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Primary Myelofibrosis: How did you come to terms with the diagnosis?
Blood Cancers & Disorders | Last Active: Jun 18 3:10pm | Replies (16)Comment receiving replies
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.
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@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.