I was diagnosed with Myelofibrosis almost 2 1/2 years ago. Lost 50 pounds, have tremendous fatigue, pains that come and go in various spots.
Went to the ER after a long night of abdominal discomfort and chronic constipation. A PetScan indicated possible presence of a second, but extremely rare, blood cancer called Erdheim Chester Disease (ECD).
A couple biopsies later, ECD was confirmed.
After consulting with the few medical experts around the globe who follow ECD (including Mayo), my oncologist prescribed Cotellic by Genentech.
Very quickly, my medical condition improved by perhaps 50-plus percent!
It seems that my symptoms were coming from the ECD as opposed to the Myelofibrosis all along and I could have been treated a year earlier as the ECD showed up a year earlier on a CatScan ordered by my urologist looking for a kidney stone, but nobody read the report carefully. Bad primary!!!
What’s my point here? Get a PetScan!!! Your symptoms that you think are coming from your Myelofibrosis might not be.
Hello @wellness3070 and thanks for beginning this conversation. Please share with us your interest in this disorder. Is this a recent diagnosis for you? We look forward to getting to know you better and having others share with you from their experiences as well.
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.
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.
Welcome to Connect, @sunbird09 Over time, some people with PV may develop MF. This occurs if scar tissue replaces bone marrow which can interfere with the bone marrow’s ability to produce enough healthy blood cells.
Here’s another link to a good discussion in the forum with members who have MF. You can reverse the order of the conversations to see the most current replies.
Do you know if you have a genetic mutation such as JAK2?
Hello; I've been fighting MF for a very long time, about 15 yrs. I'm 75 yrs old. I've had just about every treatment available. Some seemed to help for a while, but didn't last for the long term. I take Reblozyl injections every 3 weeks, Aranesp injections every 2 weeks, Dacogen infusions every 4 weeks. Vonjo oral twice every day. Blood transfusions are needed every 2-4 weeks to keep HGB above 8. I've been anxiously awaiting the release of momelotinib. I ask the FDA about it today, 7/10/23, and they said a decision on it will be made by Sept 16, 2023. No doubt that I have been slowly loosing ground over the entire time and my ability to continue my active life style as usual has been greatly decreased. I do continue to take a long walk daily, but I take care not to push myself too hard. Without the available Oxygen it's easy to overdo things. The one thing I suggest is to not just sit on your butt and cry.... get up every morning, clean yourself up, look your best and find something every day to be greatful for.
I’m new to the group. Diagnosed 6 months ago with Primary MF, CALR positive. I’m wondering if anyone is participating in any clinical trials, especially those for CALR+.
I’m new to the group. Diagnosed 6 months ago with Primary MF, CALR positive. I’m wondering if anyone is participating in any clinical trials, especially those for CALR+.
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?
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.
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.
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.
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.
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I was diagnosed with Myelofibrosis almost 2 1/2 years ago. Lost 50 pounds, have tremendous fatigue, pains that come and go in various spots.
Went to the ER after a long night of abdominal discomfort and chronic constipation. A PetScan indicated possible presence of a second, but extremely rare, blood cancer called Erdheim Chester Disease (ECD).
A couple biopsies later, ECD was confirmed.
After consulting with the few medical experts around the globe who follow ECD (including Mayo), my oncologist prescribed Cotellic by Genentech.
Very quickly, my medical condition improved by perhaps 50-plus percent!
It seems that my symptoms were coming from the ECD as opposed to the Myelofibrosis all along and I could have been treated a year earlier as the ECD showed up a year earlier on a CatScan ordered by my urologist looking for a kidney stone, but nobody read the report carefully. Bad primary!!!
What’s my point here? Get a PetScan!!! Your symptoms that you think are coming from your Myelofibrosis might not be.
-
Like -
Helpful -
Hug
2 ReactionsI 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.
Welcome to Connect, @sunbird09 Over time, some people with PV may develop MF. This occurs if scar tissue replaces bone marrow which can interfere with the bone marrow’s ability to produce enough healthy blood cells.
Here’s another link to a good discussion in the forum with members who have MF. You can reverse the order of the conversations to see the most current replies.
Do you know if you have a genetic mutation such as JAK2?
~Myelofibrosis w/ JAK2 mutation
https://connect.mayoclinic.org/discussion/myelofibrosis-w-jak2-mutation/
Where you on any treatment plan for your PV? What has your hematologist oncologist suggested for this next phase of your condition?
Check out this article:
https://us.gsk.com/en-us/media/press-releases/ojjaara-momelotinib-approved-in-the-us-as-the-first-and-only-treatment-indicated-for-myelofibrosis-patients-with-anemia/
I’m new to the group. Diagnosed 6 months ago with Primary MF, CALR positive. I’m wondering if anyone is participating in any clinical trials, especially those for CALR+.
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?
-
Like -
Helpful -
Hug
2 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 ReactionsHi 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
2 ReactionsI 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.
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.