beatriz

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 24 total)
  • Author
    Posts
  • in reply to: 36 year old with CC update #97944
    beatriz
    Participant

    Billy,

    I am so sorry to hear about these recent developments. I came to this site 2 years ago when my father was diagnosed with it and Marion and everybody else here were key in pointing us the needed resources and education.

    I was and I am rooting for Kathy as she is a young brave soul. One thing that I have learned when dealing with this disease and others is that doctors often don’t address the possible roots. Let the doctors do their part but if you can look at the factors they are not allow to discuss like nutrition, supplements, water quality and filters (shower heads included), air quality (if you can get a small portable filter for her room), declutter her room from all electronic items and turn off wifi at night while she sleeps, etc…it may sound silly but any help you can provide her own body and immune system which may need a support or break to their job efficiently. Sometimes I felt like we put too much emphasis in the cancer and not enough emphasis in what was working on the body and how to support it.

    You are a great advocate for her and she is in good hands. I am sure everybody in here is behind you and wishing for a healthy outcome.

    in reply to: the passing of Marion Schwartz #97303
    beatriz
    Participant

    I am tearing up as I am reading this and now I have my answer of why Marion never replied to my last email. I had a bad feeling and she has been in my mind lately.

    Marion was an literally an angel here on earth when I was taking care of my father who was diagnosed with Cholangiocarcinoma. She was fundamental in teaching me about all the terms and all the logistics that one needs to now with this stupid disease. She was there to console me when we had an aborted surgery and when my father finally made his transition.

    I really hate cancer and everything related to it, but I know that all of us are better caregivers because of visionary people like Marion and the founders of this foundation. In her memory and in the memory of all the loved ones that have passed lets keep being vocal. I don’t know which mountain top I need to get on to scream for better and early screening methods, for complementary and alternative treatments, and for more research on Cholangiocarcinoma since there seems not to be not that many targeted treatments.

    So lets continue Marions legacy of advocating each other and lets keep hiking and screaming from those mountain tops so healthcare providers and pharmaceutical hear us loud and clear that we need better Cholangio screens and treatments.

     

    beatriz
    Participant

    Hi Gavin!

    Thanks for all these posts….After being a caregiver for this horrible condition, I often wondered back on what could have been done to screen it earlier or the awareness of red flags from the body/liver….

    This morning I received an email from UC San Diego to participate in a study for breast cancer screening because they is sooo much information out there that is confusing for us patients to know when and how often to screen. The study is called “Wisdom” by Athena and is aiming to recruit 100K participants who do not have breast cancer so there are 3 arms: choice to get personalized recomendation/screening, random, and current annual mamogram screeing. I signed up for the personalized and the first thing they are doing is a saliva testing to see if there are genetic markers (the company is Color Genomic) and based on this results plus my lifestyle/health questionnaire they will be doing a screening recommendation (meaning if I need a mammo every year or two years, etc..)

    I wish there will be a similar study for GI cancers especifically Cholangio that can be done to study potential screenings. There are sooo many genetic companies out there (blood, saliva, and even fecal) wonder what and how something like this can come into reality. For instance, VIOME is a fecal test out there that tells you the % of good bacteria vs. % of bad bacteria and even tells you which foods are causing inflammation (the foundation to all cancers and other chronic diseases) and based on the results there are food /dietary recommendations to balance the Microbiome which is where the immune system lives. Most of us know which foods are bad and good and if we are leading a healthy lifestyle, however, we don’t do it (including myself).

    I am grateful for your daily contributions and this community here as there is zero Cholangio advice and resources out there besides this one (let alone in other languages) and finding an early screening tool(s) is not only important but necessary.

    Blessings…

    in reply to: It’s a sad day, but don’t give up. #96901
    beatriz
    Participant

    First and Foremost, my heart and love is with you as I know how hard this stupid disease is and how hard is to loose a loved one.

    Yes! I agree with you 1000% with Cannabis and urge anybody reading this post to please seek medical guidance from a cannabis doctor as the dosing is super important and it never stops it just gets adjusted.

    We need to support any clinical trials that address this awful disease and any cancer with Cannabis. I am hopeful that if the clinical trials abroad with companies like Zelda Therapeutics (I am sure there are other cannabis companies but we need to compile this information and make it centralized for everybody access) are showing promising results that they are brought back here to the USA as clinical trials too as these are no longer “alternatives” treatments but rather “holistic”.

    • This reply was modified 1 year, 3 months ago by  beatriz.
    in reply to: CANNABIS OIL & CHEMO? #96710
    beatriz
    Participant

    Scott,

    For cancer or any other critical illness you need (1) find a reputable dispensary or cannabis maker (2) what I mean by reputable is the product needs to be accompanied by lab results which clearly outines the % of CBD, % THC, % CBDA,% THCA, a% of other terpenes of the plant AS WELL AS the potency (anything below 60% is not worth it) (3) For Cancer you need the whole plant extract (google entourage effect) not just one isolated cannabidiol molecule whehter it is CBD or THC, it MUST be the whole plant. For instance, my dog and I use a high CBD oil which is 20:1 (meaning 20 parts CBD to 1 THC). For cancer, the best ratio out there is 1:1 meaning 1 part CBD and 1 part THC.

    If you live in a state where you can get a medical card, please do so. Also search for cannabis doctors that can best guide you with dosing and ratios. I can give you two names of two that work out of California but they can do phone consults worldwide (note: by law they cannot sell you cannabis or give a medical card but they can sure guide you where to get them) one is Dr. Allan Frankel out of Santa Monica Los Angeles CA and the other one is Calla Spring Wellness out of San Francisco both are experts in dealing with cancer diagnosis. Just for your own education google Zelda Theraupeutics Pancreatic Cancer Clinical Trial so you can read how cannabis researchers have paired up with oncologist in clinical trials abroad (Australia) and recently they have made progress in the area of breast, brain, and pancreatic cancer.

