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?
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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
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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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Helpful -
Hug
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?