Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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JFL - Maybe you could try Red Yeast Rice supplements until you get a prescription. The Red Yeast Rice contains a naturally occuring form of lovastatin. Who knows how much lovastatin the pills contain though. Since there is no regulation, I would try a good supplement brand.
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Thanks for all of the replies.
Simone, I have Dr. Mendez. She was great during the 30 minute, $800 consult but went MIA afterward. I know others with Dr. Yang who have had a different (better) experience than me in similar situations. Mendez was a generalist MO in a small community hospital. She may not have much experience with liver mets or breast cancer liver mets and is therefore, overly conservative. None of the 4 COC MOs is particularly an expert in BC mets, unfortunately.
Frisky and Simone, part of the reason I have held off on starting the statin (despite having the pills in my cabinet) is that maybe she does have good reason but is just an awful communicator and a failure when it comes to responsiveness. I get the sense these MOs have a day job and moonlight at the COC. I did actually take the statin for a few days but noticed a rash on my neck and stopped taking it. It is possible the rash was caused by the statin, progressing liver mets, stress, a strong retinol beauty product I started or some combo of those factors. Since then, I have been holding off. If Mendez would just respond with something more than “continue to hold off” and explain why she is saying that, perhaps that would be enough. However, I have posed questions about why and they have all gone unanswered.
I believe the Gemzar is working. My liver enzymes, Alk Phos and CA27-29 are going down. CA15-3 has remained normal and was never elevated. My liver enzymes and Alk Phos went down after starting Gemzar, then randomly flared significantly 2 weeks ago while my CA27-29 continued to decrease. My MO thought it was the Gemzar, I was hoping it was a liver mets die off flare. As of yesterday, my liver enzymes and Alk Phos dropped significantly, not too far from normal. My liver has felt inflamed and swollen at times since starting Gemzar in a way I haven’t felt before.
KarPC, I will look into the red yeast extract.
Nicole, I am sorry to hear the X may not be working. You know your body and the rash you have experienced with mets. It must feel scary and disappointing. I hate this disease
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JFL,
It's Good to hear that your doing well on Gemzar. I haven't had to contact Dr Mendez outside of my appointments. I'm looking into Mark Rosenberg a NP, who has experience with drugs to block the pathways. Quite a few people have recommended him so I may leave COC. I just feel a little overwhelmed by all the pills I need to take to block all the pathways.
Frisky,
Does your insurance cover the scripts since you get them through your PP?
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yes, Simone,so far the PP scripts havebeen covered by my insurance.
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Thank you JFL
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Dear Nicole, I am sorry you feel so bad... Gut feeling is important, you have to listen to it, but I hope it is just a false alarm, and X is indeed working. Pains are also what people experience when tumors die. I believe that is true and your next scans will only confirm it... can you have an ultrasound to check what is the situation? It is cheap, quick, and with skilled radiologist produces very clear picture of what is happening? Saulius
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Thank you Saulius...I will message my MO this week...I am giving a little more time to see if my skin clears up...I will definitely ask about an ultrasound I didn't even think of that so thank you for the suggestion.
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Yes, dear Nicole, here at NCI they do "interim" ultrasounds, i.e. MRIs/CTs every 3 months, and ultrasounds in between, means 1.5 month after last MRI/CT, so basically 4 MRI/CT and 4 ultrasounds annually. I find it a good practice...
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Simone, I'm here. Thanks for asking. Just nothing to report. I too stopped all supplements. The stress of trying to figure out the protocols, are anti-accidents (sp)
good or bad kept crashing in on me. And is Zeloda even working? I hope so, it's an easy treatment. Since I have no cancer in vital organs (Praise God) I need time to get my head together.
I said nothing is happening but that is only with the cancer. My other life, became interesting. Car won't start (repairing would be prohibitive) Christmas tree fell over, a friend came over to help me stand it up and stepped on the bottom of it crashing the legs. It's history now. And.....my TV stopped working, not that I watch it that much. So I'm just trying to chill and put cancer treatments "on hold" 'till I get my head together.
