I’m so sorry to hear you’re going through tthis. HU did not take away my night sweats. It reduced the number of occurrences. Pegasys took away my night sweats. Now to assist in fixing your issue. I have found that regular hematologists aren’t aware, don’t believe the severity of the symptoms, and do not routinely take the courses offered on us for their continuing education courses. Some do. Seek a specialist. Not everyone on the specialist list for MPN’s will believe the same. Ask the dr you currently see for reputable reading materials on us as you’re interested in learning more about your cancer. Read them. Bc there is something in one of them saying we have these symptoms. Hey, I was reading something from that site you gave me. Can you take a look at it bc it mentions quite a few of my symptoms. I can pretty much guarantee they will say from your labs you shouldn’t be experiencing those symptoms. Head them off. Let them know you pay them to alleviate your symptom burden bc they can’t cure your cancer. So ether provide the services I pay you for or your services will no longer be required. Fulfill the oath you took or I’m placing a board complaint on your license. They don’t know which ones of us will advance or not. Other than certain markers making like different mutations more likely than others to advance. This cancer doesn’t always react the same. I have had events and never close to a million. Drs literally tell me oh you were probably over a million at the time. I tell them to prove that to me. Bc I can provide labs for over a decade that say differently. Not to mention my labs were taken during the events. Do not accept their word as gospel just bc there is an MD behind their name. When you advocate for yourself, you advocate for all of us. It’s difficult to change a mindset. That’s what we are fighting from the very individuals we pay to help us. So when you hire someone to do a job and it’s not done to your satisfaction, what do you say to them. What would your boss say to you?

Please find a doctor who will not dismiss you! I stopped hydroxy and found a doctor who heard me , my symptoms were not letting me live my best life ! I started jakafi it had been the best month I had in a year ! Stay strong and don’t give up !

Babyrize, thank you so much!

Well said , we need to be our own advocates for ourselves and each other 😀

Yes, wish Dr.would listen or ask questions. A support group would be nice at the hospital.