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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    image

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    image

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    image

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Anotherone, congrats on getting a neuropathic DOC so well known.

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Nicole,

    Nice pics. You and your husband are a beautiful couple and you look so happy.


  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Simone... I have a quick questions for you...what are the doses again of the mebedazole and doxy?

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    congratulations Nicole! You and your husband make a beautiful couple!

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    What beautiful pictures Nicole!

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Nicole, 100 mg each.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Simone.

    Thanks Frisky and Husband. :)

  • divinemrsm
    divinemrsm Member Posts: 6,154
    edited November 2019
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    Nicole, you are a knockout in that gorgeous white gown and upswept hair. You look incredibly elegant.

    I have to say, your best accessory is that Marine! Of course, you know that! I rarely go gaga over photos of men, but I would like to date your husband! LOL!!!


  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Divine...he is my inspiration...I just pray I make it to his retirement (6 years ) :(

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Nicole, you and your DH look so beautiful and happy! You both look so young, hard to imagine your DH is nearing retirement! People must mistake you for siblings of your children rather than the parents :)

    I have a PET scan in the morning. Feel like I am walking the plank. I feel as if tomorrow will be an exercise in how bad is the "damage" rather than is there damage? I wish I had been on the COC protocol for longer before being scanned. Maybe it could have started to slow down the resistance if given time to do so. Just a hope, not an expectation.

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    JFL...I intuitively feel different about your pet scan...you might have to switch gears but I think you're going to be fine..consider me right there in your pocket as you get prepped for it!!

    You will continue to be treated and adding the COC protocol could delay progression for years...you also have a great mo that collaborates with you... so you're in good hands...

    Mine will be on dec 3, I finally managed to confront my own nightmare....Doxil is keeping things stable it seems, which is better than nothing, but ILC is sneaky....who knows when they'll be able to properly scan it...usually it shows up when it's too late...but I'm already doithe best I can, so What will be will be...

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Frisky, I hope you are right. The trend of my labwork is showing a different story but . . . .

    I have only been on the COC protocol for a week and a half or so. And I am only on part of the protocol as the COC MO is asking me to hold off on starting the statin given my liver enzymes (which are only mildly elevated). Odd but whatever. I think if given a bit of time, the protocol could get things into check to possibly prolong my current treatment a bit. However, a week and a half of 2/3 of the protocol is not likely enough to get anything going. Add that to that the fact I was required to stop metformin 2 days before the scan. For the last 2 days, I am only doing 1/3 of the protocol. I do notice an impact from the metformin. In addition to lowering blood sugar, it is supposed to prevent the body from storing glucose (temporarily) in the liver. My liver has been starting to hurt later in the day or when I am full the last month or so, when things seem to be cramped in my abdomen. Apparently, the liver can increase in size by 50% throughout the day as it serves as a short-term storage facility for sugar and fat. My liver must not be increasing as much when I am on the metformin because I wasn't getting that same late day pain due to expanded liver. Not sure if the metformin is helping the cancer but it definitely is having an impact on my blood sugar. I have found myself needing to carry around small snacks in my bag and at work to avoid low blood sugar symptoms.

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    JFL, It's good to remember that the various COC medications are supposed to block the various pathways the cancer uses to find other feeding grounds...thus making whatever medication we're on last longer...

    While you wait, there's no reason you couldn't use quercitin instead of the statin for example ...because it won't affect the liver BUT blocks the same pathway as the statins....I think one tablespoon in something like a healthy drink would be sufficient...

    Repeated studies mention dry powered ginger as a powerful anti-carcinogenic and anti-inflammatory...I warm up a cup of almond milk and dissolve two tablespoons of ginger...a little stevia and it's quite wonderful...you must feel the heat from the ginger for it to be effective...

    All these herbs and spices used continually will produce good proven results...

    I'm now drinking 4 cups of green tea @ day...instead of coffee...I sleep better at night and the tea gentle effect mentally stimulates throughout the day...I make a big pot and sip all day....

    To counter act the metformin...eat some complex healthy carbs with every meal...it should preclude huge drops...70 and 80 are optimal numbers..

