MPN Specialist

[hunter5582]

We just got word that one of the lead MPN Specialists at Johns Hopkins (my current doc, Dr. Evan Braunstein) will be leaving to become the Medical Director at Incyte. Our loss is Incyte's gain. Hopefully he will be able to contribute as richly to the MPN research/pharma world as he has to clinical practice.

Now that I am once again looking for a MPN Specialist, it made me think - what do I mean by a MPN Specialist? Here is my working definition.

Major Criteria

1.Active member of a MPN Center/Clinic team.

2.Focus on MPNs as a primary/major focus of clinical practice

3.Up to date on state of the art and emerging MPN treatments.

4.Active participation in MPN research.

5.Presents/attends MPN forums/trainings/conferences.

Minor Criteria

1.100+ MPN patients (past & present)

2.Values a collaborative relationship with patients. Respects the patient’s ability to make decisions.

3.Focus on underlying mechanisms involved in MPNs (e.g. molecular pathogenesis, kinase pathways, proteomics, genetics).

Number 2 of Minor Criteria is actually a deal breaker, but it is my criteria for all doctors.

Please add to the list anything I might have missed. Would be interested in other's thoughts on what constitutes a MPN Specialist.

I am quite fortunate to have a wonderful hematologist who handles my ongoing care. I only need to meet with the MPN Specialist 1-2 times/year. And be able to ask questions now and again. Hopefully we will come up with someone at Johns Hopkins. If not, I will seek care at another MPN Center.

Do please weigh in with your thoughts.

[mhos61]

That must be so disconcerting for you. Hope you don’t have too much difficulty in finding another MPN Specialist that you have a valued relationship with.

For me, an MPN Specialist particularly fits with your ‘major criteria’ point 2, Primary focus is on MPNs, which hopefully would suggest that the other major criteria automatically follow.

I found this helpful link. It also gives a further link (PV Reporter) to a list of MPN Specialists in the USA. You’re probably already aware of this though

mpncancerconnection.org/201...

[hunter5582 in reply to mhos61]

Thanks. That is one of my go-to lists for MPN Specialists in the USA. I also use the world-wide MPN Forum list. mpnforum.com/list-hem./ This list includes patient-recommended dcos who see MPN patients. Some are MPN Specialists. Others are good hematologists who also see MPN patients.

Apparently my departing doc had about 200 patients on his caseload. They are working to find appropriate replacements for all 200. That is a bit of a struggle for those of us with MPNs. Particularly for those of us who have rather specific requirements in what we expect for a MPN care provider. We will see how it works out.

[dladydi]

Hopefully your search will go well Hunter. The information we receive from your interactions with your team are well received by many of us in this group. Best of luck finding a new specialist.

[Cja1956]

I wish you luck in finding a new MpN specialist. I know how disconcerting it is to lose a doctor you trust. Let us know how the search goes.

[Meatloaf9]

Hi Hunter, sorry you are losing your specialist. I would imagine that John Hopkins will find or have another well qualified MPN expert. I live near Parkersburg and go to Dr Gerds at Cleveland Clinic once or twice a year. I think he checks all the boxes on your list. You can see a video of his on their website. Probably a little longer drive for you. Best.

[Airslie]

Hi Hunter, So sorry you’re losing a trusted doctor. I hope you can find another doctor quickly. I just want to say that thanks to you, I searched out one for myself after having a terrible experience with the hematologist I had. I live in Charlottesville Virginia and was very happy to find Dr. Michael Keng at the UVA Cancer Center in town. He’s been wonderful! I feel very cared for now. My husband is thrilled as well. Not sure if that’s too far for you but thought I’d let you know about him.

[hunter5582 in reply to Airslie]

I am very glad to hear that you found a good MPN-doc. It makes such a huge difference when we have a MPN team that cares and has the needed expertise. Thanks for the recommendation. I could do the trip from Harpers Ferry, WV to C-ville if I had to. Fortunately, I think we are getting things worked out at J-Hopkins,

All the best to you.

[Elizka]

Excellent list of criteria for anyone who needs it. Thanks so much, Hunter.

