Hey guys (and gals) new trial coming up for castrate resistant PC that may be of interest some of you drfabio.com/imagingblog/201...
Also met today with a very high up guy at a top notch teaching university hospital. We met on another subject. However talk turned To various cancer treatments. He told me his university had recent come up with a new incredible treatment for non Hodgkin’s lymphoma that in their initial tests literally cured 55 out of 56 patients. He said it could very possibly translate to other cancers. The details were hard for me as a layman to follow. I asked him how FDA approvals were going and he said they hadn’t been able to raise sufficient funds yet for the expensive process. I asked why wouldn’t a pharmaceutical company jump on it with such great preliminary success. To my absolute shock he said because it’s potentially curative with a one time treatment. These companies prefer to invest in treatments that could be ongoing and provide a long term income stream. Plus it could potentially hurt revenue of other drugs they now sell if the patients are cured. He said until recently the NIH would step in with funding but that it was stripped recently of most of its funding. This guys was a well respected guy (I checked into him more after ) in a very high up position. I was disgusted. Now I know why no one in pharma even wants a cure for prostate cancer. Way too much $$$$$ coming in from all of us suckers that goes away if we are cured. 🙈🙈🙈🙈🙈🙈🙈
Schwah
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Schwah
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A cancer patient is a walking $ taking 10,000 a month drugs to control it....what sane pharmaceutical company would want a cure to interfere with this income stream...this is America for God's sake...bought and paid for by Wall Street
This saddens me so much. People are dying and suffering, caregivers are strained and heartbroken...and potential cures are being held back...? What has happened to humanity.
Malecare had the worlds first cancer research crowdfunding platform. Startacure.org. We shut it down after three years since few people were funding projects. Do any of you want to help restart it?
I personally doubt I have the expertise, but would very much contribute to multiple projects.
See my post below, but I think to have successful cancer crowdfunding platform, word of mouth needs to be strong..I.e. posts on Facebook, high visibility nationally and internationally. I would like to see a reliable, reputable, go-to cancer crowdfunding platform in-place.
I will definitely forward it to my guy. I got the feeling tho that because it’s a public university that they have a lot of restrictions on how they go about raising funds. He did it’s not dead but unfortunately in the slow lane for now. Nice to vent tho to this group and always get great feedback. A lot of kind souls here.
Can you characterize the action of this treatment? What class is it in, or what mechanism does it exploit?
Is it in the energy category (radiation, heat, cold, electricity,...), surgery, androgen, anti-mitotic ( chemo ), environmental (anti-"myeloid dertived supressor cell" or possibly anti-TGF would qualify as this as well), checkpoint inhibitor, CAR-T, vaccine, monclonal antibody, ...
is it a drug conjugate, does it interact in a biochemical manner (a blocker, or an inhibitor, an agonist or an antagonist), what does it bind with, is it a modification of a natural enzyme or a cytokine, or a hormone, or a section of one of these....
what is the general class of the treatment? a little more detail than its magical, please.
Actinium225 may be curative with one treatment, so I doubt the truth of the story.
Martin, i understand that you would like more detail about the nature of the treatment. However if you know so little about how it works, why do you already “doubt the truth of the story”? The tone of your reply (that statement in particular) felt a bit accusatory. Hopefully it wasn’t intended as such.
Nevertheless, I’ll try and answer your questions, as best I can. I have no scientific nor medical background, as you apparently do by the technical nature of your questions. I’d think it was the “drug conjugate” category tho because he described it as something one takes thru the veins. He said something about a virus I think, but it was over my head. He is director for the health department at a major public university so he is a pretty good source. Can’t imagine he made it all up. Perhaps he exaggerated the efficacy somewhat although I doubt that. I will be seeing him again in the next few weeks and I’ll try and get more detail as to how it works.
I doubt the truth for the same reason that I doubt the truth of stories that the auto companies have an engine that works on water vapor, and they are keeping it from the market because it would be bad for business. So the features that make the story hard to believe are that the claim is too revolutionary and the motivation is too evil.
But thanks for seeing if there is more information available.
I know so little about how it works because I only know what you posted.
A drug conjugate is, as I understand it, a compound that has two sections, or three if you count the connector. One section is the guidance; the other section is the medicine. The medicine is delivered to a specific target, and so while the entire body is in a sense exposed to the medicine, the medicine is active, or activated, only in the vicinity of the disease.
Like I said this crowd is sharp and keeps you hopping. And that’s a good thing. Hearing all these opinions is enlightening. Just keep it nice ok? No testosterone in this body right now to fight back lol. We are all in this together Brutha. I’m on it tho now to get more info. It’s ucla so maybe someone here will find the study before I get back with an update.
That is what my grandson said ,he was a pharmacist student ,he said there was to much money in cancer so big pharmaceutical company’s would not let a cure happen 😡😡😡😡😡
I agree, it is disgusting, but I don't find it surprising. If the NIH does start a trial, big pharma lobbiests would probably do all they can to get the trial halted discredited.
I'm not sure. Here is some congressional testimony:
"I am Francis S. Collins, M.D., Ph.D., and I have served as the Director of the National Institutes of Health (NIH) since 2009.
...
I want to personally express gratitude to this Subcommittee and its leadership for its support in crafting and passing the FY 2018 Consolidated Appropriations Bill. The FY 2018 Omnibus provides an incredible increase of $3 billion for NIH, including funding for opioid- and pain-related research, Alzheimer’s disease, antimicrobial resistance, and development of a universal influenza vaccine. NIH has immediately set to work to invest those additional resources into groundbreaking research.
...
The FY 2019 Budget provides $34.8 billion for NIH to fund the highest priority scientific discoveries while also maintaining fiscal stewardship of Federal resources. "
The proposed budget 2018 included a substantial cut, but what was passed didn't look very much like the proposed budget. It rarely does. The proposed 2019 budget certainly is not a large cut; its roughly $2.5 billion more than 2016, and $1.5 billion more than 2018.
The national cancer institute (NCI) took a minor haircut, $5,651 million in FY2018, $5,626 million in FY2019, a -$24 million change, only about 0.4%.
Again, what Congress passes will probably be different.
So these are my thoughts. Bottom line, I think we have to take more ownership in our health, and if these statements about pharma companies are true, we really can’t rely on them for a feasible expedited solution.
1. It is imperatives be that we get a little more detail from Schwah’s doctor. But especially if we can mention him and his study
2. We start a campaign of awareness - with the doctors permission, we start spreading the news on social media. Facebook, Twitter, WhatsApp, etc etc. Post it, have your friends share it, have it gain awareness and momentum. This can lead to two things, a) enough momentum can generate enough buzz and hopefully shame a large pharma company to fund further studies, or even a smaller company trying to break into the space or even private angel/venture cap investors or b) enough regular folks know about it and can privately crowdfund studies similar to it
2b) even send messages that to news channels, even shows like “last week tonight with John Oliver”. The whole we’re close to a cure but are meeting obstacles from pharma because of the lack of financial incentive angle.
Maybe I am going too far, I dunno, I need a reality check perhaps. But I think most if not all of us has known someone who has passed from cancer. Something needs to be done where potential groundbreaking trials do not fall through the bureaucracy.
EDIT: I for one would happily donate to a crowdfunding site for trials with good potential
A lot more people making a living from cancer than dying from it. That includes big pharma and a raft of docs, hospitals, medical device OEMs, and so forth. Cancer is big business.
I have some close friends that recently retired from fairly high positions in a major pharmaceutical company. The hurdle for developing a new drug is projected sales exceeding $800 million per year. That is what they need to recoup the FDA approval process, development costs, production and distribution costs, marketing, overhead, and oh yeah, some profit. No profit, no business.
Bash the big pharma companies if you like, but they are responding to the rules set by the FDA. That's why the cost of getting a new drug to market is so incredibly high.
and THAT is why Zytiga started out at nearly 12,000 dollars a month??.... It doesn't take a whole lot of men on a drug at that price to make back that kind of money..... There is little question that there is price gouging with Big Pharma... NOT looking to start a discussion... just think it a shame that capitalism works wonderfully in a lot of arena's but putting profit over health is an area in which it fails miserably..... If I have to move to higher tier drugs for my cancer I can say WITHOUT RESERVATION I am sentenced to death.
After checking grants, patient prescription assistance sites etc etc ( I was involved professionally at one time getting such discounts for people) the only hope for me would be qualifying for a clinical trial..... Say what you like about the Horrors of single payer systems....they don't let people die because they can't afford to live.
The culprit is not capitalism, it is regulation. You needn't die for lack of money. You can order generic Zytiga, abiraterone, from an Indian pharmacy for $150 per month.
The Indians are capitalists too. They are making a profit. Their government doesn't make them spend a billion dollars or more to get a drug approved.
Now that Zytiga is coming off patent, prices in the US will soon start to fall.
Single payer systems don't let people die because they can't afford to live. They let people die waiting to get treatment.
Would you happen to have any contact information for this pharmacy?? How did you happen upon it?? Are there listings on the Internet of which you are aware that identify foreign pharmacies where generic drugs may be gotten at discount prices?? Wonder if there is a way to assure that you are getting the " real deal "....
I found a likely candidate. What Schwah described is a clinical trial. So I went to clinicaltrials.gov, searched for non Hodgkin’s lymphoma, and looked in the column for enrollment.
The link below is to a study with 57 participants. They claim a 97% Objective Response Rate in previously untreated patients. Patients were treated with up to 6 courses every 28 days.
