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

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tiegerdog | @tiegerdog | May 6, 2025

How are you tolerating Ojjaara now that you’ve been on it a few months? When you say 1/2 dose, is that 10 mg? Any other unusual side effects? Someone on this site mentioned having neuropathy that had increased after being on Ojjaara.

jackiecarey | @jackiecarey | May 7, 2025

Are you positive for JK2? I have PV with A positive JAK2 on hydrox for 2 years it can easily move to mylofibrosis...I personally would get a second opinion at a large academic center. what you have is serious and deserves a second look. I wish you all good things

gajokos | @gajokos | Jan 24 4:34pm

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

@colleenyoung
Hi Colleen, I do not see the cost of a second opinion on the Mayo website. Six weeks ago UCSF charged me $900 and because my Kaiser oncologist has delayed giving an MIPSS rating, UCSF is still working on their (written) second opinion report.

1pearl | @1pearl | Jan 27 10:04am

In reply to @gajokos "@colleenyoung Hi Colleen, I do not see the cost of a second opinion on the Mayo..." + (show)

Hi again @gajokos ,

Kaiser did two diagnostic models on me, GIPSS which was came back Low risk group, and MIPSS70+ version 2 which came back Very Low risk group. They provided me with a print out of it. Did they provide you with your results for those two models also? Did Kaiser have you do a bone marrow biopsy?
It would be frustrating to be charged $900 for a second opinion report and have it be delayed because of lack of patient data. Wishing you luck on that all being resolved now.

Colleen Young, Connect Director | @colleenyoung | Feb 10 6:11pm

In reply to @gajokos "@colleenyoung Hi Colleen, I do not see the cost of a second opinion on the Mayo..." + (show)

@gajokos, I believe the costs of a second opinion vary. I suggest you submit a request to speak with an appointment scheduler. They can provide more information. You can call or submit an online request to schedule a time that is convenient for you. https://mayocl.in/1mtmR63

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