Bristol –Meyers Squib no emergency patient support services

This post was written by marc on July 25, 2018
Posted Under: Letters to the Editor
I didn’t know how much you are into bashing big pharma about their drug prices, but this is a different opportunity, it’s about their no support for people dying of know side effects of these drugs and how many people could be saved with an emergency hotline, that they are too cheap to provide that. And as a result, needless people are dying who could have lived. I am in the middle of such a story right now and I have severe pneumonitis caused by Opdivo, not cancer. And I might be dead by tomorrow unless I do everything just right, where I will fully recover, (except for the cancer part).

So – this is my story – and it’s a very interesting story.

As we know BMS makes a lot of great drugs and we can argue drug prices vs. lives prolonged but we can all agree BMS is well compensated for their products, what are quality products. Opdivo is on of the leading immunotherapy drug available today. But Ipdivo doesn’t cure cancer so everyone on opdivo dies. But often it is the opdivo, and not the cancer that kills them. And that get us to my situation.

Opdivo ramps up the immune system to attack cancer, but can attack normal tissue as well, especially where radiation is involved. In my case I radiated my back to slear lung cancer spreading to back muscle. The radiation has an affect of tagging tissue as enemy tissue so it makes cancer look more tasty to the immune system. Unfortunately it also had muscle and lung tissue in the radiation field and my immune system misclassified that as enemy as well, and that’s my problem. Opdivo induced pneumonitis – my immune system is trying to kill my lungs and suffocate me.

This is a very serious deadly problem short term and independent from cancer. My lungs are inflamed and are not exchanging gasses and my O2 is very low and walking around the house with oxygen if difficult. If I get over this my lung function should return, or I die soon.

The standard treatment is steroids, (Prednisone) which everyone does. You get the prednisone and it shuts down the immune response and you live, except when it doesn’t work, and then you either suffocate or die of steroid toxicity. And that’s where it looked like I could be heading when I tried to call BMS for alternative treatments. I had already escalated to 200/mg/day Prednisone and going up.

But – when I tried calling I cot this response instead, and they had nothing at all for me. And that’s at least morally wrong if not legally wrong. Their product has documented deadly and not rare side effects that can be cured if they put in a minimal amount of effort and had an emergency advice hotline. And this is what you get instead.

Now – you might ask, what was I expecting?

My answer is unusual. I am somewhat of a self taught medical genius and I came up with and designed all my medical procedures. And I was well aware of the risks associated with using opdivo the way I did. So I’m not blaming anyone here.

Knowing the Prednisone might fail for me I needed a better plan. So I went into the organ rejection world, which was really my case, and I found Cellcept and everolimus, but target immune suppression but use different pathways that steroids. Buy using 3 drugs there should be synergy and the total immune suppression would be greater. And, by using lower dosages of all 3 then I avoid side effects from any. The 2 new drugs only suppress B and T cells which are the one’s causing the problem allowing the rest of the immune system to fight normal stuff.

BTW – I I get a cold right now – I’m dead.

The important point is this could have been a learning opportunity for BSM to gather information that works and share it with other doctors who are calling in for the same thing. A doctor might ask, I have a patient and prednisone isn’t going to do it, got anything else? “Yeah, someone tryied cellcelp and everolimus and it worked.”

BTW – I did try it and so far it seems to have worked. So – this story of mine morphs into a far more interesting back story. But for now – my objective is to shame BMS into emergence tech support for dealing with known fatal side effects from their products.

So – as journalists, a chance to make the world a better place. And don’t we all need a little of that right now. So join me in what might be my final life’s battle and help me make a big stupid company smarter.

Thank in advance.

Marc Perkel
Random Genius


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