    I hope this helps.

    in reply to: CANNABIS OIL & CHEMO? #96506
    beatriz
    Participant

    Positivity,

    Sorry to hear about your mom and my only 2 cents is that Cannabis does work when properly dosed by an Medical Doctor who specializes in it and when it is early in the cancer treatment. Unfortunately, Cannabis is not a one-size-fits all miracle and with its classification of Schedule 1 drug it is very hard for Research and Development in this country (Elli Lily the drug manufacturer in the 1930’s used to sell cannabis tinctures and they were marketed for various illnesses including cancer, it is beyond me why the turn of events into a schedule 1 drug, maybe loss of profits since a plant cannot be patented). That is why the research happening outside of the USA is so important as clinical trials are happening in Spain, Australia, Chile, etc..for different ailments and I am glad to see they are including pets as well.

    Cannabis can alleviate some pain and inflammation and thus is a wonderful supplement at any point specially during hospice. And I will say it over and over again for THERAUPEUTIC dosage people need a medical doctor (for example, Dr. Allan Franke out of L.A, Dr. Bonnie Goldstein out of L.A, Calla Springs Wellness out of San Francisco along with Mara Gordon from Aunt Zelda just to mention a few reputable ones)….if you want to learn more search for Mara Gordon on youtube and she is the founder of Zelda Theraupeutics in Australia which is conducting clinical trials on different diseases (including pets) and Mara usually goes around the globe and sits with medical doctors, researchers, etc…so she is a key resource to learn from.

    Yes! cancer takes years to form and imaging can only pick it up when the tumor is of a certain size.

    in reply to: CANNABIS OIL & CHEMO? #96471
    beatriz
    Participant

    Taylorjm,

    Curious to know if the continued used of Cannabis is still proving to work for your Mother in Law….if you can share any updates, it will be highly appreciated.

    beatriz
    Participant

    Thank You Gavin and Happy Holidays!

    I will make sure to take a minute and give my opinon to Foundation Medicine…..

    I also wanted to add to your posts the names of the companies that are willing to work with low income families, military,etc… The direct contact names were given to me when Cure Forward was around.

    My experience was that tumor tissue was too small and/or already used (whatever that means) and tissue testing was useless. That is when started reading on liquid biopsies and I settled for My Personal Genome Plasma SELECT 64 which is was the only blood biopsy that tested for MSI Inestability (which is needed for immunotherapy). Before this we had worked with Guardant Health and had no billign issues but they don’t test for MSI. Guardant Health told me that is not rare for them to see monthly orders since blood biopsies are the only tests can accurately measure the genetic changes as treatment has began (yes damn tumors do evolve) thus the importance of monitoring during treatment.

    I am happy to see Foundation Medicine is catchign up and offering MSI testing for tissue samples, however, for those patients whose tissue sample is not available or not covered by their insurance, please do look at the other options. I am listing the information via images below: Cynvenio, OmniSeq, Paradigm, and Personal Genome Diagnostics. Again, these were given to me when I was desperate for solutions and the best part is that they are willign to work with families in regards to costs and billing

    beatriz
    Participant

    beatriz
    Participant

    beatriz
    Participant

    beatriz
    Participant

    beatriz
    Participant

    Thank You Gavin and Happy Holidays!

    I will make sure to take a minute and give my opinon.

    I also wanted to add to your posts the names of the companies that are willing to work with low income families, military,etc… The direct contact names were given to me when Cure Forward was around.

    My experience was that tumor tissue was too small and/or already used (whatever that means) and tissue testing was useless. That is when started reading on liquid biopsies and I settled for My Personal Genome Plasma SELECT 64 which is was the only blood biopsy that tested for MSI Inestability (which is needed for immunotherapy). Before this we had worked with Guardant Health and had no billign issues but they don’t test for MSI. Guardant Health told me that is not rare for them to see monthly orders since blood biopsies are the only tests can accurately measure the genetic changes as treatment has began (yes damn tumors do evolve) thus the importance of monitoring during treatment.

    I am happy to see Foundation Medicine is catchign up and offering MSI testing for tissue samples, however, for those patients whose tissue sample is not available or not covered by their insurance, please do look at the other options. I am enclosing the documents in pdf format which includes direct contact numbers for each company: Cynvenio, OmniSeq, Paradigm, and My Personal Genome Diagnostics. Again, these were given to me when I was desperate for solutions and the best part is that they are willign to work with families in regards to costs.

     

    in reply to: Please Help If You Can! #95843
    beatriz
    Participant

    Done! hope the research continues as both surgeries are extremely invasive with lots of side effects (infections being the worst).

    beatriz
    Participant

    Hi Mary and Gavin,

    I live in a rural area in Southern California (4 hours aways from Los Angeles) and yes people living in rural area have more obstacles to overcome when in comes to treatment period! it is even more complex when it involves rare cancers like cholangiocarcinoma because you have to deal with the primary doctors who may or may not refer you, then deal with the insurance, then making the appointment with the major cancer center (for us it was USC), then dealing with the whole cancer language, protocols, etc….and to get things more complicated if English is not the first language can you imagine trying to read about the clinical trials? or how to qualify for it.

    The whole thing is so complicated and complex that now wonder there is a big “gap” across the different patient categories (economic backgrounds, age, gender, language, etc…) that yes we are leaving hundreds of patients behind because of lack of information and above all access!

     

     

     

Viewing 15 posts - 1 through 15 (of 24 total)
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation