Bristol –Meyers Squib no emergency patient support services

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


You are subscribed as:

One-click Unsubscribe:

To change your options:

News mailing list

Has America become the Bad Guys?

Letter to the Editor

When I was a child I used to have nightmares about government thugs arresting my parents and dragging us kids off somewhere else. It was a time when Nazis and WWII wasn’t very long in the past and we all learned about the concentration camps. And although not much about being raised Jewish stuck with me, the holocaust was definitely real. But we were Americans, the good guys, who were there like superheroes to save the day, liberating the prisoners from the death camps. And that made being an American something to be proud of.

Now I see in the news where we as Americans are taking desperate refugees crossing the border and throwing them in jail and deliberately separating them from their children as some form of cruel nightmare punishment and using that to send a message, “Don’t come to America or we will take your children from you!”. Have we now become them? Are we now the bad guys? Are we the kind of people who separate children from their parents? Are we really that cruel? Are we becoming the nightmare country? Have we gone insane?

Israel has no more right to exist than any other nation

Letter to the Editor

The violence over Jerusalem is a fight over one religion’s invisible friend vs. another religion’s invisible friend both claiming that their deities gave them land. The truth is that there is no such thing as god(s) and Jerusalem is just another piece of dirt just like any other location on this planet. The violence and death this week following the ill conceived decision to move America’s embassy to Jerusalem reflects poorly on both the Israelis and Palestinians.

This is the 21st century and it’s time that we put to rest the ideas of old primitive religions and property claims attributed to deities. God did not give holy land to anyone and no nation has any more of a right to exist than any other nation. The time has come come that humanity lay down our weapons and come together to figure out how to live together in peace, live in harmony with Reality, and to take care of our common space ship, planet Earth, so that with every generation our future will always be better than our past.

Deficits don’t matter when cutting taxes for rich

Letter to the Editor

Now that Republicans are in power it’s back to borrow and spend. We get tax cuts for the rich and deficit spending skyrockets. No one talks about fiscal responsibility, balancing the budget, or the national debt anymore. But debt has historically been the basis for slavery and some day the bill is going to be due and the credit is going to be cut off and it will be time to pay for it all. And that will be a sad day indeed.

Trump – President for Life?

Letter to the Editor

At a political event in Florida Trump praised China’s president XI Jimping saying “He’s now president for life. President for life. And he’s great, And look, he was able to do that. I think it’s great. Maybe we’ll give that a shot some day.”

I’d like to see Trump be president for life. We haven’t done that in a long time. The last president for life America had was John F. Kennedy.

Boycott School

Letter to the Editor

We are never going to get meaningful gun control until we do something drastic. I think students should boycott school until meaningful gun control laws are passed. Schools are not safe and all we get is ridiculous ideas like arming teachers and armed veterans in schools. If students shut down the schools we can bring the issue to a head or create an alternative form of education online where kids don’t have to be shot to protect the profits of gun manufacturers.

America doesn’t care about gun violence

Letter to the Editor

I wish that they would stop reporting school shooting as if people care about children being slaughtered at school. We don’t. And it’s an insult to pretend we do. When we allow a 17 year old to buy a rifle then we don’t care more about gun manufacturer’s profits that we care about the live of our children. And since we’re clearly not going to do anything about it why not just tell our children, we don’t give a f___ about you!

Congress shouldn’t be paid during a shutdown

Letter to the Editor

I’d like to see a change made so that Congress wouldn’t be paid during a government shutdown. Here in California we have that law and if they don’t pass the budget on time they don’t get paid. Congress has a duty to do their job and if they don’t do it they should suffer along with the rest of us.

Republicans in collusion with Russians

Letter to the Editor

Donald Trump would not be president if not for the help he received from the Communists, America’s enemies. Now the Republican party is colluding with the Russians to shut down the investigation into how Russia installed a moron as president. Republicans hate Trump but are going to cover for him because they themselves are counting on Russia’s support to win the mid term elections this year.

