Discussion Board Forums Good News / What’s Working What we have learned so far…

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  • #50613
    patti77
    Participant

    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

    #50612
    pamela
    Participant

    Patti,

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

    Love, -Pam

    #50611
    marions
    Moderator

    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

    #50610
    lainy
    Participant

    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!

    #50609
    patti77
    Participant

    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

    #50608
    pcl1029
    Member
    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 (http://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: http://www.brucehaney.org. The full story on Bruce is here: http://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.

    #50607
    patti77
    Participant

    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

    #50606
    rick
    Keymaster

    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

    #50605
    marions
    Moderator

    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

    #50604
    patti77
    Participant

    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.

    #50603
    lainy
    Participant

    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! :):)

    #50602
    patti77
    Participant

    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

    #50601
    lainy
    Participant

    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.

    #50600
    patti77
    Participant

    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 (http://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!

    #50599
    patti77
    Participant

    I have added a link to more information on the connection between Cancer and Fungus, on this thread: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=47051#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

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