Symptoms and Progression

[yoshimoto]

My husband was diagnosed with Jak2+ ET in 2018. He was 52. He was hospitalized with purple toe syndrome and blockage of marjor artery in his leg. He had symptoms for about 15 years, but never went to doctor. He is being treated now. I guess I'm wondering how will he know how far into disease he really is. Should he going to blood cancer specialist?

[Mazcd Partner MPNVoice]

Hello Yoshimoto, is your husband being seen by a haematologist for his ET? Maz

[yoshimoto in reply to Mazcd]

oncologist

[Mazcd Partner MPNVoice in reply to yoshimoto]

Hi Yoshimoto, your husband should have a discussion with his oncologist about his ET, and the ongoing treatment plan, I am sure that will help. Best wishes, Maz

[hunter5582]

Many oncologists are also hematologists. Unfortunately, most hematologists have little/no experience with MPNs because they are so rare. Most do not have the KSAs to provide optimal care for MPNs. We each can have a unique presentation of our MPN and co-occurring medical conditions. We each need an individualized treatment plan. The standard protocol may or may not be the right choice for any one of us.

Optimal care is attained by consultation with a MPN specialist. Here is a list of docs with MPN expertise recommended by other MPN patients. it is worth doing whatever is necessary to have a MPN-expert doc consulting on your husband's case.

mpnforum.com/list-hem./ .

[yoshimoto in reply to hunter5582]

Thank-you for the list. I was happy to see my husband is seeing someone on the list. He is a friend and wonderful physician. I should say that my husband is an internist who completely ignores his own health. So when we see his oncologist they seem to talk about everything but his condition. My husband did say he thinks we should go to a specific MPN facility a few hours away. Since my husband always plays down how far into the disease he really is I assumed his Doctor didn't treat alot of MPN patients. This facility he suggested only treats MPN's. I will have to see why he thinks we need to go to this other facility.

[hunter5582 in reply to yoshimoto]

I can say that from my experience receiving services at the Johns Hopkins MPN Clinic that going to a MPN specialized practice does make a difference. They have an even larger body of knowledge and resources that other practitioners do not have. These setting are often involved in research and stay on the cutting edge of current treatment options.

It can be true the doctors can be some of the worst patients, but not always. I expect your husband may be realizing he needs to step up his treatment for the MPN. Hope he does follow through.

[yoshimoto in reply to hunter5582]

He is realizing it was not wise to ignore his symptoms. He is actively involved now and when we talked his reasoning was the same as yours. A facility specifically studying and doing trials will be more advanced. Our son was in Baltimore City as a fireman and paramedic and Johns Hopkins MPN was a consideration. We are going to go with the Lemieux MPD center in Pittsburgh though (only because its closer). Thank you so much for your help!

[Wyebird]

Maz is the best person to advise so you are in good hands now. Xxx

[yoshimoto in reply to Wyebird]

Thank-you

[dancingelephant]

Hi, I am very interested to hear about your husbands purple toe syndrome, as I too have an extremely swollen and bloated toe. I have a haematologist, and have shown him my toe, but he has dismissed it!!! I am seeing a podiatrist soon for another opinion. I am sure that if you request an appointment with a specialist you will get one. So preserver.

The best of luck.

Bonnie