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    JFL good luck !!!!! It's gonna be ok and now you are on the COC and hopefully that will kick in some good results soon!

    PS: Thank you so much for the compliments :)

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Cross-posting this. Some of you will see in this a few different threads:

    Update on my PET - I haven't received the results or radiology report yet but my DH did review the scan himself as he has access to my results. As suspected, PET lit up "a lot" in my liver and the lesions have grown a bit. Have no idea what is next, in additional to the COC protocol. Maybe Gemzar? I will also look into 2nd Y90.
  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    JFL...definitely book a IR consult!! How many mets are in your liver? What are the sizes? I am so sorry about the progression I am praying the COC protocol works well for you!

    Thanks for all your well wishes... My surgery went well...but when we got home had to call 911 and go to ER...apparently the CO2 they filled my belly with they didn't get enough out..and I was in horrific pain. We left the hospital late at night. I was just sobbing in pain until about 3am finally dozed off for about 2 hours..today is a little better not excruciating but still very bad. I didn't take any pain pills..I couldn't especially after the constipation bout I had last week. My entire torso, shoulders, neck, back, front, lower and upper abdomen even my chest but especially the diaphragm is all in pain.I cannot take a deep breath its just horrible. I have been drinking prune juice taking miralax 2 times a day and eating prunes..I went today but I am keeping up the regiment for now.

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Nicole, that sounds awful and painful! You do not deserve to be in that kind of pain. I hope things continue to improve. Pain aside, I am glad the surgery went well.

    I have what is described as "innumerable" mets both diffuse (small bits marbled throughout my liver) as well as tumors. Some of the diffuse mets converge into a large blob as well. It has been a while since I have seen a measurement of tumor size in my scans - sometimes they are included, sometimes not. The measurable lesions are usually in the 3 - 6 cm size. There is just such a party going on in my liver, the IRs are not too bothered about calling out the specifics, it seems. Innumerable pretty much sums it up!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    JFL...so am I correct that you got 1 year out of Ibrance, 1 year out of Xeloda?

    I think you starting the COC protocol now is gonna be very good. I definitely would consult with an IR and maybe even 2. I don't know what state you are in but I can tell you I liked my IR at Hopkins...he is the Chief of IR there (I believe) and does the MOST Cryoblations...amongst other procedures...I do not know if you are close to Maryland..but if you are I would consider a consult there.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    I hope you feel better soon Nicole.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019
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    Husband 11,

    With COC you upload your bloodwork and scan results to a portal. They do not read the actual films or request a copy of the CD.

    I did not tell my oncologist about COC, not because I want to hide it or think she would disapprove... She is really great and put me on Metformin when I expressed my thoughts on it being a good addition to my meds, but I do feel she is wholly protocol driven. She takes the times to look at this or that article I pull off of PubMed but hasn't taken the bait on anything yet. The admin staff does have all the medications on am on in me record, I did disclose this.

    Best,

    Stacey


  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Nicole, yes, I was on my first line of Aromasin/Faslodex/Ibrance for 15 months and Xeloda for 14 months. However, Ibrance was not approved when I started my first line but was added in after 8 months or so, once approved with my drug combo. My liver has been filled with mets since day 1, the volume has varied between as high as 70% of my liver consisting of mets after I failed my first line Ibrance cocktail to 10% after I had been on Xeloda for a while, but usually hangs out around 25-30% of my liver consisting of mets. My liver has never again been as bad as it was when I failed Ibrance. Ibrance is known to initiate liver "explosions" of mets in many people once it fails.