Colluding with the Communist Party is treason as is covering up collusion with America’s enemies. At this point I see little difference between the Communists and the Republicans in that the Republicans sold us out to the Communists. It appears to me like Russia is about to win the cold war without firing a shot. They are just walking in and taking over because we are too lazy, greedy, weak, and stupid to stop them. Are we going to sit back and just let it happen. This isn’t the America I was raised to believe in. What ever happened to The Land of the Free and the Home of the Brave? Does Truth even have meaning anymore?

Jerusalem is just another piece of dirt

Letter to the Editor

The Jerusalem controversy is just another example of how religion ruins everything. Trump, sucking up to his religious base, wants to move America’s embassy to Jerusalem to side with Jews and Christians against Muslims as to who God gave this land to. In the Reality based world however, there is no God and Jerusalem is just another piece of dirt like anywhere else in the middle east.

How much are we going to spend on wars and crazy stuff because one group’s invisible friend doesn’t get along with another group’s invisible friend? What are the consequences of turning our backs on Reality in favor of old stories that just are not true? I think more people should be focused on this world, this Reality, and what we can do to make this planet a better place to live. Reality matters, old stories don’t. Why don’t we focus on exploring the universe, electric cars, and curing cancer instead? Let’s do something useful with our limited existence.

Please stop praying for mass shooting victims

Letter to the Editor

Every time there’s a mass shooting they always say that this is not the time to talk about gun control, and that we should pray for the people who were killed and wounded. No! No! No! Stop the praying! It’s not working! Praying is like giving a sick person placebo. It’s a fake remedy.

For those who believe in God, do you really think he’s not very bright? Do you think he doesn’t get that praying is a distraction from actually doing something to keep guns out of the hands of crazy people? Do religious people not see that you are being exploited by politicians and gun manufacturers for profit? How many church shootings will it take before you figure out that you are being scammed? Having a gun in your hand doesn’t make you safe. Taking the gun out of the hands of crazy people makes you safe. If you’re going to pray then pray for wisdom and realize that surely we can do better than this.

Republicans no longer care about the deficit

Letter to the Editor

Back when Obama was president Republicans complained about the deficit. The question was always, “How are we going to pay for it?” But now we have a Republican president who wants a huge tax cut for the rich that will raise the deficit trillions of dollars and no one is talking about the deficit anymore. When it comes to the super rich getting what they want the rules are different.

Hillary’s loss not Comey’s Fault

Letter to the Editor

Hillary Clinton is blaming FBI director James Comey for her loss to Trump. While I agree that Comey could have chosen not to reveal a new investigation just before an election, and that the revelation was one of many decisive events, her loss was not Comey’s fault.

Hillary’s classified emails were found on a laptop that these emails shouldn’t have been on. The laptop belonged to her aide, and her aide’s husband was caught sexting a 15 year old girl from that laptop. Had Hillary used the secure email system provided to her by the government, like she was supposed to have done, those emails would not have been there in the first place.

I think it’s time Hillary quit blaming everyone else for her loss and take responsibility for her own actions rather than being out there trying to make a buck off of an election that was nothing short of disgusting on all sides. How pathetic do you have to be to lose to Donald Trump, and how clueless can you be to think the voters are going to believe your loss wasn’t your own fault?

Ted Cruz – You ROCK!

Letter to the Editor

It’s amazing how people misjudge Republicans based on stereotypes and that Republicans are somehow all uncool. Senator @TedCruz proved them wrong this week when he clicked on the “Like” button for a porno movie on Twitter. Who knew that @TedCruz was kool! People think it’s the Dems who are porn friendly, but when you really compare Democrat and Republican sex scandals, the Republicans win. So I’m going to follow @TedCruz on Twitter!

Congress should vote against Texas aid

Letter to the Editor

With Hurricane Harvey bearing down in Houston, Texas Senator Ted Cruz wants Congress to pass an aid bill to support the people of Texas. But when Hurricane Sandy destroyed the northeast the senators from Texas voted NO on aid for them.

The way I see it, it is wrong that Texas comes hat in hand asking for aid after voting to deny aid to others who are suffering for a hurricane disaster. And if I were a Senator from the northeast I would tell Texas that they should get down on there hand and knees and beg forgiveness before I’d give them a dime of aid. Yes – it is wrong to deny Americans in Texas aid during a disaster. But it is also wrong for Texas to vote against aid for Americans in New Your and New Jersey and Texas should have to at least confess their sins and ask the rest of America for absolution.

