An aggressive natural therapy approach–any suggestions?

Can't wait to hear what you are pushing,that is alternative and gives total remission!!! 

Yeah, me too!!  Hmmm….Good old Rob here, love ya, Rob!!!…is a newbie to this forum.  Nothing wrong with that….just say'n.  And unfamiliar to BRAF status just a few posts ago…so, I shared some intel, though there was never a response.  Hmmm….you got some new drugs for melanoma???  Pray…do share!!!  So…Beth.  This is how the world of fancy alternative meds works in melanoma world.  They are either "sold" by charlatans actively seeking to make a buck and dupe desperate folks.  OR….by well meaning folks who are also new to the bizness….and desperate themselves.  Hang tough guys.  Melanoma is not for sissies.  But, it is something you can do….and SURVIVE….if you educate yourselves and seek/demand the care you need.

Come on guys!  If there was an easy route…the old timers like me and Ed would have taken it.  So far, there's not one.  I'd love a crystal ball and a magic wand.  Unless you're Harry Potter, I don't think you are going to have one anytime soon either.  Get yourselves real live melanoma specialists.  Avail yourselves of the closest things to CURES melanoma has ever seen.  Ratties like Ed and myself went out on a limb for ourselves….and YOU!!!!  The world learned from us.  Take it.  We want you to have it.  Effective treatment is out there.  Is it perfect?  NO!!!  Does it work often enough?  NO!!!  But, it is better than it has ever been.  c

I.m not pushing anything and I agree there are no natural alternative cures. However, off label means real prescription drugs used for other diseses. The big pharma companies cannot make any money by doing the proper clinical trials on generic drugs used for other purposes. They have a judicial responsibilty to their shareholders not the health of the public.. 

The University of Toronto did studies with the drug "ivermectin" in mice. It put melanoma and breast cancer into total remission in 45% of the mice. Tumour shrinkage in 100% of the mice. Princess Margaret Cancer Hosiptal in Toronto is starting clinical studies this spring on humans. Ivermectin has been around for 35 years and can be acquired off label. Lose dose 4.5 mg of the prescription drug Naltrexone has had great affects throughout Europe and Canada. It normally comes in 50mg tablets for opioid abuse.LDN works by boosting the levels of a natural opioid in the body called OGF (opioid growth factor). LDN blocks the OGF receptors (also called zeta receptors) temporarily, which triggers the body to make more OGF to counteract the blocking effect. It has been discovered that many cancers respond to the increased levels of OGF, and their growth can be stopped or slowed down.

In 2007 it was discovered that the drug DCA (dichloroacetate sodium) induced the death of human breast, lung and brain cancer cells that were implanted into rats, while being non-toxic to healthy cells. This research was published in Cancer Cell, 11, 37–51, January 2007. DCA has been found to kill cancer cells by a newly discovered mechanism that appears to be common to several types of cancer. DCA works by turning on the natural cell suicide system (called apoptosis) which is suppressed in cancerous cells, thus allowing them to die on their own. DCA does not poison the cells like cytotoxic chemotherapy drugs. DCA also interferes with the cancer cell’s use of glucose, starving the cell of energy. At the same time, it does not starve healthy cells in the body of glucose.

So before one makes sarcastic ignorant comments perhaps they should take off their rose colored glass's and do some real research. I'm not pushing anything !! I just feel sorry for the cancer people that don't have the proper health care to be able to take the cutting edge meds we are fortunate enough to aquire.

Hi Rob578, every once and awhile a new member shows up and right off the bat they are giving out advice, in your case " you should try lose dose Naltrexone(LDN) its off label but good with no real side affects'. You next post that you ' are currently stage 3b and healiing from a ncek discetion with no found primary". I look at your bio and it says that you were initial diagnosised in Oct 2015 and your primary was 1-2 mm but it get more interesting, your next post is talking about finding out if you are Braf positive or not and having latest brain Mri scans and Ct??? The questions are starting to grow, no primary or primary not found, just recovering from surgery neck disection or was this done in 2015 where your bio says original diagnosis stage 3. Most recent head Mri, or have you been having them since 2015??? Most new members have a hard time understanding the language and all the new terms but you use words like "Off label"??? Then there is a post about going alternative treatments from another new member and you are giving advice again. Very interesting, maybe I have been watching too many CSI shows on tv, but this isn't adding up for me!!! I have nothing against folks using new cancer treatments, I am still here because of all of the research that has and is going on, but when someone comes to this forum with an agenda to promote alternative medicine and isn't up front about it then I will call them out. When, I looked up some of the crap that you are pushing like using Naltrexone and Dichloroacetate sodium it took me to the research of an alternative Cancer clinic in Toronto Canada. Kind of makes one wonder who you work for???

