Searching for MPN Specialist

[givingITMybest]

I live in Seattle, WA, USA and there are two identified MPN specialists, however, the ratings for these doctors could be better. There is someone in Boston where I have family who sounds fantastic, but is it possible to be so far away from your doctor? I see the hematologist every 6 months, with blood work done every 3 months. I have Et, Jak2 positive September 2019.

My fatigue, memory and thinking clarity has increased over the past 4-5 months. When I et my hematologist know the reply was a curt" this is not related to your ET." I was disappointed and felt unsupported. My primary checked my Thyroid, B12, iron and vita levels which are all fine. I think this is related to taking hydroxyurea. So, thinking I should see an MPN specialist? guidance please. Grateful to this community.

[hunter5582]

Absolutely do whatever it takes to see a MPN Specialist. There are two listed in Seattle, one more in WA, and two in Portland OR. mpnforum.com/list-hem./

It is worth doing whatever it takes to see one of these docs. They are far more familiar with MPNs and the medications used to treat them,

ET can most certainly cause fatigue. Hydroxyurea can case fatigue (asthenia) and neurotoxicty. "Cancer Therapies Associated with Confusion: Chemotherapy medications such as: hydroxyurea..."

chemocare.com/chemotherapy/...

online.epocrates.com/drugs/...

Note: the problems you listed are well known to be associated with MPNs and/or the meds used to treat them. It sounds like your current hematologist is not familiar with MPNs. It also sounds like this doc is not very good at patient relations. There is never any reason to be curt with patient concerns. The good news is that this doc can be replaced by one more suitable both in terms of MPN KSAs and treating patients with dignity, respect and compassion. That is your prerogative as a patient. The doctor works for you, not the other way around.

There is also good news regarding medications. There are other options that may be more suitable. Not everyone can tolerate HU as it is a "highly toxic medication with a low therapeutic index." drugs.com/monograph/hydroxy...

Hope you find more suitable care ASAP.

[givingITMybest in reply to hunter5582]

I am so grateful for your information. You really seem to know so much about MPNs. I've noticed this as I've read responses to others you've replied to. I think I've learned more from this group than in any of my other searches to acquire information. Thank you

[Bainbridge]

Hi I also live in seattle and have MF JAK2 I go to SCCA and see Dr Anna Halpern she is excellent and explains things well and her care team is great

[givingITMybest in reply to Bainbridge]

I will check her out. Having a recommendation from a someone is much better than simply looking on line. Be well

[hunter5582 in reply to Bainbridge]

I do not think that this doc is on the MPN Forum list. If she is a good doc and knowledgeable about MPNs, it would be good for her to be added. mpnforum.com/list-hem./

[Bainbridge in reply to hunter5582]

Just added her thanks

[givingITMybest in reply to Bainbridge]

I saw Dr. Halpren today and she was Grrrreat! She gave me more information today in my first visit than my previous doctor gave me in 2 1/2 years. I'll have a bone biopsy which I've never had and in general feel like i am now well cared for. Thank you thank you. She laughed when I told her a patient on Bainbridge island recommended her. r. Halpren talked to me about a clinical trial which I could participate in. I've read the literature and now have to think about what I want to do. I feel it important people participate, yet at the same time it is quite a large investment in time.If you're comfortable sharing, have you ever participated in a study for ET? Happy in Seattle

[hunter5582]

Thank you for doing that. That list is a a great access for many MPNers. All the best.

[buddin11]

Wishing you the best of luck. I too was told by my first hematologist that my fatigue was not related. I switched to an MPN specialist and received much better care and information. I’m in TN so don’t have a referral in your area, but looks like you’ve already received one. Just be sure you don’t settle for someone who doesn’t show they really care for you. This is a tough enough journey as it is - you need an informed, caring guide to see you through. 🧡💛🧡💛~Gail

[givingITMybest]

Thank you so much. I think I am going to make an appointment with the doctor recommended by the person on Bainbridge island. I read her bio and specialty interest and she does sound like an actual MPN specialist. Appreciate