I was diagnosed with MF last month. I am in Phase I (no fibrotic tissue yet, but my numbers are all off in terms of RBC, Hemoglobin, WBC etc.). She is recommending Interferon to bring the disease into a remission-like state - Apparently Interferon can bring all blood counts back to normal. Anyone else's Dr. recommend this course of treatment?
Welcome to Connect @rhollis I think a good place to begin this morning is with a little information about Myelofibrosis. It’s one of a group of conditions called MPNs or Myeloproliferative neoplasms. It’s a mouthful, but basically these disorders impact the bone marrow and affecting blood cell production. It causes abnormal development and function of bone marrow cells, leading to scar tissues. That’s the myelofibrosis element.
Here are two good articles for you to read which break down the disease and the potential treatments. I think it helps to learn as much as you can about a new diagnosis from reputable sources.
There are a number of members with MPNs who take Pegasys or Besremi for their blood conditions such as Polycythemia vera (excess red cells) or ET (excess platelets). I found several comments…too many to list here. But you can easily find the replies by typing in either Pegasys or Besremi (one at a time) in the search bar at the top of the page! That way you’ll see a listing of all the conversations with those words.
In answer to your question about a Stem Cell transplant. At this time it is the only curative treatment for MF. The process is challenging and recovery can be lengthy. But whether you’ll eventually require one is something that needs to be discussed with your hematologist oncologist. Insurance usually covers a SCT. But that’s putting the cart before the horse right now. The meds may keep your disease from progressing.
Where you having symptoms that led to your diagnosis?
Welcome to Connect @rhollis I think a good place to begin this morning is with a little information about Myelofibrosis. It’s one of a group of conditions called MPNs or Myeloproliferative neoplasms. It’s a mouthful, but basically these disorders impact the bone marrow and affecting blood cell production. It causes abnormal development and function of bone marrow cells, leading to scar tissues. That’s the myelofibrosis element.
Here are two good articles for you to read which break down the disease and the potential treatments. I think it helps to learn as much as you can about a new diagnosis from reputable sources.
There are a number of members with MPNs who take Pegasys or Besremi for their blood conditions such as Polycythemia vera (excess red cells) or ET (excess platelets). I found several comments…too many to list here. But you can easily find the replies by typing in either Pegasys or Besremi (one at a time) in the search bar at the top of the page! That way you’ll see a listing of all the conversations with those words.
In answer to your question about a Stem Cell transplant. At this time it is the only curative treatment for MF. The process is challenging and recovery can be lengthy. But whether you’ll eventually require one is something that needs to be discussed with your hematologist oncologist. Insurance usually covers a SCT. But that’s putting the cart before the horse right now. The meds may keep your disease from progressing.
Where you having symptoms that led to your diagnosis?
For me symptoms have been hair loss, fatigue, and symptoms related to anemia such as some shortness of breath,
I am hopeful that interferon will prevent disease progression.
The blood work was also a tip-off. I had been previously misdiagnosed with ET, as the assumption was made based on CALR without ordering a bone marrow biopsy. I had a bone marrow biopsy in Nov. and it was determined that I have primary MF.
For me symptoms have been hair loss, fatigue, and symptoms related to anemia such as some shortness of breath,
I am hopeful that interferon will prevent disease progression.
The blood work was also a tip-off. I had been previously misdiagnosed with ET, as the assumption was made based on CALR without ordering a bone marrow biopsy. I had a bone marrow biopsy in Nov. and it was determined that I have primary MF.
There have been so many positive changes for MF patients over the past few years with research and development of new treatments options.
I’m hoping you have the same success and there’s no reason to think otherwise. ☺️
I’m glad your doctor went the extra mile and recommended the bone marrow biopsy. This helped get you on the right path to the appropriate treatment to slow or deter any progression of the MF.
Do you know the name of your interferon yet or when you begin the meds?
