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Viewing 9 posts - 16 through 24 (of 24 total)
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  • in reply to: Early Detection #95791
    beatriz
    Participant

    Hi Bob!

    I agree with you 100% percent and I personally know how frightening this can be….I was reading this morning on the San Diego Union Tribune about a blood tests that can detect cancer in the liver during early stages via the methylation process. This blood test is being tested at UC San Diego, here is the link http://www.sandiegouniontribune.com/business/biotech/sd-me-liver-cancer-20171009-story.html

    After loosing one of my parents to this monster as well as one of my dogs (different cancer) I can totally relate because both went from healthy to Stage 4 overnight.

    Please keep active here and join the efforts to help us finding feasible treatments,

    Best,

    in reply to: Been 3 months, getting first scan #95396
    beatriz
    Participant

    Hi Jeff

    I am glad to hear you have dosing guidance from a cannabis professional. The only thing I would add is that if you see no improvement you may want to add a high CBD oil in the mix, perhaps throughout the day…..my understanding is that cholangio involves a lot of inflammation and chemo/other drugs is highly acidic so for THC to do its job you need to keep the inflammation at bay and the acids and CBD can do that…that is why is so important to work with a cannabis doctors because dosing, strains, and ratios will change throughout treatment….so don’t be afraid to throw the cannabis cabinet on cholangio….

    Just like chemo stops working because cells adapt, the cannabis dosing needs to be adapted too.

    Healing and Blessings your way!

    in reply to: Been 3 months, getting first scan #95394
    beatriz
    Participant

    Hi Jeff,

    Of course there is empirical evidence that medical cannabis works (the correct therapeutic term. If not google Eli Lily pharmaceutical before 1930 , there were 5 big pharma that used to sell it for many illnesses including cancer).

    Anyways, there is evidence that cannabis oil kills cancer stems but this clinical trials are being done abroad. Israel is the hub and from where we in the USA get the latest information. If you search on FACEBOOK you can see how Zelda Therapeutics out of San Francisco as well as Constance Therapeutics are teaming up with major universities, hospitals, and pharmaceutical abroad. I know Zelda was having clinical trials here in San Francisco but related to sleep or pain I believe. …On YOUTUBE search Mara Gordon (Zelda Therapeutics) and Constance Finley (Constance Therapeutics) both are makers/researchers/and were patients at one point.

    The reason why people react different to the Cannabis Oil is because lack of clinical trials here in the USA as well as information…one word of caution you want FECO oil (RSO means it has unhealthy solvents) where makers use other methods of extraction for FECO (Full Extract Cannabis Oil) the DOSING becomes more confusing because you need a knowledgeable doctor or maker that can recommend dosing based on the condition at hand and the patients goals (for some people suppositories make a difference for others it doesn’t since the rate of absorption down there is not the same as when you ingest it). Also FECO oil may come with Olive Oil or MCT (coconut oil) but the most important thing is potency as anything below 60% potency is worthless for therapeutic reasons. So ask your maker/dispensary for a lab report for the product at hand, if you are making it, then it is a different story.

    For my human CCA patient we were advised to do micro-dosing and it was a 1:1 ratio of CBD to THC. Now, for my non-human (dog) Mast Cell Cancer (which is another beast) we are treating aggressively and after trying 1:1 ratio, 3:1 ratio, I am seeing a difference with 2:1 ratio of CBD to THC but then again, I was lucky to get a response from one of the ladies I mentioned above and I get my dog’s cannabis oil tailored made here locally in San Diego so I buy 30 ML bottle with 1000 mg of cannabis with a droppers and my goal is 80 drops a day distributed throughout the day….Some cancers need a higher CBD ratio because it is the inflammation that you are trying to contain before THC goes in there and does its job….

    Finally, DIET change is a must and don’t be fooled when they tell you it doesn’t matter. In addition to the right ratio of cannabis oil, my dogs big fat tumor (which happens to be outside his armpit) started to shrink when I started cooking for him only cooling foods based on chinese meds (that is only turkey, cod, duck, rabbit along with low carb veggies, and no sugar and healthy fats like olive, coconut, organic ghee, flaxseed)

    Just my two cents as a caregiver for both human and non humans……and yes! eating healthy can be expensive and time consuming so I started to eat what I cook for my dogs (the other one is ingested some toxins so it injured his liver and he is too in this cooling food diet minus the fats)…So I will see the effects on my body too :)

    Blessings your way.

    Beatriz

    in reply to: Saying good by – but not really #95339
    beatriz
    Participant

    Marion,

    I am here for you too with confidence that the universal forces are flowing to you and through you and opening the doors for the path ahead.

    You were an invaluable resource for me (as for many others) in the darkest moments of my life and you light is so bright that it cannot be dimmed easily.

    I already sent you an email with some information you may want to see since these two ladies are in your backyard sort of speak (SF Bay area).

