Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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Yes, I did have Dr. Mendez. She was nice in my initial consult but basically ghosted me after that. No response from her when I progressed. Zero, zip, nada. Not even an acknowledgment that I progressed and should stay the course. She told me in my first consult that she typically ups the dose of the drugs in the face of progression. Also, she told me to hold off on starting the statin in my first consult and then never let me start it. I would email weekly for an update after I uploaded my new bloodwork per her request. I asked various questions along the way about whether the fact that I progressed changes the analysis and whether my meds needed to be adjusted due to progression. No response to any those questions. The only response I ever received was a message two times early on relayed to me by the nurses that said the exact same thing each time "continue to hold off and upload bloodwork". She did not elaborate or ever answer any of my questions. The last straw was that she never responded to my last request about 5 weeks ago. I get the sense the MOs moonlight for $$ and don't really care much beyond the 30 minute consult. Nearing 3 months and still haven't started the statin. I can't deal with that. What am I paying for? Paid $800 for first 30 minute consult with Mendez and just paid $285 or so for my 2nd consult which I have not yet had. I meet with Dr. Zhang next week. My appointment with Dr. Zhang was scheduled for last week but was canceled by the COC the day before, with the nurse telling me he doesn't work on Fridays. Not sure why they suggested and booked me for Friday if he does not work on that day. Since then, I have had a hard time getting an appointment as he only has 11:30pm available all this week and most days. That is not a typo. 11:30pm. I had to tell them that I could push it as late as 9:30pm but that 11:30 was just too late. I am on Eastern time and he is on Pacific. I think I am having a bad string of luck with the administration of this. So long as the meds are helping to delay progression (which is a big unknown at this point), I will deal with the poor administration for now. The drugs are very inexpensive, even though the doctor consults are costly for what I am getting out of them, in my opinion.
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JFL.... they are giving children with brain cancer 1500mg a day...so 200mg for an adult is not even high. From what the researcher/Neuro oncologist told me he said that was his only reluctancy about any of the drugs off labels I am using for the Jane protocol to actually work...that doses are probably all too low...but if they were to be high enough to actually block the pathway for sure...we wouldn't be able to tolerate those doses. The bottom line is some things work for some...and don't for others. I am going to try the 200mg hopefully I can tolerate it
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Nicole,
I just had my 3 month appointment with COC. The MO did say they increase the dosage if someone progresses. So you should be okay with the higher dose. COC is supposed to have some initial results next month posted on how well the protocol is working. She told me it has been good results so far. I'll sure their results once they're posted.0 -
Nicole - Stockpiling the Mebedazole was a smart idea.
Simone - Dr. Rosenberg was a great help. He agrees with many of the drugs Jane recommends but not all. I asked him to tell me what he thought about the majority of drugs and supplements that Janes suggests to block all pathways. He gave me his answers based on research. He suggested dosages based on studies. Nicole, Dr. Rosenberg also feels that doses we can tolerate are too low to block many pathways. He is a big researcher and keeps up with current studies. Dr. Rosenberg does not necessary agree with the metro map and some of the drugs recommended. He does not agree with taking statins and doxy. He is not going to complete the metro map for us, but he will share his knowledge and prescribe what's needed. He will share what he recommends in supplements. After the 1hour skype call with him (about $550), I felt much more knowledgeable about many of the drugs Jane recommends along with other supplements he suggested. I would recommend scheduling a meeting with him.
He also has his own ideas of what works and what doesn't work. He will explain some ideas worth trying. He is a big supporter of TM (tetrathiomolybdate) which is a copper chelator and works by removing copper from the body. Copper has an important role in the angiogenesis process and copper chelation may be used as an anti-cancer treatment. There are some interesting studies on TM. If I had lots of money, I would give it a try. Treatment costs about $750 a month.
JFL - thanks for sharing your experience. I am so sorry you have been ignored. It makes me furious that we have to do so much work to get even basic care. It is nice to know that COC will let you change oncologists though. I hope Dr. Zhang will be much better.
I hope to tweak my metro map soon. I will share it when I do.
