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.
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.
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?
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’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.
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.
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.
Thanks for your reply. I am glad your husband and you feel comfortable with your husband’s diagnosis and found the right specialist. I do not think I have and really do not know how to find one with the Medicare Advantage Plan I chose and perhaps there is not one in a any Medicare Advantage Plan here that I could change to for the duration of the year as I am stuck in one until January 1, 2026.
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.
1pearl, Having faith in your healthcare provider is a great comfort when navigating conditions. I was diagnosed with Polycythemia Vera (PV) in 2018 after a routine blood test. PV is a nasty family relative of ET. I was referred to a cancer care center for more testing. I dreaded walking into a place called the "Cancer Treatment Center." I had the most detailed blood test of my life. I am now on Hydroxyurea 500 mg once a day with baby aspirin every day. I am blessed to have excellent care in my treatment plans and doctors. I turned 65 last year and chose not to enroll in a Medicare Advantage Plan. My hospital, Baptist Health in Elizabethtown, Ky, had a great battle with Medicare Advantage Plans, which resulted in many doctors being marooned on the "out of network" island. My suggestion is to search for doctors that you feel are knowledgeable. Having a feeling of confidence in my treatment has made all the difference. I wish you all the best from the heartland of America, Kentucky.
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 @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite beaches…which I’m missing right now while looking at the several new inches of out my window! 😅
Having lymphoma and myelofibrosis is a double whammy impacting your immune system’s ability to fight off infections. The HU, will also lower some of your blood numbers, including those all important lymphocytes which fight cancer, foreign viruses and bacteria. So extra precautions can be helpful when trying to stay healthy
You’re enjoying an active and happy lifestyle and that’s really a key to staying positive. Avoiding exposure to infections is a big part of staying healthy when our immune systems are compromised. Not always that easy when we want to be out and about with friends, staying involved.
I mask when out in crowded public places such as grocery stores, meetings, elevators…and intimate settings with family, especially with children around. Opting for less busy times at restaurants is helpful and also avoiding buffet type settings where masses of people have touched the serving spoons or a risk of the food not being kept at an optimal temperature.
I frequently wash my hands and carry a small bottle of hand sanitizer when I can’t. I’m not OCD about it, but if I’m touching door knobs, shopping cart handles, raw food packages, that type of thing, I’ll do a little squirt. Also avoid touching your face is another trick to avoid getting sick.
For UTIs, those things are pesky. I’m sure you already know to drink plenty of water daily. I find that I can drink room temperature water in much greater volumes than if it’s iced. It’s processed easier by the body too. I have a friend plagued by UTIs and at her doctor’s recommendation she’s now taking supplements from https://uqora.com/
Knock on wood, this seems to be helping her. So you might want to look into those products.
And of course, a healthy diet of fresh veggies & fruits high in antioxidants along with lean proteins and avoiding excess sugar helps our body stay in fighting mode. Gut health is also a huge factor in our overall well-being. Try adding a cup of fat free, culture rich, Greek yogurt daily. Avoid the fruit added type because of the large amount of sugar. You can add your own fruit or a small dab of fig jam, blueberry preserves, etc., to make it more palatable.
And lastly, spend time walking those glorious dunes in the fresh air and sunshine! Are you near the ocean?
Hi @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite beaches…which I’m missing right now while looking at the several new inches of out my window! 😅
Having lymphoma and myelofibrosis is a double whammy impacting your immune system’s ability to fight off infections. The HU, will also lower some of your blood numbers, including those all important lymphocytes which fight cancer, foreign viruses and bacteria. So extra precautions can be helpful when trying to stay healthy
You’re enjoying an active and happy lifestyle and that’s really a key to staying positive. Avoiding exposure to infections is a big part of staying healthy when our immune systems are compromised. Not always that easy when we want to be out and about with friends, staying involved.
I mask when out in crowded public places such as grocery stores, meetings, elevators…and intimate settings with family, especially with children around. Opting for less busy times at restaurants is helpful and also avoiding buffet type settings where masses of people have touched the serving spoons or a risk of the food not being kept at an optimal temperature.
I frequently wash my hands and carry a small bottle of hand sanitizer when I can’t. I’m not OCD about it, but if I’m touching door knobs, shopping cart handles, raw food packages, that type of thing, I’ll do a little squirt. Also avoid touching your face is another trick to avoid getting sick.
For UTIs, those things are pesky. I’m sure you already know to drink plenty of water daily. I find that I can drink room temperature water in much greater volumes than if it’s iced. It’s processed easier by the body too. I have a friend plagued by UTIs and at her doctor’s recommendation she’s now taking supplements from https://uqora.com/
Knock on wood, this seems to be helping her. So you might want to look into those products.