    In Love and Health

    Beatriz

    in reply to: Documentary to be viewed on Discovery channel #95376
    beatriz
    Participant

    Melinda,

    I saw a CBS special “Beyond Cancer” where Dr. Rosenberg was discussing the trial you went in. Here it is
    https://www.youtube.com/watch?v=yWAFOZPIzUU&list=PLzgTYZo2-8ez52U3mPs94HGCMpptnKd4D

    in reply to: Molecular Testing #95291
    beatriz
    Participant

    Holding space for you and your mom and healing to occur…..just wanted to point out for you and anybody else in need of molecular profiling that you don’t need tissue sample.

    That is right…blood biopsies are much more precise and effective because the tumor and the cancer shed proteins into the blood stream and that is why it is more precise than the invasiveness of tissue (plus much more cost and time efficiency) In fact I was told that some oncologist do these blood biopsies on regular basis because once treatment has started the mutations change over time to adapt……that is how smart our human body is….so it is not uncommon for patients to have blood biopsies on a monthly basis (if you don’t believe me call Guardant Health and ask them how often do patients get their tests) but again depends on many factors the clinical trial, the treatment, the oncologist, the end goal, etc….I know with my patient it was done at the beginning (to have a base) at the end of the chemo/experimental drug which by the way I was surprised to see the mutations had change. There are several companies out there. Guardant Health (which tests the most gene) and PGD Plasma 64 + MSI the only blood test in the market to test for immunotherapy checkpoints (MSI). Hope this helps you…

    in reply to: Hello from Houston, first post, sister with Cholangio #95230
    beatriz
    Participant

    Today I received the USC Norris Cancer Center Report (this is where my dad was treated) and the whole issue was devoted to the liver.

    There is an article of a man who was diagnosed with CCA Stage IV when he was 40 years (just like your sister had other digestive system for the past 10 years!!!!) and he sought 2nd, 3rd, and 4th opinion and landed at USC with Dr. Lenz. Like most CCA patients he started on chemo FOLFOX but when it failed (it is crazy patients first have to fail chemo) he was admitted to a clinical trial meant for breast cancer patients because of his HER2 overexpression on his molecular testing results. Fast Forward 3 years and the tumors dissolved and he is now cancer free.

    To me the recurring theme is:

    #1. Seek 2nd 3rd and 4th opinions

    #2. Molecular testing is key

    #3. Working with an oncologist at a major cancer center that are knowledgeable with CCA (you have MD Anderson which is the best)

    #4. Targeted Therapies work much better than chemo in some cases and when the patient’s body hasn’t deteriorated much after the failed chemo.

    I will try to attach photos of the article…

    I am holding space for your sister (who happens to be my same age) and you and your family during this time….prayers and blessings your way.

    IMG_20170704_071620.jpg

    IMG_20170704_071627.jpg

    in reply to: Hello from Houston, first post, sister with Cholangio #95229
    beatriz
    Participant

    Greetings!

    As far as nutrition please google LIQUID HOPE it is a whole based plant food used in hospitals (per family request of course) that can be used for both tube feeding or oral….I bought it for my dad who was suffering from this monster too and it really helped him.

    The left overs I am either consuming them as soups and my mom uses them too. The best part is that the cost can be covered by insurance and medicare if it is medically necessary (paperwork from doctor is required). I am not a doctor but I believe it is all about absorption and utilization that is why the patients loose so much weight and that is why juicing (enzymes) and whole food nutrition like LIQUID HOPE can help the body.

    As far as molecular testing…you don’t necessarily need tissue especially when it is this advanced the tumor tends to shed lots of protein into the blood stream thus now we have blood profiling. The most widely used test which tests more genes is GUARDANT HEALTH (owned by google) but Personal Genome Diagnostic came out with the first blood biopsy that tests MSI (which test instability point needed for immunotherapies) the test is called PLASMA SELECT 64 + MSI….I know our oncologist wanted to do foundation one blood biopsy because this is their default go to source but he was impressed that I even found the PLASMA SELECT 64 +MSI and ordered the kit (the good thing about this company they are willing to work with people from economically disadvantaged backgrounds in case their insurance wont cover the entire cost).

    in reply to: Family and Medical Leave Act (FMLA) #95103
    beatriz
    Participant

    I think all of us in this foundation/community need to join forces with PL+US to advocate for increased job protection for patients and caregivers of Cholangio because it is about providing access to CARE or CAREGIVERS to cancer patients during their life threating moments….We all know 12 weeks or 60 days is not enough especially when undergoing clinical trials…so what comes first the chicken or the egg? they need more people for clinical trials but there are no resources or protections for patients to ACCESS these life saving opportunities….

    http://www.paidleave.us they are responsible for advocating for Wal-Mart and Starbucks workers.

Viewing 9 posts - 16 through 24 (of 24 total)