And Jumping Into Another Study ... 7 Years To The Day I Got The Call

NewHere
NewHere Member Posts: 1,429 Member
edited February 2022 in Colorectal Cancer #1

Last week I was told the study I was in was not working. Two days ago I spoke with my oncologist and we decided to go go back to FOLFOX to start, while keeping Stivarga in the wings if needed. Appointment scheduled for FOLFOX, but was told they would double check on studies.

Got an email later on that a study was open. Spoke with them yesterday, started getting ready today (paperwork, EKGs, still got some more to do.)

And it is 7 years ago today that I received an urgent call regarding a scan. It was pretty clear what was happening, though the biopsy was still a couple of weeks away.

Comments

  • Capox Dude
    Capox Dude Member Posts: 127 Member

    I look forward to reading your post in 7 years reminding us of both anniversaries.

  • PamRav
    PamRav Member Posts: 348 Member

    Good for you! Hope this will be the one that works.

    Best of Luck,

    pam

  • feckcancer
    feckcancer Member Posts: 189 Member

    That is great news. I hope it all goes really well.

    Your comment about neuropathy on your other post sent me down a neuropathy rabbit hole on the internet. Interestingly apparently curcumin, which is the part of turmeric that is meant to have the anti cancer properties, helps with neuropathy too but it is hard to get the curcumin to where it needs to go in the body to help. This sent me down another rabbit hole involving studies which are being done with curcumin & fruit & plant exosomes in which the fruit exosomes are used as a carrier to get the curcumin to a tumour & other parts of the body where it will help. There is lots of info on the internet and of course the studies use extracted fruit exosomes & curcumin but you could try a home grown experiment (after asking your oncologist of course) and take turmeric mixed with coconut milk or coconut water, cracked pepper & all or some of the following: grape, grapefruit, lemon, broccoli & ginger (these seem to be the plants used in the studies).

    Here is a link to one of the studies:

    Study Investigating the Ability of Plant Exosomes to Deliver Curcumin to Normal and Colon Cancer Tissue - Full Text View - ClinicalTrials.gov

    or here is a recipe for fire cider tonic I found, you could play around with it and add grapes, grapefruit & broccoli to it and take away anything you don't want in it and when it is finished add the recommended dose to coconut milk/water .

    Fire Cider: The Master Tonic For Immunity | Willamette Transplant

    if you try these check that grapefruit won't react with your medications though because it is known to react not well with a few.

    In the journey down these rabbit holes I also came across a few articles about manganese superoxide dismutase & it's anti cancer/cancer prevention properties which you might find interesting too. It is available as a supplement.

    I hope this is helpful to you & best of luck, I will be down at the beach tomorrow willing healing vibes towards you

    Take care, stay safe

  • NewHere
    NewHere Member Posts: 1,429 Member

    Thank you!! Bunch of people, including the pharmacist who will be monitoring things. I asked about turmeric and reshi mushrooms yesterday when I met with them. I also asked if they can slip me some fun drugs πŸ˜€ Unfortunately I got "no" across the board. Though they did laugh at the fun drugs part🀣 They did say there are many times where the turmeric and reshi are okay, and pointed out the part of MSK Website that has all these items listed, because of the drugs being studied, there is not enough information so hold off on them. The multi-vitamins and things like Vitamin B and Vitamin D pills were okay.

    I need to ask about grapefruit. On the study I was on grapefruit of any kind (juice or food) was to be avoided. Contraindicated. Bummed me out because I love grapefruit. Thankfully the drug trial did not work and I can have grapefruit again πŸ˜‰


    The following is really cool. I love all of those things. Put a plate of raw broccoli, carrots, snow peas, peppers and I am a happy camper. Be safe at the beach, keeping an eye on what is happening with the weather.

    coconut milk or coconut water, cracked pepper & all or some of the following: grape, grapefruit, lemon, broccoli & ginger (these seem to be the plants used in the studies).

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member

    I read somewhere the reason grapefruit should be avoided is it is a chemo synthesizer.

    Haven't really dug into the claim but anyway...

  • NewHere
    NewHere Member Posts: 1,429 Member

    I had never had that specific warning when taking a drug. Olaparib, I got the warning every time they gave me the pills. No grapefruit. No Seville oranges. Any orange other than Seville oranges was fine. Kind of wild.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member

    Ya, that is wild.

    When I began xeloda the only warning was avoid grapefruit. When I asked why of course they don't tell you details just that it interferes with xeloda.

  • NewHere
    NewHere Member Posts: 1,429 Member

    I think this is what they mentioned to me (generally) about grapefruit juice increasing uptake of drug. FDA has a list of other drugs that also are affected. I am betting Xeloda probably is the same thing.

    https://www.breastcancer.org/treatment/targeted_therapies/lynparza

    https://www.fda.gov/consumers/consumer-updates/grapefruit-juice-and-some-drugs-dont-mix

    But of course this uptake issue can be good. Maybe. πŸ˜€ This is interesting. Because it increases uptake you need less amount of the drug. Of course each person is unique in all of this, but I am guessing the grapefruit juice adds another variable which is hard to plan for. Plus you have variations in grapefruit juice I would guess.

    https://www.dailymail.co.uk/health/article-2185263/Grapefruit-juice-cancer-drugs-dramatic-boost-effectiveness.html

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member

    Mhmmmm

    Thanks for the studies.

    I wish you so much luck with the trial.

  • abita
    abita Member Posts: 1,152 Member

    Grapefruit impedes the way some drugs are processed by the body. It is contraindicated for many drugs. I love ruby red grapefruit and it was one of the questions I asked. It was contraindicated for the last drug I was on.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member

    I was reading on another site where someone was drinking grapefruit juice with the xeloda and has been for a while. No problems blood work or anything. Interesting!

    Have you began the trial yet?

  • feckcancer
    feckcancer Member Posts: 189 Member

    Reporting back to say I made the fire cider last week and also added broccoli and a handful of other green herb things. I did it in a magic butter machine (on 4 hour tincture setting ). It tastes and smells horrible so I hold my breath and neck it down like it's a shot of alcohol then lots of water (should be using coconut juice or milk really to make it as effective possible)

    so that means it's really good for me right ?

    plus adding on to grapefruit : Many drugs are broken down (metabolized) with the help of a vital enzyme called CYP3A4 in the small intestine. Grapefruit juiceΒ can block the action of intestinal CYP3A4, so instead of being metabolized, more of the drug enters the blood and stays in the body longer. The result: too much drug in your body.

    Fire Cider: The Master Tonic For Immunity | Willamette Transplan

    Amazon.com: MagicalButter

  • Wadsdan777
    Wadsdan777 Member Posts: 20 Member

    Such an inspirational story for other stage 4 patients like me newhere - thank you for sharing. May I ask where you are being treated at/where your trial is?


    Thanks!

  • NewHere
    NewHere Member Posts: 1,429 Member

    I am back at Memorial Sloan Kettering. The last trial was at Yale.

  • CornellDeville
    CornellDeville Member Posts: 14 Member

    Interesting info on the grapefruit. I was beginning to think that all cancer drug manufacturers had a vendetta against grapefruit growers because almost all of them prohibit intake of grapefruit in any form with their drugs. Now it makes more sense after reading these comments.