Hi I’m new to the discussion board

Discussion Board Forums Introductions! Hi I’m new to the discussion board

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  • #97777
    spokanemom
    Participant

    Hi Elena,

    Welcome. My husband was also 42 when he was diagnosed 2 years ago.  He had one 5cm tumor outside his gallbladder.  Sounds like he had the same surgery as your brother (along with his gallbladder and common bile duct removed), with positive margins and 1 positive local lymph node, but he was diagnosed at stage IIIB.  He did gem/cis for 7 rounds (2 weeks on/1 week off) followed my 5 weeks of IMRT radiation with 5FU chemo.  Was NED for 8 months before a recurrence with 3 tumors in his liver. He has been doing “maintenance” gem/cis every other week since May and has had no growth.  Life is good and we are treating this like a chronic condition.  He will have chemo as long as he can tolerate it and it is effective, then we will try something else.  We have had consults with 2 other oncologists and a different surgeon, so we are familiar with his options.  That was reassuring to us both.  He has been working full time, but has little blips every once is a while when he has to cancel class (he is a professor).  My husband has told me that he really appreciated the special family times I created while he was in treatment the first go around.  We took a couple of very small, local trips with the kids to an amusement park/hotel.  We typically do a lot of traveling, so this was part of keeping life “normal”.  We have lunch dates on his chemo days, which is also a fun routine to get into.  I bring him lunch and sometimes his brother joins us as well.

    We are both huge planners, so the unknown aspect of having cancer has been difficult, especially for me.  It really helped us both to meet with a financial planner and talk through various scenarios regarding social security, life insurance, health insurance, etc.  We also appreciated the second/third opinions we received and the long term medical plan developed by his oncologist after his recurrence (if this fails, then try this, then this, then this, etc).

    Looking at this as a chronic condition (since his recurrence) has also helped us as a family.  Many people have health issues that they deal with and we are doing all that we can to treat this disease, while not putting life on pause.  This is our new normal and life is good.

    You are providing such a great service to your brother.  I really appreciated being able to offload medical research to other family members so that I could just focus on my husband, and have my husband focus on healing.

    Best Wishes,

    Victoria

    #97599
    bon
    Participant

    Dear Lili-

    I was very glad to hear you are using dietary/supplements along with conventional treatments.  I read Dr. Blaylock’s Natural Strategies For Cancer Patients right after my husband was diagnosed with inoperable biliary cancer in March of 2017.  Dr. Blaylock writes that many physicians are uninterested, if not opposed to diet/supplementary adjuncts to conventional chemo.  I told my husband to stop mentioning anything about it because we were met with such hostility.  All, except for one, told us “none of that works.”

    Two doctors gave him four months, one a “very bad year.”

    Only one doctor spoke to us about diet – when he looked at my husband chart, his CA 19-9 number had dropped from 250 all the way down to 55 and he wanted to know how “we got that number so low” – I told him it could be from the diet/supplements/juices, etc. – and he told me he was writing a book about the link between sugar and cancer.  He 100% believes that sugar feeds cancers (which Dr. Blaylock’s book explains very well).  This is Dr. Chang from Sloan-Kettering in New York.

    For a little background, after my husband’s diagnosis, we visited many doctors and health facilities in Southern California – USC, UCLA, Loma Linda, Kaiser and more – we are very very fortunate to have double insurance and relatives who were willing to fund second, third and fourth opinions.  Husband was opened up in July of 2017 by a surgeon who believed he could do the resection.  It was not to be,  and he was closed back up.  We were bitterly disappointed, of course.

    I stuck with the supplements/diet and juices that I got from Blaylock’s book – husband did two rounds of Gem/Cis last October-November and couldn’t take it any longer. He was switched to an oral chemo and gave that up after a week, this was the first of January.

    Fast forward…no chemo since January, we see two doctors regularly, scans every four months – CA-19-9 is 27 and all other numbers are in the normal range – although they’ve risen slightly the past week, we believe because the stents need changing out. Loma Linda had him all set up to do the proton therapy – to the point where the mold was made and ready to go.  I got a phone call at work, I was sure to tell me the proton therapy schedule – only for the doctor to tell me the cancer was so small there was nothing to focus the beam on!  This is shrinkage from 11cm down to 3cm.  This was back at the end of February.  You can’t imagine how we celebrated.

    As an LOL, for writing pretty much this same comment on a British cancer site, I was banned for promoting dangerous “alternative medicines.”  I went back later and a lot of desperate people were asking where I was and wanted to know more about the supplements (curcumin, probiotic, DHA, Maitake Fraction D, Vitamin D3) – and how I made the juices.  My posts had been taken down.  The moderator told me their dietician said it was OK to have some sugar if you wanted, red meat was OK (NO, it is loaded with cancer-feeding iron).

