Anyone want to talk about Myelofibrosis?

I was diagnosed with MDS in 2021 and they changed it to MF in 2025. Just wait and watch.

Hollie

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.

@hlmcneely that's with me also. I kind of want a little more attention though. hard to wrap my head around

No disrespect to people with the real issues but yes. Blood work in 2 weeks.

I have Myelofibrosis and I'm on Jakifi. I might have to have some surgery (waiting on a consultation appointment) my MPN specialist suggested that prior to surgery I should get a platelet infusion (my platelets are low). Is anyone familiar with this infusion before surgery and how does insurance handle it?

@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 @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
Yes actually for several years I had a very full abdomen, a large hernia and this was all ascites due to my liver because of a blood clot but my doctor kept telling me it was nothing to worry about and the surgeon I saw said the ascites was good for the hernia. I could never figure out what was going on and why I was so short of breath. Thank goodness for the doctors at the hospital.

@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.

Hi @davi0937 ,
Great to hear your update and congratulations on your retirement and doing the Camino. The clinical trial you are in sounds like it has done wonders for your anemia. I am not sure how trials even work, but might consider one if appropriate at some point. My interesting development here is that the hand specialist I saw last week feels my right finger issue looks like an indolent infection on MRI and thought it best for me to have it biopsies through place like UCSD to check for infectious disease which was mentioned from my first one, but not the one done with the group I had last year for my first year of Medicare insurance which seems strange. I am not sure how that will fit in to my MPN diagnosis. You are right that is very lonely being CALR with a rare blood condition and 66 like you. I do hope we hear from others with something similar. Please give an update after your appointment in July.