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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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    Thanks Husband and Bev. Bev I will search that.

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Nicole, I am not aware of any concerns with those meds off the top of my head but have not researched those specifically except that I did take Vitamin D3 when I was on Xeloda and found no contraindicationsl

    BevJen, thanks for the additional info about TACE. Sounds like I may not be the best candidate for that one! I hope you find that Ibrance is still working. You do have a lot of good options as backup.

    I met with my MO today and started Gemzar. He told me I could choose between Piqray/Faslodex and Gemzar. I chose Gemzar and that was his first choice as well. I was surprised, I thought his first choice would be Piqray. He said that Gemzar is much more tolerable than Piqray. I was not expecting that. I have heard Piqray is a tough medicine from others in this forum but didn't expect him to say that. I am hoping I can start the statin on the COC protocol soon. However, the COC MO is in no rush. Frustrating but maybe she has good reason . . . .

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

    Good luck on the Gemzar. I have no experience at all with that one.

    Piqray is one of the drugs potentially on my horizon. There is a piqray thread on the boards, although since it's such a newly available drug, there isn't too much info on there. Some folks are tolerating well, others not so well. It sounds like a mixed bag, although some folks have really nasty side effects.


  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    I can't find anything that would indicate an interaction between doxycycline and xeloda. According to the professional monograph, doxycycline isn't metabolized by the liver.

    Edit to add: mebendazole is a mild inhibitor of cyp2c9 according to one in vitro analysis. There are very few drug interactions listed between mebendazole and anything. Not sure what to make of that report of mild inhibition. It means there is a theoretical possibility that mebendazole could reduce the effectiveness of xeloda. I think that since COC is marketed towards colorectal cancer patients, and many would be taking xeloda, I would try to find out if there are any COC patients who have cleared xeloda with the COC consult process. They certainly ask about your current treatment.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Husband. I believe someone told me just yesterday on facebook her husband has colon cancer and is on Xeloda and doing COC...I will double check.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    We had our COC meeting with the Doctor last night. One issue is the frequency at which my wife gets her blood work done. COC wants monthly blood work to monitor her liver's reaction to the drugs. As she is on Ibrance, she ought to be monitored monthly before renewing her ibrance. However, about 6 months ago the Onc told us she is only going to do blood tests every 2 or 3 months as my wife has been stable on the ibrance. That sounded good at the time, as my wife has a really hard time getting her blood drawn, its typically quite an ordeal as they have difficulty getting any. But now, with COC requiring it monthly, we have a problem. We don't want to tell our Oncologist. So, my wife is pondering asking her GP to get monthly blood testing. Failing that, we may have to drive to the States to get it done.

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    Husband, having your primary physician do the testing is the solution...also you could find out from the COC what exactly they need to know, thus reducing needless tests and the need for additional blood vials from your wife.

  • anotherone
    anotherone Member Posts: 547
    edited November 2019
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    do you have clinics that offer just tests , husband ?

    Here in the UK there are labs that arrange for bloods to be done by some hospital or clinic's phlebotimists and sent to them.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    Here with our rules, there are no private labs that can take services for pay. Only the Doctor can order lab work, which is covered by our medical system. So, the issue is getting a Doctor who won't question why, to order the blood work. That isn't going to happen through our Oncologist unless we misrepresent why we want it done. And we are not prepared to do that. My wife is going to ask her personal physician, and I encourage her to tell him exactly why. If he won't do it, then we will have to drive to the states and pay $200 USD to have it done.

    COC wants a CBC and CMP, so that's the standard blood test plus liver panels.

  • anotherone
    anotherone Member Posts: 547
    edited November 2019
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    here a doctor has to authorise and review tests as well but it can be done remotely so one goes on a website, choose the test , chooses the venue, pays and arranges for a time slot for it or not depending on how the local service is run, fills in the form of why the test is something on those lines and it is sorted.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband I would ask your wife doctor to draw the labs every month because you want to keep an eye on her liver...just say that. Plus I am shocked they wouldn't check every month...my 2nd MO wanted every 2 weeks on Ibrance.

    SO I think I am going to kind of pulse the doxy and medbedazole...I am thinking that I will do each for 10 days then take 3 to 4 weeks off then 10 days each again. The doxy can be extremely hard on gut eating up the good bacteria...also the liver processes the doxy. The mebedazole is not processed in the liver....

