Primary Myelofibrosis

Dear crsimon5,
Yes, hearing the “C” word is frightening, but mf is easier to deal with than most others.
I was diagnosed with mf two years ago, went on Hydroxyurea daily, experience few problems other than fatigue, probably because I’m 84 as well. My life is full, and I enjoy the same activities as before the diagnosis: walking, traveling, gathering with friends and family. Don’t let the cancer define you; fill your life with things you enjoy, be positive, and take one day at a time.
Use this website to stay informed and see that you are not alone in this. New friends who have had the same diagnosis can walk with you.
If you are part of a faith community, you’ll find real help there, too.
You are 30 years younger than I am so you still have lots to look forward to.
I’ll be praying for you.
Dunewalker 🤗🙏🏽

I'm so sorry you are going through this.
Nothing can prepare you for hearing that you have cancer.

I have secondary MF. For me, symptoms that changed my life came on gradually over 2-1/2 years+.
First diagnosed with CMML 1, then 7 months later Myelofibrosis, each one after Bone Marrow Biopsies.

I knew something was wrong, I just didn't feel like myself. My symptoms and low bloodwork numbers were dismissed by multiple specialists.
By the time I was diagnosed both times, it was a strange sort of relief...as in
an I'm not crazy or a hypochondriac sort of relief.
And it was still a shock. Telling family and my children was difficult.

Unfortunately by the time my MF was diagnosed, it is an aggressive type and in an advanced stage.

With that said, it was a bewildering jolt to every part of my being. I hear you.

I asked many questions, feel fortunate to have a great Oncologist at Mayo Clinic in FL.
Prayer and meditation when it became overwhelming, family support all helped.
For me. educating myself from every possible source helped me to understand the disease.

You should be aware that each persons experience is different.
You can live with MF for a long time with multiple options for effective treatment and live a somewhat normal life.

Ask your Oncologist questions!!!
Find out your options for treatment based on where YOU are in this journey.

I am scheduled for a Bone Marrow Transplant for later this month. For me this is the only option.
I have been on Vonjo since February, which has been fantastic with my making my symptoms almost disappear and over time has given me my life back. I feel better than I have in 3 years.

There are many medications available that your Oncologist can tailor to your needs.

I wish you all the best in your journey.

@crsimon5 - I was diagnosed a year ago. Agree with the prior responses. We have an informative community with different Myelofibrosis mutations. Depending on your situation it can be a wait and see. There are a number of meds as well that address symptoms. The only‘curative’ path is a bone marrow transplant. I’m adding our beloved mentor here in case she has other resources and words of wisdom. @loribmt Best wishes!

Welcome to our group! I'm impressed you found us so early in our diagnosis. Knowledge is definitely key to navigating the journey ahead. I was diagnosed 10 years ago with the CALR mutation. I remain asymptomatic. "Watch and wait" protocol with a baby aspirin 4 times/week. It is critically important that your diagnosis in confirmed by an MPN specialist, not simply an oncologist/hematologist. Your treatment plan should also be directed by an MPN specialist, even if it requires traveling to see him/her. It's so important that you remain as healthy and strong as possible - good nutrition, daily movement, meditation/mindfulness and an integrative approach to your wellbeing. Also. be sure you are getting all required cancer screenings, e.g., colonoscopy, skin cancer, etc. And then, live your best life possible with joy, love, and gratitude. Prayers to you and yours.

@dunewalker Thank you so much and thank you for your kind words. I'm so glad you have a full life. That's is my aim as well. Peace and love to you.

@carolgk Thanks so much for your kind words of encouragement. Mine was discovered through routine bloodwork with high platelet count. When my GP wanted me to come back in 2 weeks for another CBC, the platelet number was higher and that was when I was referred to a hematologist. My diagnosis was confirmed by bone marrow biopsy. All of that happened in the span of a month. All of this is just so surreal - the depression in this early diagnosis stage is almost crushing. I find the most peace in the evening; the mornings are the hardest emotionally. All that said, I don't have many of the symptoms that many people with this disease describe. But the constant monitoring of any ache or pain in my body is just exhausting. All that said, I am fortunate to live in the DC metro area and am about a 45 minute drive from Johns Hopkins in Baltimore, where there is a whole group of amazing doctors who specialize and study MPNs. I plan on asking my dr. for a referral to JH because you're right, I need information. The space between diagnosis and stem cell transplant is murky and unknown. This forum provides me with a source of strength and peace, knowing there are others like me in the same boat, and I'm so grateful that you all are here. I wish you peace and light in your transplant journey.

@mjrussell2 Thank you so much for your words of support. This means so much to me as I navigate this new world. It's great that you've been free of symptoms for so long. What a weird disease! This thread has been my lifeline and I so appreciate everyone sharing their story.

I am focused on exercise, nutrition, and stress management and meditate nightly because it's the only thing I can control. My hemo did not want me to go the aspirin route as I have had a terrible bruising from blooddraws and IVs. As I mentioned in a previous reply, I am close to Johns Hopkins in Baltimore and hope I can get a referral there, just to get information. There are new discoveries every day and I am so grateful for the medical community who are working so hard to find new treatments. All the best to you in your journey.

I was diagnosed last August with Pre Fibrotic Primary Myelofibrosis. I have a CALR mutation. My doctor at Mayo tells me having the CALR mutation can be better in the long run. They diagnosed me Pre Fibrotic because of no symptoms and my numbers aren't really too bad except for high platelets. Try not to freak. It's so hard, but like these wonderful people on here are saying, we can live long lives. I am 8 hours from Mayo but keep in touch after my initial in person visit by Zoom visits. Make certain you find an MPN specialist in addition to your local doctor. I am trying Besremi which is in 2nd phase clinical trials for my disease. It is an Interferon Immunotherapy . It is showing that is can lessen gene mutation and bone marrow fibrosis. It's not made for this disease but is showing great promise. Google it for Myelofibrosis! Depending on where you are at in the disease and it sounds early, Besremi may work for you. From what I understand, it's the only thing besides bone marrow transplant that can actually do more than just ease symptoms. Praying for all of you on here!!

Hi @conniekostiuk,
I have CALR too, specifically CALR1, no symptoms, no enlarged spleen per CT Pelvic scan, and I am now 66 years old, and I declined taking Hydrea but about every three days I do take one low dose aspirin as more often makes me bleed way too easily. I have no other health issues except a very enlarged not at all painful right finger PIP joint that has been thought to be an indolent infection per my first and last scan with and without contrast since 2023. I have seen four hand surgeons and one rheumatologist and they do not know what I have. The two middle hand surgeons thought I had an old injury but I have never injured my fingers in any way so I doubt that.
I meant to write to you earlier when I saw your post, but I am on vacation with my family and had the great experience tonight of getting back into the chapel my husband and I were married at almost 38 ago, the Chapel of the Choirs in St. Peter’s Basilica, Vatican City.
My advice is to do what you feel is best for you. If you have symptoms it might be different than what I feel is best for me. In the meantime, I live my life as usual and limit the time I think of having any blood cancer as I feel just fine as I always have for all my life! I am thankful to God for that still after almost a year and a half since hearing the dreaded thought of having cancer with a small c as I was told.
Wishing you all the best and stay positive my friend!