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This could save your life

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This may save your life

Jeremy Smith

Jeremy Smith

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.

Please reach out to me with your comments here or at jeremysmith59@me.com

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Comments on: "This could save your life" (21)

  1. Jeanette calatino Murphy said:

    WOW, i was dx’d also in 1989. Went straight on hydrea. Was so uneducated on this disease. 1992, went on Anagrilide for 17yrs. 2010 back on hydrea. 2016, spleen and liver enlarged. Severe bone pain. Started Jakafi. Terrible med for me, so back on hydrea. Asked for second opinion. Went to dr Catriona Jamison in SanDiego. A whole bunch of blood work, bmb. 3hr appointment. She put me on pegasy straight away. Now have early MF. I strongly agree, INF should be the drug used. Thank you. I hope and pray for all of us.

  2. Ann Zielinski said:

    Jeremy: Thank you for your article. I remember we had discussions about HU years ago. I kept on phlebotomy and aspirin only until 12 years with PV. I started seeing a few blasts (scared the hell out of me) but no fibrosis on BMB. My spleen was so big I couldn’t bend over to garden (a passion). Luckily, my local doc had been keeping up on the literature and asked “do you want Jakafi or Pegasys. Having read up on the two I chose Pegasys and my insurance is covering it. The blasts disappeared immediately. All counts are normalized except RBC and my spleen gets smaller every year. Starting my 4th year now. Spleen is 9 cm under rib. I stared at 22 cm. I am very pleased with no side effects after the first 6 weeks.

  3. Hi Jeremy, great article thank you. I have been on Pegasys interferon for 14 months with great results. I was initially diagnosed with ET in 2014, and that changed to PV in 2015 (turns out I had masked PV all along). My local haemo and an MPN expert here in the UK both recommended interferon as the preferred treatment for me – I was very fortunate! I started at 90mcg, and have now reduced to 45mcg. HCT is normal and platelets almost in normal range (430, down from 1.5 million). No major side effects, fortunately, the disease and treatment have not prevented me from continuing my career. At 90mcg I experienced some hair loss/frizziness, fatigue, dry/sore mouth, and a cotton wool spot in one eye. At 45mcg, these are diminishing. Pegasys has been a life saver for me. For older patients, unlikely to progress in their lifetime, I can see why HU might be a good option. But I was 50 at diagnosis so plenty of time to progress, in which case interferon is the best option. Thank you for advocating for interferon awareness, I write about my positive experience as well in the various Facebook MPN sites. X

  4. Angela Zylka said:

    Hi Jeremy!
    How costly is this drug,& how is it administered?
    Thanks, Angela

  5. Its the old ‘wait and see’ approach that results in failure – for the patient.

    Agree with Jeremy 100%.

    HU does nothing in stalling your disease progression, it is simple medical negligence not to at least consider IFN.

    Yes it costs more and involves more administration than HU but that is no reason for not considering it.

    There are a subset of patients who cannot tolerate it – for sure – thats where good medicine comes in, best practice.

    On the plus side it has a great track record on symptom relief, plus a very good chance of remission, and slowing down or stopping the progress to MF.

    Jakafi has only compared against ‘BAT’ best available therapy, guess what that was – HU. It was never compared against IFN.

    As Jeremy says, HU crudely controls your blood counts, but the fire raging in your bone marrow is not being tackled.

    IFN is the drug that can deal with that fire, the underlying disease, and bring in under a measure of control.

    • In general, I strongly agree that interferon is the best single drug we have available to us… but it’s by no means a universal panacea. There is a clear need for hydroxyurea to calm down counts quickly…and in some cases maintain balanced counts over time. No doubt Jakafi can reduce swollen spleen and improve QOL in MF. And although the Jakafi PV trials were badly designed (most patients on the comparator arm were required to have failed HU in order to enter the trial and were nevertheless given HU by the investigators as Best Available Therapy) there have been reports of palliation of PV symptoms. Even anagrelide, for all its potential devastating side effects, is the preferred drug to rapidly reduce platelet levels in ET. We have a limited palette available to us, but it’s past time forinterferon to be accorded its appropriate place as a front line therapy. Personally, however, I believe you’re flat out wrong about Watch & Wait. I’ve been on it for nearly 20 years and have avoided the cytotoxicity of some drugs and the side effects of all drugs. I DON’T recommend W&W for everyone but in my case it has made sense.

      • There is a difference between wait and see and watch and wait.

        Wait and see is a passive approach, do nothing or the minimum.

        Watch and wait means a proactive approach, keeping a vigilant eye on the condition and acting accordingly..
        There needs to be clearly defined protoccols here , patient dependent of course including BMB, symptoms etc. careful consideration of therapy. etc.

        Given the course of PV to MF is a median 8-10years from diagnosis it is important to consider this in the assessment of BMB and symptoms. The timing of BMB assessments is critical and needs agreement. There is no room for complacency in myeloproliferative cancers,

        The annual MOT of your car includes among other tests a brake test and check. You wouldn’t wait until your brakes failed until you checked your brake pads. Why would you do that with your body – But that is what happens with MP cancers.

      • You’re right about vigilance, of course, but a couple of caveats.

        (1) Bone marrow biopsies are invasive, uncomfortable and expensive. I’ve had five and only one — the one used to clarify my MF diagnosis — was necessary. I think it should not be a routine procedure — like an oil change — but something resorted to when a therapeutic path needs to be determined. And even then, an examn, CBC and blood smear can usually tell us what we need to know since our medical options are so limited.

        (2) And the idea of anticipating 8 to 10 years from dx of PV to onset of MF is simply not true. Depending on the nature of the disease, condition of the patient, co-morbidities and maybe even a retrograde planet or two, the progress of our MPNs cannot be known with any certainty. Look around the FB pages at all the long-term ET, PV and MF patients defying that outcome. We don’t need to scare one another — or suffer unnecessary pain — based on generic data.