Glad to hear that all of you are doing relatively well.
Katiesmith….my second week is bad also. Luckily I rebound on week off. Praying for your counts to go up.
Edit Couldn't sign off without a shout out to my buddy Frisky!
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Hi Snooky I was thinking about you just this morning, but noticed you had been quiet on other boards as well, now I understand why....sorry about things falling apart...my big ass tv stopped working as well, but I've been unable to even conceive going out to buy another one...not that important...instead I'm using an iMac as a screen for Netflix and Prime...that was just sitting there un used...it will have to do for a while...
Yes, it's hard to continue with the various protocols after the hiatus I took during the holidays....my faith is flailing and my skepticism at an all time high.
But I started yesterday with the infamous tea that Saulius posted weeks's ago...just finished a cup. It's tough to swallow but I did it! Will it make any difference? Who knows?
Big hug to you all and Happy New Year! I miss our old discussions about alternatives, they kept hope alive....
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Snooky,
Sorry to hear about things falling apart. It seems like when it rains it pours.
All, I learned of another benefit today with taking metformin. I was diagnosed with ONJ today. The oral surgeon said that keeping the blood surge r low is helpful to reduce the risk of that spreading. He was happy to see I was taking metformin. They also use antibiotics to treat that. So I guess no pill vaca for me.
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update....started taking the FZ again today, but only the 222mg dose...4 days on 3 days off...I have nothing to loose...it might not cure me but it might slow down the disease...
The FZ is still priced very high on amazon....apparently people are still buying it.
Having to rely solely on my MO and chemotherapy makes me want to jump off a bridge...I have to do it because it keeps hope alive..
I’m of course taking the metformin and will start adding the quercetain drink soon as a substitute to the statin.
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Reminder Guide to McLelland protocol.
THE GLUCOSE PATHWAYS
Glucose Transporter 1 GLUT1
- Statins – atorvastatin (Lipitor) 20mg to 80mg QHS
- Quercetin: 500 mg BID
Insulin
- Low Glycemic Index Diet or Ketogenic diet
- Metformin 500 mg BID or TID
- Berberine, from Chinese medicine; 500mg TID(max 1.5 g /day)
- Chromium picolinate (CrPic) high 1000 mcg( 1mg) QD or moderate 600 mcg, QD
- Pentpose Phosphate Pathway (P P Pathway)
- DHEA (supplement) – Dehydroepiandrosterone 100 mg oral daily. Max 400mg QD
Oxidative Phosphorylation (OXPHOS)
- Berberine 500mg TID(max 1.5 g /day)
- Doxycycline 100mg PO QD or BID
- Metformin 500 mg BID or TID
- Niclosamide 2 g on Day 1 then 1 g once daily for 6 days. Treatment may be repeated in seven to fourteen days if needed. ALT dosing: 2000 mg daily for 1–7 days. Safe at 500mg TID; Poor tolerance beyond 1000mg TID
Aerobic Glycolysis
- High Dose IV Vitamin C Salt. Doses vary. 50-100 g IV weekly
- Dichloroacetate (DCA ) Recommended DCA daily dose is 20 mg/kg daily per DCA Guide. 5 days on, 2 days off.
- 2-Deoxyglucose (2-DG ) safe; 63 mg/kg was selected as the clinically tolerable dose from a phase I trial.
- 3-Bromopyruvate (3BP ) N/A dosing
THE GLUTAMINE/AMINO ACID PATHWAYS
Insulin like growth factor-1 (IGF-1)
- Metformin 500 mg BID or TID
- Tamoxifen 20mg PO QD
Glutamine oxidative phosphorylation
- Berberine 500mg TID(max 1.5 g /day)
- Doxycycline 100 mg PO QD or BID
- Metformin 500 mg BID or TID
- Niclosamide 2 g on Day 1 then 1 g once daily for 6 days. Treatment may be repeated in seven to fourteen days if needed. ALT dosing: 2000 mg daily for 1–7 days. Safe at 500mg TID; Poor tolerance beyond 1000mg TID
mTOR (mammalian target of rapamycin or mechanistic target of rapamycin)
- Metformin 500 mg BID or TID
- Berberine 500mg TID(max 1.5 g /day)
Macropinocytosis
- Chloroquine Hydroxychloroquine 200 mg QD or BID
- Loratadine Claritin 10 mg QD is usual dose; Loratadine 40 mg once daily up to 14 days was effective and safe in clinical trials.