Hi Rob, 

You're right.  There are many substances and existing drugs that kill melanoma in the petri dish and in other organisms like mice.  I've been publishing real live data (aka research with NO rose colored glasses!) on all of the above for many, many years.  Here's the latest with links within to prior posts:  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/everything-cures-melanoma-and-yes-were.html  

In those posts….real live research and data included, mind you!!!!….I have covered:  potatoes, tomatoes, egg plant, lichen, coffee, tea, curcumin, dill, parsley, stress, exercise, strawberry juice, blueberries, olive leaves, orange peels, seaweed, cashews, reeds, algae, red wine, Brazilian lima beans, emu oil, shrimp, oysters, mushrooms (of many types), saffron, sea cucumber, limonium, snake venom, star fish goo, cruciferous veggies, walnuts, wheat sprouts, sephora root, lutea leaves, sea bass, and pistachios hulls (not the nut…the hulls!!!).  On the existing medicine front…these articles cover ~ cholesterol drugs, NSAID's, thorazine, doxycycline and ciprofloxin.

On the topic of mebendazole, there was this (which also addresses the use of another drug – imiquimod:  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/04/imiquimod-and-mebendazoledrugs.html  

I fight for ACCESS for patients daily….in my work, on this forum, and on my own through all sorts of folks who contact me daily.  Access is a huge problem across the globe and in the US itself.  I have no illusions.  Additionally, until there really is a CURE for melanoma….I am a firm believer in looking under every rock, leaf, insect or any other creature….as well as within the arsenal of existing medicines.  

However, for anyone to state:  "I can recomend some inexpensive off-label drugs that have had some success at total remission."  ~ is more than concerning!!  It is misleading, untrue, and dangerous.  Perhaps you did not to intend it to be so….but some of us have been in this game….searching EVERYWHERE for a cure…for a very long time.  I would have given anything for some cheap drug with a chance of total remision upon my diagnosis in 2003.  But…there wasn't one then and there isn't one now.  I have hope in the progress that has been made in melanoma care.  I have suffered a great deal personally and lost dear ones to this disease. I ain't got no rose colored glasses.

I wish you my best.  celeste

Geez ..maybe you should read again my post's before going balistic! Again I said there are no known natural cures ! Second what would you recomend Americans without proper health insurance do? There could possible be old generic drugs that put a lot of cancers into remission,however, to do the proper clinical trials cost $80 to $100 million. So no drug company is going to spend that kind of money when they can't get a return. Makes me wonder if you work for one of these drug companies.

Last I believe if you have health insurance do take these cutting edge newer drugs and listen to people on this board. If you don't have health insurance than I would suggest you try and get into a clinical trial free.If you can't do your own research into off label prescription drugs and make your own decesion.

Another person had the rudeness to question my Stage 3b Braf  V600  cancer. So to make it clear I was misdiagnosed in late June 2017. My family doctor said the lump on my neck was a sebacious cyst in June of 2017.. Four month later an ENT did an ultra sound core biospy and the neck node was melanoma. On Dec 15 I had a selective neck dissection and 61 nodes were removed all benign but the one node. It was encapsulated and the melanoma was just traced inside. I had no outer skin primary that could be found. Next week after having just completed a battery of tests I will be going on Tafinlar + Mekinist which scares the crap out of me with the potential side effects.

During the lag before surgery I took 7 triple doses of ivermectin as per study. The ultra sound core biospy pathology report indicated a metasized lymph node with muscle and skelaton particles. The node measured 5.4 cm left mid neck. After surgery the node measured 3.2 cm and and the outer shell had no signs of melanoma. There was a small amount inside and the pathology report had other tissues as the ultra sound core biospy.indicated. I personally contribute this to ivermectin as there can be no other explanation. I also got a compounded prescription from my family doctor of 4 mg Naltrexone 60 doses which I have almost finished. Be happy to show a picture of the prescrition bottle if anyone has doubt.

