Anyone living with Essential Thrombocythemia with JAK2?

Are you all saying that we can take aspirin instead of the HU which I assume is the chemo pill? I am on 500mg and have been for 2 weeks. No change yet, but my count is over 1 million! I am scared to death and to make matters worse I got a call today that my Hemo Doctor is leaving the practice and they can no longer make appts for me! Now I have to start over and find a new doctor with no care until then!!

My daughter is 24 diagnosed last July with ETJak2. She has a number of symptoms the worst are joint hip pain, extreme fatigue and nausea ( she can’t eat anything). She started on pegasys and it was too hard on her body so she was moved to Besremi. We learned she is the second patient ever to be allergic to the drug and she can’t take it. So back to Pegasus which keeps her in bed for three days and unwell the rest of the week and then it is a rinse and repeat cycle. This is not sustainable. They will reduce her pegasys down to 22,5 I don’t have hopes that it will give her a much better life. She has been to Castro, endocrine and a physiatrist with little results. We need help and we are desperate

@dmcj
So sorry to hear about your daughter. You may have addressed this in a previous post but have they tried hydrea? Also, I am wondering, Why does she have to be on a platelet lowering medication? Many times if the platelets are under 1,500,000 and the patient has not had a blood clot and the patient is under 60 yo they just treat with aspirin. I am not a physician but I have had ET since 2002 so I have seen the many different protocols and medications used over a long period of time. I am in no way telling her not to take platelet lowering meds, I am just wondering. I got several consults from specialists in MPDs over the years - they never stated me on platelet lowering meds until I was 60yo and platelets over 1,500,000. But maybe the protocol has changed.

@lynnevb

She was having side effects. Bad headache. Itching Joint pain. Her numbers are only 580 Dr said start early for longevity did not recommended Hydro for her, Besremi she is allergic and Pegasus wkly leaves her with zero life.

My daughter is 24 diagnosed last July with ETJak2. She has a number of symptoms the worst are joint hip pain, extreme fatigue and nausea ( she can’t eat anything). She started on pegasys and it was too hard on her body so she was moved to Besremi. We learned she is the second patient ever to be allergic to the drug and she can’t take it. So back to Pegasus which keeps her in bed for three days and unwell the rest of the week and then it is a rinse and repeat cycle. This is not sustainable. They will reduce her pegasys down to 22,5 I don’t have hopes that it will give her a much better life. She has been to Castro, endocrine and a physiatrist with little results. We need help and we are desperate

Are you all saying that we can take aspirin instead of the HU which I assume is the chemo pill? I am on 500mg and have been for 2 weeks. No change yet, but my count is over 1 million! I am scared to death and to make matters worse I got a call today that my Hemo Doctor is leaving the practice and they can no longer make appts for me! Now I have to start over and find a new doctor with no care until then!!

@dmcj Oh damn I am so so sorry! You and your daughter have to keep fighting for relief. Have you tried the MPN forum on Reddit? Theres a couple of people on there that have done extensive research on this subject. Saying prayers!

@mdramsey48 thank you no, I have not done that. I didn’t even think that was a place for people spoke about MPS. I will definitely look into it. I really appreciate it.