Did brain tumor cause McCain to vote NO on Trumpcare

Letter to the Editor

Senator Ron Johnson said that he thinks McCain’s brain tumor might have “factored in” as to why McCain might have voted NO on the “skinny Obamacare repeal”, and oddly enough – I agree with him.

McCain has a very serious brain cancer and this vote might have been McCain’s last significant vote in the Senate and this will be the vote he’s remembered for. So maybe he wanted his last vote to be something good rather than something evil. Sometimes when a person is facing their mortality and wanting to give their life meaning they decide to do the right thing rather than waste their remaining existence on petty political points.

Congress passes Russia Sanctions

Letter to the Editor

After 6 months where the Republicans have had control of the House, Senate, and Presidency, the finally passed their first major piece of legislation. They passed a bill to sanction Russia for helping get Trump elected. It will be interesting to see if Trump signs it. What a bizarre world we live in.

McCain should get the health care he votes for

Letter to the Editor

As a member of the Senate John McCain gets special treatment when it comes to health care. I wonder how McCain would vote, now that he has brain cancer, if he had no special treatment and had to get the health care package that he votes for. You would think someone facing death would have a little compassion for the American People.

McCain recovering in hospital with health care vote looming

Letter to the Editor

The US Senate has delayed a vote on passing Trumpcare because Senator John McCain is in the hospital. They need to wait for McCain to recover so that he can vote to take away health care protections for the rest of us. How pathetic is that?

McCain’s procedure is something that Obamacare protects, but under Trumpcare if McCain were just a citizen the procedure he is getting to remove a blood clot might be denied. I’m hoping that McCain’s medical experience will help him feel compassion before he votes to take health care protections away from the rest of us.

Did I just find the Cure for Cancer?

Dear Friends and Family,

As you all know from my previous announcements that I have been working on designing a custom immunotherapy treatment that has never been tried before, and the hard part as usual, getting the doctors to do it. Well – I finally got the treatment and – it appears as if it worked. And I stress the word “appears” because it’s looks like it’s going to take about 2 months before imaging is going to show what’s happening. But my cancer symptoms are gone.

I am in a state of stunned disbelief. Too early to believe it – too late not to believe it.

On Monday June 19 I got an infusion of ipilimumab which is an immunotherapy drug. 2 days later I got a series of 3 radiation treatments (21st thru 23rd). Dosage, 3 fractions of 9gy xrays from Varian Trilogy set at 9MV. These treatment we unusual in that instead of irradiating the whole tumor, I asked that they just burn a disk in the center of the main tumor leaving the rest of the tumor undamaged. This request was very counter intuitive in radiology because they are trained to kill every cancer cell they can possibly hit and it took a lot of work to get them to deliberately leave tumor undamaged.

But that was important because I was turning the tumor into a school, not a battlefield, where I was teaching my immune system what the cancer looked like (antigens) and classify it as an enemy. By using partial radiation I created an environment where white blood cells in my immune system could interact with dead cancer and learn it.

4 days after treatment I started getting a reaction. I was queasy, low energy, aches and pains, chills. Wgen I got home I had a fever of 101, and it occurred to me, is this the fever I was hoping for?

Fever indicates that I’m having an immune response. My immune system is fighting something. Was it attacking the cancer?

So I took a hot bath and used a heating pad to increase the fever and got it up to 103. I wanted to create heat shock proteins and signal the battle was on. Wednesday still had fever and was rather out of it. Thursday morning fever broke and all my cancer symptoms were gone.

I have aednocarsonoma and the aedno part of the name means “mucus secreting”. On Thursday the mucus went to almost none. I had been coughing up a lot even before I was diagnosed last August. I went out and sawed limbs off a tree, hard work, and didn’t cough up anything. At night when I lay down and in the morning when I get up, almost nothing. Energy is good. On Saturday I did a 4 mile hike. 2 miles up hill and 2 down. It was like walking up the stairs of a 60 story building, but without the stairs. Yes I was out of breath and I coughed, but didn’t cough anything up.

If I have a mucus secreting cancer and have no mucus, is the cancer dead? Why do I no longer have symptoms?

