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How Often Are The People With PV Seeing Their Oncologist?

How Often Are The People With PV Seeing Their Oncologist?

My husband was diagnosed last Aug 2020 and we have seen his Oncologist once. Covid has thrown a wrench in this but when I asked him how often we should expect office visits he said he typically sees his PV patients once a year. I'm very uncomfortable with that.
Said that the blood work/labs show him what he needs.

A myMPNteam Member said:

I changed doctors after my first oncologist put me on iron for anemia and waited three months to see me. By then my hematocrit was in the high 50's. He took me off the iron and I had several phlebotomies to bring the hct down. I changed oncologists and was being seen monthly until hydroxyurea stabilized my platelets and hematocrit. Now I go in every six weeks. I don't think annual visits is adequate--things change!

posted about 1 month ago
A myMPNteam Member said:

Agreed! Find a doctor you can trust.

posted 2 months ago
A myMPNteam Member said:

The doc can do phone visits to talk to you and many labs/offices have portals you can pull up the results to view before the phone visit. Just be sure to tell the doc symptoms no matter how insignificant they might seem. My husband had MF and we were told what to watch for. His hematologist moved and the new one called us to introduce herself. When my husband told her he was experiencing recurring gout and I told her he'd fallen once recently she became concerned. The pain I was expecting was abdominal because of the very enlarged spleen, the "gout" he was experiencing was actually a progression of his MF and he had to be hospitalized the weekend before his appt. The ER his doctor used turned him away saying they weren't a pain clinic, so I had to take him to a hospital that didn't know him. I had all his previous labs printed in a file for the to see.
It was awful and completely unnecessary. Be prepared and have your info available for the potential new people to see in case of emergency.

posted 3 months ago
A myMPNteam Member said:

its true the blood shows a lot but talking to him and discussing your symptoms is very important. Find another Doc!

posted 3 months ago
A myMPNteam Member said:

I do too, can't believe a Dr would ignore such a serious matter. Things change weekly withthis andthe Dr needs to be on top, find another

posted 3 months ago
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