The LATEST in Myelofibrosis Treatments: Living with this RARE Cancer! | The Patient Story

[@ColleenC-n5v]

Thank you all for sharing this journey of hope and healing.God bless you.💜✝💜✝

[@kevinperkins6690]

I have just been diagnosed. I am 63 and I am so scared. Thank you for this video.

[@michellehaynes7055]

Hugs from Melbourne Australia 🇦🇺

[@hayhayhaynie4568]

My husband diagnosed but he is not Jak2 , he is MPL. Is it no drugs forMPL?

[@albertan6634]

I saw your video and surprisingly, my husband was just diagnosed with myelofibrosis. I'm very interested to see what you have to say.

[@ThePatientStory]

Thank you for watching!

[@danbernstein4694]

3 1/2 years ago I was diagnosed with with advanced myelofibrosis. My first oncologist ( at a US top ten cancer hospital,, no less)misdiagnosed my illness. In fact, I only had a few months to live. IF I had not listened to my body telling me how sick I was, and got a second opinion, I would not have survived .The JAK2 inhibitor kept me alive until i could get a bone marrow transplant . Even so, it was a near run thing. though my brother was a 10 out of 10 match for a bone marrow donor, the transplant was the worst thing I have ever been through. I nearly died from a medical issue years ago, but this was worse.The experience itself is incredibly difficult, near constant pain, lots of medical complications which even the doctors will not anticipate.Even before the transplant itself months of special dental cleanings, heavy duty, gut destroying chemo, weeks of radiation, both targeted and general even before getting to the main event. On the other hand, I completed my treatment in the spring, banged the gong, and as I keep saying, it beats the alternative! I will be happy to answer any questions you might have,. The very best of luck! Dan Bernstein

[@michaela5430]

​@@danbernstein4694 What's the difference between advanced Myelofibrosis and normal Myelofibrosis. If you was diagnosed today what treatments would you recommend if you're not a suitable bone marrow transplant? Also what's the life expectancy of someone with this cancer. Thank you. I hope you respond.

[@danbernstein4694]

@@michaela5430 advanced just referred to the the diagnosis.. Without a bone marrow transplant, use of a JAGK2 inhibitor is effective in most people to delaying the progress of the disease, but ultimately a transplant is the only cure. Where do you live? do you have access a hospital which can treat the disease? If you are in the US, there are programs to assist cancer patients . I am familiar with a number of them. Let me know . Best Dan

[@rmjr3853]

My wife has been suffering from myelofibrosis for 2 years now and currently treating with Jakafi. She has been advised by her doctor to undergo stem cell transplant, but we can't afford it. Do you know someone/organization that could support us financially. It would really be a big help for us. Thank you in advance for those who would reply.

[@ThePatientStory]

One of our partners has information specialists who can help with these kinds of questions - The Leukemia & Lymphoma Society → www.lls.org/support-resources/information-specialists. Best of luck.

[@mailin001]

It's deadly....