Jane McLelland protocol / COC protocol for STAGE IV members ONLY

1212224262729

Comments

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    Personally if I called her right now and said "I want to do abraxane" she would be like "YES come on in!!!"...I think she is leaning towards the Doxil for me...because when we were talking IV Chemo last visit (before we decided to give Xeloda 7 more weeks) I was saying that I have to travel to Long Island every month FEB, March, April and May..and Abraxane is every week for 3 weeks in a row...1 week off..and I asked how she felt about going to Doxil first...and she said traditionally they would go with Abraxane first then onto doxil....but she would be ok with doing it the other way around..that doxil is easier. So I "think" she said Doxil first because she thinks I would prefer that.

    My family and friends want me to go to Abraxane first...but they don't understand...my MO will not stop Abraxane till Abraxane stops working...I just don't know that I want to go to that YET..... I am actually having high hopes for the Astaxanthin with the Xeloda...I feel like I didn't give the Ibrance/Letrozole/Faslodex extra time and I should give the Xeloda that...7 weeks is nothing...I only have 5 left....

    Husband, just curious.... you would go to Abraxane if the Xeloda failed?

  • husband11
    husband11 Member Posts: 1,287
    edited March 2020

    I don't have the knowledge to choose between abraxane and doxil.

    Is doxil easier because of the scheduling, or is it less side effects?

    I read recently about an oral abraxane, but that might still be experimental. They said it would have less side effects. You had to take some drug first on an empty stomach, then an hour later the oral abraxane.


    https://www.ajmc.com/conferences/sabcs-2019/oral-p...

  • anotherone
    anotherone Member Posts: 555
    edited March 2020
  • husband11
    husband11 Member Posts: 1,287
    edited March 2020

    According to an email I just received from COC, there appears to be a new medication they are adding to some or all patients. It says to ask about your eligibility during your next meeting. Anyone know anything more?

  • anotherone
    anotherone Member Posts: 555
    edited March 2020

    they just added flarin (I think it is a form of ibuprofen which does not irritate stomach too much) to my prescription.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    Hrmmmm Interesting...I guess that is an anti inflammatory.... See I believe we NEED THIS!!! I believe specifically for me my cancer feeds off inflammation - primarily (I know I have said this before)....I cannot wait to get my blood work on the 19th because I just NEED to start adding back in either the LDN or the MSM for this exact reason!

    Anotherone thank you for letting us all know about that!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    Husband Sorry I didn't answer your question... doxil is easier because of both...Side Effects and you only get it once a month.

  • husband11
    husband11 Member Posts: 1,287
    edited March 2020

    Sounds like Doxil would be a decent first choice. I personally wouldn't go right away to the harshest treatment, even if it had a better chance of working. Why forgo something that might also work and leave you not feeling as bad? That's why my wife went with xeloda over IV chemo, and she was glad she went that way because although it was supposedly had less chance of working, it worked.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    Thanks Husband! :)

  • karpc
    karpc Member Posts: 192
    edited March 2020

    The more I become familiar with the repurposed drugs and supplements Jane recommends, the more I see positive studies about her recommendations. While I am most interested in the relevant studies about cancer and the use of repurposed drugs, it's interesting to see some of these drugs come up as potential inhibitors of COVID-19.

    As we know from the news, testing is being done with chloroquine / hydroxy-chloroquine as a potential treatment for COVID-19. Jane recommends chloroquine / hydroxy-chloroquine for Macropinocytosis (Autophagy) on her metro map and for Abnormal Cell Signaling (toll like receptors, EGFR epidermal growth factor receptor).

    In addition, a new study suggests that curcumin, quercetin, EGCG (green tea extract) along with other supplements/repurposed drugs may inhibit COVID-19.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    KarPC what you said is all very true...but KNOW this.....chloroquine is VERY VERY VERY hard on the liver. So those with liver mets will most assuredly have raised enzymes and possible inflammation so much that they probably wont be able to tolerate it. :(

    The ONLY problem with Janes protocol from what I am learning from Oncologist who is totally on board with it and from others...is that the dosing that MOST of us would need for the off labels to make a difference is so high that our bodies wouldn't be able to tolerate it. I say this MOSTLY with regards to Stage 4 specifically...and NOT about Stage1 , 2 or even 3.

