What are treatments for myelofibrosis?

As of last Tuesday we are moving my CBCs out to 2 weeks. This will lower my candy bill since I always take a box of candy to be shared by those folks that have been so good to me.

I have had high triglycerides for forty years a low HDL. In my case, it had not been related to my two year stint with Myelofibrosis. My dad also had high triglycerides, so I think it was congenital. I take treatment for it and it’s much lower but still above normal.

What treatment are you taking? Something other than, or in addition to, a statin?

Welcome to Connect @chrisgray. You’re right, there is a lot to take in when you have a new diagnosis. So I’m glad to see you here in Mayo Connect where you’ll be able to talk with others who also have myelofibrosis.

To get you started, here are a couple of articles I usually share as a good primers for what’s going on in the body when there is a diagnosis of MF.

From Mayo: https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057

From Verywellhealth.com
https://www.verywellhealth.com/myelofibrosis-7562192
You might also be interested in this related discussion
- Myelofibrosis: https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/

This condition is often slow to develop. I’d take it as an encouraging sign that your doctor is considering lowering your dosage of Jakafi. That would indicate that you’re responding well to treatment. It isn’t uncommon to have lower blood counts while taking Jakafi. But your doctor will be monitoring those with the continued routine labs.
How are you doing on the Jakafi…any side effects?

Nice to have the time between labs extended! That’s also a vote of confidence from your doctor that you’re doing well!!

Down to every two weeks now, their waistlines will thank you! 😅 You’re so sweet to bring candy to your appointments. I often do that too and it’s a day brightener all the way around, isn’t it?

I hope you can trust the doctors to help you. Did you have ET first and for how long?

Thanks katgob. Sorry for delay. So much going on. My wife is a good candidate for transplant . We were called by transplant team at moffitt and asked to come in to meet. They are checking into donations list. A few weeks later we were told they have 3 candidates. Two have been checked out-good results! Last is still being checked. Our two adult children will also be checked (just in case). We are awaiting next indication of moving forward. In meantime they want her to start ojjarra. Prayers for all of you. Thank you for you’re response katgob!

Can I ask if you’ve been diagnosed with an enlarged spleen? Thanks

My spleen was so large that they were going to radiate it and the next step was a Splenectomy. Then they tried Vonjo and it shrunk my spleen down very quickly.

My husband: MF and ET diagnosed 25 years ago at age 40.

I lead with this because at the time life expectancy was 8 years, he is now 65 and he has never stopped working. His spleen is a bit enlarged (since first dxd) and so is his liver. He is on no treatment except Anegrelide for the ET. He did start eating more healthy.

He was first dxd with ET (Essential thrombocythemia - platelets grew to a 1.3 M. His "Boston" Chief of Hematology couldn't get a BMB with two tries - when I asked to get another doctor to do it he said, "He doesn't really need one....When and if he gets MF, I can tell through blood tests.....AND, Do you want me to be the laughing stock of the hospital?"

With that, we went to NYC and saw super specialist Dr. Silver who easily did the BMB and we walked around enjoying NYC all day. The BMB confirmed MF. Dr. Silver suggested a BMT.

After seeing Dr. Silver, my husband left the "Narcissistic Harvard Teaching Hospital Hematologist" and started seeing Dr. Stone at Dana Farber - what a God send. Stone thought it was too soon to have a BMT, but suggested that we speak to the BMT depts at 3 of the major hospitals in Boston. We did and put his name on the transplant list as his only sibling was not a match. We didn't have to decide until a match was found. I read all the MF BMT support group messages there were at the time...lots of tears. No match ever came.

At that time blood tests didn't show up on graphs making it difficult to follow blood counts and cell shapes over time, so I created my own on Excel and shared it with the doctors. Looking at the graph helped us feel at ease...sometimes the numbers go off, but then they would become "better".

All this said boils down to these message boards helped us push for more and better answers; asking for more testing and the latest options. Sometimes I get overwhelmed and scared with info from message boards. So I leave the reading for another day.

Kathy