Science & Medicine

The MPN Life by Jeremy Smith


When I was first diagnosed with Polycythemia Vera in 1989 the standard treatment had just begin to shift away from letting MPN patients be watched closely and treated with phlebotomies only to prescribing Hydrea in the event something like a blot clot occurred. It was rare at this time for a Doctor to even mention INFN as an option for treatment with PV. Early on in my treatment I developed a clot in my left toe and was prescribed Hydrea immediately.

When I went on the support lists, especially in the mid 1990’s, there was a very vocal group of MPN Patients and list owners who had become vocal proponents of using INFN, not Hydrea, for the treatment of MPN patients.

Pro-Hydrea and Pro-INFN camps duked it out regarding the correct drug choice for PV patients.  And by no means did list owners stay out of the fray; in fact, they often fed the fire. As I wrote in my 2011 MPN Forum article  MPN Drug Wars” the Hydrea Camp and the Pegylated Interferon Camp exchanged heated words. Being a hydrea patient I took sides and felt I needed to speak out in favor of hydrea.

For 23 years I was an outspoken proponent of Hydrea for the treatment of Polycythemia Vera. During those 23 years I held to my convictions because my hematologist made a strong case to me that Hydrea was the only “real” choice for me.

When I presented INFN clinical studies to my hematologist during our appointments he would provide me with his medical views as to why I should stay the course and stick with Hydrea. Of course he was not the only hematologist who held this view. Many well-respected hematologists confirmed my hematologist’s position so I firmly took sides. And it was hard to argue with making changes when my quality of life was so good and most of the patients on the support lists suffered from strong side effects caused by the INFN.

Around 2009 I began reconsidering PEG INFN and was starting to push my hematologist for more information. I started wondering, if I did so well on Hydrea, how does my hematologist know I would not do even better on PEG INFN? His most often response was, “if you want me to make you sick I will.” With information presented to you in that way, why would I want to switch? Plus, he would always note Peg INFN’s inability to stop the progression of my disease .“The data is still out on that.” So he was always in the ‘No’ camp.

In 2010 I attended the MPN Foundation’s Bay Area Symposium held in San Mateo, California.  I asked the MPN panel why there appeared to be a West Coast bias in favor of Hydrea and an East Coast bias in favor of INFN. Why can’t the hematologists come to an agreement on whether  INFN stops the progression of the disease or not ? As a PV patient I wanted to know which drug really was the best for me.

Dr. Tefferi quickly answered with his now famous response comparing the battle between the hematologists to that which existed between West Coast Rapper Tupac Shakur and East Coast rapper Christopher “Notorious B.I.G.” Wallace. He concluded with an absolute denial of INFN as an effective first line treatment for PV.

After I left this symposium it confirmed for me once again exactly what I wanted to believe. My hematologist had me on the right medication and I was correct in standing up for Hydrea as a treatment on the support lists.

At the time I did not realize I had developed a bias to any options rejected by my hematologist. I stuck by my hematologist and went about my life believing I had made the correct decision. It wasn’t until my recent diagnosis confirming my PV had transitioned to myelofibrosis that I began to question my decisions. Why had I become so attached to my drug choice when I knew all MPN’s are extremely complicated and it’s difficult to predict their outcomes?  On my own, I decided to quit Hydrea.

In late July during my appointment with my hematologist we discussed pharmaceutical options and he brought up the possibility of going back on HydreaThis time I was prepared. I asked him. “If the Hydrea was suppressing my bone marrow, why would did it make sense to go back? And would it not make more sense to switch to PEG-INFN now?” I could tell at this point he was done with me on the Hydrea option and he agreed to get me started on PEG-INFN.

When I announced in August on MPN Forum’s Facebook site I was making the switch from Hydrea to Peg-INFN I was surprised to receive some strongly worded email communications from MPN Community Members attempting to convince me not leave Hydrea.  It was as if I had just left the Boston Red Sox to play for the New York Yankees. Some sent clinical data and quotes from other well-respected hematologists challenging my decision. But this time my head was in a different place, a much better place and I was now firmly committed to keeping all of my options open. For the first time I was no longer making my medical decisions based from my own Hydrea-skewed point of view.

Thanks to some long conversations with Zhen I was now focused on hearing out the opinions of other hematologists to help explore and clarify my options. I went to see Dr. Mesa at the Mayo Clinic in Scottsdale and in a few weeks I will be seeing Dr. Silver, the INFN Guru if you will, at Weil-Cornell in NYC.

The walls I had put up preventing me from being open to alternative treatments have come crashing down with a loud thud. No longer will Stanford be my sole source for hematological care.

Many patients become attached to their Doctor’s treatment plan like I did and become resistent to any outside information, especially information that might contradict our current drug regime. Do not repeat the mistakes I made. Be open to every drug available and never marry yourself to one treatment. If we have learned anything, the complexity of our diseases requires all of us to reach out to more resources. It’s the right way to start your treatment and to continue monitoring it throughout your life.  To those of you who continue to write me stating I have made the wrong decision in switching from Hydrea to Peg-INFN, I say open up your minds and look beyond what you cannot or choose not to see.

The most important decision we make is not the drug we start with. It’s making sure we consider the benefits other drugs may offer us as we age and our diseases progress. The drug that is working today may not be the drug you should be on five years from now. Hematologists unanimously agree on one thing. MPN’s are complex, tricky diseases to treat and what works for one person may not work at all for another person in spite of having the same disease.

I believe within five years Peg-INFN will become the standard first line treatment for most hematologists and patients. Hydrea will be shifted to a second choice option reserved for those patients who do not tolerate Peg-INFN well.

When I look back at my 23 plus years of MPN disease experience I have come to better understand how our bone marrow changes over the course of our disease. Today it makes more sense to me that I should have forced my hematologists to change from Hydrea to Peg-INFN as soon as the first signs of increased fibrosis showed up on my BMB slide.  I should have forced my hematologists to put me on PEG-INFN or found another hematologist.

PEG-INFN is not going to work for everyone just like Hydrea does not work for everyone. At some point you have to seriously ask yourself is the drug I am taking today giving me the best options for tomorrow? I did not ask myself that question earlier in my life. I wish I had. I hope you do.

There is a great quote Steve Jobs liked to use from Hockey great Wayne Gretzky I have chosen to close my article with.  I think it especially appropriate for this topic.

“I skate to where the puck is going to be. Not where it has been.”

Take me back to the Contents

© Jeremy Smith and, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Jeremy Smith and with appropriate and specific direction to the original content.

Comments on: "The MPN Life by Jeremy Smith" (4)

  1. jsandresen1 said:

    I am not sure why some people take Peg and Hydrea. I know INFN takes a while to work maybe that has something to do with. I think it’s important to focus on two facts. Hydrea suppresses the bone marrow and has little to no impact on the Jak2. Over time ten years or more taking Hydrea can do damage. And yes you can go back to Hydrea if PEG does not work. Remember PEG can take six months or more to fully work. It’s not like Hydrea.

  2. Thank you Jeremy for sharing your experiences and information with us. I have been thinking of changing from HU to PEG but am a little nervous about the side effects, one being depression. If PEG does not work, is it possible to go back on HU. Also, some people take PEG along with HU, why is this?

  3. Hi Barb, Thank you glad you enjoyed the article. I have a 45 mile ride tomorrow.

  4. Barbara Kurtz said:

    You have certainly opened my mind to change and other possibilities. As I have told you before, I appreciate you sharing your attitude and your decision to change with us. I also appreciate you sharing your experience with the new medication to date. Keep on cycling.

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