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  • #1595
    reacher
    Member

    My husband is not giving up until this cholangiocarcinoma is conquered.
    29+ months and going strong!
    My greatest prayer is for those battling this disease is that it can be cured
    and people are restored to full health.

    Without a doubt we know this….
    Jesus the divine physician is healing Michael. It is Jesus who provided the talented medical Doctors, wonderful nurses, staff, medicines, funding and facilities for Michael’s treatment and care.
    He has been beyond generous with accommodation, surrounding us with family & friends , and
    dear ones who pray for us.
    Jesus is looking after our needs.
    His love knows no bounds!
    Turn to hm when you are in your darkest hours, when you feel weak and when you feel there’s no hope.
    Jesus is filled with compassion, love and mercy.
    Life with Jesus is never boring if you trust and believe.
    Patients, caregivers and the medical community should know the name of Jesus

    My husband has had all three pillars of traditional Western cancer treatment:
    Surgery, ( double gastric bypass) chemotherapy and radiation more specifically Proton Therapy.
    Truthfully, it has been a multidisciplinary team of doctors and specialists that have been instrumental in keeping my husband alive from this lethal and aggressive cancer.
    Together we ‘re better!

    The chemotherapies Mike has had include the first line of defence which was Gemcitibine &
    Cisplatin over a period of three months 2014. It failed.
    Being disenchanted with what the BC Cancer agency provided I pursued Proton Therapy treatment with an exceptionally brilliant doctor at Scripps in San Diego
    Dr Huan Giap along with his stellar nurse, Angie and all the team there.
    Mike received pencil beam proton therapy treatment at their new facility in October and November 2014 over a period of five weeks in the healing sunshine of Southern California. There was no money or funding provided for this rare cancer so we paid out-of-pocket.
    Mike was also sent to an oncologist at Torrey Pines, Dr. Darren Segal and was put on Xeloda
    His platelets tanked on two treatments and so we just continued with Proton Therapy alone with bloodwork and weekly visits to the oncology at Greens Hospital.
    At that time , I asked the oncologist in Torrey Pines if he had heard of Keytruda or Pembrolizumab which he had not.
    After we finished proton treatment we returned and pursued naturaopathic treatment from Dr Lorne Swetlikoff which was totally new to us. We embraced it and have never looked back!
    Once again this was not funded.
    In February 2015 outr Hipatabilary surgeon
    Dr A Buczkowski took Mike’s case to the tumour meeting at the agency to see if he was a candidate for resectioning and surgery. It was declined.
    The tumour markers started to rise in the spring of 2015 and a cath o port was put in Mike’s chest in June 2015 as the veins in his arms were wearing out.
    Working with our oncology team Dr Paul Klimo and Dr John Yun
    it was decided to try a new chemo Abraxane which was not funded again for bile duct cancer,as well as ,5FU worn over a period of 48 hours in an IV infusion system.
    Michael had other medical issues dealing with stents being replaced from plastic and finally to metal in June 2015.
    In addition, Mike was battling kidney stones and needed several ESWL treatments.
    Our life consisted of a daily Doctor dance ;sometime seeing two or three doctors in one day.
    It is worth mentioning, Michael developed a metastasis in his abdominal area in June 2016. Thanks to the talents and gifts of the physicists and nurse Angie and Dr. Huan Giap
    at San Diego Scripps proton therapy Center this second tumour was zapped by Dr.Giap ; which will be the title of my children’s book!
    Dr Giap (yap) gave me a zap!
    And we travelled to Rome and on a cruise with our dear friends
    walking on holy ground in Rome, Corinth, Ephesus and through the holy doors of extraordinary divine Mercy in Italy. (August-September 2016)

