This was an encouraging update, @snakebite! Thank you for sharing. Little moments like this can offer so much hope to others who have been diagnosed with MF and concerned about treatments!
Do you still have weekly CBCs or is your leash a little longer now between appointments?
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.
I'm new to this page and to the disease. I'm on 20 mg Jakafi though they are talking about reducing it to 10mg. One doctor is encouraging me to consider transplant but I am 75, almost 76 and it sounds really scary if I could have a somewhat quality life with just medication. I just don't know for how long. Too much to take in for now. I need to do some more research and learn more about my own disease. Platelets have been over 1000 but are back to 400. Now red blood cell counts are low though white is still high. I just have to trust that the doctors know what to do.
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.
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?
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.
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'm new to this page and to the disease. I'm on 20 mg Jakafi though they are talking about reducing it to 10mg. One doctor is encouraging me to consider transplant but I am 75, almost 76 and it sounds really scary if I could have a somewhat quality life with just medication. I just don't know for how long. Too much to take in for now. I need to do some more research and learn more about my own disease. Platelets have been over 1000 but are back to 400. Now red blood cell counts are low though white is still high. I just have to trust that the doctors know what to do.
jseeker.
Have you message The Moffitt center or her current dr for help with this symptom? I know someone else will reply, but i also wanted to ask if your wife had been offered a transplant on the original MDS diagnosis? Treatments have changed a bunch in 10 years.
myelofibrosis- So much info was posted by Lori and others in the upper comments. I also want to add, what is normal? Some have few symptoms, and others a host of different one.
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!
Just a update on my post of Jul 10,2024. It is now1/31/2025. I am still taking the Ojjaara. I take nothing else. I've had a CBC every week, and they are all great! Who knows how long this will last, but for now things are great!
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.
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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.
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1 ReactionI 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?
-
Like -
Helpful -
Hug
1 ReactionNice 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?
-
Like -
Helpful -
Hug
1 ReactionI 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