I can't tell if the Naltrexone worked  just like I will never really know with Tafinlar + Mekinist. As I'm stage 3b and may have microscopic particles of melanoma floating around. My brain MRI and CAT scan last month were clean. I don't recomend anything to anyone !! That's my story and what I did. We all have to make our own choices .

Wow, Rob you have been through a lot, I read your bio on the forum which said you were first diagnosed in 2015 and the depth of your primary tumor was between 1 to 2 mm. This is the reason I had questions about what you have been saying on this post and other posts on the forum, maybe it would be a good idea to update you bio. Also in the first paragraph above you said that you have not recommend any natural cures but you have stated that you have off label drugs that show total remission in patients!!! Also kind of curious how you are getting Taf+ Mek as a 3b patients when it is not yet approved in the states but is with the FDA awaiting approval? https://www.novartis.com/news/media-releases/novartis-combination-therapy-tafinlarr-mekinistr-granted-fda-priority-review-adjuvant-treatment-stage-iii-braf-v600-mutation-positive-melanoma

In regard to how I'm getting Taf + Mek as a 3b patient did you ever think that I may not be an American ?

What's with you people questioning other members like this, there is a whole world outside your country.

Wow, Rob! 61 nodes!!!  Ten or twelve nodes is considered a good harvest for a neck dissection.  Gracious!  You have been through a lot!   Here's a cool link to an international Novartis site:  https://www.novartis.com/news/media-releases/novartis-combination-therapy-tafinlarr-mekinistr-granted-fda-priority-review-adjuvant-treatment-stage-iii-braf-v600-mutation-positive-melanoma

It's a little hard to tell who your posts are responding to.  It is tricky when YOU state things like:  "I can recomend some inexpensive off-label drugs that have had some success at total remission."  

Folks on this board are pretty used to folks from all over the globe and work hard to help them.  I get emails from melanoma peeps from EVERYWHERE.  Most of the peeps here have melanoma or take care of loved ones with melanoma.  We are EXTREME advocates, protective mother bears, vigilantes in melanoma world ~ as it were!!!  We embrace ANYONE in need and will skewer those who lead newbies astray.  That's just how we roll!  If you are straight up, great.  I gave you data that supports the use of mebendazole (in mice at least!!) and you didn't seem to read it.  But, that's okay.  Hang in there.  I wish you my best.  celeste

Oh!!!  And the Edster is Canadian!!  But we still love him!! Celeste

If you read the first couple of sentences of the link and then click on 'Services" button at top of page it takes you to most of the stuff Rob 578 has been talking about like "Low Dose Naltrexone and Dichhloroacetate DCA. http://medicorcancer.com/dca-therapy/

Here is the link to the ivermectin stuff he is taking based on a grad students thesis. https://tspace.library.utoronto.ca/bitstream/1807/24641/8/Sharmeen_Sumaiya_20106_MSc_thesis.pdf

Since Ed Williams is so skepital it should be noted the person that runs this private cancer clinic is a real medical doctor/oncoligist and not homepathic or naturalpathic doctor. I'm NOT in any way associated with this site or office. He has thousands of real late Stage 4 patience that have gone the traditional route and unfortunatley are not responding to PD1 – 2 or traditional uptodate meds. In Canada treatment is the same as the USA the only difference is like the rest of the modern world everyone gets health coverage.Take time to read some of the patience who have extended their life by years or gone into remission. This is a prime example of off label prescription drug therapy and its not expensive.

Unfortunately I believe he is a family doctor who has been censured by the provincial society around his administration of Chemotherapy, according to the OMA site.

Everyone to each his own, but there are so many more approved options now, and mode of treatment is a VERY serious decision with this disease and should include a good discussion with a melanoma specialist before  you decide. 

I would be interested in the link to the clinical trial at PMH that was mentioned…that’s my hospital and I do try to keep my eye on what’s coming up. Thanks

The neck has about 300 lymph nodes and a lot of these are microscopic. I had a top ENT surgeon/oncologist

that did an amazing 4 hour operation. My spinal accessory nerve, jugular,and sdm were all perserved and my 10" scar is not too visible. Nevertheless its a horrible operation with a long healing process with PT.