However …

I have no hard information and I don’t actually know what happened but something extraordinary occurred and it is so easy to want to declare victory, but the easiest person to fool is myself and I would like to see a doctor with a before and after image showing the cancer gone. I don’t have that and I’m not going to get it soon. So – stunned disbelief is as good as it gets, for now.

I have to say that although I knew this should work, I didn’t expect it to actually work. I thought the most likely outcome was failure. And I definitely didn’t expect that I might have gone from having cancer to possibly cancer free in just 10 days. I had planned to repeat this process at least 2 more times changing the radiation and drugs around. But now I don’t know if I have any live tumor to attack anymore and no point in hitting dead tumor with xrays. At this point there are no plans for any future treatment.

Often when the abscopal effect occurs it is a “complete response” which means cured. My immune system might kill every last cancer cell. And I may have created a vaccine against my own cancer which will prevent recurrence. Note the word “may”.

The implications are stunning. If this did work it could work for any cancer for anyone. It’s all low tech off the shelf stuff where the secret sauce is timing and partial radiation of the tumor. Did I find the cure for cancer? Might be a Nobel Prize in it for me and a movie about my life. I’m thinking Hugh Jackman can play my part, but this is the optimistic thinking I’m trying to avoid.

Anyhow, I’m still trying to wrap my head around the idea that I might not die soon. And also wondering if I missed something and I just kicked the can down the road. But I’m 11 months into a cancer where median survival is 8 months and I’m still climbing mountains 3 months past my sell by date. So that in itself is victory.

I will write more when I find out more.

Marc Perkel
Random Genius

America – A celebration of Stupidity and Corruption

Letter to the Editor

As we untangle the mess that’s called the 2016 election we see that both parties are a celebration of stupidity and corruption. While we investigate Russian “meddling” in our election we are ignoring that we know from Wikileaks that Hillary cheated in her election with Bernie Sanders and that the core players who cheated are still in power in the Democrat Party. And saying vote for us because we are a little less corrupt than the Republicans is no longer good enough.

Meanwhile the Republicans are too incompetent to govern and the justice department has to wonder if they can prosecute a president who is too stupid to even understand the laws that he breaks with impunity. And as stupid as Trump is, the 16 other Republicans he ran against were actually even worse. We now have the Republicans, who are in the pockets of big money, fighting the Democrats, who are also in the pockets of big money, and they only thing that always seems to happen is that the top 1% always gets the tax break while the rest of us get stripped of medical protections.

I’m so disgusted that it makes me want to burn a flag. But I no longer think the flag is worthy of burning because America no longer has an meaning. So this 4th of July I’m going to hang the flag upside down because I think we can all agree, America is in distress.

Democrats should offer Paul Ryan the Presidency

Letter to the Editor

As we all know, if we impeach President Trump then Vice President Mike Pence becomes president, and a lot of people (including me) think that he is even worse than Trump. But – Speaker of the House Paul Ryan is third in line for the presidency. And Ryan is the lesser of 3 evils.

Nancy Pelosi and Chuck Schumer should go to Paul Ryan and say, “Tell you what we’ll do. If you impeach Trump and Pence at the same time then you become president and we Democrats will support that.” Since they are offering Ryan to become president I would think Ryan would be interested. But would the Democrats be smart enough to do this? Not a chance!

Russian Hackers breached voting systems in 39 states

Letter to the Editor

Apparently in the 2016 election Bloomberg News reports that “Russian hackers managed to breach voter databases and software systems in 39 states”. 39 STATES!!! None of these reports talk about what the Russians did when they broke in other than to use the words “efforts to meddle or tamper” with our election.

If the Russians got into these systems one has to assume that they did something even if we don’t know what they did. Many of these news reports seem do downplay the impact as if they didn’t actually change any results. I have a hard time believing that they didn’t flip the election and that in reality America didn’t choose our leaders, the Communists did. Whatever happened in 2016 can hardly be called an election.

Republicans – watch your backs

Letter to the Editor

If Trump and the Republicans manage to repeal Obamacare and ruin health coverage by remove caps and preexisting conditions, a lot of people are going to end up dead. And the friends and families of those dead people are going to come looking for the members of Congress who caused their death and they are not going to be happy.