    Mike ‘s story is very lengthy ( as there’s more to share…
    Like endocarditis that he survived Iin October 2012)
    and for the sake of keeping ithis short I will say that
    Michael is now on the immunotherapy
    Keytruda or Pembrolizumab thanks to our exceptional oncology care at Richmond Hospital with Dt John Yun , his nurse Lisa and with the support of Dr. Klimo.
    We have tried various treatments including hyperthermia
    and others.
    I need to mention that all our MRIs have had to be privately paid.
    We are thankful to Dr Raj Attariwala for his incredible gift of radiology and reading scans.
    We have many other Drs and medical staff to thank as well.
    He noted in the MRI from October 2016 that there was a blockage in the metal bile ductt stent and thanks to Dr Charles Scudamore at VGH he cleared it with yet another ERCP.
    Our story is far from over.
    We firmly believe it is under the divine physician ‘s care,
    prayers and love of family & friends that Michael is here to
    testify and witness.
    With Faith
    I have always stood by the name…
    Miracle Michael.
    He is still here and active.
    The only place he’s going
    Is on more trips!
    Yesterday he rode 4 miles on his bicycle…. In Kauai.
    Believe in the mercy and grace of God
    For with Him
    Not one thing
    Nothing
    Is impossible.

    Remain strong!
    Do not be afraid.
    Together we ‘re better!

    Love and prayers.

    #81648

    In reply to: FOLFOX?

    Hi Ladonner.

    I am sorry about your recent progression.
    I dont have personal experience with FolFox… only the Oxaliplatin part of it.

    It seems you already have Gem/Cis experience. How well did you tolerate that?

    What are your concerns about the FolFox?

    Oxaliplatin is a very strong medicine. (but arent they all?)
    Tolerance is of course extremely variable and personal. I feel the younger and stronger a person – and their over all health – the better chances they are of recovering after the infusions. So that is something to keep in mind when reading the experiences of others.

    My mother is 65 and has done 4 rounds of Gem/Oxaliplatin. It has been 16 days since moms last treatment and she is still too tired to do much of anything. The neuropathy in her hands has prevented her from using her phone much and the cold sensitivity has lingered. Even walking on cold tile floors. She did mouth rinses periodically and ended up with 1 or 2 sores. She was very queezy (but is naturally with any meds) – Taking the nausea meds religiously helps tremendously. Her appetite was non existent. She drank warm Ensure, whey protein shakes, and hamburger patties.

    To me though- the fact that your tumor responded so well to treatment sounds hopeful. And a surgical consult is a wonderful thing even to be considered. Its what we all hope for.

    I hope you get some responses about 5FU in the coming days that will provide you the information you seek.
    I wish you all the best.

    xoxox
    Meg

    #24220
    scott-sibley
    Member

    They diagnosed me last September. I have done everything in Kentville, I only go to Halifax for PET scans.
    I started with a round of gem/cis, but it didn’t do anything. I’m on ironotecan/5fu and it worked really well, but it is very harsh.
    The Tumor Board is a mash up of onocologists, radiologists, surgeons. They help diagnose the caner you have.

    #12769
    lw81
    Participant

    Hello,
    Thank you for letting me join this group. I am here to help get information for my mother, age 59, who is battling stage IV Cholangio. She is currently being treated at the James/OSU, but we are exploring other options. Her mass was removed in late February, but she had several complications after and two emergency surgeries left her with a horrific open healing stomach wound that is taking months to heal. She has spent the past months recovering at home. Two weeks ago her scan showed new spots on her liver. Chemo is supposed to start this week (she was going to do GEM/CIS but her bilirubin is too high and they are now looking at 5FU & oxaliplatin) but I’m here to learn about other treatment options….to me it just sounds like the chemo would buy her some time. We are waiting on results from the genetic testing on her tumor. I appreciate all of you for sharing your experiences as we try to navigate the best options for her.
    Laura Woeste
    Dayton, Ohio

    #93094
    grsharp
    Member

    My wife had 4 infusions of gem/cis over a 6 week period. She had no nausea, hair loss and only minor fatigue. She did take nausea meds with the infusions and for a couple days following infusion as a preventative.

    There was a small amount of shrinkage in her Hilar tumor.

    She has since done radiation along with 5FU. This only side effect was some serious fatigue that started during the 4th week.

    She is 2 weeks post her 1st infusion of Keytruda. She has only had minor side effects so far. She will get an infusion every 3 weeks and imagining in 2 months to see its impact on her tumor. She has no known metastases.

