Hi Sue-
My Dad is only 66 and a Cancer Survivor (4th stage non-hodgkins lymphoma). He was also diagnosed with PNH over 8 year ago. He has been suggested Soliris by all of his Doctors in the past 8 years, and is hospitalized most recently for thrombosis. This disease is such a horrifying thing to watch take over my Dad's body, and we all want nothing more than to see him get on Soliris, as it seems that at this point, it is his only hope for improved quality of life. Can you tell me the pros and cons of being on Soliris? I would love to hear from someone who's experienced it first-hand.
Thanks in advance for your input.
In the meantime I'm sending good vibes and well- wishes your way.
Desiree
Quote:
Originally Posted by Snuuze
Hello Anja,
PNH can be a scary diagnosis since it is such a rare disease. I was first diagnosed with MDS in June 2010, and PNH in Feb 2011. These two diseases plus Aplastic Anemia can all be intertwined. In fact, my doctor now thinks that my AA and MDS symptoms are all related to the PNH. PNH diagnosis is confirmed by flow cytometry, which can be performed on blood cells and doesn't require a bone marrow biopsy, although I've had my share of them as well.
My treatment has been an infusion of Soliris (eculizumab) once every two weeks. It is an incredibly expensive drug, but it "cures" PNH. That's to say, if you take the infusions every two weeks for the rest of your life, the PNH won't attack your blood cells. Of course, then you are still left with the AA to deal with. Patients with only PNH report feeling better almost immediately.
I second Neil's recommendation of arming yourself with information about PNH. And find a hematologist/oncologist who is familiar with these bone marrow disorders. Read as much as you can and ask lots of questions.
I wish you well in your journey to feeling better and becoming informed. As I said, PNH is rare, so that means you are in rare company!
Sue
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