is a very humble, unassuming gentleman, who is highly embarrassed by any public accolades that we make, so I state this informtion with the hope that he does not see this post and I embarrass him again.  I cannot begin to tell you the above-and-beyond care and treatment he provided to my brother.  I have never in all my life seen such extraordinary medical care. 

Lainy, to answer your question, Bruce's outstanding medical trio (in Pittsburgh) are the following:
Surgeon:  Dr. Wallis Marsh
Oncologist:  Dr. Marks
General Physician:  Dr. Jim Gleason

Dr. Gleason, a close friend of my brothers, found the cancer early and intuitively.  Dr. Marks has worked to provide the right treatments at the right time, and Dr. Marsh has truly become our family hero.

Thank you for all that you are providing to the many folks (patients and their supporters/families) who are battling cholangiocarcinoma.  I can't begin to tell you how grateful I personally am for what you are doing and for the people who have taken time to post on this site to help others.  It is my time to give back.

Warmest regards, prayers, and love,

Patti

Re: What we have learned so far...

Great post Patti!!  So heartening to read about good paths people are on. 
My thoughts and prayers are with you.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: What we have learned so far...

Thanks Randi!  This website has been of much help to us throughout this journey.  Will continue to post as we learn more.  My brother is also taking several supplements, which I will post here as well.  Will be talking to him today, so should be able to provide the full list.  I know that Milk Thistle is one of the herbal supplements and Avamar...but there are several others.

Thanks again for responding and for your kind wishes and prayers.

Re: What we have learned so far...

Sorry for the delay, but I am finally back with the list of supplements that my brother is currently taking:
  - PectaSol-C (Citrus Pectin) 5 grams 2X daily
  - AveUltra (Modified Wheat Germ - also known as AveMar)  9 grams 1X daily
  - NK-Stim6  (610 mg Arabinogalactan Heartwood/400 mg Olive Leaf Extract)  2X daily
  - Super Bio-Curcumin (400 mg Curcuma longa - turmeric)  1X daily
  - Mega Silymarin (900 mg Milk Thistle)  1X daily
  - CoQ10 (100 mg)  1X daily
  - Vitamin D3  (1000 IU)  1X daily

We also have a list of additional supplements that have been recommended by Dr. Pierotti in Pittsburgh, based upon extensive blood work in which several deficiencies were discovered, along with yeast in Bruce's blood.  Bruce will be seeing Dr. Marks tomorrow, and we will be asking if these additional supplements are ok for him to be taking.  They are as follows:

- Proboost  (Thymic Protein A)
- Colostrum
- DHEA
- Cortisol
- Pregnenolone
- Thyroid T3 Combo
- Nizoral (for the mold/yeast)

Some Additional News:
Bruce just had a scan this week and all is clear!!!  Bruce's CA199 marker keeps dropping which we believe is due to the Octreotide shot that he has been receiving every month for the past 3 months.  I will add more details after tomorrow's visit.

8 (edited by Patti77 Fri, 10 Jun 2011 12:54:52)

Re: What we have learned so far...

Some very good news (we think!)...  Dr. Marks reviewed the detailed report on the extensive bloodwork profile on Bruce done by Dr. Pierotti, and agrees that Bruce should take the recommended supplements listed above.  He seemed a bit intrigued by the candida yeast found in Bruce's bloodwork.  Bruce began taking the supplements on Wednesday and has been feeling progressively more energetic over the past two days.  It is probably too soon to tell if this is a good trend... But we remain hopeful! 

In the meantime, I am reading some very interesting thoughts tying yeast-mold-fungi to cancer, along with their "thriving" on an acidic environment.  Has anyone else heard much or have had experience with this?  Another topic that I would like to know more about is the effect of increased oxygen on cancer....has anyone heard anything regarding research on this?

Re: What we have learned so far...

I have added a link to more information on the connection between Cancer and Fungus, on this thread:  http://www.cholangiocarcinoma.org/punbb … 051#p47051

I am hoping to have more good news on Bruce after his scan this Tuesday.  Will keep you all posted.  I am praying that between the Octreotide and the Nizoral, that the cancer is still held at bay.

Keeping you all in my prayers!

Patti

10 (edited by Patti77 Sun, 20 Nov 2011 10:52:25)

Re: What we have learned so far...