    This doesn't of course include something like Metformin...or LDN...though...once we start taking more than 2 or 3 drugs/supplments are liver enzymes tend to start climbing... :(

    Just my opinion and what I have learned over the past 8 months seriously researching this.

    Am I still gonna try to take everything I can...HECK YEA>...lol we gotta try right? :)



  • husband11
    husband11 Member Posts: 1,287
    edited March 2020

    I would like to know more about the risk of damage to the liver from these drugs. Is if safe for a patient with liver mets to take them? My wife's liver values are elevated since starting COC. They have told us they don't think its from the COC drugs. Sort of reassuring, or not. Its a big act of faith to rely on them and their expertise in knowing how these drugs interact with standard therapy.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    Husband I took 5 days of the Mebedazole..and my ALT and AST which were 34 and 39 NEVER EVER elevated went to 230 and 300.....I stopped it...and in a week back down to 25 and 27

  • karpc
    karpc Member Posts: 192
    edited March 2020

    That's scary about your ALT & AST numbers elevating like that Nicole. I am glad you figured out the cause so quickly.

    I am also concerned about how the COC drugs could be hard on my liver. After a few months of taking the COC drugs plus other drugs/supplements which Jane recommends (and hydroxy-chloroquine), my AST and ALT have stayed in the normal range. However, my ALT and AST have always been in the normal range even though I have liver mets, so I may not be a good example.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    My ALT and AST were ALWAYS normal...only after taking all the supplements...and off labels and chemo...did they elevate and specifically when the Mebedazole was added..and I have now had 2 doctors tell me that all the antibiotics that end in "zole" > hence mebedazole all can be hard on liver.


  • karpc
    karpc Member Posts: 192
    edited March 2020

    Nicole. I forgot to mention how I stop taking the protocol 3 days before I get blood work. Maybe my ALT and AST are elevated during the protocol and then return back to normal within days like yours did.

  • bsandra
    bsandra Member Posts: 1,031
    edited March 2020

    You guys have mentioned a very important thing that needs to be addressed every time: control. Use the drug but control your blood/liver/kidney numbers, etc. That is a feedback, a very important component in treatment. I would also recommend to use supplements in cycles (x days on/ y days off), unless it is very well known that they do not cause anything. Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    good idea Saulius.

    Kar...it took my numbers 2 weeks to get normal the were dropping but slowly. Do you get blood work ever 4 weeks? I get it every 2 weeks so for me to stop 3 days prior I would only be on it 4 days a week ..every week. I dont think that would be anywhere near enough to block a pathway.

  • husband11
    husband11 Member Posts: 1,287
    edited March 2020

    Nicole, were there other COC protocol drugs that you were also on? My wife is doing the COC with alternating months of mebendazole vs the antibiotic, continuing statin and metformin continuously. Her liver values have also jumped alarmingly, but not as high as yours. She also has mild ascites now.

    No growth of the cancer, but an elevation in the CEA. Rather disappointing results from 3 months on COC. She was previously stable, so we can't say the COC did anything positive.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited March 2020

    Husband...I was on...:

    Melatonin 20mg

    mebedazole (just 5 days 100mg)

    MSM 750 mg 1 x a day

    Vit D3 4000 IU/day

    Vit A & K (not sure of amount but not high)

    Magnesium Citrate 400mg

    Magnesium Malate 150mg

    Low Dose Baby Aspirin

    Low Dose Naltrexone 3mg

    Probiotic

    Xeloda

    Claritan D

    Metformin

    Berberine (every 3 weeks off 2 weeks)


    Now to be clear...I have for the past 10 years taken 2000IU/Day Vit D3 and 400mg Magnesium (so that definitely had nothing to do with the levels.

    I believe the Mebedazole was the BIGGEST culprit...but...the LDN and Metformin and of course Berberine can be very hard on liver too...so I think I was just taking too much with the Xeloda... I am going (after tomorrows appointment) add back in either the LDN or MSM...I am SOOOOOO torn about this. One of them was really reducing any joint pain (prob the MSM for that) and Inflammation... (prob the LDN)....so I have to make that choice...after I add one in I will wait 2 week or 4 then add in either the Metformin or Berberine....

  • husband11
    husband11 Member Posts: 1,287
    edited March 2020

    My wife had been on metformin for 5+ years, maybe even 8 years.

