Hi,
I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to not even be too sure. Honestly, I think I really need to change doctors and start all over on all this which just started for me from blood lab work in mid December 2024. I have no symptoms still but do have elevated platelets for which now she decided I could take baby aspirin. I do have some undetermined form of non painful arthritis for about five years now with two very enlarged non painful joints in my right ring finger and right sterno-clavicular joint which other docs have just said is arthritis and blown it off. I have no other health issues and consider myself very healthy. My chief complaint when I first went to doctor (using this new Medicare Advantage Plan I chose when I recently turned 65) December 16, 2024 was to determine a diagnosis with possible treatment plan for my strange big joints but that has not happened. Instead I am told I have rare blood cancer! My question is how others have been diagnosed and feel comfortable that they have an accurate diagnosis of these conditions. Personally, I do not feel comfortable at all but feel more needs to be checked before plugging in a diagnostic code for me. Thanks for listening and anything you feel comfortable sharing about your experience.
My husband was diagnosed with myelofibrosis about a month and half ago. During a blood work up he had blood cells showing crazy cells and was sent to oncologist and hematologists, which sent him for a bone marrow biopsy. This did confirm he has myelofibrosis. I think when you get to the right specialist in this rare blood disease you will get the right answers and it will help you understand what is happening. I think sooner than later.
I’m a 83-year-old female, diagnosed with lymphoma and myelofibrosis (JAK2 mutation) in June of 2024. I’ve been taking hydroxyurea (oral chemo) and continue to live an active and happy life.
I do tire easily and have had two infections already in 2025 (UTI and sinus) so doctor added Vitamin D to my other meds.
Should I be doing more to prevent further infections?
Hi,
I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to not even be too sure. Honestly, I think I really need to change doctors and start all over on all this which just started for me from blood lab work in mid December 2024. I have no symptoms still but do have elevated platelets for which now she decided I could take baby aspirin. I do have some undetermined form of non painful arthritis for about five years now with two very enlarged non painful joints in my right ring finger and right sterno-clavicular joint which other docs have just said is arthritis and blown it off. I have no other health issues and consider myself very healthy. My chief complaint when I first went to doctor (using this new Medicare Advantage Plan I chose when I recently turned 65) December 16, 2024 was to determine a diagnosis with possible treatment plan for my strange big joints but that has not happened. Instead I am told I have rare blood cancer! My question is how others have been diagnosed and feel comfortable that they have an accurate diagnosis of these conditions. Personally, I do not feel comfortable at all but feel more needs to be checked before plugging in a diagnostic code for me. Thanks for listening and anything you feel comfortable sharing about your experience.
I am new to this site and having some difficulty following threads, but my husband was recently diagnosed with Myelofibrosis and we are not thrilled with the doctor we are seeing. We are in New York (LI) and just wondering if anyone on here has someone they think is good.
Welcome, @cher273. It's important to have confidence in your care team. If you would like to consider a second opinion with Mayo Clinic experts, you can self-refer here: http://mayocl.in/1mtmR63
What is the treatment plan for your husband as the moment? How are you both doing?
Sharon thank you for your response. It does sound like you are doing well. Are you by chance in the JNJ trial or the Incyte trial targeting the CALR mutation?
The Incyte trial is not yet recruiting where I am and is the only one near me but I’m working at getting on the list in multiple ways. Cross your fingers for me. Both of these trials seem to be showing promise.
I am new to this site and having some difficulty following threads, but my husband was recently diagnosed with Myelofibrosis and we are not thrilled with the doctor we are seeing. We are in New York (LI) and just wondering if anyone on here has someone they think is good.
There is a Facebook group called Myelofibrosis Support Group with almost 2000 members. If you don’t get an answer here I’m sure someone can help you there.
Good luck and God bless.
Hi ideachaser1, I was diagnosed with Primary MF/CALR July 2023. Although I didn't know about the CALR mutation until a year later. In September 2023 I applied for a clinical trial at Mayo. Its suppose to help my anemia--when I started the trial my hemoglobin was a 7, my hemoglobin fluctuates, but it has never been lower then 8.5. In January of this year I was a 10--that's the highest. So I believe it is working. Also I'm on Jakifi 10mg 2x's a day, which lowers my hemoglobin. Anyway, I looked at the website and contacted the lead research doctor and after some testing became part of the trail. So sometimes you have to advocate for yourself as my main home clinic doctor was not an advocate and is a kind of a wait and see type doctor. Hopefully your doc's will be different.
Sharon thank you for your response. It does sound like you are doing well. Are you by chance in the JNJ trial or the Incyte trial targeting the CALR mutation?
The Incyte trial is not yet recruiting where I am and is the only one near me but I’m working at getting on the list in multiple ways. Cross your fingers for me. Both of these trials seem to be showing promise.
I am new to this site and having some difficulty following threads, but my husband was recently diagnosed with Myelofibrosis and we are not thrilled with the doctor we are seeing. We are in New York (LI) and just wondering if anyone on here has someone they think is good.
As a toy designer, now retired, I was always chasing the next idea. Thank you for the website.
I will be discussing clinical trials next week with both my MPN specialist and oncologist.