[beetle]

A change of doctor can always be disconcerting so I hope you find a good one. With your list of requirements i naughtily pictured the doctors sitting in the waiting area for you to interview one by one!I certainly agree with your deal breaker. You are very knowledgeable about your condition and to a lesser extent so am I. I also can’t be doing with any doctor who takes the attitude that they know all the answers and we are there to listen, accept and act without question on their pearls of wisdom! Unfortunately there are still many out there who react like that although I have to say I have found it more prevalent in general medical practitioners than in MPN specialists

I hope you find the right person as after all your list of requirements is nothing less than we all have the right to expect

Best wishes, Jan

[hunter5582 in reply to beetle]

I actually do regard a first appointment with a new provider to be much like an interview. I am making the decision as to whether to hire this provider as a member of my care team based on how the provider presents. I never go into the first appointment blind. I always research the provider's background and ratings from other patients.

I do value each providers expertise. That is why I hire them. I simply require a collaborative relationship. The doctor's job is to consult, educate and advise. The patient's job is to make decisions. Doctors write orders for patients, but do not give them to patients. Any provider not willing to work this way is off the care team.

I am quite fortunate to have wonderful providers on my care team. The best are those who combine knowledge of the science of medicine with being gifted in the art of healing.

All the best,

[beetle in reply to hunter5582]

Hi. There are obviously some advantages to the American health care system. In good old Uk on the NHS we are rarely given any option as to the doctor we are assigned to. My last move from Scotland to the south of England I did some research into who at least had a particular interest in MPNs and my consultant was good enough to make a referral directly to him. I also see Prof Claire Harrison in London once a year as she is the one with the most expertise and coincidentally my new Haematologist used to work with her so they have an excellent line of communication I feel I am better catered for than some in this country

Take care, Jan

[hunter5582 in reply to beetle]

Which is proof positive that assertive patients receive higher quality care. Passive patients do not. This is true in all healthcare systems. You just have to work harder at it in some than others. Glad to hear you have something worked out that works so well for you.

[strangeland]

Has Dr. Braunstein's departure date been announced? Hopkins called and changed my annual appointment with him from June to July, but I was not given any impression that it would be with a different doctor.

[hunter5582 in reply to strangeland]

The letter from Johns Hopkins says he is leaving in June. My June appointment with him was cancelled. Suggest calling his scheduler and clarifying. They are trying to find new docs for all his patients. Something may have slipped through the cracks.

[hunter5582 in reply to strangeland]

Just got word he is keeping a very limited role at JH for several more months past his departure. May be mostly consulting from the sound of it.

[Golf2022 in reply to strangeland]

I had an appt with Dr. Braunstein in July but was cancelled. They transferred me over to Dr. Cynthia Rappazzo, but when I asked, she seems to be a general hematologist.

[hunter5582 in reply to Golf2022]

I believe Dr. Rapazzo is a third-year fellow in hematology at Johns Hopkins. Her mentor is Dr. Ambinder, who is one of the MPN Specialists at Hopkins. You will have to decide if that works for you. hopkinsmedicine.org/kimmel_...

[Wyebird]

Love it. I can’t think of anything to add

[Wyebird]

Meanwhile I hope you will continue to feel content with your present clinic

[Kids0901]

Good Afternoon Hunter I rarely post but follow this site and am very thankful to have it as a resource, I was diagnosed PV 4/2021 and am very lucky to have a team of specialists lead by Dr Elliot Winton from Emory Winship Cancer Center.

I cannot recommend this group enough. It was very important to me to have much say in my treatment plan and I have always felt very heard and never disregarded ! In looking at your list this group may hit all your needs.

Best of luck to you and thank you for all of your wisdom.

winshipcancer.emory.edu/bio...

[hunter5582 in reply to Kids0901]

I am really glad to hear you found such a good place to receive your MPN care. Dr. Winton received a MPN hero award! Emory would be a bit far to go from Harpers Ferry, WV. It sounds like exactly the kind of place I would want to be.

The good news is that we seem to have worked out a suitable transition to a new doc at Johns Hopkins for me. Will post details when it is all worked out.