    Wishing you and your mom well.
    Ben

    #12699

    Topic: Keytruda

    grsharp
    Member

    My wife was diagnosed with Hilar CC last November. She had 4 infusions of gemcitabine and cisplatin. She then had radiation 5 days a week for 5 weeks along with 5FU administered 24/7 using a fanny pack. This did not shrink tumor (it has remained mostly unchanged) that is involved with the arterial blood supply enough that the surgeon would recommend resection.

    On 8/10/16 she had her first infusion of Keytruda. She experienced no side effect until the 5th day when she had some general joint pain along with some mild intermitting right lower stomach pain. For the last couple days she has had mild persistent back pain in the region of her kidneys.

    I am posting this an example of one patients early response to Keytruda and also to ask others to share their experience with this drug.

    #91248
    grsharp
    Member

    Mrucci, how has the rad and Xeloda treatments worked out for your husband? My wife is scheduled to start radiation and 5Fu (which is, I think the same as Xeloda except it is an IV rather than oral) on 4/25/16. Incidentally, we are in Nashville tn.

    #92023
    grsharp
    Member

    Are there snake oil salesman out there? Sure.
    However, I have discovered that the standard of care for cholangio leaves a lot to be desired. Or maybe there are some cures, or non cures, that offer long term survival with good quality of life. If so, can someone point me to them…PLEASE.

    I have t/w oncologists at both Vanderbilt and the Sarah Cannon institute and all they have to offer is the standard of care of gemcitabine/cystplatin or radiation and 5FU. Anyone here had good long term success with ether of these?

    They say maybe they can offer an immunio therapy trial after my wife has failed their standard of care treatments. By then she will likely be so sick and her immune system so damaged and weak that she will be less likely to respond.

    The way the current cancer treatment system just dosnt work well.
    Here is a link to a Harvard graduate with brain cancer that is alive 18 years after his doctors said he would be dead in 6 months.

    http://articles.mercola.com/sites/articles/archive/2016/04/09/atrocious-state-cancer-treatment.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20160409Z1&et_cid=DM102212&et_rid=1437284531

    #92039

    In reply to: Vena Cava

    tiah
    Member

    Jennifer,

    Yes my mother went through 8 cycles of FOLFIRINOX (5FU, Irinotecan, Oxaliplatin + Folinic acid) chemotherapy regimen, as the surgeon deemed it inoperable in the current state and therefore the aim was to shrink the tumour with chemotherapy. After the chemotherapy, there was success with shrinking, and the tumour became “dead”, we are now under the impression there is no active disease, but she is having a PET and angiogram in the coming 2 weeks to gain better knowledge on if the tumour is still active at all. If the tumour is not removed there is a very high chance it will become active again regardless. I think with regards to the outside of the tumour being dead, this was related to the surgeons impression that the chemotherapy would have targeted the outer of the tumour first, and if there was any active disease it would have more likely been deeper into the tumour.

    Tiah

    #12345
    grsharp
    Member

    My wife just finished 4 infusions of gemcitabine and cisplatin over the last 7 weeks. A new CT scan showed her hilar CC mostly unchanged by the chemo. Oncologist suggested radiation and 5FU going forward.
    We found a clinical trial at Sarah Cannon institute using REGN2810, which is an anti PD-1 inhibitor much the same as Ketruda. In fact the oncologist said all the PD-1 inhibitors are pretty much the same for as their effectiveness.
    It can be combined with radiation and or certain chemo drugs.
    Here is a cut and paste about it:
    ]REGN2810 is a type of drug called a monoclonal antibody. REGN2810 is a fully human monoclonal anti – PD-1 antibody (a type of protein) that works by blocking the programmed death receptor 1 (PD-1), a cell receptor on immune cells that is involved in preventing the immune cells from destroying other cells. Blocking the receptor is expected to help the immune cells attack the cancer cells. This study is being conducted to test the safety of REGN2810 and to see if blocking PD-1 with REGN2810 will help the immune system attack the tumor, and to determine whether combining REGN2810 with radiotherapy and/or cyclophosphamide is safe enough and if it can help to improve tumor shrinkage.

    Since this trial has been going on for about a year at several different locations, I was wondering if anyone here ahs any knowledge about it.

