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New to Pegasys for ET - advice please!
Blood Cancers & Disorders | Last Active: Feb 5 8:49pm | Replies (20)Comment receiving replies
Lourdene, I'm in an almost identical position to you, having had high platelets for decades but just this fall diagnosed with JAK 2. I've been stalling, as I am fairly symptom free at present, and I wanted a Christmas and birthday season without the weight of deciding or stress of experiencing new drugs. A recent second opinion also convinced me that I had to take one of the less than perfect "medications" for the condition. The Mayo doctor I saw said it might be a good idea, since ingesting chemo products repels me, to try interferon. I will look into the cost and see if my local doc is amenable. The Mayo doc said that interferon has the advantage of disrupting JAK2's disruption in the marrow, as well as stopping further disease progression, if taken at moderate doses at least two years past reaching a maintenance ideal point for both hemocrit and platelets. My understanding is that Interferon will work more slowly, but that slow and steady is an advantage if you can hack the side effects. I will certainly try to keep up with your posts. I'll add my experience in the new year.
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Update! I started on Besremi in 2023, being injected in the clinic. I'm on Medicare Traditional in the US. After a few months my liver enzymes went too high as my HCT and platelets improved. (I seem to get fast reactions to this drug.) I went off the drug when I found out the clinic was not supposed to be injecting since Medicare said Besremi should be patient-injected. I had to maneuver politely but firmly to get a $120,000 bill off my shoulders, as I had accepted it understanding Medicare B and G would cover it in the clinic setting. Ultimately, the clinic kindly swallowed the expense, as it was their mistake. All last summer, as my platelets climbed back up to over a million, I worked on getting the manufacturer's financial aide. Savings and investments you can have, but not sizeable regular income. I finally got accepted in the fall, and they paid for the drug through now, then passed it back to my doctor, who passed it on to Onco360. They or one of their connected offices called me to ask more financial questions. Now through them I'm covered for the year by a set of foundations/grants that help with expensive cancer drugs. I think my Plan D would have left me with $3300 due each year. I wish a fairer, more progressive tax system was in place to make universal healthcare an option for all of us here. In the meantime we have to negotiate the minefield (and mindfield!) of money while we endure the vicissitudes of our conditions.
The drug itself I remain very suspicious of, but as I said, my body reacts quickly to its work on the blood. My HCT remains in good zone, and my platelets quickly at first and now more slowly headed back to not far over the top acceptable zone. The doctor says when my levels stabilize for a few months we can consider lessening the 100 mcg dose. I will not go over the 100 mark as my liver was unhappy at 250-300 mcg. I hope to halve the dose or go down to once a month. My quality of life is very uneven with the drug and the PV. Insomnia, stomach disorder, and post nasal drip plague me, and the tiredness, while not stopping basic chores and blessings of life, stops me from pushing to do work that is meaningful and fulfilling but requires more vitality. What to blame for all this is a bit of a mystery. I no longer get visual migraines, but have had one heart pounding episode. (Stress test coming up soon.)