Hello everyone...sorry for the long absence...but I do have an update and some news to share.  Since my last post on this thread, we have been through a lot (dementia issues with our father, moving my retarded sister back in with my parents...and numerous other issues on top of the roller-coaster ride with Bruce!)  All-in-all, Bruce is hanging in there...and we are all grateful to be able to share the following with you.  The full story is on our website for Bruce (www.brucehaney.org/brucesstory).

Here's the news:
Update - July, 2011
We received some "tough" news. Bruce's cancer had returned and had also spread. There were tumors in his liver, nodules in his lungs and a spot on his spine. Needless to say, we were all rocked by the news. I must say that God is great and gave Bruce the strength and fortitude for a long and difficult battle. This disease is truly insidious and is not going down easily. Dr. Marks put Bruce back on the Gemzar/Cisplatin that worked so well for him 2 years ago, and we all held our breath. Bruce, being the proactive soul that he is, requested that his CA199 test be done weekly rather than monthly, so that he could see quickly whether the Gemzar/Cisplatin was working.

Update - August, 2011
Bruce's Golf Outing took place with outstanding results (over $263,000 raised for the Raisman-Haney Fund for liver cancer research!) Bruce's CA199 marker test results were showing the news that we had hoped for: the number was dropping from a high of 78 in July, to 58, to 38, and to 26 by the end of August (within normal range) Note that the "normal range" for this marker is between 0 - 33, with the lower number, the better. Bruce had a CAT scan at the end of August/beginning of September which showed that the tumors/nodules were shrinking substantially (40-80% reduction!).

Update - November 20, 2011
We have continued to receive great news on the CA199 marker with the latest results placing this marker at 10.6!!! Bruce had another CAT scan on November 15th, with the great news that we were expecting: the tumors are continuing to shrink significantly (20-30% from the last scan). Dr. Marks is very pleased with how Bruce is doing. Bruce continues to religiously hold to the diet that we began over 2 years ago, and which we truly believe has made the world of difference in how Bruce has been able to combat cancer. Please continue to keep Bruce in your prayers...we are all praying that we can treat this disease as a chronic one, rather than a fatal one. Faith, Hope and Love abide!

11 (edited by Lainy Sun, 20 Nov 2011 12:41:03)

Re: What we have learned so far...

Dear Patti, totally FANTASTIC news! I just read what your Son wrote and it was amazing. I have an idea you are going to have the most beautiful Thanksgiving ever!  Well deserved...well done! I am looking forward to more good news and you are right....attitude is everything! Love to your Family.

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: What we have learned so far...

Hi Lainy!  Thank you for always being so supportive of ALL OF US and our families!  I am totally in awe of the time that you take to personally respond to everyone...and to lift us all up! 

It truly will be a great Thanksgiving!  We are SO grateful and blessed!

BTW...Kevin (who wrote the article on my brother) is my son.  I am SOOOO very proud of him!

We continue to pray, laugh, hope, love...and eat right!!!  ;-)

With love and gratitude for all that you do!

Patti

Re: What we have learned so far...

OOPS Sorry about that, I sit corrected and thank you for all the kind words. This site has been my salvation, so it is purely selfish!  smile:)

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.

14 (edited by Patti77 Sun, 27 Nov 2011 11:15:33)

Re: What we have learned so far...

I just noticed that the bulk of the original post is missing.  I did not delete it...I will try to salvage the content and repost...Wondering if the webmaster for this site might know how to retrieve the information.  It appears as if the website might have been updated as a whole, and perhaps my content was deleted at that time.  Not sure who I should notify that this content is missing.

Re: What we have learned so far...

Patty....I share your joy with the fantastic news you have to share with us.  Congratulations.  I am sorry though to know that some of your postings have been eliminated.   Please, feel free to contact our webmaster Rick@cholangiocarcinoma.org.  He will be able to help you. 
Additionally I would like to mention our “Blog” section in where you could place Bruce’s website.  Due to the high volume of postings threads as important as that may become lost however, in the blog section it will have a permanent place. 
Keep the good news coming.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What we have learned so far...

Thanks Patti,

I checked our backup and it has the same info as above. 

