Hello, I also have primary Myelofibrosis. I had been suffering from my left hip for quite some time and last January I was told that it was not a worn out hip but Myelofibrosis. My spleen was extremely large. It was in my pelvis. I then started with ruxolitinib (Jakavi) 30 mg per day. That was too large a dose. My kidney function deteriorated. Now that it has been adjusted, my kidney function is stable, but my Hb is low. My wife is a foot reflexologist and she gives me a foot massage every week. This helps a lot, the pain in my hip is completely gone and comes back a bit after 6 days. I am currently still at home and the hematologist/oncologist does not allow me to work. At the end of June 2024 I have to go to the hospital again for a physical appointment. My blood is checked every month and the next day the doctor calls me about the results and what should be done. I wish you much strength and many more good years. I'm from the Netherlands.
Thank You for sharing its very helpful to others. I myself suffer with Polycythemia Vera with 2 fibrosis. My CBC (blood test) is stable with Pegasys Interferon.
Hi Joseph great to here your story I have Myelofibrosis for 6 years and my drug i am useing roxollotiniband I have some good and days but main I am managing my condition ok living in Ireland try to explain to people what I have is rare blood condition but again it’s good keep safe
No symptoms is strange. My Husband had flu like symptoms aching bones generally feeling unwell. He battled this for 4 years 4 months. Like you said everybody is different. All the best...
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My dad fought this diagnosis for three years. May you continue to do well and enjoy life.
It's amazing that you had no symptoms with critically low hemoglobin!
Thank you for sharing Joseph. Every story can help someone 😊
Love this guy! May God continue to bless you, sir!🙏🏼🩵
🤍 thank you for sharing Joseph.
My mom fought this disease for a few years before it was just too much. Glad to hear some doing well against it.
Thank you Joseph for telling your story so clearly and wonderfully well. May Pops keep you strong and happy. Love from Australia
Hello, I also have primary Myelofibrosis. I had been suffering from my left hip for quite some time and last January I was told that it was not a worn out hip but Myelofibrosis. My spleen was extremely large. It was in my pelvis. I then started with ruxolitinib (Jakavi) 30 mg per day. That was too large a dose. My kidney function deteriorated. Now that it has been adjusted, my kidney function is stable, but my Hb is low.
My wife is a foot reflexologist and she gives me a foot massage every week. This helps a lot, the pain in my hip is completely gone and comes back a bit after 6 days. I am currently still at home and the hematologist/oncologist does not allow me to work. At the end of June 2024 I have to go to the hospital again for a physical appointment. My blood is checked every month and the next day the doctor calls me about the results and what should be done. I wish you much strength and many more good years. I'm from the Netherlands.
Very good advice to be proactive re your health and just being as physically active as possible
Thank You for sharing its very helpful to others. I myself suffer with Polycythemia Vera with 2 fibrosis. My CBC (blood test) is stable with Pegasys Interferon.
Hi Joseph great to here your story I have Myelofibrosis for 6 years and my drug i am useing roxollotiniband I have some good and days but main I am managing my condition ok living in Ireland try to explain to people what I have is rare blood condition but again it’s good keep safe
No symptoms is strange. My Husband had flu like symptoms aching bones generally feeling unwell. He battled this for 4 years 4 months. Like you said everybody is different. All the best...
On support group there are a lot of folks that did not and do not have symptoms.
I am glad Joseph is doing great, but i think it’s not just the exercising, sun exposure is also very important, and if barefoot even more!
Imetelstat (Geron Corp)
❤
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