This may save your life
by Jeremy Smith
I have come to the conclusion that I have remained quiet for far to long about the blatant disregard many Hematologists have for treating MPN patients with INFN. This is a life and death issue with repercussions for all MPN patients. Beginning with this article I will be speaking out much more publically about the success many of us have had by choosing INFN over Hydrea or Jakafi. There is too much at stake for MPN patients to continuing to remain silent on this issue.
The facts are clear; INF may very well be the one drug to prolong your life while we wait for a true cure to arrive. It is without a doubt the only drug that has been proven to slow down the progression of this insidious class of diseases. Yet many Hematologists still refuse to prescribe or even recommend INF as an option and this must change. INFN should be the first line drug choice to treat most MPN Patients. For those patients that do not do well on INF then and only then, should Hydrea or Jakafi be an option.
Part of the reason I made this decision to speak openly now is my concern that many patients who should be on INF are being prescribed Hydrea, a drug that does nothing to slow the progression of our diseases. And I am deeply concerned with the FDA’s approval of Jakafi for use with PV patients, that the one drug that has any potential of saving your life or extending your life, INFN, will be prescribed even less. Collectively we, the members of the MPN Community must not allow this to happen.
This is going to require all of us to fight the powers that be and stand up to companies like Incyte whose sole interest in this fight is to increase shareholder wealth. That may sound like a conspiracy theory from a new Oliver Stone movie but I kid you not this is very real. One needs look no further than today’s newspaper headlines and the EpiPen story to see that big pharma places profits and shareholder value over patient lives.
Incyte recently funded a study to compare the use of Jakafi and Hydrea for PV Patients to increase use of Jakafi with PV patients. From the outset this was a stacked deck and Hematologists knew this. Incyte knew that Jakafi would be viewed very favorable in a comparison with Hydrea since both drugs do nothing to slow down any of the classes of MPN diseases.
This study was designed to be a major public relations win for Incyte and it was. At one of my appointments with my doctor at Stanford earlier this year I asked him if he might reconsider using INFN over Hydrea with his PV or MF patients after seeing my results. I was told no and that for patients who do not tolerate Hydrea or its becomes less effective that he would move his PV patients to Jakafi now that it’s FDA approved. I was flabbergasted and said after seeing my results how could you do this. Once again my situation is considered a freak of nature and that the overall results with INFN do not warrant its inclusion.
Since Incyte and other drug companies seeking to promote their drugs sponsor many of the MPN Symposiums, MPN patients like me or others are not invited to speak on panels and talk about our successes with INFN. In my case I have made requests to address attendees on the success of INFN but have been turned down. My experience in attending MPN Symposiums is you will hear patients that share their stories about Jakafi use and while these are important stories, they should not be the only stories. Since I cannot share my stories there I will continue sharing my story here with you and at the MPN Forum Facebook page.
When I was first diagnosed in 1989 with PV by a local hematologist I was told I could live at most ten years, my PV was aggressive. After that diagnosis I went to Stanford seeking out what I believed was the best treatment in the World. At first it was just phlebotomies for me and then after a blood clot, I was put on Hydrea. My hematologist explained to me that Hydrea was my best option and that I should do well as the drug is very tolerable for most MPD patients. Back then the term MPD was used to describe our diseases. It took about six weeks to start seeing results and the drugs produced excellent numbers. I was happy because my doctor was happy and I was hopeful, because he was hopeful. However he left out an important part of the equation when it came to drug treatment options. Hydrea does nothing to slow down the progression of the disease.
LESSON #1 FOR MPN PATIENTS: ALWAYS SEEK ADDITIONAL MEDICAL ADVICE. BECOME AN EDUCATED PATIENT
In 1989 there was no MPN Forum and the Internet wasn’t where you went for medical information. Over time however I learned more about my disease and heard of a drug called INFN. I met a couple of patients on INFN and they told me I needed to be off of Hydrea, as Hydrea will not slow my disease down. I went back and reported this to my doctor and he said that’s not what the data says. At this point I was not about to question my doctor, he knew more than me. I also considered myself the patient and the patient does not question his doctor. Looking back in my rear view mirror this was a poor decision, as it would later have a profound impact on my disease progression.
