What it took to get Interferon…
By Jeremy Smith
In 1989 I was diagnosed with Polycythemia Vera, not two words that easily roll off the tongue. I found myself constantly having to spell Polycythemia for just about anyone I needed to explain my disease to. Even when I spoke the word I often had to repeat it several times so the person on the other end of the conversation got what I was saying. In 1989 the medical community was in transition regarding first line treatments for PV. It was the beginning of the end of phlebotomies alone. Hydrea with phlebotomies was being ushered in and was rapidly becoming as the standard treatment for PV.
There were of course hematologists prescribing INF but there were such extreme side effects with INF use most hematologists would have nothing to do with INF. Many hematologists branded INF as ineffective and dangerous with unproven clinical benefits. By condemning INF and scaring those patients considering INF hematologist have done the entire MPN a great disservice that we still deal with some twenty-five plus years later. We have reached a point in the history of MPN treatment that hematologists like Dr. Tefferi,who still refuse to prescribe INF wake up to its benefits. It’s time for Doctors with long held biases to check them and their egos at the door. It’s our lives that are at stake not theirs.
From 1989 through most of 2012 I believed Hydrea was doing its job by keeping my platelets and red cells in check. Most of the time my CBC tests show excellent HCT and Hemoglobin results and my platelets were always around 300K to 500K. By late 2010 I no longer need phlebotomies and we all thought that was excellent. What I did not realize at the time and this I believe is the most common mistake Hydrea patients and Hematologists make. Since the CBC lab tests showed numbers that were exactly where our Hematologists want us to be we develop a false sense of confidence. How many times have we read a Hydrea patient post “my numbers look great?” I know I posted that often. Mean time this heinous disease is continuing on its aggressive journey consuming our marrow tearing up our bodies with nothing in its path to slow it down. And this is one the problem with Hydrea use. Hydrea does nothing to slow down the progression of our diseases. Yes, you do feel better but the Hydrea only disguises what’s really going on.
Knowledge is power if you know what to do with it
The knowledge gained from Internet support groups like MPNforum are invaluable and in some cases life saving. The Facebook MPN Groups are a rich source for exchanging ideas in real time and provides us with the type of in-depth information we need to better understand our diseases and available treatments.
In 2011 after fighting my PV for twenty-two plus years I noticed for the first time my red cell counts were starting to slide. And like many hematologists Dr. Schrier was still against trying INF when I suggested it to him one more time. There were no MPN Patients at Stanford on INF so the “company” line remained the same, “No clinical data to support INF being any better than hydrea.”
As we started 2012 my counts continued to drop and based on the INF data I was forwarded by people in the MPN Community. I began to believe it was time to consider switching away from Hydrea. And here is the other challenge we face when making tough medical decisions. We sometimes view Doctors as saviors. I struggled with arguing with my Doctor and demanding we change course. This is an important point because it’s the crux of the problem. If we do not challenge our Doctors where appropriate we may miss out on a drug that is better for us than the drug they are prescribing. Lets admit it sometimes Doctors are wrong. Especially when they are bias to using another drug. When I met with Dr. Silver in October of 2012 he talked with me about the importance of being your own patient advocate and challenging a doctors viewpoint if we disagree.
In late June Dr. Schrier decided it was time for another BMB. I had a hunch what the results would be. July 2nd 2012 my hunch was correct my PV had jumped the firewall and we were in a new more dangerous place, the World of Myelofibrosis. At first I was shocked and deeply saddened by this news but quickly my emotions turned to anger. I was angry with myself for not making the switch to INF back in 2010 when the first hints of Myelofibrosis were emerging. I was angry with my doctor for not listening to me regarding INF. The question I asked myself was what I could I do now? I had read the studies on INF but would I make my voice heard now?
By the time my September appointment at Stanford rolled around I had all of my answers to my own questions. Having immersed myself in the INF clinical data and talking with other folks at our Facebook MPN Forum. I did my research using www.MPNforum.com; spoke with Zhen and other people I had met over my years on other MPN support sites. I read the clinical data on INF from Silver and Hasselbalch at MPN Forum and prepared for this appointment like I was heading into a Presidential Candidate Debate.
The first thing I asked Dr. Schrier was what his treatment plan was. We discussed going off of Hydrea, which I agreed with. Then he spoke of Jakafi and I was not ready for that plus it does not slow the disease down. Then he suggested I meet with the bone marrow transplant clinic and find a donor. I agreed to that. I brought up the subject of INF. I pointed out it’s the only drug that has shown in some cases to slow down PV or MF and in some cases INF reduced the patients fibrosis. I explained that I am committed to trying INF. He smiled and agreed to have a prescription written and while it would take some time to get through the approval process with the Insurance Company, which included turndowns..