Hi ideachaser1, I was diagnosed with Primary MF/CALR July 2023. Although I didn't know about the CALR mutation until a year later. In September 2023 I applied for a clinical trial at Mayo. Its suppose to help my anemia--when I started the trial my hemoglobin was a 7, my hemoglobin fluctuates, but it has never been lower then 8.5. In January of this year I was a 10--that's the highest. So I believe it is working. Also I'm on Jakifi 10mg 2x's a day, which lowers my hemoglobin. Anyway, I looked at the website and contacted the lead research doctor and after some testing became part of the trail. So sometimes you have to advocate for yourself as my main home clinic doctor was not an advocate and is a kind of a wait and see type doctor. Hopefully your doc's will be different.
Welcome to Connect @ideachaser1 First, I just have to say your @name is inspiring! Idea Chaser! ☺️
While you’re waiting for others with MF/CALR mutation to join the conversation about participating in clinical trials, I’m posting the National Institute of Health website for Clinical Trials https://clinicaltrials.gov/search?cond=CALR%2B
Have you discussed joining a trial with your hematologist oncologist? Are you currently in a treatment plan?
As a toy designer, now retired, I was always chasing the next idea. Thank you for the website.
I will be discussing clinical trials next week with both my MPN specialist and oncologist.
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My husband was diagnosed with myelofibrosis about a month and half ago. During a blood work up he had blood cells showing crazy cells and was sent to oncologist and hematologists, which sent him for a bone marrow biopsy. This did confirm he has myelofibrosis. I think when you get to the right specialist in this rare blood disease you will get the right answers and it will help you understand what is happening. I think sooner than later.
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Helpful -
Hug
2 ReactionsI’m a 83-year-old female, diagnosed with lymphoma and myelofibrosis (JAK2 mutation) in June of 2024. I’ve been taking hydroxyurea (oral chemo) and continue to live an active and happy life.
I do tire easily and have had two infections already in 2025 (UTI and sinus) so doctor added Vitamin D to my other meds.
Should I be doing more to prevent further infections?
Hi,
I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to not even be too sure. Honestly, I think I really need to change doctors and start all over on all this which just started for me from blood lab work in mid December 2024. I have no symptoms still but do have elevated platelets for which now she decided I could take baby aspirin. I do have some undetermined form of non painful arthritis for about five years now with two very enlarged non painful joints in my right ring finger and right sterno-clavicular joint which other docs have just said is arthritis and blown it off. I have no other health issues and consider myself very healthy. My chief complaint when I first went to doctor (using this new Medicare Advantage Plan I chose when I recently turned 65) December 16, 2024 was to determine a diagnosis with possible treatment plan for my strange big joints but that has not happened. Instead I am told I have rare blood cancer! My question is how others have been diagnosed and feel comfortable that they have an accurate diagnosis of these conditions. Personally, I do not feel comfortable at all but feel more needs to be checked before plugging in a diagnostic code for me. Thanks for listening and anything you feel comfortable sharing about your experience.
Welcome, @cher273. It's important to have confidence in your care team. If you would like to consider a second opinion with Mayo Clinic experts, you can self-refer here: http://mayocl.in/1mtmR63
What is the treatment plan for your husband as the moment? How are you both doing?
No I am on the DISC-0974 trial. It mostly is targeting anemia, but in my case the Jakafi (Incyte drug) seems to fight with the trail drug.
There is a Facebook group called Myelofibrosis Support Group with almost 2000 members. If you don’t get an answer here I’m sure someone can help you there.
Good luck and God bless.
-
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Helpful -
Hug
2 ReactionsSharon thank you for your response. It does sound like you are doing well. Are you by chance in the JNJ trial or the Incyte trial targeting the CALR mutation?
The Incyte trial is not yet recruiting where I am and is the only one near me but I’m working at getting on the list in multiple ways. Cross your fingers for me. Both of these trials seem to be showing promise.
I am new to this site and having some difficulty following threads, but my husband was recently diagnosed with Myelofibrosis and we are not thrilled with the doctor we are seeing. We are in New York (LI) and just wondering if anyone on here has someone they think is good.
Hi ideachaser1, I was diagnosed with Primary MF/CALR July 2023. Although I didn't know about the CALR mutation until a year later. In September 2023 I applied for a clinical trial at Mayo. Its suppose to help my anemia--when I started the trial my hemoglobin was a 7, my hemoglobin fluctuates, but it has never been lower then 8.5. In January of this year I was a 10--that's the highest. So I believe it is working. Also I'm on Jakifi 10mg 2x's a day, which lowers my hemoglobin. Anyway, I looked at the website and contacted the lead research doctor and after some testing became part of the trail. So sometimes you have to advocate for yourself as my main home clinic doctor was not an advocate and is a kind of a wait and see type doctor. Hopefully your doc's will be different.
-
Like -
Helpful -
Hug
3 ReactionsAs a toy designer, now retired, I was always chasing the next idea. Thank you for the website.
I will be discussing clinical trials next week with both my MPN specialist and oncologist.
-
Like -
Helpful -
Hug
2 Reactions