Saw A New Hematologist That Says He Has A Lot Of Experience With ET And MPNs. He’s President Of The Group Of Hematology/Oncology Locations. | myMPNteam

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Saw A New Hematologist That Says He Has A Lot Of Experience With ET And MPNs. He’s President Of The Group Of Hematology/Oncology Locations.
A myMPNteam Member asked a question 💭

He was proactive at least
ran extra blood tests, did a blood test to check blood thickness, a chest CT scan to look for clots, a pelvic ultrasoundand to check spleen if enlarged, and a transvaginal ultrasound bc longer heavier shifting periods last 3-5 years.

Chest CT Scan negative, pelvic ultrasound no clots either. I didn’t think there were but felt better doing it bc I have medical anxiety, and anxiety about Rx, meds, even some holistic herbs, etc.

I think period issue, being 44 and also… read more

posted March 25 (edited)
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A myMPNteam Member

Please see a MPN specialist. Some of that seems like things your OBGYN should been monitoring. I’m a big believer that a jack of all trades is a master of none, even in the cancer world. And I did read about your insurance not covering. When I got diagnosed it took me a year to realize that I would have to catch a flight ✈️ to Cornell in NY because the hematologist was clueless. I have since located 1 in my area. I paid out of pocket for NY visits. He is right on the money with the Leukemia clinic at MD Anderson. That’s where I go. My concern is whether or not he is gonna call every time something new comes up. Because technically that is a consult. I know the doctor in NY who gave my first doctor information, wanted to see me atleast once a year. Did you already have a bone marrow biopsy? Only reason - it’s the only definitive diagnosis tool and also show any mutation. I prefer a physician that I see when I attend the MPN Congress in New York. Because the physicians that STUDY MPN are there. Both my NY and MD Anderson Leukemia doctors were there. My NY doctor actually invited me to meet my new doctor. Next year Congress is in October, I’ve already signed up. I wish you much success. ~Pat

posted March 26
A myMPNteam Member

Glad to hear that you found a doc that is more knowledgeable about MPNs even if not a MPN Specialist. Suggest that a direct consult with a MPN Specialist at least once would be worth doing even if you have to pay out-of-pocket.

There would be no reason to initiate cytoreduction for ET at age 44 unless you have had thrombosis or hemorrhage issues, or if you have other risk indicators. If you do need to initiate cytoreduction, then HU and Pegasys are both considered to be first-line treatment options. It is not true that the side effects of PEG are worse than HU. The side effects and cautions/contraindications are different.

We are all different in how we respond to these medications. They all have risks of potential adverse effects, even aspirin. The decision to not use cytoreduction also has risks. In evaluating each option we need to consider our treatment goals and risk tolerance, Then make an objective decision about which option is in our =best interests. Note that it is our treatment goals and risk tolerance that need to drive this decision.

If you prefer to use PEG over HU based on this analysis, then it is important to consult with a doctor who is experienced managing this medication. Many doctors, including hematologists, do not have much experience with PEG and bad memories of patients on the older forms of interferons. It is worth noting that many MPN specialists would recommend PEG over HU for all younger patients (age<60).

Suggest that at this point the anxiety may be more of a threat to your health than the MPN. Finding a better way to manage your stressors would likely do more to benefit your health status than any other intervention. Chronic excessive stress may contribute to reactive thrombocytosis/platelet activity. Here is one example of the research on this topic.

Wishing you all the best.

posted March 26
A myMPNteam Member

Ikealover, when you see him again, review with him why you should wait for a thrombosis before adding cytoreductive therapy. I'd want to prevent those complications before they happen. But you'd need to decide if the benefits of medication outweigh the risks for you. If you were to take medication ask if you can start on the lowest dose and see how you feel with it. Read more comments on this site about people taking HU and interferon. The newer interferons have less side effects than original interferon. My friend was in a clinical study for his leukemia in 1980 taking interferon and s/e were worse. But he is getting a knee replacement next month. He is alive. He is 80 years old and alive!!!! A good story?

posted March 26 (edited)
A myMPNteam Member

Hi-l can't speak to your specific health issues as we are all different. I have diabetes and have to be on low carb diet so eat eggs, meat and cheese in moderation.
Eventually had to take some meds. With PV, hydrea (HU) at a 500 mg per day and baby aspirin has helped get my numbers reasonable with few side effects. None of this is ideal but diet alone did not work for me. Most of all don't subject yourself to constant anxiety. Don't be afraid of hydrea if you need it. None of us are in control so sometimes we have to let go and hope for the best. I wish you the best for peace and healing.

posted March 26 (edited)
A myMPNteam Member

I go to MDA and they accept my insurance. I just got on Medicare, but they seem to indicate they will pay. You do need to see MPb specialist. The local oncologist/hematologist doesn’t usually have the knowledge and experience with this rare disease.

posted April 3

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