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

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  • #50598
    patti77
    Participant

    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?

    #50597
    patti77
    Participant

    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.

    #50596
    patti77
    Participant

    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.

    #50595
    Randi
    Participant

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

    #50594
    patti77
    Participant

    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

    #50593
    lainy
    Participant

    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!

    #50592
    jim-wilde
    Member

    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.

    #5201
    patti77
    Participant

    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

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