    I have not figured out my deal with the IVC yet... I originally wanted to do it 2 times every other week (the off week of chemo) but ...now I found out its like $170 every time...I cannot afford that 4 times a month every month...so...I am wondering 2 things (and if any of you have any thoughts let me know) 1. Should I just do it once a week, every other week (the off week of chemo) will that be enough? or 2. Just wait for a few months see if the Xeloda gets me to NED then Do it like 3 or 4 times in 1 week like a kill phase for any stem cells left behind from the Xeloda?

  • anotherone
    anotherone Member Posts: 547
    edited November 2019
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    Three comments, Nicol :

    1. This link says that doxycycline is eliminated unchanged , ie liver is not tasked with metabolism it so should not have effect on liver ( this is my conclusion,, open to be corrected)

    https://academic.oup.com/jac/article/58/2/256/7185...

    2. People from COC told me in 100 mg dose it should not affect microbiome in a way in which antibiotics usually do.

    3. I was advised vit C is better in combination with chemo. Given financial limitations ( I would have loved to have an access to vit C at those prices btw) I probably would have done once 3 sessions in one week. Whether it is going to help or not is debatable. Studies that I looked used from 8 to 50 odd sessions per patient. Apparently with 8 only there was already some effect. I could not figure out whether it is strictly linearly does dependant or not as it is not that relevant to me - if I have another lot I probably will go for a local standard course of 12. Or may be will go to cancer retreat in Poland and for 3 weeks and do whatever they offer in that timeframe. So quantity and frequency will be pre selected already.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Anotherone...I think I am coming up with something different...that it is in fact a source of definite interaction with liver :

    https://www.drugs.com/disease-interactions/doxycycline.html

    Reduced dosages may be appropriate, particularly with minocycline and doxycycline, since the former is metabolized by the liver and the latter undergoes enterohepatic recycling. Liver function tests are recommended prior to and during therapy, and the concomitant use of other potentially hepatotoxic drugs should be avoided.

    Enterohepatic circulation refers to the circulation of biliary acids, bilirubin, drugs or other substances from the liver to the bile, followed by entry into the small intestine, absorption by the enterocyte and transport back to the liver.


    With regards to the microbiome...

    https://www.pharmaceutical-technology.com/comment/acne-treatment-doxycyclines-side-effects-outweigh-benefits/


  • thrivingmama
    thrivingmama Member Posts: 133
    edited November 2019
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    Husband11 - great to hear you had the consult and sorry about the lab challenges. hopefully her primary doc will agree to monitor lab work more frequently.

    Has anyone heard from HLB? She was starting the protocol last we heard from her

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    No, HLB hasn't posted anything since Oct.

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    I hope HLB is just busy and off the boards . . . .

    Husband, I agree with Nicole - can't you just tell the MO that your wife is having a lot of anxiety about the bloodwork so far apart and would prefer monthly for peace of mind and to have the opportunity to move quickly if, for example, the LFTs suddenly shoot up.


  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    The consult with the COC Doctor told us that they plan:

    Mebendazole for one month, then Doxycycline for another month, repeat

    Metformin 3 x 500mg continuous

    Lipitor continuous

    The strategy of having my wife talk to her Onc and telling him / her that she wants monthly testing is a good idea. I don't know exactly how or why they justified dropping the frequency. I think my wife agreed to it because less pokes the better with her veins.

    On the subject of vitamin C IV, I thought we had discussed the synergy between doxycycline and IV C on cancer stem cells:


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC56201...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband ..vit c IV yes we did I am definitely doing it and will be having to do it while on doxy and when I am on Mebedazole...my original issue was.. do I do it with Doxy bc jane changed her thoughts on that..but I have no choice now because my chemo is on 1 week off the next... my question now was I found out the total cost...and I would only be able to either:

    Do it 1 time a week (on the chemo off week )- which is 1 time every other week

    or wait a few months see how I do on the Xeloda then

    On my off week do like 3 or 4 sessions to blast remaining stem cells...

    I am torn because I don't know if doing 1 session every other week will even do anything??


    Husband: Ref Doxy and Medbedazole..did the COC tell you how long , how many months she will rotate those drugs?? Is there any time off ?? Or she will just continuously take those drugs all year? Thats like being in a constant kill phase?