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KarPC...the other good thing about stockpiling the Mebedazole is that you can use fenben while waiting to build the pile up. Also...i had my copper levels checked at my ND they were great. So I don't know how well that med would work for me. I will say that I have the DOXY but am leary of it...sooooo many gut issues people have...and I definitely will not do doxy for a month straight (when and IF I use it)...I will probably pulse that like 2 weeks on...2 off. I dropped the Statin and dropped the Propranolol. I MAY go back to the statin..my issue is possible Myopathy....I was having strange muscle pains around the shin area. I just started the LDN 2 nights ago..started at only 1.5mg...working up to 4.5mg....I am still only at 1.5mg night 2. but I had some strange throbbing pain in my head twice the first night, then a mild headache the next day (I am NOT a headache person I very rarely get headaches)...and then this morning like a small kind of dull headache but went away without having to take anything....so I am not sure if its from that. My oncologist actually said yes to the LDN that my ND prescribed because I showed her an article about the itchy skin condition I have (that the Dermatologist in NY said is from my cancer) and in the article it says the name of the condition and it lists LDN as a possible help for it.....
I dropped the Propranolol because I got the script for the DPM (diprydamole) and I really really want to add that in...buy my MO is not on board with that...so I have to ease her in..lol that interferes with Propranolol so since the DPM blocks more than the Prop...I want that.
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Chiming in to say I would like to see the Metro Map for this as well. We can all take away something from this. Thank you ladies.
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I found out that Mebedazole even though it processed in the liver...it wouldn't cause Bilirubin to raise it would cause AST and ALT... Just FYI...
I think the Berberine is raising my bilirubin so I am going to pulse it to 1 week on 1 week off now.
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Some of you may have heard of Chris Woolams -- he's very popular with the Brits, apparently. I learned of him while looking at the forum about TNBC folks in the UK.
You can sign up for his newsletters for free. They are quite interesting. Today's newsletters talked about natural compounds that can fight cancer stem cells, including things like tomatoes, etc. Here's the link to that article:
https://www.canceractive.com/article/top-ten%20nat...
Note, however, if you read all the way through it that you require a huge amount of each of these things in order to have an effect, according to the studies he discusses.
Just passing along for your information.
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Thanks Bev
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Bev, thanks for posting that link.
I had my COC appointment this evening. Just finished up. Seemed to go well. I will be starting statin immediately. The new COC MO didn't see any reason not to start it. Feeling like I am back on track! But honestly, with all the bad press statins have received I am a bit nervous about the muscle issues that statins may cause. However, I will get over that!
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JFL...good luck...yea I think the Statin was causing my weird muscle pains because a day or 2 after stopping it went away. I hope you do just fine on it. Which one are you on, maybe that has something to do with mine?
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Nicole, I am starting atorvastatin, half dose for now. Which one were you taking? Did the muscle pains cause any lifestyle changes (like inability to exercise)
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I was taking lovastatin...they didn't cause me to stop exercising..but they scared me enough to stop the meds because Myopathy is irreversible.....it's permanent.
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Nichole, What tests did they run to diagnose Myopathy? I'm getting worried about the muscles in my legs also. Although it could be a felt-over from Taxol I.V. Hang in there on the Zeloda, Goldie has said it gets easier after first few months.
HUGS
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Snooky I never mentioned I was tested for Myopathy...I said that i was fearful that was beginning because from everything I have read, what i was experiencing was very similar to it being the beginning of that. All I know is...I stopped the statin ...and it stopped.
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Scary about myopathy being permanent. Glad yours stopped. I am feeling more freaked out about this statin - due to myopathy risk and impact on liverbut also feel I owe it to myself to try it because I don’t have a lot of treatment options left.
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Hi. After trying this on my own and guessing on doses, I just started with care oncology yesterday. I have been on metforine low dose and simvostatin but they will be adding the other two. What side affects have others experienced with the doxy and the parasite meds?? Thanks. Over feeling like the rebel but still feel alone in this.
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Hi SD1, I haven't had any side effects with doxy and Medben. I did have an issue with Atorvastatin and am at 40mg instead of 80mg. I am debating on whether to stop the statin altogether.
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Thank you Simone80, hope the 40 works well for you since it is an important part of it. I take the sinvostatin at 40.
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Nicole,
I know you don't take a statin. What are you taking in it's place?
