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 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 @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 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.
Hi, Steve, I was diagnosed with MF in late 2010, though I must have had it a while before then. I have taken no medication at all, but I make my own Liposomal vitamin C (see online & videos). I also take a good multivitamin, medicinal mushroom capsules, vitamin D3, Magnesium and several other supplements. My consultant recently told me in front of a student that I am unusually stable and to carry on with whatever I am doing! If you want more details I can give you pointers. For some years I communicated with others on 'CancerCompass'. Several were following a similar (though personally varied) protocol and everyone was showing improvements! On this protocol, my PSA went recently from 15.5 to 7.6! The nurse asked me what was I doing to make this happen so I told her the supplements!
I personally believe not in 'zapping' the problem but in building health so that your body does it for you. Finding a good nutritionist could help to pinpoint weaknesses!
Best wishes,
Roger
I was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
Hi @jeffrad1, I hope you saw @eileen11108's kind reply to you. I'm sorry to hear that you feel like you're losing the battle and struggling mentally. We're here to support you. How are you doing today?
I was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
I was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
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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/
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?
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 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.
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1 ReactionWelcome, @bundy144. I'm tagging @stimme to make sure he (Roger) sees your request.
Bundy, have you considered getting a referral to an oncology dietitian to help develop a food and supplement regimen that is right for you?
hello steve i also have mf which cause my spleen to b enlarge can you please share your daily regiments...
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1 ReactionHi @jeffrad1, I hope you saw @eileen11108's kind reply to you. I'm sorry to hear that you feel like you're losing the battle and struggling mentally. We're here to support you. How are you doing today?
Jeff,
Your dose of Hydroxyurea is very high. It can cause many side effects. Have you seen an MPN specialist yet? Has your doctor mentioned Pegasys?
Best wishes, Eileen
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1 ReactionI was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
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