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Viewing 15 posts - 1 through 15 (of 52 total)
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  • in reply to: Genetic Testing #56063
    patti77
    Participant

    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.aspx?PageType=3&ModuleInstanceID=54&ViewID=7b97f7ed-8e5e-4120-848f-a8b4987d588f&RenderLoc=0&FlexDataID=33&PageID=50

    in reply to: Anyone has experience with fluid retention? #52286
    patti77
    Participant

    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

    in reply to: The Passing of My Wife, Cindy Andrews #69016
    patti77
    Participant

    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

    in reply to: GINGERS PASSING. #58690
    patti77
    Participant

    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

    in reply to: Clean scan today- almost 2 1/2 years #68766
    patti77
    Participant

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

    Patti

    in reply to: NIH trial – still working! #68891
    patti77
    Participant

    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/NCT01174121?term=cholangiocarcinoma&recr=Open&rank=48

    http://www.cancer.gov/clinicaltrials/search/view?cdrid=683241&version=HealthProfessional&protocolsearchid=11144799

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

    God bless,

    Patti

    in reply to: Lauren is finally getting what we have hoped and prayed for. #68814
    patti77
    Participant

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

    Patti

    in reply to: Mother’s passing #68573
    patti77
    Participant

    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

    in reply to: Lost my father to cc on 12/08/12 #68860
    patti77
    Participant

    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

    in reply to: A warrior has passed on… #68647
    patti77
    Participant

    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

    in reply to: Radiation the next three days #68475
    patti77
    Participant

    Lisa, prayers and healing thoughts being sent your way!

    in reply to: A warrior has passed on… #68644
    patti77
    Participant

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

    Love and God bless,

    Patti

    in reply to: A warrior has passed on… #68641
    patti77
    Participant

    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…

    in reply to: A warrior has passed on… #68638
    patti77
    Participant

    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

    in reply to: A warrior has passed on… #68635
    patti77
    Participant

    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…

Viewing 15 posts - 1 through 15 (of 52 total)