There's not a limit on the amount of text that can be posted.  (I've seen several other very long posts that are intact.)

I'll do some asking around to see if others that use this board are experiencing the same problem, right now there's no report of that issue.

Thanks, Rick

Re: What we have learned so far...

Hi everyone!  I just "reconstructed" to the best of my memory...the original post.  I will continue to "edit" it as I remember some of the information that was shared there.

Keeping you all in my prayers!

Patti

18 (edited by PCL1029 Sun, 04 Dec 2011 12:26:13)

Re: What we have learned so far...

Patti77 wrote:

We are so grateful for the extra time we have with Bruce and are anxious to share some of the things Bruce has done or is willing to do to provide for a longer, better quality life.  Bruce was originally told that he had less than 6 months.  It has now been 26 months and he is doing very well at the moment.

If I were to sum up in a short list of recommendations, based on our family's collective experiences, I would say this:

(PLEASE NOTE THAT SOMEHOW MY ORIGINAL POST WAS DELETED...SO THIS LIST MAY BE SOMEWHAT DIFFERENT THAN WHAT WAS HERE ORIGINALLY.  But to the best of my recollection...here goes!)

1.  RESEARCH like crazy.  Use the internet as a tool.  Turn over every stone.  Sites like this one (www.cholangiocarcinoma.org) have been a God-send for information and for support.
2.  ALWAY GET SECOND OPINIONS.  If you hear something that rocks your world, make sure that you are getting the same prognosis from as many sources as possible.
3.  BE YOUR OWN BEST ADVOCATE & CHECK ALL OPTIONS!  My brother Bruce was originally told he was totally inoperable...by many doctors!!!  But he finally found one (Dr. Wallis Marsh at UPMC in Pittsburgh) who WAS willing to operate...and he saved Bruce's life!)
     NOTE:  When Bruce was operated on, we had Dr. Marsh send tissue samples to TargetNow (a lab in AZ) that will determine what treatments (chemo & other) work best to eradicate your specific instance of cholangiocarcinoma.  For instance, we found that there were many chemo's and alternative therapies that will work to fight Bruce's CC.  Thus providing, as Bruce likes to phrase it, "more arrows in my quiver!"
4.  EAT LIKE YOUR LIFE DEPENDED UPON IT.  It does!!!  Books like:  Anticancer, A New Way of Life by Dr. David Servan Schreiber; The China Study; Forks Over Knives; etc. give similar information about following an anti-cancer diet with great success.  Bruce has been eating like this for over 2 years, and is doing well...he was originally given 4-6 months.
5.  LET YOUR FRIENDS & FAMILY HELP.  Allow your friends and family to help you.  Your friends and family are looking for things to do to assist you...they love you.  Let them in!  We had friends/family members cooking (using anti-cancer recipes), holding prayer vigils, writing cards (get-well card campaigns with 100's of cards), sending organic fruit, attending chemotherapy appointments, and more.  It is a great way to make them "feel better" so that you can "feel better".
6.  PRAYER WORKS!  Keep praying and solicit others to pray, too.  It does work!  My brilliant youngest brother found a scientific article that is now providing proof that prayer works.
7.  LAUGHTER!  Use humor as a weapon...It is healing!  (Proven fact!) Do everything possible to keep your spirits up...stay around optimistic and joyous people. It has been proven that there is a positive impact from this.  We, as a family, have looked for ways to lighten and brighten Bruce's day...from sending him funny movies in the mail, to playing mild practical jokes. 
8.  TAKING CARE OF THE CARE-GIVER.  We made sure that we were taking care of Bruce's wife Andrea, too.  She is there day-in and day-out facing grim news...and we knew that she couldn't help Bruce if she was struggling herself.  So we took time to relieve her for a few hours, a day, a week at a time, so that she could rejuvenate and come back to her role as Bruce's prime support rested and in a better place.
9.  REALIZE THAT THERE IS PROBABLY NO "MAGIC BULLET," so use MANY alternatives to reach your goal...Yoga, diet, herbal treatments, tea, prayer, support groups, along with traditional medicine.
10. KEEP THE SPIRIT OF A FIGHTER IN YOU.  Use determination and strong will to your best advantage.  As Winston Churchill said:  "Never, never, NEVER give up!"


