Mark...I have ET / JAK 2 +. I do want to stress that I would never try to convince anyone on how they should care for their own body. Each one of us has to make our own decision.

I refuse to put any of these poisons in my body. I fired my hematologist who was adamant on putting me on some Big pharma drug. I take supplements, exercise daily, and eat A Mediterranean diet. I feel great at 82

I was diagnosed at age 52 with ET Jak 2 in 2008. My platelets were about 600 at the time I went to a local hematologist and he put me on hydroxyurea. I didn’t know much about it at all so I took the pills. I do regret starting so early because of all the side effects. Since then, I learned a lot. I’ve been on several drugs over the years. I also morphed into MF around 2016. Taking the pills is a very personal decision. If you’re feeling good, and your other numbers are still stable and in the normal range, you can probably hold off for a couple of years. Just make sure you continue to be monitored by your hematologist on a regular basis. I wish you the best.

I would agree that HU is not the optimal choice for many of us. I was intolerant of and refractory to HU. I have done much better on the interferons. Pegasys is one of the NCCN preferred medications for treating ET and PV. I would definitely say that it is a better drug based on my experience.

Pegasys is significantly more expensive ($4,200/month) compared to HU ($25.month). The good news is that if you are on Medicare, there will be a $2,000 annual cap on medications which will help make PEG more affordable.

You note having both JAK2 and MPL, booth of which are driver mutations. While this is theoretically possible, it would be extraordinarily rare. It would likely drive a higher symptom burden and affect disease complexity and outcome.

The fact that your mother also has ET and is doing well at age 88 is very good news. There is a strong link to genetics in determining longevity. Lifestyle, of course, also plays a huge role.

ET cannot be directly inherited as it is caused by an acquired mutation, most commonly JAK2v617f. There is evidence that the predisposition to acquiring the JAK2 mutation can be inherited, resulting in the clustering of MPNs in families - Familial MPNs. This is thought to be related to the JAK2 46/1 GGCC predisposing halkpotype.

Wishing you all the best.

Mark...some may call me rebellious or hard headed or not caring about my body. But I prayed about it and doing what I feel is right for me which is only taking a baby aspirin once a day. I walked out of my hematologist office one day when he was pressuring me to take the poisons. Sure I may get some fatigue and yes I do have some itching but for me I can live with that much better than taking the drugs that I am so against. I am now into my 16th year and most of that time I never put thought into the ET. I am determined not to let it ruin my life. Now I may just be one of the fortunate but I give God the glory and that is my story.. My platelets have never been under 650.