Welcome to Mayo Connect, @chrisatwell. We all occasionally need a lifeline. And sometimes all it takes to bring comfort and encouragement is to know that others are going through the same thing we are. I’m so glad you’re here!
Would you like to share a little more about your story? Were you also diagnosed with myelofibrosis?
Thank you.
I will be 69 years old next month and was diagnosed with PMF in January. My spleen is already 19 cm as is my liver as well. I have varying but constant abdominal pain/discomfort. My doctor prescribed hydroxyurea last month and it seems to be starting to help as my pain level is coming down.
I have sporadic fatigue. Some days it's hard to get anything done. My only other bother is diarrhea.
I also have Type 2 Diabetes which pretty much dictates what and when I eat.
I'm trying to maintain a positive attitude but it's a challenge some days. @dunewalker 's message was a helpful reminder to keep up a proper perspective.
Welcome to Mayo Connect, @chrisatwell. We all occasionally need a lifeline. And sometimes all it takes to bring comfort and encouragement is to know that others are going through the same thing we are. I’m so glad you’re here!
Would you like to share a little more about your story? Were you also diagnosed with myelofibrosis?
I was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with no side effects, feeling remarkably good, have labs done every two months. I’m 83, active and thankful for this platform with which to raise awareness and questions.
Try to continue your usual activities and enjoy life. This diagnosis does not define you; it’s just a bump in the road. Stay positive and thankful and you can handle whatever comes. Of all the kinds of cancers out there, myelofibrosis is not a bad one to have.
I was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with no side effects, feeling remarkably good, have labs done every two months. I’m 83, active and thankful for this platform with which to raise awareness and questions.
Try to continue your usual activities and enjoy life. This diagnosis does not define you; it’s just a bump in the road. Stay positive and thankful and you can handle whatever comes. Of all the kinds of cancers out there, myelofibrosis is not a bad one to have.
Hi @wellness3070. I'd also like to introduce you to other members who have myelofibrosis or are caring for a family member who does. @rcand10s@gael and @bjsdancer will you join us in welcoming our newest member?
Wellness, I echo Teresa's question. When were you diagnosed? Are you in treatment?
I have had Pilycthemia Vera for almost 20 years. It’s now has changed to Myelofbrosis. Just looking for people that has this as well and how are they dealing with it.
Like you, I was initially diagnosed with PV about 6 years ago. My Doctor, at the time, prescribed Hydroxyurea but I was not able to tolerate the drug. Another bone marrow aspiration was ordered and the diagnosis was changed from PV to Myelofibrosis. I changed doctors and for three years I took no drugs; the doctor just monitored my blood counts. However, platelets started to rise and two years ago I started Jakafi ... I just turned 74. The drug worked for me but my HBC is low, causing fatigue. My doctor wants me to consider changing from Jakafi to Ojjaara. Ojjaara has helped some patients improve hemoglobin levels.
We shall see, best of luck to you.
The local clinic (Sarah Cannon) is closing so I am changing doctors again. Will discuss the suggested change in drug treatment with new doc. I have good and bad days ... sunshine and mild weather helps.
Thanks as I did not seem to find your other messages. I will check out what you mentioned. I am located in Southern California, near San Diego in a much smaller town.
I see my additional messages may not have reached you.
Go to pvreporter . com. There is a list of MPN specialists there. Also Facebook has two support groups called Myelofibrosis Support Group. Each has many people like you and I and a great source of information. Healthtree.org is also informative as is MPN advocacy.com. I attended one of their events while in Tampa and it was outstanding. I especially like online presentations by Gaby Hobbs, an MPN specialist in Boston. She explains MF the best. Hang in there. It gets a little more easy to bear with knowledge. BTW. where are you located?
Thanks as I did not seem to find your other messages. I will check out what you mentioned. I am located in Southern California, near San Diego in a much smaller town.
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Thank you.
I will be 69 years old next month and was diagnosed with PMF in January. My spleen is already 19 cm as is my liver as well. I have varying but constant abdominal pain/discomfort. My doctor prescribed hydroxyurea last month and it seems to be starting to help as my pain level is coming down.
I have sporadic fatigue. Some days it's hard to get anything done. My only other bother is diarrhea.
I also have Type 2 Diabetes which pretty much dictates what and when I eat.
I'm trying to maintain a positive attitude but it's a challenge some days. @dunewalker 's message was a helpful reminder to keep up a proper perspective.
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3 ReactionsYou’re welcome.
And, yes, He has.
🤗💕
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2 ReactionsWelcome to Mayo Connect, @chrisatwell. We all occasionally need a lifeline. And sometimes all it takes to bring comfort and encouragement is to know that others are going through the same thing we are. I’m so glad you’re here!
Would you like to share a little more about your story? Were you also diagnosed with myelofibrosis?
Thank you. I needed to hear this today. God bless.
My husband is finishing his first 7 day rd Vicaba. We are real apprehensive about what happens now. Any thoughts on this.
I was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with no side effects, feeling remarkably good, have labs done every two months. I’m 83, active and thankful for this platform with which to raise awareness and questions.
Try to continue your usual activities and enjoy life. This diagnosis does not define you; it’s just a bump in the road. Stay positive and thankful and you can handle whatever comes. Of all the kinds of cancers out there, myelofibrosis is not a bad one to have.
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Hug
5 ReactionsI was recently diagnosed. I am 55 and starting Jakafi. I'm feeling ok just blindsided by this diagnosis.
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1 ReactionLike you, I was initially diagnosed with PV about 6 years ago. My Doctor, at the time, prescribed Hydroxyurea but I was not able to tolerate the drug. Another bone marrow aspiration was ordered and the diagnosis was changed from PV to Myelofibrosis. I changed doctors and for three years I took no drugs; the doctor just monitored my blood counts. However, platelets started to rise and two years ago I started Jakafi ... I just turned 74. The drug worked for me but my HBC is low, causing fatigue. My doctor wants me to consider changing from Jakafi to Ojjaara. Ojjaara has helped some patients improve hemoglobin levels.
We shall see, best of luck to you.
The local clinic (Sarah Cannon) is closing so I am changing doctors again. Will discuss the suggested change in drug treatment with new doc. I have good and bad days ... sunshine and mild weather helps.
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Helpful -
Hug
1 Reactionno need, I repeated the info in my prior message.
Hi ideachaser1,
Thanks as I did not seem to find your other messages. I will check out what you mentioned. I am located in Southern California, near San Diego in a much smaller town.