Hi Rene,
I have read your book in just a few hours and I am delighted you seem to have beaten dreadful odds. May you live many more decades. You are a true inspiration. So, for the rest of us still in the struggle in 2018, where can we get a hold of Coleys toxin in 2018?
I am writing to you from Canada. Knowing that BMVax is out of business now and that, for my particular case, I am a melanoma stage 3b, at best stage 2b with ridiculous odds of recurrence after 20 months since diagnosis living in Quebec, Canada where standard of care is still in the dark ages (latest adjuvant trials confirmed at ESCO in Spain last September 2017 confirms that the right way to go is Opdivo for immune therapy of the Braf inhibitors if you have that mutation - which 8 don’t seem to have), how do I treat myself with the Coleys toxin? Where do I find it besides Chipsa hospital in Tijuana (where I went last January and came back two days later after seeing how they are ripping people off) or maybe Oasis of Hope in Cancun (where I suspect the same thing is goins on - without mentioning your own experience there!!!) Is there a way to get a reliable toxin source nowadays?
I do not have access to Opdivo as adjuvant in Quebec today. It will likely be years before it is approved as adjuvant for my case where I live. So, Coleys or I sell everything I own to try and buy it out of pocket not knowing if it will ever work? Cause we know the response rates. I am a firm believer about priming the immune system as you reported in your book - before going immune therapy. How to go about it today though??? I am fighting to just stay in the fight! Not even knowing if anything can work! Just wanting to stay in the arena! So any up-to-date information coming from you would be welcomed Rene. Off-label does not exist here in Canada. Public health systems are the opposite of your private one in the US. Same goes for the UK.
Where can I get a reliable coleys toxin today in 2018 for my personal use? I will do whatever necessary to inject it IV in myself; that’s a given.
Your help is invaluable. Thank you fot having shown the way so early in this new path of cancer CURE! I also have to point out that I am NOT eligible for clinical trials at the moment nor will be in the future because of a low genetic platelet condition. What else is left besides Coleys and some vaccine priming solution I should get somewhere?
Hi Ellios,
I’m new to this forum and just saw your question. Do you know about Issels Immunotherapy clinic in Santa Barbara, CA? I have spoken with them and they said they do all but the vaccine there. They told me that if you need a vaccine you can go to Tijuana for in-patient for about 5 days and then ride the train back up the coast to Santa Barbara. The Issels Clinic in Santa Barbara does give Coley’s but I don’t know if they do it IV or subcutaneous. They told me the treatment without a vaccine will cost $8,500/ week and will take a minimum of 3 weeks. Also, it is out-patient so you have to pay for a place to stay as well. Over the phone they said that there are some places that give a discount for Issels patients. They said insurance covers some of it but they ask for payment up front and the patient has to get his insurance to reimburse him.
Santa Barbara is a lovely place. I might take my daughter there after we reduce her tumor burden.
One other place you might check is Cancer Treatment Centers of America. They do some alternative treatments such as hyperthermia.
I dont know where a person can get Coley’s toxins to self administer. I am sure it would be MUCH cheaper and a lot more convenient! If anyone knows, please post it here..
Best of luck to you Ellios!
Hi Jeanne. I hope you will be able to reduce your daughter's tumor burden soon. As for your suggestion, thanks. I know pretty much all about the possibilities in CA and in the US. I am just tired of trying to find something when there is so little help here in Canada (Quebec). Thanks anyways.
I'm sorry to hear that PD1 is not accessible in Quebec. Do not give up hope for approvals, as it may move fast with the growing body of evidence of PD1's efficacy.
Do you currently have any tumor? Or you're currently NED, trying to decrease the chances of recurrence?
Coley’s
- There may be other sources of Coleys, but I personally don’t know of any reliable source of Coley’s Toxins other than MBVax’s, which they no longer produce. I do not know how reliable the source of Coley’s Toxins provided by the Mexican clinics are.
- Don MacAdam, the CEO of MBVax, recently wrote a book to document all the information on Coley’s Toxins – “The Reinvention of Coley's Toxins", available on Amazon. Also, if you search for his name on this website, you’ll find the forum thread he posted on. If you reply to his post, he should be able to receive it.
Low platelet
- I am not familiar with your genetic low platelet condition. But, I just want to note that the omega 3 regimen, ketogenic diet and some immunotherapies make the platelets less sticky. It will be important to check there is no contraindication with your genetic condition.
Just to be clear: Pembrolizumab is available for stage 4 melanoma in Quebec. It is NOT available for ADJUVANT stage 3 as recently approved by the FDA in the US. As I wrote, it will be years before this is approved in the adjuvant setting in Quebec, if ever. In the meantime, people who could be saved, maybe up to 30%, will die in my area. Maybe me. As you so rightfully pointed put in through your journey, and has clinicians have tested in the recent years with reports last September 2017 in Spain at ESMO, YOU HAVE A BETTER CHANCE TO GET RID OF CANCER WHILE IT IS MICROSCOPIC, hence at NED stage. That’s apparently, according to my last Feb 2018 scans, where I am. But I am left without options but to sell everything I own to buy myself a course of this immunotherapy to MAYBE have a chance to respond to it and MAYBE be a long time responder (about 30% of responding. 10-15% of being a long time responder?...)
So while immunotherapy has a lor of potential, it is by no means a silver bullet. But Coley’s, taegeting the innate immune system by way of NK cells and the like, might be another more viable solution, both economically compared to Opdivo or Pembrolizumab or Yervoy and in terms of efficacy. You have clearly shown how Dr Coley was able to cure a food portion of his patients.
But Coley’s toxin is not available anymore for any reputable source! Where do the mexican clinics get their supply from? How does one know if it’s for real or not? We are left in the dark again today. And when you deal with your own life, you want to avoid making mistakes, to say the least.
I will try reaching Mr McAdam as you suggested through this forum. It’s a great thing he is documenting his experience. But for you, who benefited from this therapy, and everyone else who could still benefit, sadly in 2018, we are still left to ourselves with no secure supply of this therapy. Unless, someone is able to prove me otherwise, which i would be forever grateful, that is it.
In short, as a still propable NED stage 2b melanoma patient at this time of writing, I would need to undergo a Coley’s toxin regimen for some weeks to prime my immune system and swing the balance in my favor to decrease the odds of récurrence. That is all I can do but I don’t have the means to do it, it seems. I will keep looking and asking as I’ve done in the past two years. If I find a reliable source, I will without a doubt come back here and tell everyone.
Sincerely,
Ellios