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Primary Myelofibrosis
Hello, I'm 58 and just diagnosed with MF and absolutely terrified. Just acknowledging the "c" word terrifies me. I have few symptoms except for light tingling in hands and feet mostly. No fatigue, and spleen is normal size. I have the CALR mutation. I'd like to hear from other patients about how they've come to terms with their diagnosis and any pointers they might have for me as I navigate this weird new world. I appreciate it!
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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 🤗🙏🏽
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4 ReactionsI'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.
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1 Reaction@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!