This is the first discussion I have seen concerning myelofibrosis. I was diagnosed with Primary myelofibrosis in July of 2023 after a bone marrow biopsy and was put on Jakafi in September of that year. My symptoms were an enlarged spleen and anemia, slight fatigue. I am CALR mutation. I have been taking 10mg of Jakafi twice daily since then. As the drug makes my hemoglobin drop, I am in a clinical trial that seems to counter the hemoglobin drop. I was as low as a 7 and my highest was just last month at 9.3. I know I won't be on the clinical trail forever, so wonder what my best course of action would be. My local hematologist, is a wait and see and seems to think the Jakafi is fine, but not sure about the clinical trial. Even though I have read countless articles and joined MPN. It still feels lonely out here.
This is the first discussion I have seen concerning myelofibrosis. I was diagnosed with Primary myelofibrosis in July of 2023 after a bone marrow biopsy and was put on Jakafi in September of that year. My symptoms were an enlarged spleen and anemia, slight fatigue. I am CALR mutation. I have been taking 10mg of Jakafi twice daily since then. As the drug makes my hemoglobin drop, I am in a clinical trial that seems to counter the hemoglobin drop. I was as low as a 7 and my highest was just last month at 9.3. I know I won't be on the clinical trail forever, so wonder what my best course of action would be. My local hematologist, is a wait and see and seems to think the Jakafi is fine, but not sure about the clinical trial. Even though I have read countless articles and joined MPN. It still feels lonely out here.
Hi @sharonm2023. Welcome to Connect. I promise you won’t be alone here! There are quite a few members who have multiple fibrosis or one of the other blood conditions associated with the CALR mutation such as polycythemia vera or essential thrombocythemia.
You may have already read the links to articles I provided for @rhollis in this comment… https://connect.mayoclinic.org/comment/1201587/
If not, take a few minutes to read through.
There are medications available to slow the progress of the fibrosis to the bone marrow, but ultimately, a bone marrow transplant remains the only cure for this condition. A good friend of mine, whom I met while we were both having our bone marrow transplants in 2019, had MF. She is now 5.5 years post transplant like me, and is doing well. Perfectly healthy and no signs of the MF returning.
I know you’re concerned about your hemoglobin levels after you’re out of the clinical trial. That can be a side effect of the disease itself. With a clinical trial you don’t know if you’re on a drug or a placebo. So your blood numbers may not change after you’re out of the trial if you’re on the placebo. Right now, active surveillance would be appropriate until you know. If your numbers start changing in the future and your current hematologist is reluctant to explore any other treatment options, it may be in your best interest to seek 2nd opinion with a larger teaching/research hospital such as Mayo Clinic, Cleveland Clinic for examples…
In the meantime Jakafi is one of the standard medications for MF and has a good track record. Are you having any side effects from the medication?
There have been so many positive changes for MF patients over the past few years with research and development of new treatments options.
I’m hoping you have the same success and there’s no reason to think otherwise. ☺️
I’m glad your doctor went the extra mile and recommended the bone marrow biopsy. This helped get you on the right path to the appropriate treatment to slow or deter any progression of the MF.
Do you know the name of your interferon yet or when you begin the meds?
Thank you, I am hopeful/ encouraged by the progression in medical technology and that I was diagnosed pre-fibrosis.
I have been approved for Pegasys and am also looking into Besremi, although my understanding is that this drug is only available through a Phase III clinical trial that involves double blind placebo. I am trying to get as much information as I can before making a decision without delaying treatment too long.
Thank you, I am hopeful/ encouraged by the progression in medical technology and that I was diagnosed pre-fibrosis.
I have been approved for Pegasys and am also looking into Besremi, although my understanding is that this drug is only available through a Phase III clinical trial that involves double blind placebo. I am trying to get as much information as I can before making a decision without delaying treatment too long.
I have an appointment at Wake Forest in a couple of weeks (which will be a host sight for the clinical trial for Besremi) and I am also exploring having a third set of eyes on my pathology by seeing someone at Mayo or MD Anderson.
I’m interested in hearing about MF patients experience with Ojjaara. I have had MF for over 40(yes 40) years, with no treatment. My doctors are recommending Ojjaara for anemia and spleen size reduction. I’m particularly interested in knowing about side effects. Thank you for your feedback.