    She is going to quit the COC protocol and just stick with the tried and true formula that was working for her, ibrance, letrozole, metformin and maitake D extract.

    Something is raising her liver value, her CEA, and causing bowel problems.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2020

    Husband11 How is your wife's liver numbers now? I re-did my blood work on the off week of chemo and my Bilirubin went from 3.6 to 1.9 so Xeloda for me, is definitely hard on my liver even though they say it is processed in the kidneys!


  • husband11
    husband11 Member Posts: 1,287
    edited April 2020

    Hi Nicole!

    My wife hasn't had a blood test recently, so we don't know anything new. I'm not saying its the COC protocol, but since quitting, my wife feels better. Much less stomach problems and feeling bloated, but it could be entirely unrelated. She will have another blood test in a few weeks. She isn't looking forward to going out, with the covid 19 epidemic, its scary to go outside the house. I do all the shopping now. But we do go for walks outside when its nice out. How are you doing?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2020

    I am good but our son in NY has it and now his fiancee that has been taking care of him got a fever today. My son had fevers from Thursday night high all 102 - 102.5 now today they have been 101. he has a rash now (they believe probably from the high fevers) all over his entire body and its painful and itchy (like sunburn is)...and now today the cough starting to get bad...said it feels like hes been swimming for a long time...they tested him Saturday but are 100% sure it corona because there were a lot of cases of it in the Assisted Living Facility he works in...hes an occupational therapist so he had to go to work because some of his patients can't even get out of bed so if he didn't get them up they could get pheumonia and die....The other morning he was so dizzy he passed out and thought he broke his nose it was bleeding and all black and blue. The hospitals wont let anyone come there for anything unless they cannot breath. We are just so worried now because of his breathing. Other than that...I am ok...I get MRI of the liver April 13th...to finally see if Xeloda is working...

  • husband11
    husband11 Member Posts: 1,287
    edited April 2020

    Oh, I am so sorry to hear that Nicole. I will pray for him and his fiancé. Is there any use being made of chloroquine for treatment in New York? I've heard so much about it in the news, controversy, off label prescriptions and trials. If we could only get a treatment, as a vaccine seems a long way off.

  • bsandra
    bsandra Member Posts: 1,031
    edited April 2020

    Dear Nicole, I am sorry for your son, please hang-in there... sending all the warmest wishes and peace of mind, Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2020

    Thank you so much Husband and Saulius.... that means a lot.

    Husband No I think they are only using that on the WORST cases...like the ones admitted in hospital...(as far as I know)... There are no treatments for any of it and nothing they are recommending to take except Tylenol.

    Today was better he only had a fever once and it was lower at 99.5. We will see how the night goes. She has not had another fever yet today...I am hoping she is not getting it as bad as he had it....but his body is beaten up right now..I mean 7 days of fevers over 102.....is horrible. Now he has to go in hot steamy showers every couple of hours to be able to breathe...they are doing some breathing excersizes that were recommended on line and she pats his back up and down all day and night...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2020

    Hi all...any one read up on Parsley - Apigenin??


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5629766/

    Looks to be good but I am seeing some conflicting info about it with 5FU chemos...(not in the article but elsewhere)

    Anythoughts...I believe it blocks a few pathways....


  • JFL
    JFL Member Posts: 1,373
    edited April 2020

    Nicole, I haven't heard of apigenin but it sounds interesting.

    Is anyone obtaining mebendazole outside of the COC protocol? If so, have you run into issues lately having your prescription filled? I am trying to find a way to obtain mebendazole outside the COC protocol. The supply from the COC is currently unavailable. Not sure if it is a shortage of mebendazole across the board or a COC-specific issue.

  • BevJen
    BevJen Member Posts: 2,341
    edited April 2020

    JFL,

    I haven't seen anyone say this on this board, but on the Jane McLelland board on Facebook, several people were talking about this and I think they listed a compounding pharmacy in NJ where they are able to get mebendazole. Not sure how they are handling the prescription, if COC provides it or not. Are you on that board? It's a bit overwhelming, and you have to apply to go on it, but I look at it from time to time. If you're not on Facebook, PM me and I'll copy the info and send it to you.

    Just curious -- has COC reduced the cost of their drugs accordingly? On the Facebook page, people were saying that they were paying a decent amount for the mebendazole in addition to their COC charges.

    I still haven't started COC but am moving closer every day.

    Bev