Here is a link to one of the studies that they use as a ref. for using Dichloroacetate, it was shut down for safety reason at UCLA back in 2010. https://clinicaltrials.gov/ct2/show/NCT01029925?term=dichloroacetate+cancer&rank=1

I read your link but do not understand why statistics state 90% of what works with mice and rats works partially or totally the same as on humans. I personally took over 7 days triple doses of ivermectrin as per study. Only side affect was light sensitivity that went away quickly. 

It worked to a certain extent on shrinking my neck node from 5.4 cm node to 3.2cm in a very short time frame and the final pathology report was almost the opposite of the ultra sound core biospy pathology report. Last I checked I was not a mouse ! My disclaimer here is I'm not advocating anything see a doctor and do what's right for you.

I think the point of Ed's link to the clinicaltrials.gov site was this:  "Terminated (DSMB determined, due to higher than expected risk/safety concerns, study should be closed.)"

So…yeah.  I don't think folks can (or should) be getting that drug in this situation!!!

And Ed….he's Canadian AND a mouse!!!  Crazy, right?????  c

Here is a YouTube Video on Low Dose Naltrexone (LDN) I have been on this for 51 days with 0 side affects.

I beleive in taking what ever it takes to beat cancer provided it does not harm yourself. If I were stage 4 I would take Keytruda, Yervoy, Opdivo, Tafinlar, Mekinist and any combination of the listed. Although these cutting edge drugs will extend your life they are not a cure. At the 5 year mark only approx 15% will stay in remission. So about 85 out of 100 people will pass on , these are unfortunatley the cold hard facts.

There are a few real lucky people on this board that appear to fall into this 15% 5 year category. However for them to condem, ridicule, or mock any alternative potential not being doctors is very sad. They offer nothing for the unfortunate Americans without proper health care for the meds they benefited from over the years. 

Ivermectin

https://www.sciencedirect.com/science/article/pii/S2405864516300021

https://www.ncbi.nlm.nih.gov/pubmed/22495656

Your utube video is the same one you put up below.  It is not proof of anything.  Even our teens can see when folks are selling something.  I have already acknowledged that there are ongoing studies pairing a wide variety of existing meds with both targeted and checkpoint inhibitors.  You will find a great deal of real data related to melanoma in this regard on my blog.  Your pub med article is not related to melanoma patients in the least and is from 2009.  We've moved a long way since then, baby.  And, NONE of this has anything to do with access of care.  Your "remission" data (not a term used in melanoma care…btw!!!!) is most certainly in arears!!!  Yours, celeste

The only problem with off-label is you still need a doctor to prescribe it.  And if there aren't more than "mouse" studies for a doc to look at, it's unlikely that he will prescribe it and insurance will pay for it.  Insurance will still require justification for a diagnosis not included in the drug's approval.  Off-label use sounds good but it isn't always that simple.  I think there are probably other cross-over drugs that, if used in combination, will probably show promise.  It seems like the atmosphere is changing to a little more cooperation with the idea of combo therapies.

My 2 cents. I am stage 3, NED since January 2017. I have aggressively pursued conventional treatment which for me is surgery and surveillance. My sister in law was diagnosed with stage 4 bowel with spread to liver in August 2017. She was a homeopathic practitioner. She elected alternative medicine only. We attended her funeral in January 2018. She had 4 children. Upon diagnosis her doctors suggested she could survive 3 years with conventional medicine. Her husband was a doctor along with her sister in law and they begged her to try conventional treatment. She survived 5 months following diagnosis by only doing alternative medicine.

Please consider conventional treatment. You can augment with alternative. 

Well said, Lauren.  Hang in there, Beth.  Nothing in melanoma is easy.  Not even finding an answer to what seems to be a simple question.  Nevertheless, you have been given lots of good basic advice and seen the vigilence of the amazing people on this forum in action.  Ask more questions as you need.  c

I agree try anything that has a potential and will not cause harm to any vital organs. Even with the latest and greatest treatments today beyond 5 year survival stats are very discouraging.

You or your brother might be interested in watching this video on Low Dose Natrexone (LDN) to compliment his treatment. Its an off-label prescription drug that I have been on for 52 days with 0 side effects.

Hi Rob – Rather than finding the 5-year survival rates discouraging, I find them most encouraging because they are growing all the time and I firmly believe that, as numbers of people treated with immunotherapies grows, so will the rate of PFS (progression free survival). At this stage of the game though, I'd be putting more concentration on the here and now – not the 5-year mark.