And of course, a healthy diet of fresh veggies & fruits high in antioxidants along with lean proteins and avoiding excess sugar helps our body stay in fighting mode. Gut health is also a huge factor in our overall well-being. Try adding a cup of fat free, culture rich, Greek yogurt daily. Avoid the fruit added type because of the large amount of sugar. You can add your own fruit or a small dab of fig jam, blueberry preserves, etc., to make it more palatable.
And lastly, spend time walking those glorious dunes in the fresh air and sunshine! Are you near the ocean?
Thank you, Lori, for your response and suggestions. It’s so gratifying and comforting to now be part of a group that understands the ins and outs of myelofibrosis.
I’ve been dealing with the UTIs for years, taking methenamine twice a day; until this year it has kept the UTIs at bay but I guess with the cancer it’s not quite enough. I will try to follow your precautions more closely and switch to tepid water instead of ice water. And I’ll enjoy the dunes as often as possible - wish you could join me!
Thanks for being a new friend through this.
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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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2 ReactionsNo 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.
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?
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’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?
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.
-
Like -
Helpful -
Hug
2 ReactionsHi dax1million,
Thanks for your reply. I am glad your husband and you feel comfortable with your husband’s diagnosis and found the right specialist. I do not think I have and really do not know how to find one with the Medicare Advantage Plan I chose and perhaps there is not one in a any Medicare Advantage Plan here that I could change to for the duration of the year as I am stuck in one until January 1, 2026.
1pearl, Having faith in your healthcare provider is a great comfort when navigating conditions. I was diagnosed with Polycythemia Vera (PV) in 2018 after a routine blood test. PV is a nasty family relative of ET. I was referred to a cancer care center for more testing. I dreaded walking into a place called the "Cancer Treatment Center." I had the most detailed blood test of my life. I am now on Hydroxyurea 500 mg once a day with baby aspirin every day. I am blessed to have excellent care in my treatment plans and doctors. I turned 65 last year and chose not to enroll in a Medicare Advantage Plan. My hospital, Baptist Health in Elizabethtown, Ky, had a great battle with Medicare Advantage Plans, which resulted in many doctors being marooned on the "out of network" island. My suggestion is to search for doctors that you feel are knowledgeable. Having a feeling of confidence in my treatment has made all the difference. I wish you all the best from the heartland of America, Kentucky.
-
Like -
Helpful -
Hug
2 ReactionsHi @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite beaches…which I’m missing right now while looking at the several new inches of out my window! 😅
Having lymphoma and myelofibrosis is a double whammy impacting your immune system’s ability to fight off infections. The HU, will also lower some of your blood numbers, including those all important lymphocytes which fight cancer, foreign viruses and bacteria. So extra precautions can be helpful when trying to stay healthy
You’re enjoying an active and happy lifestyle and that’s really a key to staying positive. Avoiding exposure to infections is a big part of staying healthy when our immune systems are compromised. Not always that easy when we want to be out and about with friends, staying involved.
I mask when out in crowded public places such as grocery stores, meetings, elevators…and intimate settings with family, especially with children around. Opting for less busy times at restaurants is helpful and also avoiding buffet type settings where masses of people have touched the serving spoons or a risk of the food not being kept at an optimal temperature.
I frequently wash my hands and carry a small bottle of hand sanitizer when I can’t. I’m not OCD about it, but if I’m touching door knobs, shopping cart handles, raw food packages, that type of thing, I’ll do a little squirt. Also avoid touching your face is another trick to avoid getting sick.
For UTIs, those things are pesky. I’m sure you already know to drink plenty of water daily. I find that I can drink room temperature water in much greater volumes than if it’s iced. It’s processed easier by the body too. I have a friend plagued by UTIs and at her doctor’s recommendation she’s now taking supplements from https://uqora.com/
Knock on wood, this seems to be helping her. So you might want to look into those products.
And of course, a healthy diet of fresh veggies & fruits high in antioxidants along with lean proteins and avoiding excess sugar helps our body stay in fighting mode. Gut health is also a huge factor in our overall well-being. Try adding a cup of fat free, culture rich, Greek yogurt daily. Avoid the fruit added type because of the large amount of sugar. You can add your own fruit or a small dab of fig jam, blueberry preserves, etc., to make it more palatable.
And lastly, spend time walking those glorious dunes in the fresh air and sunshine! Are you near the ocean?
-
Like -
Helpful -
Hug
2 ReactionsThank you, Lori, for your response and suggestions. It’s so gratifying and comforting to now be part of a group that understands the ins and outs of myelofibrosis.
I’ve been dealing with the UTIs for years, taking methenamine twice a day; until this year it has kept the UTIs at bay but I guess with the cancer it’s not quite enough. I will try to follow your precautions more closely and switch to tepid water instead of ice water. And I’ll enjoy the dunes as often as possible - wish you could join me!
Thanks for being a new friend through this.
-
Like -
Helpful -
Hug
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