Vorinostat, Cladribine, and Rituximab in Treating Patients With Mantle Cell Lymphoma, Relapsed Chronic Lymphocytic Leukemia, or Relapsed B Cell Non-Hodgkin's Lymphoma
Schwah - is the institution OHSU Knight Cancer Institute?
The bad news: they also report 90% toxicity in the previously untreated group. ABout 2/3 of those patients found the treatment tolerable.
20% of the previously untreated patients died, and 72% of the relapsed patients died.
About half of all patients had serious adverse events.
Whether or not this is the cure described to Schwah, there are some useful points here.
A high response rate combined with high mortality isn't what patients seek.
By the time the drug or combo gets to this stage, there is already a lot of development and trials.
Drug companies might make well-informed decisions not to pursue this research because they have reason to believe that the toxicity and mortality problems are intractable.
It may not be quite as simple as refusing to fund a new cure for a terrible disease.
Not the one. Okkkkkkk. Since you’re looking. The study was done at ucla. Let me know what you can find about that one. I was told that no recurrence three years later. Like I said could be an exaggeration but sure didn’t seem like the type and I know he was a big wig there.
It is possible that I have the exact disease wrong. I know it had “hodgekin” in it and it was ucla. This group is so awesome. You can’t get away with anything 🙈🙈. I love it. I will see this guy for sure soon and I’ll get more detail. In the meantime hopefully someone will find the right study.
57 patients, conducted at Mayo Clinic (Principle Investigator) UCLA, Karmanos Cancer Institute, and Novartis Pharmaceuticals. Guess who paid for the study?
It was not a "one time treatment."
"Patients received everolimus 10 mg daily until disease progression, intolerable toxicity, withdrawal of consent, or investigator decision. "
It didn't cure all but one patient:
"Overall response rate was 45.6% ... five patients (8.8%) experienced a complete response and 21 patients had a partial response . Median PFS (Progression Free Survival) was 8.0 months... Seven patients (12%) were long-term responders (≥ 12 months)"
Another 20 patients had their disease stabilized; since this trial was for people who had essentially failed earlier treatment, that is pretty good. The Disease Control Rate, DCR, which includes both overall response (tumor shrinkage) and those 20 stabilized patients, was 81%.
About 1/3 of patients had serious adverse events, not unusual in chemotherapy.
Progression Free Survival (PFS) doesn't look all that good, but I don't know enough about this disease to evaluate these results in context.
Overall survival was 45 of the original 57 patients after 5 years.
These are interesting results, and as the authors conclude
"Therefore, the overall positive clinical outcomes for many patients in this study confirm previous findings and support further evaluation of everolimus in patients with classical HL."
Here's the kicker: everolimus, under the brand name AFINITOR, is available for prescription. It was first approved in the US for kidney cancer in 2009.
No collusion, no conspiracy, no attempt to keep this drug away from patients. This study was made possible by a greedy pharmaceutical company. They developed the drug, and they paid for a study to see if it would benefit other cancer patients.
I for one am glad we have greedy pharmaceutical companies. No profit, no business. No business, no old drugs, no new drugs, no new trials. No progress. Big pharm has plenty of problems, as does every large industry, but they also have the money, talent, and facilities to develop new drugs and test them.
I'm a lot more concerned about the process that the government has put into place. It makes new drugs, drug trials, and research in general extremely expensive. Those rules favor big companies and keep out small companies. That means that a lot of creativity and new thinking can't be pursued.
I'm all for crowdfunding research into our disease, but it is a bit more complex than it appears from stories like this one. The drug companies are very, very good at what they do. My question for crowdfunding is what can we do that the cancer industry cannot or will not do? That's the best way to use the vastly smaller sums that even a wildly successful crowdfunding effort can raise.
If this is the one (and it sounds like it is) my guy apparently did exaggerate the results and I perhaps jumped the gun on the conspiracy angle. I will confirm this is the one when I see him next and attempt to understand this matter a little better. Thank you FCoffey. Good detective work. Stay tuned for more.
You're welcome. It's what I do, I like it and I'm good at it.
It's a pretty close match to what you describe, and I didn't find anything else very close.
Your guy is most likely repeating what he was told. Tales like this tend to grow in the telling. The way it was related to you certainly suggests the conspiracy angle.
There are certainly economic incentives that push for treatments rather than cures. But there are also a lot of very smart, motivated people who want to develop a cure. The way the system works now, the price for a cure could be set at incredibly high levels, so that the total revenue per patient was still substantial.
I look forward to hearing what your source has to say. Good luck.
Well he did mention it was a one time treatment. I don’t know enough about how clinical trials work though, so maybe it was the same ne you mentioned. I still think the idea of a cancer oriented crowdfunding platform may still be a good one.
I do agree that patients suggesting what they think would be good to try (ie good to know if it actually is helpful or not) would be a refreshing development. A patient sponsored trial.
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Pluvicto rechallenge failed
Very slow start getting treatment and diagnosis 
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