How I Got Through Cancer Treatment & Side Effects (Myelofibrosis) | Mary’s Story | The Patient Story

Mary L. continues to share her story in this 2nd video about getting diagnosed with myelofibrosis. In this segment, Mary goes in depth about how she was led to her first MF treatment (Pegasys) and the impact of a real lack of shared decision making between her and her oncologist.
She also describes getting tested for gene mutations and how that affected treatment decisions, as well. In the end, she underwent Pegasys and then hydroxyurea. Mary describes both treatments and how she got through side effects.
Mary spends a good amount of time also talking about switching not just doctors, but hospitals/healthcare providers, and the shift that happened following her decision to advocate for herself.

Thank you for sharing your story, Mary!

In this Series: Our 3-part series with Mary covers everything from getting diagnosed with a rare cancer (this video), the ups and downs of going through myelofibrosis treatment, including Pegasys and hydroxyurea, and the impact of living with a rare cancer.

Videos:
1) Getting diagnosed with a rare cancer:    • Getting Diagnosed with a Rare Cancer:...  
2) Myelofibrosis Treatment & Side Effects (Pegasys, Hydroxyurea): (this video)
3) Living with a rare cancer (myelofibrosis):    • Living with a Rare Cancer (Myelofibro...  

Full story & transcript → Updated Soon at www.ThePatientStory.com

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The interview has only been edited for clarity.
Contents of this video:
00:00 - Intro
08:00 - The struggle to get heard as a patient
09:20 - Primary Vs Secondary Myelofibrosis
12:25 - Seeing the right specialists
14:35 - Starting Hydroxyurea
17:15 - Hydroxyurea Side Effects
20:26 - Finding the right care for you
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