Trump – put your science money where your mouth is

Letter to the Editor

On Earth Day, in response to the March for Science, Trump said, “My administration is committed to advancing scientific research that leads to a better understanding of our environment and of environmental risks, As we do so, we should remember that rigorous science depends not on ideology, but on a spirit of honest inquiry and robust debate.”

That’s is a welcome response, but the real test is if you actually fund science or not. I say, put your money where your mouth is. Funding science can indeed help America become great and create jobs and a better life for everyone. Science can settle the climate change debate and prove if it’s real or just some liberal fraud. Many of our greatest scientific advancements that cure cancer come from funding research.

So I’m hoping this isn’t just an attempt to just say the right thing and that you actually realize funding science is objectively a good idea. Science is the study of Reality and we want to make Reality our friend.

Science and Faith are not compatible

Letter to the Editor

This Saturday is the March for Science and there is a good reason to put science first. Science is the study of Reality the way it really is. Faith is a decision to believe whatever you want regardless of if it’s real.

Although it is true that people of faith also believe in a lot of things that are real, faith allows one to ignore Reality and choose to believe regardless of the evidence. In the world of science when what you believe is determined to be wrong then you are expected to change your mind and go with what the evidence supports.

In the world of science it is assumed that Reality is something that exists and we learn from the universe through discovery. In the faith based world they choose to believe something with the expectation that Reality will magically transform to match what they believe. But, as they say, you can’t serve two masters, and if you choose to put your personal beliefs ahead of Reality then your understanding of the universe stops. It also causes brain damage because you lose the ability to distinguish what is real from what isn’t. The concept of Truth goes away because proof relies on evidence which are concepts from the science based world.

Ultimately we have to learn how to live in harmony with Reality or else Reality will kick us out of existence. People who have turned their backs to Reality put all of humanity at risk. Although believing in invisible friends is protected by the Constitution, it’s a sin against the universe. And we could all be punished with extinction.

Democrats right to oppose Goresuch

Letter to the Editor

Democrats are right to filibuster Goresuch for the Supreme Court because Merrick Garland, appointed by President Obama is the next nominee. Goresuch is only up if Garland is voted down. If Garland doesn’t get a vote, neither should Goresuch.

There is also a bigger issue. Goresuch is being appointed by Trump who lost the popular vote and only became president because he and his staff colluded with the Communists in Russia to rig the election. It’s bad enough that we have a Communist appointed president, but do we want Russian influence on the Supreme Court as well when Trump could soon be impeached for treason? I don’t think so. Obama appointed Garland and Garland is next in line for a vote. Democrats need to say NO to Republican cheating and force a vote on Garland first.

Dems lost because they opposed sex with miners

Letter to the Editor

The Democratic party has been losing ground in rural white America because of the their opposition to having sex with miners. “Just because I work in a coal mine doesn’t mean I shouldn’t be allowed to have sex!”, a coal miner might have said if he were asked. “These liberals want to control what I do in bed!”

I reporter might have said in response, “It’s not sex with miners, it’s sex with minors. That means you can’t have sex with your daughters.” “Oh – I get it now,”, the miner might have responded. “But that’s even worse!”

Looks like getting the rural white vote is going to be a challenge for Dems as Hillary plans her next run for president in 2020.

Do Republicans like dirty air and polluted water?

Letter to the Editor

I’m trying to understand of there’s some physiological difference between Republicans and Democrats where Republicans like breathing dirty air and and drinking polluted water. Trump is now trying to undo everything Obama do to protect the environment as if clean air and clean water are a bad thing. It just seems to me that Republicans would want to drink clean water and breathe clean air too. I suppose that making Obama look bad is more important than the health of The People?

Trump threatens House to pass Trumpcare

Letter to the Editor

Trump is so obsessed with repealing Obamacare that he’s threatening members of the House that they will lose their seats. Trump is destroying America and when people no longer can afford health care they are not going to be happy. Makes me wonder what will happen when America loses health coverage and they kick grandma to the curb and let people die on the streets. When their friend and family start dying there’s going to be a backlash against those who took health care away.

Republicans better take into consideration what they are doing to Americans and make it about what is good for us and not about what Trump wants.