Dr. Bursynski....

Nicole,

I've read a fair amount about this guy, too. He has some interesting ideas (there are a few other radical people out there who also have some nonconventional ideas.) I guess I'm fairly skeptical about him and his stuff. I mean, there are long term survivors on BCO who have used conventional treatment techniques, too -- so I'm happy for your friend, but I am not so sure if it was Burzinski, or if it was simply the biology of her cancer?

I think he's a charlatan.

He's had decades to run a proper RCT and prove his methods but has always screwed them up.

There are other met tnbc people who've gotten to ned. I think some in the Impassion 130 trial (tecentriq + abraxane) are ned & I've read of others who used chemo or chemo & immunotherapy and maintained ned. There are some long outliers. This is a published case study of someone 15 years out https://journals.lww.com/md-journal/Fulltext/2019/...

so yeah...color me sceptical

Seems like this is not someone you are close with, just someone you know from high-school? Who doesn't have any particular reason to present the unvarnished truth to you or anyone else?

I may be more cynical than you, and I'm not saying she's exactly lying, but I think she is probably embellishing the story a little to justify taking donations to pursue Burzynski's "treatment." For starters, I'm a little skeptical of the claim that doctors told her she had four months to live with bone-only mets (even considering the triple-negative status). Second, it seems implausible that she did the Burzynski protocol INSTEAD of conventional treatment, got promising results and THEN decided to give conventional treatment a go.

More likely, she did some type of chemo WITH the Burzynski treatment, got a modest result similar to what she would have gotten with chemo only, then moved to immunotherapy and was fortunate to get an excellent response and reach NED. Maybe she hopes that having done the Burzynski protocol will protect her from relapsing and gives her something to hold on despite the grim mTNBC statistics. We all look for that one thing we can do above and beyond that will stop us from sharing the fate of the many - whether it's Burzynski, or keto, or giving up meat, or taking twenty kinds of supplements. I sincerely hope that she stays NED for the rest of her natural life and is indeed "cured." I just don't think Burzynski had a lot to do with those results.

I have read dozens of heartbreaking stories of people who, faced with no other options, made unbelievable financial sacrifices to try his treatments only to die just the same... Your friend's story is unusual because she still had options. Burzynski generally preys on patients at the point where conventional medicine has nothing left to offer, with the knowledge that he doesn't either. One of his specialties are children with aggressive, untreatable brain tumors, because parents would do anything to give their child a chance at survival.

I don't fault the patients that go to his clinic - desperation can lead people to desperate actions, and even false hope can seem preferable to no hope at all. I do fault him for taking financial advantage of people in the darkest moments of their lives.

Dear Nicole, thanks a lot for starting this thread. A definitive NO for Mr. Burzynski. He is a mega-quack:/ Abraxane+Tecentriq (although you heard she got this combo later but this fact must first be triple-checked) most probably got your friend's friend to NED, a super combination to inhibit PD-L1. It is not fair when people get super-treatments and then get something "on the side" and then say these "celery juice sort of things" cured them. When my wife got stage IV diagnosis de novo, I went to search for people who have same story and are okay now, and encountered several crazy "gossip" stories. One of them was daughter of a friend of my mom, who supposedly had "metastatic" breast cancer (that is how they called it) and now was cancer free, and walking freely and without any supportive treatment, and when I went "deeper" to clarify things, I got to know she was stage II or III with "metastases" to lymph-nodes... After this story I understood that most people do not have any idea about this disease and they talk whatever they want or whatever their limited understanding lets them:/ Your friend's friend's story is much more credible though but I am sure it is Abraxane+Tecentriq... Saulius

Dear Nicole, I did not miss the scan-fact but I therefore said it must be triple-checked to be sure what happened when and after what. We must also remember that two other members of this "experimen" died, which is terrible:/ Saulius

Nicole, based on your description of your relationship with this person it doesn't seem like she would have any reason to be anything less than truthful to you. But I still don't think the story quite adds up as told. I'm not sure why (misunderstanding, mixed timelines, imperfect memory, wishful thinking or something else), but it just doesn't.

I said before, I find it hard to believe that any oncologist would give someone with bone mets only a "4 months to live" prognosis. A "4 WEEKS to 4 months" is even less plausible based on the information we have (TNBC with bone mets, 4 years between initial diagnosis and recurrence and feeling well enough to travel by plane). The other piece that doesn't add up is that "everything shrank" in 2 months - she is not de novo, so probably doesn't have a breast tumor, and bone mets just don't "shrink" like that, especially in just two months. Bone healing takes a long time.

But even assuming that everything happened exactly as your friend recalls, it's still only evidence that the antineoplastons do "something," but not that they are a cure. The scant clinical trial data published by the Burzynski clinic in diffuse pontine glioma shows survival rates in the same ballpark as historic controls (with 90% of patients dying within 2 years - it's a terrible form of brain cancer, especially since it affects children). Is it better than no treatment? Maybe. Is it better than conventional palliative treatment? Highly doubtful.

I understand wanting to believe that Burzynski might have a cure, given everything you've been through since your diagnosis. Although I've been lucky with my treatment so far, so I'm not (yet) in the same urgent frame of mind, I do have a 9-year old daughter and I know that my chances of seeing her grow up are slim with the current options. I also want a cure, now, before we run out of time. But I want a real cure, and I have seen very little to suggest that Burzynski has it.

If there is real hope in this story is that abraxane and tecentriq got your friend to NEAD and will hopefully keep her there for a long time. We need more of that, faster, for more of us.