Good morning @ruthiek519 Well, of all the gifts you could have gotten for your 72nd b-day, you’re wishing the diagnosis of PMF would have come with a gift exchange receipt, huh? Bad joke, I know. I’m 71 and can relate to getting news that wasn’t anticipated…and, having a doctor being less than helpful.

I’m happy you found Connect. Promise you won’t be alone here. ☺️ I’m posting a link for you with the search results for discussions with other members who have MF (PMF) so that you can pop into any conversation to ask questions or share your experiences.
Primary Myelofibrosis Search
https://connect.mayoclinic.org/search/?search=PMF
Your current hematologist sounds less than inspiring, so I’m glad to read that you’re seeking a 2nd opinion. It’s important to feel that your doctor is an integral part of your care team and not dismissive…just going through the motions.
While it is true that some blood cancers aren’t curable but often there are treatments which can help slow the progression of a disease. Sometimes they become more of a chronic condition we live with. MF doesn’t really have a definitive staging but has categories such as a low, intermediate, or high risk group to evaluate the type of treatment. So the first step is to determine your specific diagnosis.

Were you having symptoms that led to your diagnosis? What were the tests run to help confirm it? Did you have a bone marrow biopsy?

Hi @ruthiek519 ,

Happy belated Birthday despite getting the diagnosis none of us want. I think you will find many helpful people on this site. Lori is especially helpful. 😊
I am similarly frustrated with my situation to yours and my O/H. She told me the only cure for myelofibrosis is a bone marrow transplant but the risks for me doing a BMT right now outweigh the benefits. I am 65 and she first diagnosed me with ET on 1/10/2025 after routine blood work with my new insurance, Medicare Advantage through Kaiser. I had turned 65 and wanted to get a second opinion from another group other than my husband’s work insurance I was on as the hand orthopedist I saw with them did not know what I had in my finger and could only offer exploratory surgery which I did not feel comfortable doing. I needed a better idea of what is causing my very enlarged non-painful right ring finger proximal interphalangeal joint as it interferes with my handwriting. I have no other symptoms and took no meds. (Yes, I still like to write things down and not just put them into the cell phone or computer!)

Here is a summary of my experiences:
1/10/2025 I was told the first time I ever saw an O/H that I had ET as my platelets were very high. I asked her how could she be so sure since so little time frame checking me. She did not like that and did not want entertain my finger issue. I saw their rheumatologist who said she did not know what I had as my JAK2 test was normal. They kept doing checks on me and then my CALR1 mutation was found. So I asked O/H for a bone marrow biopsy thinking maybe that could shed some light on what I might have. She said it was not necessary but decided I could have one. I had also researched that Myelofibrosis and ET could occur with high platelets and CALR mutation. Then 2/10/2025 that O/H sent me a memo that she changed my diagnosis to primary Myelofibrosis because my fibrosis was graded 1-2 of 3 and I have unusual megakyocytes. I asked to see MPN specialist but got told Kaiser does not have one. The best they could do is let me see their bone marrow transplant specialist in Los Angeles. I have an appointment there in August. Strangely enough, taking nothing and doing nothing differently, my platelets dropped by 400 (but still high) and my hemoglobin dropped below normal the day of my bone marrow biopsy on the stat lab they ordered right after implying as the O/H sent in her memo 2/10/2025 that “I might be transitioning from prefibrotic Myelofibrosis”. She decided I could take baby aspirin ( first she said I could not take baby aspirin) as I had not chosen to take the Hydrea she initially prescribed for me, 500 mg twice per day with a follow up lab in two weeks. (For 30 plus years straight, I have weighed 107 plus or minus two pounds. I read that would be a pretty high dose for me to start with and I did not want the side effects.) I have been taking 81mg aspirin. I went for monthly blood labs and mysteriously my hemoglobin went back to normal by doing nothing differently. I just had a lab last week and my hemoglobin still is fine and my platelets are still high. I still have no symptoms and my risk analysis for myelofibrosis came back as low risk and very low risk on two methods that Kaiser measured. So I relate to your frustration!

Did you have the myelofibrosis risk analysis and grading done? If so what is it if you do not mind sharing? Also, what are your platelets, red cells, hemoglobin, and white cells on your lab results?
I hope you are feeling a little more peaceful now and are able to enjoy the Memorial Day holiday weekend. Stay positive!

Hi,
Went through the same thing just this past March. Could not stand my previous hematologist and PA. My Dr was all numbers and could care less how hydrea was making me feel, the PA rolled her eyes Everytime I explained how sick I felt. I started on hydrea January 2024 and feel I lost a year of my life being sick constantly. I cried and laid on the couch a lot because I had no strength and felt like I had the flu everyday. My sister and I would go shopping and out to lunch and it was a total force. I started out on hydrea 7 days a wk, then 5 until I pushed to one day a week and the side effects never stopped. I asked my primary Dr if it would be safe to stop the med until I got an appt with a new oncologist he referred me to and he said there would be no harm because I also continued my baby aspirin which I had taken for over 20 yrs just because it was the thing back then. I stopped hydrea in Feb 2025 and had my appt with the new Dr 4 wks later. That four wks I was still sick as the hydrea left my system. My platelets stayed completely normal at 405. I told my new Dr I will not go back on hydrea and he agrees for now and said let's watch and see and if my platelets start increasing he will research a diff. Med not in the class of hydrea. I have had my platelets checked 4 times since seeing him and last result went down to 392 I was shocked. I researched a lot about ET and found a lot of dietary solutions as well. I drink a qtr glass of mo sugar 100 percent grape juice every morning and drink green every morning plus when I am really thirsty pure cranberry juice in carb water. I eat a small piece of 70 percent or higher dark chocolate and I watch the rest of my diet around 50 percent. Grape juice is known to help prevent stickiness of the platelets and the other drinks and chocolate are known to decrease platelets. I really like this new Dr and he is easy to talk to as well as his PA. I know he would like me to be on a med but understands how bad I felt on hydrea so for now we wait and I hope this continues well with the dietary changes I made plus a lot of prayers. Hope you find someone new that you feel comfortable with and you feel better. Janet