I’m interested in hearing about MF patients experience with Ojjaara. I have had MF for over 40(yes 40) years, with no treatment. My doctors are recommending Ojjaara for anemia and spleen size reduction. I’m particularly interested in knowing about side effects. Thank you for your feedback.
JAK2 Myelofibrosis
I have been on Ojjarra for almost three months. It is a half dose (100mg) per day. Next month I will go on a full 200mg dose and will report back.
I have not experienced any adverse effects to date. My spleen pain has gone away. My white count is now upper normal. Still waiting for my platelets to stabilize. They range from 600,000 to 900,000. Maybe the full dose will help with that.
Other than that I feel like nothings wrong. I’m still shocked that I have this disorder.
I feel confident in the hands of the Mayo Clinic expert in Primary Myelofibrosis, Dr. Teffari.
My wife was diagnosed with MDS 10 years ago. In the last year she’s had to undergo treatment once a month. Two months ago we received the news it was either misdiagnosed or it’s mutated into myelo fibrosis. It seems the treatment is mostly the same and only cure is transplant. As her caregiver I’m studying the pamphlet moffitt center gave me. In the last two days she’s had symptoms similar to vertigo with sickness feeling like throwing up anytime she moves her head or body to get up. It lasted 20 minutes or so yesterday and only 10-15 this morning. Does anyone know if this is normal for myelo fibrosis?
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Welcome to Connect @rhollis I think a good place to begin this morning is with a little information about Myelofibrosis. It’s one of a group of conditions called MPNs or Myeloproliferative neoplasms. It’s a mouthful, but basically these disorders impact the bone marrow and affecting blood cell production. It causes abnormal development and function of bone marrow cells, leading to scar tissues. That’s the myelofibrosis element.
Here are two good articles for you to read which break down the disease and the potential treatments. I think it helps to learn as much as you can about a new diagnosis from reputable sources.
The first is from Healthline.com https://www.healthline.com/health/myelofibrosis
~~
The second article is from: blood cancer.org.uk
https://bloodcancer.org.uk/understanding-blood-cancer/myelofibrosis/myelofibrosis-treatment-side-effects/myelofibrosis-treatment/#
Your doctor is suggesting a treatment of Interferon such as Pagasys or Besremi to help slow down the progression of damage to your bone marrow. These are very common medications for the treatment of MPNs and are manufactured copies of natural interferon. It lowers blood counts that are too high, so is more commonly used for low risk and intermediate-1 MF. This is all in the informational sites I posted above.
There are a number of members with MPNs who take Pegasys or Besremi for their blood conditions such as Polycythemia vera (excess red cells) or ET (excess platelets). I found several comments…too many to list here. But you can easily find the replies by typing in either Pegasys or Besremi (one at a time) in the search bar at the top of the page! That way you’ll see a listing of all the conversations with those words.
In answer to your question about a Stem Cell transplant. At this time it is the only curative treatment for MF. The process is challenging and recovery can be lengthy. But whether you’ll eventually require one is something that needs to be discussed with your hematologist oncologist. Insurance usually covers a SCT. But that’s putting the cart before the horse right now. The meds may keep your disease from progressing.
Where you having symptoms that led to your diagnosis?
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1 ReactionThank you for this helpful information @loribmt!
For me symptoms have been hair loss, fatigue, and symptoms related to anemia such as some shortness of breath,
I am hopeful that interferon will prevent disease progression.
The blood work was also a tip-off. I had been previously misdiagnosed with ET, as the assumption was made based on CALR without ordering a bone marrow biopsy. I had a bone marrow biopsy in Nov. and it was determined that I have primary MF.
-
Like -
Helpful -
Hug
1 ReactionThere have been so many positive changes for MF patients over the past few years with research and development of new treatments options.
I’m hoping you have the same success and there’s no reason to think otherwise. ☺️
I’m glad your doctor went the extra mile and recommended the bone marrow biopsy. This helped get you on the right path to the appropriate treatment to slow or deter any progression of the MF.
Do you know the name of your interferon yet or when you begin the meds?