Hope finally arrives
I started INF at the end of September 2012 becoming the first MPN patient at Stanford to be treated with INF for MF. When I arrived at Stanford’s Infusion Center for my first INF injection I received a long list of the probable side effects of INF from the nurses. We started out with a low dose of 45 MCGs and as they injected I was braced for anything but nothing happened. Three weeks later after my third injection I did have my first side effects, which were intense itching that lasted for about ten minutes in the morning and then faded away. This went on for about three weeks and then it went away for good. Thirty days later we went to 80 MCG’s and then sixty days later 135 MCG’s. No side effects at all.
One issue I have with Stanford, and this may have changed over time, is they will not let their patients self-inject INF. This raises a red flag for the insurance companies. Eventually my insurance company, Anthem Blue Cross said enough you have to self inject. I agreed with them on this because Stanford changes and extra $2K just to have two nurses in their Infusion Center monitor you and inject you with INF. These costs are on top of the costs for the drug and syringes. When all is said and done it costs more than $5K for one single injection, which are very high.
I was do not want to mislead anyone with this article from July 2nd through most of October I was a mental basket case. Without the support of the MPN community, my wife and kids, and a long list of friends and healthcare professionals, it would have been even more difficult to make the change to INF and get through all of this.
At Zhen’s urging, I flew to NYC in late October 2012 to meet with long time INF expert Dr. Silver. Dr. Silver is an amazing man with a real passion for medicine; most importantly he probably has more experience with INF than anyone else. Dr. Silver provided me with the knowledge I needed to calm down and have hope. Dr. Silver helped with my concerns regarding my white cells, which had been around 8K for a long time but now were all over the place. First 12K then 15K and then 19K over a course of eight months, which concerned me but Dr. Silver put me at ease by explaining how INF works. Not knowing that INF can take a year before you begin to see results was reassuring. When I saw Dr. Mesa later in the year, not only at the urging of Zhen he actually helped set up the appointment, Dr. Mesa told me the same thing. One of Dr. Silver’s concerns with my case is all of the phlebotomies. Which had caused me to be anemic and he said this makes it tough to bring the red cells back to where they should be.
Having my team of Doctors in place has made my life much easier. For the first time I felt like I was in charge! From now on all medical decisions would be my own. I have changed how I view this process of working with Doctors. I now view Doctors as expert consultants and partners in the process that will advise me on my options but the final decisions are mine not theirs. This empowered me to bring on Doctor’s Richard Silver and Ruben Mesa for additional consulting as well and I now have a team working with me.
When Stanford recommends dosage increase I run it by the entire team, which makes my decisions much easier. I have also brought on Dr. Robles, a local hematologist at Diablo Valley Oncology who writes my INF prescriptions. This came at the suggestion of Dr. Schrier since Stanford forces me to go to the Infusion Center for INF which Anthem Blue Cross won’t pay for.
Today my Doctors now consider me to be stable and have for about ten months. Late last year my INF was dropped from 135MCG to 90MCG because my white cells dropped to 3K. All four Doctors believed it was due to the INF working well and the dosage needed to be reduced. My WBC is consistently in the 6K range and my platelets range from 325K to 386K all considered normal. My HGB is between 9 and 12 most of the time and my HCT is between 29 and 33. The Doctors believe this still a reflection of decade’s use of Hydrea and Phlebotomies. My spleen has been reduced by 60% over a one-year period and I hardly feel now. All of my Doctors were surprised at how fast INF reduced my spleen size. It took just four months to reduce the size by 30%, which I was told was excellent but not to be expected due to INF’s slow working properties.
My day-to-day life is fantastic. I have no fatigue and my energy level is at an all time high since getting off of Hydrea and moving to INF. With my spleen reduced to manageable level I am back in the gym five days a week and started Spin class again to prepare to return to cycling this summer.
Some surprising benefits of INF have been the end of the MPN Fog so many patients report. The hair on my legs has grown back, not conducive to good cycling though. My brain functions seem to have changed as well. My memory is much sharper in business meetings and I do not zone out like I used to on Hydrea. While I was on Hydrea I always had the MPN Fog so many patients talk about and being rid of that has been an unexpected benefit of being on INF.
While the INF horror stories from the old days appear to be over I also recognize there are still many hematologists who will not prescribe INF. This change may have to come from patients standing up for what they believe in. As Dr. Silver mentioned during my visits with him early on Doctors were using very high doses of INF. Doctors have learned today how to treat patients with INF and it’s been very successful form of treatment since the switch.
My MPN Life experiences include twenty- two years on Hydrea and I tolerated it well. However Hydrea did nothing to slow down my PV and today I have MF. From my own personal experiences when asked I will continue to recommend everyone, especially for those of you who are younger to either start with INF or if you are on Hydrea move to INF.
I hope that the personal experiences I have shared with you have a meaningful impact on your lives. While we all await the next pharmaceutical breakthrough its time to seriously consider INF. For me so far it’s provide me with the hope I need to get back to living my new life with MF and have the confidence to live everyday with as much vigor and life as possible.
Take me back to the Contents
© Jeremy Smith and MPNforum.com, 2014. 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 MPNforum.com with appropriate and specific direction to the original content.