You bring up a great point there as far as the durability goes, because I have run into a few conversations with folks where there is a concern or some hesitancy to utilize ruxolitinib in the polycythemia vera setting due to concern of using their last gun. “Oh, if I utilize this now, then I do not have anything left to use.” A disease that is usually driven solely by that JAK2 mutation and through the JAK-STAT pathway is remarkably responsive to ruxolitinib, and durably so. Some of the reasons we see patients come off ruxolitinib for myelofibrosis after 3 years really do not apply to our patients with polycythemia vera. It is not something that is worth holding off on for a patient who certainly could benefit from it. »
Interesting conversation about HU and RUX. Would be even better if they added PEG to that conversation. Would also be great to have a detailed review of the relative toxicities/adverse effects of each of these options vs the benefits each option offers.
I would also hope for a realistic discussion about the impact that cost has on formularies and the ability of patients to access these meds. Doctors are under pressure to save healthcare systems money and RUX is the most expensive of each of these options. RUX = $14,000-27,000/month (60 caps). PEG = $4,500-4,800/month (4 injections). HU = $86/month (60 caps). Data obtained from epocrates.com/GoodRx.com There are healthcare systems where patients cannot access RUX purely because of the cost regardless of whether it is the medication that is most efficacious. There are systems that make it more difficult to access PEG than HU, especially for older patients. I expect this would be an entire presentation all of its own to look at how healthcare systems actually work and don't work to provide optimal outcomes for patients with MPNs.
Anyway, thanks for posting this very interesting and informative discussion.
Hunter you advocate for an MPN doctor and I have to tell you these doctors are as night and day. Dr. Andrew Kuydendall is my doctor and I trust him even when I may question what he says. He is really kind/patient/easy to talk to.
Another thing I wanted to say is the coast of medications. It's hard to believe how outrageously expensive they are. At what point does a medication coast actually come down?
I am glad to hear you found a good doc to consult with for your MPN care. If Dr. Kuydendall is not already on the list, please be sure to add to this list mpnforum.com/list-hem./
It is very important to find docs who have the KSAs to provide optimal care for MPNs. It is equally important to find docs who listen to their patients and answer questions. The best physicians combine the knowledge of the science of medicine with skill in the art of healing. Physicals who do both are a true blessing for their patients. I am very fortunate to have local hematologist and a consulting MPN Specialist who are both wonderful physicians. Having experienced less than optimal care in the past, these are the only types pf docs I allow to be on my care team.
Thanks for posting. Was this the entire talk? Because as hunter says it was on HU/Rux but it didn't evaluate it's effect and what Rux does to warrant considering it. But it's good to know these discussions are happening. The ideas eventually filter down to us.
Very interesting. As hunter5582 says, costs must play a big part -and it would be good to get a clear comparison with interferon -but clearly, those take years
Dr kuykendall is my doctor and I have run the thought of adding jakafi to my pegasys treatment, and he was open but said it would get pushback from my insurer and once started would be for the long haul. Apparently it would immediately correct blood counts and shrink the spleen. However I only have JAK2 mutation right now and no secondary mutations. Holding off for now but may add it depending on the response I get from pegasys over the next year or so.
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Is it polycythemia vera?