I believe that this was the essence of my original post.  I will continue to review and add more if I find a particular recommendation that I missed...or if I remember a salient point.

I am also maintaining my brother's website:  www.brucehaney.org.  The full story on Bruce is here:  www.brucehaney.org/brucesstory.

Our entire family is wishing you all well in your journey and your battle!

With love and prayers,

Patti

Very good 10 points of how to deal with this horrible CCA,I wish you can repost it on discussion board   as a "NEW TOPIC" or somewhere so more people can read this.
GOD BLESS.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: What we have learned so far...

Hi everyone...I just wanted to give a quick GREAT NEWS update on Bruce.  He had started back on chemo this past July/August as the tumors had returned and spread (liver, lungs and spine)...since that time, his CA199 tumor marker has continued to drop from a high of 78 in July to 8.6 this week!  The marker has been within normal range (less than 33) for five months now!

At Bruce's last scan in November, we learned that the tumors are shrinking significantly, with some already gone.  Bruce will have a PET scan at the end of February and we are very optimistic that we will have great news, again. 

At this point, we are entering the 3rd year of Bruce's battle with this disease...and are extremely grateful for every day!!!

We are keeping all of you in our prayers as you continue to fight with courage and tenacity!

With love, support and prayers...

Patti and family

Re: What we have learned so far...

Dear Patti, this is such wonderful news and I thank you for ending my day this way!
Keep up the good news and the great attitudes!

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: What we have learned so far...

Patty....congratulations and thanks for checking in with us to share your success story. Please stay in touch. 
All my best wishes to you and your family,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What we have learned so far...

Patti,

That is awesome news. Bruce must be such a fighter! All the best for a bright future.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

23 (edited by Patti77 Thu, 12 Apr 2012 09:02:13)

Re: What we have learned so far...

Hi again folks!  Just writing with some "new news" on Bruce.  Here we are into our third year and Bruce is doing pretty well and "hanging in there."  As you might remember, last July (2011), his cholangio came back with a vengeance...really surprised us.  It was back in his liver and had spread to his spine and lungs. 

Dr. Marks put Bruce immediately back on the Gemzar/Cisplatin that had been so successful in the previous year.  Bruce also continued with the following supplements:
  - PectaSol-C (Citrus Pectin) 5 grams 2X daily
  - AveUltra (Modified Wheat Germ - also known as AveMar)  9 grams 1X daily
  - NK-Stim6  (610 mg Arabinogalactan Heartwood/400 mg Olive Leaf Extract)  2X daily
  - Super Bio-Curcumin (400 mg Curcuma longa - turmeric)  1X daily
  - Mega Silymarin (900 mg Milk Thistle)  1X daily
  - CoQ10 (100 mg)  1X daily
  - Vitamin D3  (1000 IU)  1X daily
By January of this year, the lungs and spine were clear and the 2 tumors remaining in his liver were very small.  They took him off of the chemo for February so that he could have a PET scan at the end of February.  The PET scan confirmed the great news and they decided to allow Bruce to remain off of the chemo for March.  OF NOTE:  Dr. Marks is now thinking that Bruce's supplements &/or diet are making some difference for two reasons.  1.) They did not expect Bruce to "still be here" and call him a "walking miracle" and 2.) He has absolutely NO neuropathy over any of the periods that he has been on the chemo, and this (I surmise) is unheard of.

Bruce had some "not so good" news last week when they did another CAT scan and thought they saw something on his kidney and one of the two tumors on his liver has grown again in size.  Bruce had an ultrasound yesterday and it was determined that the "thing" on his kidney is nothing but a cyst  :-)  and Dr. Marsh is going to ablate the two liver tumors tomorrow.  Bruce is ecstatic.  So on we go with this battle!

I call this battle a lot like the carnival game, "Whack-A-Mole"....once you pound it down, it pops up somewhere else...but you have to keep pounding to get all those critters down in their holes.  ;-)

Hang in there folks!  I am hearing a lot of great news lately about breakthrough discoveries....Keep on fighting the good fight!!!   I am going to post this link elsewhere on this site, but here is a recent article about a "universal cancer vaccine" (developed in Israel) that is in clinical trial NOW:  http://soc.li/0MDgO0O .

With love and blessings...

Patti