  6. Check here https://clinicaltrials.gov/ct2/show/NCT01949805.
    It could be approved by FDA in Q4 2017.

  7. Elizabeth Goldstein said:

    Jeremy, your article is exactly why I fought for Pegasys, why I stayed on it so long and I agree with everything you said. Unfortunately, my body didn’t cooperate, but someone has to be in the 20-30% group of those intolerant to Pegasys. The ironic thing for me is that after all the terrible side effects I experienced, I have been on aspirin only since January and as of 10/13, my platelets were 472. So, after only 18 months on Pegasys, I am in some kind of remission. I am hoping the new studies will find out why some of us don’t tolerate IF and can then find a way to produce a form that eliminates whatever our bodies find intolerable. That might not happen in my life time, but who knows?

  8. Arnie McConnell said:

    Hey, Jeremy.

    Just finished your very useful article. Read all three excellent responses, in fact.

    Like lots of other people, particularly nervous ones, I tend to seek out the commentary with which I agree.

    (I should be listening to Trump, so I can be fair and balanced???? Please.)

    Good luck.

    Loved your reference to the Epi Pen. It should be a wake-up call. Should.

    What a disgrace. What a symptom.

    Carry on. We’re rootin’ for ya.

  9. Paul Cherubini said:

    I agree with everything Jeremy has said. I was diagnosed with PV in Nov. 2015 and was prescribed Hydrea. Then in Feb 2015 I asked my hematologist about Pegasys and he told me it would make my PV get worse instead of better! https://youtu.be/xJlHwPN_W_Y I then sought out a Pegasys friendly hematologist and asked Jeremy if Dr. David Leibowitz in Palo Alto was a good doctor to seek out. Jeremy said he had heard good things about Leibowitz and he was right because Leibowitz quickly prescribed Pegasys for me. After 5 months on Pegasys I’m feeling much better (no more dizziness, occular migraines, night sweats) and my counts are normalizing. Plus Pegasys gives me hope of avoiding progression to myelofibrosis for many years until a real cure for PV (besides risky stem cell transplant) is found.

  10. Hi Diane, thank you for sharing your experience. What is the worst side effects
    you are experiencing from IFN?

  11. Thank you, Jeremy, for your passionate article. I was originally diagnosed with ET about 11 years ago. My MPN then progressed to PV. The original strategy was aspirin and phlebotomies, as I’m otherwise physically active and healthy, and I have never experienced any clots or other significant symptoms. Fortunately, I have a doctor who doesn’t believe that waiting for something bad to happen makes sense, so when my blood counts began moving toward more alarming levels, we discussed medication options. I’d done my own extensive research and asked that the first step be pegylated interferon alfa-2a, as there was an outside chance that the drug would actually put my disease into some form of remission in addition to keeping my blood numbers in check. For me, the results after one year on PegInfereon have been fantastic. After a bit of tinkering with dosage, all my blood tests were normal within 6 months and have remained so as I incrementally step down my dosage. I think my success with my doctor was, in part, that I did my research prior to asking that he prescribe interferon. I was well prepared to back up my request and have been proactive in suggesting when it might be time to step down dosage. (I also am thankful that I am able to tolerate the medication and have a doctor who doesn’t immediately dismiss my opinions.) As you said, “As MPN patients we are all the guardians of our lives.”

  12. Jeremy Smith said:

    Thank you Bonnie. Joe will be missed but never forgotten

  13. Jeremy Smith said:

    Margarita. I am not a Doctor and therefore I cannot make a medical recommendation. Your husband’s Doctor may have a valid reason behind his decision. However getting a second opinion no matter who the Doctor is not an unreasonable decision. I would try and see Dr.Silver if you can since he’s based in NYC. Wish you and your husband the very best

  14. Bonnie Kaye Evans said:

    Bravo Jeremy. I applaud your enthusiastic advocacy since I agree with you that all the other drugs do nothing to control the fibrosis of the marrow, Back in 1997 Joe first tried intron-A but after 6 months he quit it for HU since he hated feeling sick like a flu bug all the time. HIndsight is 20/20 where I now believe his dosage was too high to begin with. HU and plebes controlled his counts but he progressed into MF in 2008. The local hematologist referred us to Dr V at MDACC to get on the INCYTE trial where Joe was number 72. Joe was estactic with the INCYTE (JAKAFI) results that dramatically improved his quality of life. It was all he wanted. Alas, in 2010 Joe was diagnosed with Mantle Cell Lymphoma which I feel was caused by 11 years use of HU. Joe had an intense high chemo for fight it but it was quite a 10 month battle to get him in remission. We consisdered it a miracle. His MF finally battered his poor body where his organs went into failure and he passed away 8/31/2015. No regrets from the both of us since we made the right decision for him at that particular time.

  15. Thank you so much Jeremy
    I just spoke to hematology doctor since my husband is on Hydrea for 7 years. I have asked him about others drugs besides Hydrea. He said ‘ not recommended’. And my husband trusts his doctor.
    He is very famous in NY.
    What should we do?

    • Jeremy Smith said:

      Margarita. I am not a Doctor and therefore I cannot make a medical recommendation. Your husband’s Doctor may have a valid reason behind his decision. However getting a second opinion no matter who the Doctor is not an unreasonable decision. I would try and see Dr.Silver if you can since he’s based in NYC. Wish you and your husband the very best

    • Paula Wolfe said:

      I would want to know the reason WHY the doctor simply dismissed INF with a simple “not recommended” You deserve an explanation. I second a second opinion. Pegasys has worked wonders for me and I don’t understand why doctors are reluctant to even try Pegasys.

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