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Simone...I am not taking anything in it's place...because the LD Naltrexone is blocking a lot... I had to just quit everything including my oral chemo due to my ALT and AST being high REALLY high... my doctor thinking its either the Mebedazole or the MSM (if it's not progression, of course) I scan Tuesday and Wednesday.
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Sorry to hear you are having issues. Let's hope it is one of the drugs and not progression. Good luck on your scans and please let us know what they find out.
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Thank you Simone...I will keep you posted...
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Nicole, Have you come across other drugs to take instead of the statins while doing your reseach? My new NP wants me to stop taking atorvastatin. I read quercetin is not good either.
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Simone...I know some people do that Red Rice yeast.???>>> or something...but I have read a lot of research a lot, that says the dosing would never be enough to be like a prescription statin. I did hear of Cholestpure...but again..you would probably need a high amount to equal the prescription statin....
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Thanks Nicole.
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SD1, I haven't noticed any significant side effects from the COC protocol. It is possible it is contributing to some of the overall side effects from Gemzar but nothing I can clearly identify. I had mild, slightly lightheaded headaches the first week or two when I started metformin but nothing since then and no issues when the protocol had me double the metformin dose
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I haven't read the McLelland book but can agree with some of the recommended drugs/supplements listed on this thread. Intermittently and separately I've tried metformin, aspirin, an antihistamine (every spring and more), NSAIDs, curcumin. Did they mention exercise? I would say, combined with intermittent fasting and caloric restriction, you have a very powerful metabolic regulator of our system.
A recent article from the NYT
https://www.nytimes.com/2020/02/17/well/eat/the-be...
and an article from the New England Journal of Medicine
https://www.nejm.org/doi/full/10.1056/NEJMra190513...
about the benefits of intermittent fasting.
(I subscribed to the latter for 3 free articles a month.)
The articles are not specifically about cancer but it does get a mention.
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The good news is that my of my 2 bone mets...the one in the hip isn't even visible...and the one in the sacrum is has shrunk on Xeloda.
now the bad....
My liver supposedly had 3 tumors but 2 of them had been cryoblated in end of Oct 2019. They were cryoblated under 1 dome (together).... well today the PET and MRI showed that it looks like I have 2 or possible 3 tumors...here goes....Please try to follow me here its gonna get confusing..
A. The (2 they cryoblated) looks to be gone the PET shows minimal if any uptake but the MRI shows it bigger, but they admitted they are not familiar at my facility with Cryoblated tumors and are not sure if this is actually dead and smaller so we have to wait for the IR from Hopkins that did it to look at it...my husband believes its a non issue because they said the same things about it when I had a CT scan 2 weeks after the cryo and it turned out when the IR at hopkins reviewed it he said it's all good and dead end. of. story. So hopefully its still like that.
B. That left 1 tumor...the one they couldn't get with cryo bc it was too close to the colon wall...that looks bigger..but we don't know if that is because it grew in the 2 months I was off all meds before I started the Xeloda which would actually mean it is stable.
C. There is a new tumor near the one they couldn't cryoblate...but again..we do not know if that was there during that 2 month period I wasn't on any meds before starting the Xeloda..and there is a good chance it was because when I consulted for the Cryo the PET I had (from a different facility) said I had 4 tumors in liver....that the 4th one was new from Ibrance failing...yet the IR said NO..there are only 3... HRMMMM now they are seeing a 4th??? ughh so we are unsure again...if this was there or is actually new ....
So we sent the MRI to the IR to speak to my MO directly and tell us what he thinks about the cryoblated area.
In the meantime we are going to do Xeloda for 6 more weeks and scan on week 7.
If I am stable we stick with it. If I have progression we are going to move on to either...:
Paxitaxil> spelling....
or
Doxil (which I asked about bc I heard its easier on the body than the taxmen) My MO is open to both but would prefer starting with the Taxane..because she wants to hit this hard to set it back then is open to Doxil.
We are also looking into a immunotherapy trial.... but right now it's looking like I will have to choose between the 2 chemos and I want your opinions... and before you ask yes I will find out about more cryo but the location is right by the tumor that is by the colon wall which they couldn't cryo.....j
PS - liver numbers all good resuming LDN!!!
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Hi Nicole, that does sound confusing. It does seem that xeloda is doing something positive for you. Sounds like the next scan will really show if it's working.
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