This is the first discussion I have seen concerning myelofibrosis. I was diagnosed with Primary myelofibrosis in July of 2023 after a bone marrow biopsy and was put on Jakafi in September of that year. My symptoms were an enlarged spleen and anemia, slight fatigue. I am CALR mutation. I have been taking 10mg of Jakafi twice daily since then. As the drug makes my hemoglobin drop, I am in a clinical trial that seems to counter the hemoglobin drop. I was as low as a 7 and my highest was just last month at 9.3. I know I won't be on the clinical trail forever, so wonder what my best course of action would be. My local hematologist, is a wait and see and seems to think the Jakafi is fine, but not sure about the clinical trial. Even though I have read countless articles and joined MPN. It still feels lonely out here.
Hi @sharonm2023. Welcome to Connect. I promise you won’t be alone here! There are quite a few members who have multiple fibrosis or one of the other blood conditions associated with the CALR mutation such as polycythemia vera or essential thrombocythemia.
You may have already read the links to articles I provided for @rhollis in this comment… https://connect.mayoclinic.org/comment/1201587/
If not, take a few minutes to read through.
There are medications available to slow the progress of the fibrosis to the bone marrow, but ultimately, a bone marrow transplant remains the only cure for this condition. A good friend of mine, whom I met while we were both having our bone marrow transplants in 2019, had MF. She is now 5.5 years post transplant like me, and is doing well. Perfectly healthy and no signs of the MF returning.
I know you’re concerned about your hemoglobin levels after you’re out of the clinical trial. That can be a side effect of the disease itself. With a clinical trial you don’t know if you’re on a drug or a placebo. So your blood numbers may not change after you’re out of the trial if you’re on the placebo. Right now, active surveillance would be appropriate until you know. If your numbers start changing in the future and your current hematologist is reluctant to explore any other treatment options, it may be in your best interest to seek 2nd opinion with a larger teaching/research hospital such as Mayo Clinic, Cleveland Clinic for examples…
In the meantime Jakafi is one of the standard medications for MF and has a good track record. Are you having any side effects from the medication?
-
Like -
Helpful -
Hug
2 ReactionsThank you, I am hopeful/ encouraged by the progression in medical technology and that I was diagnosed pre-fibrosis.
I have been approved for Pegasys and am also looking into Besremi, although my understanding is that this drug is only available through a Phase III clinical trial that involves double blind placebo. I am trying to get as much information as I can before making a decision without delaying treatment too long.
-
Like -
Helpful -
Hug
1 ReactionI have an appointment at Wake Forest in a couple of weeks (which will be a host sight for the clinical trial for Besremi) and I am also exploring having a third set of eyes on my pathology by seeing someone at Mayo or MD Anderson.
I’m interested in hearing about MF patients experience with Ojjaara. I have had MF for over 40(yes 40) years, with no treatment. My doctors are recommending Ojjaara for anemia and spleen size reduction. I’m particularly interested in knowing about side effects. Thank you for your feedback.
JAK2 Myelofibrosis
I have been on Ojjarra for almost three months. It is a half dose (100mg) per day. Next month I will go on a full 200mg dose and will report back.
I have not experienced any adverse effects to date. My spleen pain has gone away. My white count is now upper normal. Still waiting for my platelets to stabilize. They range from 600,000 to 900,000. Maybe the full dose will help with that.
Other than that I feel like nothings wrong. I’m still shocked that I have this disorder.
I feel confident in the hands of the Mayo Clinic expert in Primary Myelofibrosis, Dr. Teffari.
-
Like -
Helpful -
Hug
1 ReactionMy wife was diagnosed with MDS 10 years ago. In the last year she’s had to undergo treatment once a month. Two months ago we received the news it was either misdiagnosed or it’s mutated into myelo fibrosis. It seems the treatment is mostly the same and only cure is transplant. As her caregiver I’m studying the pamphlet moffitt center gave me. In the last two days she’s had symptoms similar to vertigo with sickness feeling like throwing up anytime she moves her head or body to get up. It lasted 20 minutes or so yesterday and only 10-15 this morning. Does anyone know if this is normal for myelo fibrosis?