For the next two decades every time I brought up switching to INFN I was told, “the data does not support its use.” I even went to a MPN Patient Symposium in San Mateo, CA and was informed by another other prominent hematologist that Hydrea is a better choice than INFN. Why would I change since my doctor was telling me that I was doing well on Hydrea?
Your numbers can remain what Doctors consider stable for a long time but what’s going on inside your bone marrow may be the equivalent of a major fire raging uncontrolled.
So I stayed with Hydrea and in 2012 my PV transitioned to MF. Hydrea did reduce my spleen size and help control my counts. This is sadly way too often the measurement of success in treatment of MPN’s. Like I did, you may develop a false sense of security when your numbers are stable. Your numbers can remain what doctors consider stable for a long time but what’s going on inside your bone marrow may be the equivalent of a major fire raging uncontrolled. We need a drug that has the potential to slow down or eliminate this and interferon is the only drug available today that has proven to be able to do this.
I don’t mean to scare any one currently taking Hydrea but you need to hear this information. If you have PV and you are on Hydrea or Jakafi. As your disease progresses scarring and fibrosis increase. Neither of these drugs will do a single thing to slow this process or the progression of your disease. It’s essential to try and slow down your disease in order to provide your body with more time to survive until a cure finally arrives.
In order to gain a better perspective on IFN use and its success I met with Dr. Silver in New York, it changed everything for me. He spent a lot of time talking with me and encouraging me to move to INFN. When I got back to California I still had to battle my doctor to get on IFN for MF. My doctor is what I would call an IFN skeptic. I had to be forceful and I finally asked him. “Will Hydrea slow down my MF?” His response was. “No.” I then responded. “ Will Jakafi slow down the MF and fibrosis?” He said “No.” I then said, “There is no other choice but to go on IFN. And if you won’t prescribe it I will find someone who will.” And that is how I moved to IFN in 2012. The other reason I demanded IFN was that my blasts were getting progressively worse. I knew if this was allowed to continue that I would be forced in to a SCT, which at the time my Doctor was attempting to push me towards.
Let me share with you what’s happened to me since I switched to IFN. The first thing I noticed is I felt much better beingoff the Hydrea. After starting IFN in November of 2012 I noticed the mental fogginess that I sometimes had was completely gone. During business meetings I was focused like a laser and did not lose my concentration anymore.
Both Doctors Silver and Mesa helped me understand that patients who start on IFN must be patient. It can take a year to see real results and they were 100% accurate in their assessment. There is a lot of experimenting that goes on with getting the dosage correct as well. Initially my white cells went from 8K to 19K and for the next six months they bounced up and down. It was almost a year before we began to see everything stabilize and I have been stable since.
In August of 2014 I received my best news in years from my BMB. For the first time in more than twenty-five years during the BMB they pulled a lot of liquid from my bone marrow and it was instantly on the very first try. I have the same person do my BMB at Stanford and even she was surprised. I became a bit emotional as I felt the liquid drip to my back as she withdrew the needle. I knew without seeing any test results this must be good news and it was. My fibrosis had not gotten worse and I was stable.
From the fall of 2015 to today, not a single blast has shown up in my CBC Slide. I also understand that all of the good news could end at any time for me. That is the nature of this disease.
I must add my heart breaks when I hear about young PV patients who upon diagnosis are automatically put on Hydrea or Jakafi without any attempt to educate the patient about IFN. I firmly believe that any doctor that refuses to offer IFN as a true first option is not doing his or her job.
I would like to see a day where Hydrea is discontinued as the first line of treatment unless there is an issue with a patient not tolerating IFN. While many of us are holding out hope for a cure we often forget that for many IFN patients have a new lease on life and the drug will extend their lives by decades.
Since there are enough MPN patients out there successfully using IFN the time has come for doctors to look beyond their own bias and provide every MPN patient will all options. Doctors and patients must step away from the horrible pharmaceutical propaganda machine and do what’s best for the patient, not what companies like Incyte are asking them to do.
As MPN patients we are all the guardians of our lives. It’s an individual’s decision what drug to be on and IFN is clearly a drug most, if not all PV patients and many early MF patients should be taking. We must remain vocal patient advocates and demand that our doctors provide us with every option available and to prevent us being continually forced into the Hydrea option.
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