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

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

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

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.

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

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?

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

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

Thank you!

I suffer from a mild myelofibrosis. From time to time, I am experiencing night sweats. Has anyone received some kind of treatment or medication to prevent repeated night sweats? I appreciate you help. Reza

I am seeing Dr. Teffari at Mayo Clinic. He's the lead specialist in the world for MF. When I saw him a year ago, he said treatment wasn't necessary until symptoms get worse. This is also what my local oncologist said. I wanted a second opinion. I now am on Ojjarra because I was having discomfort and pain where my spleen is and my platelets were approaching a million. Im only on a half dose and I'm tolerating it well. No more spleen pain. I had also experiencing muscle loss/ weakness. I hired a personal trainer to hopefully get back some of my loss. I lost 30 lbs before I was diagnosed. Hopefully, the full dose will also be tolerated and my platelets will come down. They have come down to 700,000. A second opinion gives peace of mind. Dr. Teffari's parting words were, "You are not going to die of Myelofibrosis. You will eventually die WITH Myelofibrosis!"