Nucleoside Salvage
- Dipyridamole (Persantine) 50-100 mg TID; The recommended dose is 75-100 mg four times daily as an adjunct to the usual warfarin therapy. In another trial, aspirin (30-325 mg daily) with dipyridamole 200 mg twice daily for 6 months are safe. Dipyridamole 75 mg TID during the FU administration.
Glutaminolysis
- EGCG 200 mg TID
- Ursolic Acid 150 mg QD, BID or TID
- Curcumin, BCM95
- Resveratrol 20-5000 mg daily; Most clinical trials use 500mg or 1000mg QD
- Asparaginase L-asparaginase; This is a chemo by IV
- Bis-2-(5-phenylacetamido-1,2,4-thiadiazol-2-yl)ethyl sulfide (Doctor?) – aka BPTES
THE FAT PATHWAYS
Acetate + SREBP-1
- Berberine 500mg TID(max 1.5 g /day)
ATP Citrate Lyase (ACLY)
Hydroxycitrate 500-1000 mg TID
Fatty Acid Synthesis (FAS)
- Metformin + Aspirin
Fatty Acid Oxidation (FAO)
- Doxycycline 100 mg PO QD or BID
- Mildronate
Mevalonate + SREBP-2
- Statins + Dipyridamole
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Simone, I'm so sorry to read about the ONJ, I hope your doctor can help you to successfully resolve it...or manage it....
How does he know it’s ONJ and not an infection or absessed tooth?
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Simone, ONJ is not something we ever want to hear. Sorry you are dealing with that. I have been dealing with what the oral surgeon described as "Stage 0" ONJ for about a year now in a few places. It initially caused an abscess in my gum but after a few rounds of antibiotics taken for an unrelated sinus infection before I was ultimately diagnosed, the abscess healed. The "bone sequestration" issue has remained in my jaw, but under the gums with nothing breaking through the skin. It hasn't gotten worse but hasn't improved either. Good to know metformin is a good thing for ONJ. In addition to antibiotics, you will probably be prescribed chlorhexidine mouthwash which helps.
Frisky, when I was getting my whole ONJ issue diagnosed, it was truly the only time in my life I was ever hoping I needed a root canal due to a tooth abscess (versus ONJ). I tried to tell the oral surgeon's assistant that when I was having my oral CT and she was trying to make conversation and comfort me but she wasn't really getting the joke/truth of the situation. She just kept telling me "good luck" and "I hope you don't need a root canal". I know what you mean about missing the discussions and hope we all felt in pursuing some of these alternative treatments in the beginning. I think we all hoped for game-changer results which we just are not seeing. That is not to say that there is no benefit but so far, I am not seeing any game-changing results on these threads.
I just finished my full second month on the COC protocol and am switching back from doxycycline to mebendazole.
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Frisky,
There is a spot on my lower jaw that doesn't have any skin on it. It's weird looking, my jaw bone is showing through. The oral surgeon basically scraped the bone which didn't hurt. He said it would have hurt if the bone wasn't dead. I have stage 1. It doesn't hurt which is a good thing.
JFL,
Did they take you off xgeva? I asked the oral surgeon if I should stop getting my shots. He said it doesn't matter. Once a person starts using those types of drugs it stays in your system for years.
I have to have another root canal or tooth extracted. The dentist and oral surgeon are discussing what would be the least risky. The dentist wants to extract the tooth because root canal release all kinds of toxins in the body. The oral surgeon recommends a root canal since ONJ is a risk. I'm not really sure what to do.