    Thanks….Ben

    gavin
    Moderator

    Hi Sharon,

    Sorry to hear that your husband is no longer able to tolerate the Gem/Cis and I too hope that the Folfox will work for him and will keep my fingers crossed for him with that. I have no personal experiences to share about Folfox as my dad did not have chemo of any type, he wasn’t able to have it.

    Have you checked out the chemo page here on the site as I know you will find some of the members who have gone through Folfox, either they have or their loved ones have.

    And here are a few links for you about Folfox as well and I hope that they help.

    http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/folfox

    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/Oxaliplatin5FU.aspx

    Hugs,

    Gavin

    mgg
    Participant

    My husband had surgery 3 years ago in February 2013 removing half the liver, gall bladder and reconstruction of the bile duct. Some lymph nodes were shown to be infected in biopsies done at surgery. No Chemo or Radiation was deemed necessary at the time. We were told it was not cured and would reappear at some point. Two years. later in February 2015 there was 2 tumors discovered in the Celiac region. Due to the location, radiation was not an option. He started Chemo with Gemzar and Oxiplatin and ended up in the hospital a few times. Then he had Gemzar with Xeloda with side effects of Hand and Foot syndrome and mouth sores. The Xeloda was reduced but side effects still bad. He now has a port due to his veins wearing out and the next step may be 5FU. The tumors are small and have not increased in size or number.
    We were wondering if anyone had it metastatsize to the celiac region?

    #91479
    grsharp
    Member

    Looking forward to any new info learned at meeting.

    Basically the Oncologist will meet with radiologist next Tuesday to discuss options. Her thought is that my wife should have 5FU and radiation with the hope that the tumor involving the right lobe can be shrunk so that the left lobe can be removed. She thinks 30-50% chance of that happening. Otherwise she is not appear favorably to any of the newer immune boosting (Keytruda) drugs since evidently none have been approved for CC.

    My impression is that 5FU has many side effects and is not very effective for CC.

    Blessings
    Gayle

    #90898

    In reply to: Non resectable Cc.

    kris00j
    Participant

    Maribel,
    I was diagnosed in 2011 with unresectable cc. The tumor had wrapped itself around my vena cava and 2 of my 3 hepatic arteries were involved. Gem/Ox and FUDR shrank the tumor considerably, but due to other complications, I was never able to have surgery. I had to quit chemo for a while and cc spread so no surgery. I did sbrt radiation which worked fairly well for about 7 months, then was accepted into a trial. That drug worked for 2-1/2 years. Unfortunately the cancer had spread again so I am waiting until Tuesday to see if my onc and radiologist have any brilliant ideas. They are brilliant, so I’m sure hoping they figure something out. I have had one of the new areas biopsied for mutations, so hope to get that into the decision making quickly.
    I’m sorry this is so long, but I wanted you to know that although surgery is the best option for all of us, some of us do get some good results with drugs and radiation.
    By the way, I was a courier part time until last month… I just started working at Sam’s Club part time (although this may prove too much), I play local poker games and sing karaoke. Oh, yeah, I’m single….. So I don’t have a partner to worry about or to worry about me (good and bad points). But I’m pretty healthy, although I require more sleep than I used to.

    Tiah, I was on similar… Gem/Ox with FUDR which is a little stronger than 5fu.

    Good luck to both. I hope surgery becomes an option!

    #90791
    sherri
    Member

    Kris,
    Sorry to read that you have to fight again but you sound strong and positive so I beleive you will fight it off again.

    I saw where your doctor was check on other medicine to go with 5fu. I go to MDA for treatment and my doctor had me on Leucovorin, Irinotecan (camptosar) and I wore a pump for 46 hrs with 5-fluorouracil (adrucil). I haven’t read of this combination so I don’t know if it is something you have tried before. The first 6 cycles took my CA-19 from 7227 to 2398. The second 6 cycles everything stayed the same so they have me on maintenance with xeloda right now. My dr at Anderson is Dr. Shroff if you are interested in this combination.

    Best of luck and I’ll send prayers and good thoughts your way.
    Sherri

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