Getting nowhere with current Hematologist

If there are good hematologists / cancer specialists 6-8 hours away, it could be worth it to schedule an evaluation appointment and ask if follow up appointments could be managed by video virtual visits. They can order lab tests to be done in your local area and sent to them for monitoring when needed. Since this ET and other myloproliferative disorders are rare, some doctors may not have experience with treatment and other medical distinctions.

I have had many virtual appointments and they work out well.

I was diagnosed with PV about five years ago just after moving to another state. I had been with my internist for over 49 years and had great care from him and any MD he referred me to. He told me to find a hematologist quickly and not knowing anyone in my new state, I went with local cancer center. I got off on wrong foot when I refused a weigh in (that’s not the first time that’s happened). I was obese (still am after losing 67 lbs) so I don’t like the fairly obvious confirmation Im fat. Move on I say unless I need an anesthesiologist.
The hematologist there didn’t seem very interested in more than prescribing HU and it was obvious she did not like me asking questions. So, I asked my new neighbors on a neighborhood blog and found the doctor I have now.
I like her, she answered all my questions and she doubled dose of HU and I felt better and now I see her PA more often and she too listens and answers questions.
I know when my hematocrit hits 42. My legs tell me. I had a nurse at the Infusion Center tell me I didn’t need a phlebotomy because my hematocrit wasnt high enough! I told her to get the doctor on the phone. I had the phlebotomy. You have to advocate for yourself!
I complain of exhaustion, pain in my calves primarily. Things got better when I was referred to an internist who prescribed less TV news (really) and physical therapy. He too listened to me and didn’t make me feel like I was only having trouble because of my weight.
May I ask what complications have you in a wheelchair? Have you had PT?
I blame, maybe or maybe not appropriately, as much on my age as I do on the PV and HU. My nails and hair aren’t what they were, I have neuropathy in both feet (no, not diabetic), my eyes aren’t as good as they were, my grip isn’t as good as it was, but I know it’s more old age or it’s a major contributing factor.
Maybe it’s the PV/HU? This week my leg and knee are killing me. Ive diagnosed tendinitis and have taken some pain med and am icing it with pretty good results but I suppose it could be the PV…to me it doesn’t matter.
Everyone needs to vent now and again. And, my experience is that a lot of people like to share their ailments but shut down when it’s your turn to share yours. So, this forum works except for the lack of coffee and snacks while we “talk”😉
I have a lot of respect and affection for the doctors I had/have that listen to me and explain what they are thinking and why a particular course of treatment but I always remember something my mother used to say, with deference to doctors everywhere, “There’s a reason they call them PRACTICING physicians…”
Feel better and feel free to bellyache!

I was diagnosed with PV about five years ago just after moving to another state. I had been with my internist for over 49 years and had great care from him and any MD he referred me to. He told me to find a hematologist quickly and not knowing anyone in my new state, I went with local cancer center. I got off on wrong foot when I refused a weigh in (that’s not the first time that’s happened). I was obese (still am after losing 67 lbs) so I don’t like the fairly obvious confirmation Im fat. Move on I say unless I need an anesthesiologist.
The hematologist there didn’t seem very interested in more than prescribing HU and it was obvious she did not like me asking questions. So, I asked my new neighbors on a neighborhood blog and found the doctor I have now.
I like her, she answered all my questions and she doubled dose of HU and I felt better and now I see her PA more often and she too listens and answers questions.
I know when my hematocrit hits 42. My legs tell me. I had a nurse at the Infusion Center tell me I didn’t need a phlebotomy because my hematocrit wasnt high enough! I told her to get the doctor on the phone. I had the phlebotomy. You have to advocate for yourself!
I complain of exhaustion, pain in my calves primarily. Things got better when I was referred to an internist who prescribed less TV news (really) and physical therapy. He too listened to me and didn’t make me feel like I was only having trouble because of my weight.
May I ask what complications have you in a wheelchair? Have you had PT?
I blame, maybe or maybe not appropriately, as much on my age as I do on the PV and HU. My nails and hair aren’t what they were, I have neuropathy in both feet (no, not diabetic), my eyes aren’t as good as they were, my grip isn’t as good as it was, but I know it’s more old age or it’s a major contributing factor.
Maybe it’s the PV/HU? This week my leg and knee are killing me. Ive diagnosed tendinitis and have taken some pain med and am icing it with pretty good results but I suppose it could be the PV…to me it doesn’t matter.
Everyone needs to vent now and again. And, my experience is that a lot of people like to share their ailments but shut down when it’s your turn to share yours. So, this forum works except for the lack of coffee and snacks while we “talk”😉
I have a lot of respect and affection for the doctors I had/have that listen to me and explain what they are thinking and why a particular course of treatment but I always remember something my mother used to say, with deference to doctors everywhere, “There’s a reason they call them PRACTICING physicians…”
Feel better and feel free to bellyache!

I like you! Your comments are amusing! I hate getting on the scale too. I also have a hematologist but for low platelets and B12 def. I have the same knee issues and found Osteo-Biflex takes away all the knee pain as mine is a cartilage issue. Doctor recommended it!

Similar problems trying to get my hemo oncology office to respond to anything. I lost questions thru my e-chart, and they fall into a black hole. I would ask your PC if he could refer you to the far-away specialist for an eval and coordinate care through the PC. Your PC may not want to, but worth a shot.

The red flags have not been waving you in. I have great md s who listen and are attuned. I have another who is "numbers." He wants my bp and sugar at levels for someone 60 years younger. If I don't "get them down," more pills. The other docs took me off some of the pills. He says diabetic. Others say pre diabetic. One says "You are not diabetic. " Finger stick 114. We have to be in charge of our own care, but walk a fine line so as not to be a difficult patient, Gd forbid.

Every pill we swallow has its own side-effect profile, so we can end up getting side effects from the meds we take for side effects of chemo. I have to accept that the gift of longer life that chemo gave me came with a price of these annoying side effects. Some side effects I accept and live with, some I can take meds for. That’s the choice we have. I can wish that our specialists were more forthright about this issue.

Every pill we swallow has its own side-effect profile, so we can end up getting side effects from the meds we take for side effects of chemo. I have to accept that the gift of longer life that chemo gave me came with a price of these annoying side effects. Some side effects I accept and live with, some I can take meds for. That’s the choice we have. I can wish that our specialists were more forthright about this issue.