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Finding a specialist for Essential Thrombocythemia
Hi there. My husband has "pure" ET (which I'm assuming means it is from a genetic flaw, but I really don't know) and has been on hydroxy for years. But two years ago he got a DVT in his leg and is now on a heavy-duty blood thinner - Lovenox, a twice-daily injection. (There were serious complications that landed him on Lovenox from one of the more common oral blood thinners, including a clot in his heart.) Since the onset of the DVT and the introduction of a blood thinner he has developed multiple foot ulcers. They are incredibly painful and often get infected. He has been seeing a wound care specialist once a week for over a year now to treat them, but can't seem to get rid of them. When one finally starts to heal another pops up somewhere else. These ulcers have reduced a once healthy active man to someone who has difficulty walking to the mailbox. We are losing hope and the doctors here in southern New Hampshire have no solutions, other than to switch him from Hydroxy to Interferon, which so far has not changed a thing. I think its time to find a specialist for ET, but I don't know where to start. Any guidance would be much appreciated.
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Welcome to Connect, @j123n. I’m so sorry your husband is having such a difficult experience with his ET and treatments. I think your instincts are right…it may be time to find a specialist with more experience in treating blood conditions for your husband. It’s never a bad idea to get a second opinion.
A good place to begin the search is to look for a larger teaching hospital or one associated with a university. Their bench of doctors is usually more diverse, offering specialities than with a smaller town of limited doctors. Do you live near any facilities like that?
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4 ReactionsThere are larger teaching / medical centers in Greater Boston area. Can you get in there?
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2 ReactionsYes, we can get to Boston no problem. He has been to Tufts Medicine when he had the clot in his heart but they were reluctant to offer an opinion or assistance with the foot ulcers. I kept pushing the issue because I knew the ulcers were where it all started to go downhill, but I got a weirdly political response. It was as if no one wanted to step on the toes of his current hematologist. So it makes me question how to go about getting in to see someone else (would love to get him in to Mass General hematology) without that strange push back again.
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1 ReactionBy the way, thank you both for responding. I suddenly feel less alone, which is a really wonderful gift. Thank you for that.
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2 ReactionsDon’t worry about a pushback or stepping on the toes of his current doctor. You have to be your own, in this case your husband’s, advocate for healthcare. If you’re not feeling all warm and fuzzy about his current doctor, it’s within your right to be that squeaky wheel and seek an appointment elsewhere.
Mass General would be an excellent option. Larger hospitals usually have teams that work collaboratively to provide the best care for their patients.
I found their Request an Appointment page: https://www.massgeneral.org/appointments-and-referrals#:~:text=Call%20our%20patient%20care%20team%20at%20617-726-2000%20or,care%20team%20and%20manage%20your%20appointments.%20Referring%20Providers
Having a second opinion will give you peace of mind. Will you give it a try?
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2 ReactionsYes, we will. Thank for the pep talk!!
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2 ReactionsI've heard good things about Lahey Clinic and also Dana Farber. Sorry for your husband's issues. Take care, stay safe
Remember ET is a blood cancer, so MPN oncologist is important......
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1 ReactionDad had leg/foot ulcers that would not heal. Some patients develop this after years on HU. Going off HU seems to be the right move if that's the culprit, but ulcers still may take awhile to heal.
I am 6 years in on HU, but so far ok. I am 70 yo F with ET-CALR.
I think you're right to pursue specialist treatment.
I have never heard of "pure" ET. It sounds like the current doc has something specific in mind with that term. You might want to ask what he means?
I wouldn't have any problem asking my current hematologist if she could send me to to university hospital research specialists if we ran into problems she couldn't handle. Most docs now are relieved when you ask for a referral for something puzzling or suggest it themselves. The referral places like to know your original doc is involved because they get all the pertinent history, and once they figure out the best treatment, they can turn you back over to the original doc.
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4 ReactionsIt is worth finding an MPN specialist given how rare these conditions are. Some hematologists may only see a handful of ET patients, but MPN specialists so are typically not as knowledgeable. They may be great when things are "routine" but not not be optimal when complications arise. MPN specialists see many more patients and are very focused on the range of treatment options, symptoms, etc.
I know some MPN patients see a local hematologist throughout the year, but consult with the MPN specialist annually for oversight (particularly if the specialists is not close to home). I have provided a link to one resource for such a specialist (there are other resources that provide similar lists).
https://mpninfo.org/medical-information-sources/national-international-mpn-centers/
At Dana Farber, the following doctors are listed on this source.
David P. Steensma
Martha Wadleigh
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4 ReactionsThank you so much!!