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

    Thanks for posting that article about doxy and vit. c. I must be reading too many of these types of articles, because I can almost understand that one! Also noted that the group responsible for that article is mostly from the University of Selford (sp) and include Michael Lisanti, the doc responsible for a lot of the research on using antibiotics against breast cancer. Interesting article.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    yea there is no doubt it was good with doxy..but jane said this :

    On June 29, in response to a thread created by Denise Haire, Jane McLelland wrote: "I recently came across this article which makes me concerned now about adding doxy to a kill phase. I am thinking MBZ best with high dose IVC and Doxy best during starve phase only (liposomal vit C).
    You need to optimise H2O2 if you're going to do it. There is an article link to back it up on page 9 here. Husband pointed out though that in that article the testing was done on vein grafts....not going to get into all that but I agreed I would risk it and do it with the doxy but for me its actually doesn't even matter because I will either be on doxy or mebedazole (depending on my off week) anyway.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited November 2019
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    nicole, the side effects considered tolerable for use treating acne would be pretty different than the tolerable side effects to get rid of a lethal disease... its always a comparison of risk to benefit....

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    The COC doc didn't say anything about stopping the treatment. I got the impression that you keep it up as long as you can because you can never know that you are cured.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband you definitely need to get your wife liver numbers checked monthly. The doxy is metabolized or at the least it undergoes enterohepatic recycling as stated above in the article I posted. I am in contact with a very scientific friend...for lack of a better term...lol anyway he said doxy taken for a month at a time all the time indefinitely can be hard on the liver so you need to watch those numbers bc right now your wife regular MO doesn't know you are taking it right? So if the see them SKYROCKETED they are gonna think its the Ibrance or what ever else they treat her with...where as if you check them monthly and they go up a little and she takes ALA (she cannot take the milk thistle on ibrance) you may get them down and if you don't that 2nd month then you back off some of the COC till they come down. Just my thoughts

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Here is some encouragement for breast cancer women on I/L and Janes protocol: (sorry it's side ways thats the way it was posted on facebook)


    Check out the difference between the May CT and the September CT. I started ibrance (palbociclib) in May, I also started Janes protocol & fenbendazole in May. Not sure what's working, but something is!

    No photo description available.

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    Very interesting, Nicole. Thanks for posting.

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    excellent post Nicole! We needed some encouragement! Thank you so much! I'm so happy for that woman...do we know what type of MBC she had???

    It will be even better when she doesn't have to take any medications but FZ....let's hope that's what ends up happening...it surewill be the end of that woman's nightmare

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Frisky I just asked her but I am assuming she is ER+ Her2- since she is on I/L.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Frisky here is what the woman on FB said:

    It started off as infiltrating lobular ER+ PR+ and HER- 6yrs ago. Got that sorted but then it metastasised to bone & marrow and they caught it around Xmas, nearly a year ago

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

    When you say she started Jane's protocol, did she post what she was taking? Or was she on COC drugs? Thanks for any additional info you can find out and post.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    here ya go bev... I put an asterisk next to what I also take EDITED the magnesium dose...I wrote it wrong

    9.30am
    Reishi/shittake Mushrm 300 *I take a whole mushroom complex not just these 2
    Aspirin 100mg * I take 81mg
    Folate 400ug
    K2 &D3 45/25 mcg *
    Vit E 1000ug
    Omega fish oil 1200mg * different dose than I take
    Metformin 500mg *
    Mebendazole/doxycycline * about to start


    1pm
    Turmeric curcumin 150mg
    Resveratrol 450mg
    Quercetain 600mg *may be starting soon
    Bromelians 200mg
    Vit A 5000iu
    Calcium 500mg
    Berberine 500mg *
    Dipyridamole 75mg



    5.30pm
    Turmeric curcumin 150mg
    Vit E 335mg
    Omega fish oil 1200mg
    Vit D3 500mg
    Atorvastatin
    Quercetain 600mg
    Metformin 500mg



    9pm
    Mega Magnesium *400 - 600mg Magnesium Citrate
    Berberine 500mg
    Low dose naltrexone 4.5mls *Just got script will be starting
    Ibrance 100mg
    Letrazole 2.5mg



    Fenbendazole 2.5mls 3days a week



    Loratadine 10mg every other day *



    Flucanazole once a month


    ** I will also be adding in Propranolol I only do the berberine once a day and metformin 1once a day, I also do a probiotic, ALA, B12 & B6 I also take a STATIN