    Thanks for the info about your IR. I did extensive research in finding my first Y90 IR and he was amazing. I found someone who has an excellent pedigree and a focus on oncology as well as specifically Y90 and other local liver therapies for breast cancer patients. He also is involved in ongoing research about these local treatments and even the "abscopal effect". In consulting with other IRs, I learned that IRs who have mostly experience in colon mets and liver cancer (the typical cancers using liver local therapies) do not have the full scope of information to best treat breast patients. Also, many IRs are generalists and do a bit of cancer among garden variety other procedures (such as biopsies). I had another very good IR with experience in Y90 tell me that I would go into liver failure from Y90 because I was "heavily pretreated" (based on his experience with colon / liver cancer patients) and that I was not a Y90 candidate. My IR, who has much more experience, told me I was an "ideal candidate" based on the three key factors assessed in Y90 patients in breast cancer. After I told my MO about this, my MO explained to me that colon and liver mets do not have many chemo options, unlike breast cancer, which has many, many more options. The primary chemo used for those types of cancer, Irinotecan, does cause cumulative liver damage. Thus, in those patients, liver failure is a bigger risk in the heavily pretreated population. However, in breast cancer, heavily pretreated does not equate to cumulative liver damage given the chemo options we typically use which are not generally associated with permanent liver damage. Also, whereas Y90 used to be used only for "salvage therapy" when no other alternative treatments exist, it is now used earlier in patients who are in better condition and the medical field is seeing better results this way. If I need a second opinion or feel I have different needs this time around, I will definitely consider your IR and others! I have no issues traveling anywhere in the country. However, if I am doing Y90 round #2, I will likely stay with mine. Other than TACE (chemoembolization), I don't believe I am a candidate for other local liver treatments, most of which are not available to patients with large volume and/or diffuse liver mets like me.

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    JFL,

    Just to follow up on your note -- regarding TACE, from my understanding of this procedure, it's done gradually over time so as not to stress the liver too much at one time. Thus, if you liver tumors are diffuse as you described, it would be a LONG haul for you to get chemoembolization to any number of your mets. It sounds like your IR is absolutely perfect for your situation, and I know that you were pleased with him on the first go-round. Good luck.

    Also, thanks for the reminder about the "liver explosion" when Ibrance fails. Right now I am waiting to see whether or not Ibrance is failing or not. My scans say maybe, but my tumor markers say it's not failing. Next month will be the definitive point -- if the tumor markers continue to fall, we are going to call it as working. If not, we switch treatments. I have the ERBB2 mutation, and my MO has said that she's got a number of patients with that and that Ibrance doesn't last as long for those folks as for others. So we are now looking at piqray (not my favorite, but I have that PIK3 mutation); atezo (tecentriq), an immunotherapy drug in a trial; or possibly adding HER2+ drug(s) because of that ERBB2 mutation. In any event, I surely don't want the "liver explosion" so I don't want to let things go too long if it looks like Ibrance is starting to fail (I've only been on it since July!!!)

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    JFL wow thank you for all that information and your journey. I am amazed that your liver at one point had been covered with so many mets. I am encouraged though at your bodies "FIGHT"!!!! I think the COC meds are going to make a difference.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Ok all...so please pitch in here with any info you all may have. As you guys know I am about to start Xeloda...I CANNOT post this in the XELODA thread as I already got SH** about it...so I am going to ask something similar here and HOPE that someone has some info. I am going to be taking the following things with the Xeloda and want to know if anyone knows of why any of these should not be taken with it. I have already searched and searched the internet.

    Doxy, Mebedazole, Propranolol, Mushroom Complex, Claritan D, Vit D3, Magnesium Citrate, K2, Metformin 1 x a day , Berberine 1 x day.

    ALA - I have a note to myself not to take with X...but I don't know why or where I found out that??? UGHH

    B12 & B6 I would like to take on the off week of chemo when I get the IV-C.

    I may cross post this and ask those in the Ringworm thread to look at this....


  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    Off the top of my head I can say that the mushroom complex, Vit D3, and Metformin shouldn't cause a problem with xeloda.

    When I get more time I will look into the others. Xeloda is Cyp2C9 metabolized. What you want to check is that none of the others inhibit Cyp2C9.

    I know from my own chart, that oil of oregano, bromelain and green tea all inhibit Cyp2C9. Not sure about the others.

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    Nicole,

    Within the last week, someone posted something about Cyp2C9 and not using Berberine. I read it late one night, and I don't remember where. But I made a mental note to check that because the reference was to Ibrance, if I'm not mistaken. I'd check that one out. Thanks, Husband, for jogging my memory.