Primary Myelofibrosis: Continue watch & wait? 2nd opinion?

Posted by carolannt @carolannt, Nov 5, 2023

Does anyone have PMF? I was diagnosed in July and still need to learn more about what is best for me. I'm a 67 yo female and at last visit 2 mos ago I was not experiencing major symptoms. Occasional night sweats, slightly enlarged spleen, constant fatigue. Should I go to get advice from Mayo Clinic or keep doing the watch and wait? No meds right now.. Thanks

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

paulhayne | @paulhayne | Nov 6, 2023

How are your platelet's? Go to Mayo Rochester and see Doctor Teferri. I've had it for seven years. Don't wait.

carolannt | @carolannt | Nov 12, 2023

My platelets are ok..But WBC went up to 27. I hope to connect with Mayo this week.

Colleen Young, Connect Director | @colleenyoung | Nov 12, 2023

In reply to @carolannt "My platelets are ok..But WBC went up to 27. I hope to connect with Mayo this..." + (show)

Hi @carolannt, if you would like to get a second opinion at Mayo Clinic, you can self-refer or get your current physician to submit a referral. Learn more here: http://mayocl.in/1mtmR63

Here are a few other discussions about
- Primary Myelofibrosis https://connect.mayoclinic.org/search/discussions/?search=Primary+Myelofibrosis

In addition to @paulhayne, I'm tagging @rspriggle @stevehurlburt @scottmatteo @ragius and @stimme to bring them into the discussion to share their watch and wait stories and treatment decision making.

carolannt | @carolannt | Nov 12, 2023

In reply to @colleenyoung "Hi @carolannt, if you would like to get a second opinion at Mayo Clinic, you can..." + (show)

Thank you for your help. Is it better to get my Dr to refer me to Mayo Clinic or do it myself?

Lori, Volunteer Mentor | @loribmt | Nov 13, 2023

In reply to @carolannt "Thank you for your help. Is it better to get my Dr to refer me to..." + (show)

Hi @carolannt. Regarding the referral to Mayo…you can do it on your own but I’ve heard it helps if your doctor makes a referral. Here’s the site for the Mayo Clinic where your doctor can make the referral. https://www.mayoclinichealthsystem.org/referrals#:~:text=Complete%20our%20referral%20form%20on%20your%20computer%2C%20then,appropriate%20department%20for%20review.%203.%20Refer%20by%20phone

Best of luck to you! Will you let me know what you find out?

carolannt | @carolannt | Nov 13, 2023

Thanks. If I do it on my own with no luck, can I then have my Dr refer me?

Colleen Young, Connect Director | @colleenyoung | Nov 13, 2023

In reply to @carolannt "Thanks. If I do it on my own with no luck, can I then have my..." + (show)

Yes. The first step involves speaking with a scheduler. You can ask the scheduler if they think a physician referral would be better.

carolannt | @carolannt | Nov 14, 2023

In reply to @colleenyoung "Yes. The first step involves speaking with a scheduler. You can ask the scheduler if they..." + (show)

Thank you!

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