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MPN

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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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What's One Piece Of Advice You'd Give To Someone Who Was Recently Diagnosed?

What's One Piece Of Advice You'd Give To Someone Who Was Recently Diagnosed?

A myMPNteam Member said:

Have you tried to do volunteer work in a hospital near you. With your experience working with children they woul love to have you.

posted about 1 month ago

Covid Booster Dose For ET Patients?

Covid Booster Dose For ET Patients?

Is a third mRNA recommended for ET patients on Hydrea and ASA in the US? Canada? Europe?

A myMPNteam Member said:

Thank you for this, Marje!

posted 11 months ago

Does Anyone Have Ringing In Their Ears Intermittently With PV?

Does Anyone Have Ringing In Their Ears Intermittently With PV?

Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?

A myMPNteam Member said:

Interesting replies from everyone. Thanks. Very interesting about more with it now since the vaccine--esp. since the webinar I was on about MPN'S said its caused by very small blood clots in the… read more

posted 9 months ago

Some Feedback Please...

Some Feedback Please...

My docs have asked a favor. I've posted on this forum that my doc gave me a very low dose of Ritalin to help with my brain fog, and it worked really well. In addition to the brain fog relief, it also eliminated that horrible bone pain in my legs. They would like to know if anyone else has tried Ritalin (Methylphenidate) and if they had similar results. They are curious if this is an "off label" bonus that other MPN patients may benefit from. I'm not passing any names on to them, just comments… read more

A myMPNteam Member said:

Never given Ritalin

posted 7 months ago

Does Anyone Else Have Grave’s Disease?

Does Anyone Else Have Grave’s Disease?

Did you know Pegasys and Graves disease are linked. In rare cases, Pegasys can cause Graves. Which means you have to constantly pull the TSH. Something your oncologist probably isn’t watching. Tell them to pull it! Do you have your ferritin pulled as well? Anemia can be a cause of MPN’s. We have to watch our iron as it’s a great indicator of autoimmune diseases…like cancer.

A myMPNteam Member said:

I have a friend in Canada that now has to take a thyroid pill because something is happening with her thyroid from MPN. I asked her if she ever heard of Graves Disease and she said she was going to… read more

posted 8 months ago

How Long Does Hydroxyurea Take To Reduce Blood Counts

How Long Does Hydroxyurea Take To Reduce Blood Counts

I have PV, having fortnightly phlebotomy's and are taking 1000mg hydroxyurea daily. I have been taking HU for 3 weeks now, but my hematocrit levels are still at 61%. How long would you expect it to take to start decreasing your levels? I guess it is a bit of an open ended question, but what have others experienced out there, to give me an idea. Much appreciated.

A myMPNteam Member said:

It can take awhile. I was initially having phlebotomy every 2 weeks plus HU 500 mg daily. I could not tolerate higher doses of HU. It took about 3 months for hematocrit and hemoglobin to normalize.

posted 9 months ago

How Often Are The People With PV Seeing Their Oncologist?

How Often Are The People With PV Seeing Their Oncologist?

My husband was diagnosed last Aug 2020 and we have seen his Oncologist once. Covid has thrown a wrench in this but when I asked him how often we should expect office visits he said he typically sees his PV patients once a year. I'm very uncomfortable with that.
Said that the blood work/labs show him what he needs.

A myMPNteam Member said:

My oncologist sees me every 6 weeks with lab tests for myelofibrosis. Now she is leaving and as 1/18 I have no oncologist.
Judy Skinner

posted 7 months ago

What Is The Prognosis & Life Expectancy For Someone Who Has ET With JAK2 Mutation? I Took Hydroxyurea For 13 Years, Now On Jakafi.

What Is The Prognosis & Life Expectancy For Someone Who Has ET With JAK2 Mutation? I Took Hydroxyurea For 13 Years, Now On Jakafi.

A myMPNteam Member said:

My friend has PV 18 years, on high doses of Hydroxyurea until it quit working so she was started on Jakalfi about 2 yrs ago, her numbers are kinda crazy, her cholesterol has gone up,up,up but she… read more

posted about 1 year ago

Can Anyone Share How They Responded To Interferon Or Other Treatments To Lower Their Platelets?

Can Anyone Share How They Responded To Interferon Or Other Treatments To Lower Their Platelets?

I have ET, Cal Axion 9 Mutation (Calr). I have been on HU for over a year, my platelets have reached 1.5 million. (They have been at 1 million for over a year.) I am wondering about side effects. Thanks in advance!

A myMPNteam Member said:

I take Peginterferon as of two months ago. My platelets came down steadily each week and as of this week was 415 which is now in the normal range. I had headaches for about a month but after that I… read more

posted about 1 year ago
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