[Alfiesarah]

I am not under MPN specialist, but haematology consultant at my local hospital who tells me he is the ' platelets expert'. I was diagnosed with ET Jak2 positive last October following many types of tests. My Platelets were 810 at the time, 650 22 Dec 21 and 500 2nd March. I was prescribed 500mg per day of Hydrea and 75mg aspirin. After 22 Dec appt he insisted I should go to 1000mg daily which ruined my whole Christmas and NY ..I was so ill because of the increase. I stuck it for 5 weeks but then had to revert to 500mg daily...I felt like I had permanent flu! Even though Platelets had come down to 500 last visit, he was trying to persuade me to double up again...I said no but agreed to 1000mg twice pw, rest of the time 500mg. This too made me really ill and gave it 2/3 weeks and reverted..I find the side effects awful even on 500 daily which I have been taking for 8 weeks again now..review tomorrow. He knows I am not particularly tolerant of Hydrea and said will discuss alternatives. Is it better devil you know and put up with the fact I probably have 2 good weeks followed by a week of feeling awful..then say 10 good days..and so on. Also, should I be under the care of MPN Specialist? I'm new to group and would really appreciate any advice ahead of my next appointment tomorrow.Thanks

Bernie

[hunter5582]

In regards to consulting with a MPN Specialist, the answer is yes you should be. MPNs are rare disorders. Most hematologists do not have the KSAs to provide optimal MPN care. Here is a list a patient-recommended MPN docs. mpnforum.com/list-hem./

It is not uncommon to have adverse effects at higher doses of Hydrea (aka hydroxyurea, hydroxycarbamide - HU). Some of us simply cannot tolerate it at all. I experienced toxicity even at very low doses. Others tolerate HU and benefit from it. We are each different and need an individualized treatment plan. I responded much better to Pegasys, which is the other first-line treatment option for ET.

Here is a bit of information on HU.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

There are two first-line treatment options for ET, HU and Pegasys (PEGylated interferon alpha 2a). There are also second-line treatment options like anagrelide and ruxolitinib. There are also drugs in clinical trials for Et like bomediststat and Besremi. You hematologist should be reviewing all of your options, particularly the two first-line options. Here is a bit of information about ET treatment options.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

silvermpncenter.weill.corne...

The best advice I can offer is to educate yourself about your options and then advocate for what you believe to be in your best interests. This includes setting your treatment goals. Note that some leading MPN experts do not target reaching a goal of PLT<400 anymore. Some now use 600 (see above). Some do not use a numeric target at all. There is no evidence in the research that PLT<400 has any benefit for all people with ET. Some people do need that, but many do not. You certainly have the right to focus on quality of life and risk reduction if that is what you wish to set as your priorities.

All the best.

[Auggie17]

So sorry to hear that. I hope his replacement is someone you will be happy with as traveling to other places can be difficult and costly. My MPN Specialist, Dr V at MD Anderson seems very collaborative and accessible and his reviews indicate the same feeling. Will be hoping and praying for you to find the next great specialist that will work for you!

[Golf2022]

Hunter5582,

Dr. Evan Braunstein is my MPN Specialist too! I've also lost my local hematologist as well, so I am searching for both. It seems that the other MPN Specialist at Hopkins are not taking any new patients. His office assigned me to another doctor and when I asked if the new doctor is a MPN specialists, they said she was a general hematologist.

[hunter5582 in reply to Golf2022]

I was also referred to an a generalist hematologist. While an excellent doc, he did not have the KSAs I was looking for in a MPN Specialist (see above). I insisted on being switched to a doc who met my criteria. I will be seeing Dr. Tania Jain, who is not on the list of MPN Specialists on the Johns Hopkins website, but does seem to have the expertise I am looking for. There are a few docs at Hopkins who are not on the list below. I would suggest starting with the docs listed on the Johns Hopkins website. hopkinsmedicine.org/kimmel_...

I was very clear about what I was looking for at Johns Hopkins. I have an excellent local hematologist who handles my ongoing care (Dr. Amit Sarma - Virginia Cancer Specialists) . He is not by his own definition a MPN Specialist. We rely on the MPN-expert consultation to manage the PV effectively.

Dr. Braunstein's scheduler is very good and doing the best she can to coordinate the impact of his leaving. You do need to remind the folks handling the reassignments that you do not need a hematologist at Hopkins. You need a MPN Specialist consultant. You will handle the ongoing care with a local hematologist. This makes a big difference in who you get assigned to.

Wishing you success.