     

    We’ve passed along this information to two other acquaintances, one with metastatic prostatic cancer, who told me after taking the supplements and making the juices, giving up sugar and red meat, his PSA number fell for the first time in two years (no chemo or other conventional treatments).

    We think it’s working.

     

    #97598
    lilitm
    Participant

    Dear Elena, I’m so sorry for what your brother is going through, and you with him. He is so young – it’s so heartbreaking and shocking that this happens to our young and healthy loved ones.

    If there’s anything I’ve learned from our experience than can help, please don’t hesitate to ask… Billy might have a more similar experience with his wife since my dad has been stage IVB (due to mets) since diagnosis. It’s so good you are a PA and can be the knowledgeable one in the family. I was just a grad student in my 20s when my dad was diagnosed March 2017 but I have been studying ever since to learn as much as I can and be his advocate.

    The most important thing I would say is to ask your doctors to please send a sample of your tumor tissue for genomic testing ASAP (like at Foundation One, or MSKCC where they’re doing this testing for free for cholangio patients). If he has targetable mutations or immunotherapy indicators  – ask to test for PD-1/PD-L1 (a separate test), MSI, TMB, DNA MMR – then maybe he will respond to targeted treatment or an immunotherapy trial. I would also ask MSK about newer radiation options, like ablative image guided IMRT, or proton beam radiation.

    In terms of integrative complementary approaches – we went to MSK too, and their integrative center’s Dr. Deng gives the most basic of complementary suggestions (probiotics with bifido, coriolus, vitamin D…) I don’t think you can rely on the large institutions for the most comprehensive integrative options, but it’s hard to know what else might be helpful. I think exercise was our magic weapon, since my dad was an athlete upon diagnosis and continued to exercise as much as he could throughout chemo. My dad was on Gem/Cis for 11 months (longer than average) with stability/slight shrinkage (he also used CBD oil orally, THC (vaporizing the pure plant – some people also take THC oil orally), probiotics, the recommended supplements like vitamin D and coriolus, acupuncture (definitely helped him feel better and with neuropathy from cisplatin), ginger for nausea, healthy plant-based diet (tried for lots of organic vegetables, chickpeas, eggs, some fish/chicken when he wanted more protein…), talk therapy and journaling, and any de-stressing we could think of like comedy…) before a scan showed progression and he had to switch to Folfiri.

    They added curcumin to his supplements while he was on Folfiri for about 3 months but Folfiri didn’t work and then he needed a biliary stent. At the end of June 2018, he began a clinical trial at the NIH in Bethesda, Maryland – using immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) and ablation, in the hopes that the ablation will release neoantigens that can be recognized by the primed immune system. The first scan in Aug was stable and we are hoping for even better in the October scan.

    I also read the book Radical Remission and try to apply the 9 factors to my dad in some way. Sending my hopes and wishes and love,
    Lili

    #97587
    vtkb
    Participant

    Elena,

    So sorry to hear of your brothers diagnosis.  I would advise your brother to also seek out the cholangiocarcinoma warriors facebook page, as many current patients are on there and discuss their treatments. They can share their experiences with him.   After my wife’s surgery, there was a positive lymph node so she was advised by both her surgeon and oncologist (onc is at sloan kettering, surgeon is not) to do radiation post op after a course of chemo.  Recent studies (bilcap) also suggest that xeloda with radiation post op offers better results, but I dont think that was compared to gem/cis directly (someone please correct me if I am wrong).  Kathy’s oncologist wanted her on gem/ox first as the Bilcap study had just posted results around the same time, so it was new to the field.   A second opinion will never hurt.  As for clinical trials, yes some pts have gone on them after surgery- going to a major cancer center that deals with cholangiocarcinoma , like sloan, mayo, etc may open up more opportunities know about those studies, as does searching clinicaltrials.gov.

    Good luck!

    -billy

    #97583
    Elenapa7
    Participant

    Hi Everyone,

    I am excited to connect with everyone and hopefully share resources and possible hope.  My brother and best friend recently (6 weeks ago) was diagnosed with intrahepatic cholangiocarcinoma.  He is 42 y.o and has no risk factors, previously healthy-so as it often does to most people, the diagnosis hit us like a brick wall.  I am a practicing PA living in Michigan, so I have taken on the role as being the one in the family to lead any research and medical communication, as I am the one that understands it most in the family.  He underwent  a extended left resection w reconstruction (Hepaticojejunostomy) on 8/24.  Path last week came back with positive margins, 1/5 lymph nodes. Therefore he is stage IVA (N1, M0) We have met with an oncologist who recommended standard Gem/Cis chemo followed by radiation, but are getting a second opinion at MSK in NY next week.  I am very interested in learning what Integrative medicine  anyone would recommend who has had a similar staging etc that has done with/in between chemo.  Any thoughts, comments are greatly appreciated.

    Thanks,

    Elena

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