Getting nowhere with current Hematologist

My condolences for the condition you're in. Have you discussed all your concerns with your primary care doctor? What is your age? What other medical issues do you have besides PV?

Thank you.
Yes, my PCP is aware and is very helpful.

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.

Sadly there are many hematologists that have no clue what they are doing from my sons experience.. Did she have a diagnosis before treatment? My son is worse off too... I feel helpless and angry to watch him being almost as if experimented on.. please find someone else

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.

Hi withhope,

I am very sorry you have had such a bad experience with all that. Yes, I totally get what you are saying! I was assigned and saw an O/H on 1/10/25 because my platelets were high on a routine lab test. She immediately diagnosed ET and prescribed me 500mg Hydrea twice per day. I joined this group before taking the med and learned that was kind of a high dose for person like me weighing 106-108 pounds. My O/H also did not like that I questioned her as to how she could definitely know what I have on one lab result and I asked her for a bone marrow biopsy which I know is not routinely done. She reluctantly agreed and of course from that, she changed my diagnosis to Myelofibrosis on 2/10/25. My risk analysis for Myelofibrosis done through my Medicare HMO came back very low risk and low risk, so I decided not to Hydrea now and just take baby aspirin daily for my high platelets and get blood labs every one to two months. I asked to see a MPN specialist and she said they have none, but she did refer me to a bone marrow specialist that works both for the HMO and City of Hope. I have a appointment there in two months mostly to ask questions as I am no where in need of a bone marrow transplant at this time! It will be a couple of hours drive from where I live, but my husband said he will take me and he asks lots of questions too! I am blessed to be 65, very healthy and feel just fine with tons of energy although I have been given the diagnosis of ET and then Primary Myelofibrosis, and CALR1 mutation.
If I were you, I would definitely consider getting a second opinion with a doc you research to make sure they seem to be a good fit. Is there anyone you can ask to come with you? Wishing you the best!

Thank you. I pray you have good experiences on your journey

Hi withhope,

Thank you and I do appreciate your prayers.
Feel free to vent anytime. I hope you get to see another better O/H soon. I have a nice caring primary doc who listens and hopefully you do also. Maybe you can ask your primary doc for some help on all this.

@withhope Seeing that your PCP is aware and helpful, what do they have to say/suggest? Are you near a teaching hospital or university? Being an advocate for ourselves is so important!
Ginger

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!