Anyone want to talk about Myelofibrosis?

@hopeful33250
Hello,

I was diagnosed with APS, Jak2 and Myelofibrosis about 7 weeks ago after having horrible pain in my abdomen. Went to the emergency room to fi d out i had blood clots, and enlarged spleen and liver. BMB confirmed scarring in the the bone marrow. Heading to Mayo in AZ next month to meet with MPN specialist.

I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I put on Jakafi in September of 2023. 10mg twice daily. I decided not to let this define me and trying to keep my life in order. My question or maybe just a statement--it seems like the oncologist only looks at my blood counts and asked about symptoms only related to Jakafi and myleofibrousis. I also have hypothyroidism, but only my GP looks at that. It seems like no one is looking a whole person approach. Just wonder it there is any relationships to the two diseases.

Hi @rivieramaya2009 ,
Thanks for your post. I agree with all you said and do. May I ask how it was decided that you changed from ET to SMF?
Stay positive, pray, do things that make you happy, and avoid stress when possible is what I try to do myself.

@1pearl
Hi~I was diagnosed with SMF June 2025, after having ET for 33 years with HU treatment for that for about 5 years. Completely healthy until a year ago. I’m 76 and periodically have malaise, inflammation in my gut and swollen ankles, headaches (mild) and fatigue. I eat really well, walk, and Pilates 3 times a week, and take plenty of supplements, and let’s not forget prayer! Not sure if it’s helping keep me healthy, but can’t hurt. I take no medications and am grateful. My platelets are in the 700’s and red counts are a little low—-I think 10.8. I go for a check up next month. I try my best not to have stress in my life. Sometimes it sneaks in. One of these reasons I’m not always on Mayo connect. I wish you well!

From @1pearl,
I just came across my own post from last July, about nine months ago. I guess I have been blessed that I still have no symptoms, just high platelets and slightly high white cells at 13.9 shown on my recent did lab work with my new insurance I took 1/2026. Last year I did go see the bone marrow transplant specialist my old insurance O/H sent me to about three hours away from my house. He said it is not true that a bone marrow transplant must be done by age 70. It can be done at later age as long as person is in very good health. He said I did not need one and may never but he just did not know for sure as no one knows what will change in their future. He just told me to stay in very good health like I am and have always been. As I feel just fine like I always have, I decided to wait for my next appointment to follow up on my possible myelofibrosis situation with someone I suspect is a true MPN expert dealing with myelofibrosis patients including those with my specific mutation. She is the lead doctor at UCSD in myelofibrosis. I have an appointment with her scheduled and it is covered by my new insurance. In the meantime, I have an appointment at the end of April to see a new hand specialist regarding my initial complaint of a very enlarged right ring finger joint that is still not painful at all but makes writing neatly a challenge. I am so glad I changed my Medicare insurance to a different plan and finally I have an awesome primary care doctor who actually listens and makes appropriate referrals promptly.
Does anyone else any update in their myelofibrosis journey? Hope everyone is doing well enjoying the Spring season.

@1pearl Hello! I have a similar situation. Diagnosed 6/2025 by a general hematologist. Sent to Rochester Mayo in July. I had significant anemia but no issues with WBC or platelets. I do think the mutations determine the physical symptoms. I am the rare MPL with a risk mutation of SRSF2. This has a higher chance of transforming to AML. I started a clinical trial October 2025 and now my hemoglobin is normal. I have a slightly enlarged spleen but no need for treatment. I retired March 27 after a 40 year career in finance/CPA and with my husband just completed the French Way Camino De Santiago. The clinical trial is working and requires me to go monthly to Mayo. I’m meeting with the BMT provider in July to discuss next steps. I’m 66 and want to be in good health when a BMT happens. With SRSF2 there is a higher chance of relapse after 5 years but with a new high intensity chemo that is reduced. Hope to hear from others in a similar situation. I’m in such a rare blood situation that it feels very lonely.

From @1pearl,
I just came across my own post from last July, about nine months ago. I guess I have been blessed that I still have no symptoms, just high platelets and slightly high white cells at 13.9 shown on my recent did lab work with my new insurance I took 1/2026. Last year I did go see the bone marrow transplant specialist my old insurance O/H sent me to about three hours away from my house. He said it is not true that a bone marrow transplant must be done by age 70. It can be done at later age as long as person is in very good health. He said I did not need one and may never but he just did not know for sure as no one knows what will change in their future. He just told me to stay in very good health like I am and have always been. As I feel just fine like I always have, I decided to wait for my next appointment to follow up on my possible myelofibrosis situation with someone I suspect is a true MPN expert dealing with myelofibrosis patients including those with my specific mutation. She is the lead doctor at UCSD in myelofibrosis. I have an appointment with her scheduled and it is covered by my new insurance. In the meantime, I have an appointment at the end of April to see a new hand specialist regarding my initial complaint of a very enlarged right ring finger joint that is still not painful at all but makes writing neatly a challenge. I am so glad I changed my Medicare insurance to a different plan and finally I have an awesome primary care doctor who actually listens and makes appropriate referrals promptly.
Does anyone else any update in their myelofibrosis journey? Hope everyone is doing well enjoying the Spring season.

Hello @karla987 and welcome to Mayo Connect.

I'm so glad to hear that you will be meeting with a Mayo specialist in Arizona. Had you been having other symptoms prior to the trip to the emergency room?

@hopeful33250
Hello,

I was diagnosed with APS, Jak2 and Myelofibrosis about 7 weeks ago after having horrible pain in my abdomen. Went to the emergency room to fi d out i had blood clots, and enlarged spleen and liver. BMB confirmed scarring in the the bone marrow. Heading to Mayo in AZ next month to meet with MPN specialist.

Hello @wellness3070 and thanks for beginning this conversation. Please share with us your interest in this disorder. Is this a recent diagnosis for you? We look forward to getting to know you better and having others share with you from their experiences as well.