Beth – as all others have urged, please give immunotherapy a shot. If all else fails, then of course one would want to seek alternatives but you cannot know that it won't work for you without trying. Every case of mel is unique in its own way but very aggressive mel is not unique at all and there are many on this board alive and well to attest to that!!! I wish you the very best!!

Barb

Dude!  You said that already.  Folks with melanoma can read previous posts!!!  Now, I'm having to fall in the category of being "highly suspicious" that you are in fact the ROB that is associated with and blogger for Medicor!!!:  http://medicorcancer.com/about/  

I've been in the world of melanoma since 2003.  I don't have rose colored glasses.  I do follow ALL the related research…the good, the bad and the ugly.  Since 2011 the world of melanoma treatments and the related statistics have changed dramatically.  I happen to have completed doctoral work in statistics.  You however, have turned your sometimes inane, uneducated, poorly spelled, rambling posts, into moments /other separate commentary, of incredibly well written ad man worthy jargon.  What gives?  Would the parents of the kids you coach in soccer be pleased to know you were trying to scam cancer patients?  Ed is a mouse who can smell a rat at a thousand paces.  So worried about "Americans without insurance" are you?  Funny, every link you have posted quickly goes to a site with a variety of payment options at the bottom. So quick to point out how defensive we "non-doctors" are?  (You might be surprised to learn how many real live doctors there are among us!!!)  There is NO data to support the OLD 2004 data touted in your video…made by yet another ROB and linked to the LDN Research Trust…where low and behold….there is Dr. Khan!!!  https://www.ldnresearchtrust.org/doctors

C'mon man!!  If your various remedies did all that you have said since 2004, you would be curing ALL cancer.  You have pushed this further than you should have.  I suggest you seek suckers elsewhere.  If I am wrong and you are a long suffering melanoma patient..sorry.  You've made your point.  Move forward.

And as for your survival stats ~ wrong again!!!  I have been dealing with melanoma for 15 years.  That would three times as long as your expiration date.  I have had brain and lung mets, yet have been NED for 7 years.  Shot the hell out of YOUR data didn't I???  But, more importantly – I AM NOT ALONE!!!!   You should be ashamed of yourself.  A woman comes here for help and all you want to do is sell her crap and fear.  STOP.  ENOUGH.  We heard you.  You dug your own hole!  celeste

Celeste, you might be on to something with the web guy for that company, his name is Rob and Toronto phone #'s have a 578 grouping!!! Here is a link to the numbers in Toronto https://socialcatfish.com/area-code-information/416/578/

Who the hell do you think you are !! A new member comes on this board who is selling nothing and is accused of being a scammer. Who appointed you the Board Police who appears to be a no it all. 

Get yours facts straight and stats, 5 legitimate doctors ( one being a Professor) are on this video. NO one is selling anything. Really makes me wonder if you work for one of these drug companies.

What do you have to offer anyone of the millions of Americans without proper health care coverage. I guess don't come to this Board or only listen to me. Oh and please share you STATS because I know your full of crap!

Oh by the way my login name is my birth date Feb 8 1957 and my name is Rob thus rob578 idiot

For anyone who does not directly or indirectly work for big pharma like the one called "bubbles". Who it appears most likely is in some capacity. Here are some facts which Im sure she will dismiss.

It costs $80 to $100 million to run proper clinical studies and submit your data say to the FDA. Unless the drug is fast tracked it can take 8 to 10 years on average to get the new drug to market. These drug companies only have a judicial responsibilty to their shareholders. Not to the general health of the population. 

They are NOT going to spend up to $100 million on a generic old drug that was developed decades ago for another human illness and run it through clinical studies. There is no profit and therefore no incentive. Even if that drug had the potential to cure cancer or offer a tremdous remission response. In fact they would be like "bubbles", dismissive of this off-label drug.

A perfect example is the pharmaceutical company "Merck" the makers of "Keytruda" (pembrolizumab). They were also the original makers of "ivermectin" which went generic many years ago. They are doing everything in their power to block any cancer hospitals or universities from doing proper clinical studies. 

So you come to your conclusion and I'm sure "bubbles" will do another character assassination on me along with her pal Ed. Geez I wonder why ????