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Frisky,
I've read that er+ cancers should not take DHEA or resverastrol.
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Simone, in your position, I would opt for the procedure that would preclude the breaking of the jaw if that is a concern....otherwise remove it and get it over with...
It's not an easy decision...Hopefully your dentist is like mine, someone that gets all excited by situations that other dentists refuse to touch...too bad he is getting old now...but he recently saved a bridge, my dental oncologist insisted had to be cut down. He noticed a cavity and just filled it...so I'm still using the bridge. That was two years ago....
sending you my good wishes for a successful outcome!
Thank you for the resveratrol warning...
PS I was quietly taken off xgeva almost a year ago...never asked why, but I suspect the unreported findings are terrible about those medications....
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Regarding game changing results. I am still getting good TM numbers. But I am on the I\L combo. We all know that combo is potent for some women and it can work for years. So I am not sure if the off label drugs\supplements are doing anything. I have my pet next week so hopefully I'm still NED.
There are some positive progress posts out there.
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This is an interesting read regarding taking off labels/suppl
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Simone, sorry to hear about the ONJ! Hope you find a good solution to the tooth problem. I won’t hijack this thread and go on about Xgeva, I just wanted to throw you a little more support x
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Thanks all for the kind words about ONJ.
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I dropped Zometa (like Xgeva) a month ago...I told my MO NOPE....after reading the stories of everyones bones just crumbling away after a 2 years on it...not interested. Plus there is no real benefit unless you have EXTENSIVE bone mets and even then...after talking to the people whose bones were crumbling away I still don't know if it would be worth it. My MO said ok.
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Nicole, if you’re not on any estrogen suppression therapies, Zometa is only destructive in my opinion. I read somewhere that the effects last for years, regardless. As usual, we are being overly medicated because they don’t know what they're doing and don’t give a sht!
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Frisky, where do you see your dental oncologist? Are they part of your team at MSK?
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Hi All,
I have been on the COC protocol for about 5 months, I am midway through my second round of Mebendazole. I wanted to try it because a: there seems to be little downside and b: I know that the standard of care with this disease is statistically unlikely to keep me around as long as I would like to be here. In addition to the COC, I am also taking Afinitor and Aromasin. My MO wasn't happy with my results on Ibrance/Faslodex, in hindsight I think we should have given it more time, but it's spilled milk now.
I want to share a couple of things as I work in the health and wellness space and know just enough to be dangerous regarding supplements.
1. Bio-availability is everything. Quercitin is not a highly bioavailable supplement. I am taking Isoquercitin which is a more bioavailable form of quercitin.
2. Regarding Red Yeast Rice, yes this works but the dosage needs to be quite high as the FDA has limited the amount per capsule so people don't use it as a drug. I don't think you will get the benefit you are looking for if you don't research dosing.
3. IV Vitamin C: It is critical that you get a dose that acts as a PRO-OXIDANT not an ANTI-OXIDANT. This is quite high needs to be done 2-3 times per week to achieve a benefit. Good reading on this: https://riordanclinic.org/research-study/vitamin-c-research-ivc-protocol/
Best wishes to all for a good year ahead! Let's all be here for 2021!
Stacey
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Sbaaronson,
Question: I just looked up Isoquercitin, and it appears that sometimes it contains? derives from? not exactly sure -- St. John's Wort. It doesn't say the same thing about quercetin. Would you know if this is so? If so, I don't think it can be taken with Ibrance. I'm pretty sure that in the Ibrance literature, it says not to take St. Johns Wort with that drug.
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Hi Olma, yes, I saw the dental oncologist at MSK.
Hi sbaaronson thank you for the info...0 -
Sbaaronson: Can you post some literature showing which Iso is better because there is Isoquercetin and there is Isoquercitrin....
Also here is some literature that Quercetin makes estrogen tumors grow in more in mice...any thoughts????
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BevJen,
This is what I take, https://naturalfactors.com/en-us/product/bioactive-quercetin-emiq-en-us/
Best,
Stacey
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