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Diagnosis of Blastic Plasmacytoid Dendritic Neoplasm Cell Leukemia

jodiruhe Message
4 Dec 2012, 11:50 PM

Hello. My dad was recently diagnosed with BPDNC Leukemia. He is 70 years of age - actually just turned 70 in October. Before diagnosis - Dad was still working Part Time as an Electrician with my brother. He has is in good shape other than this diagnosis. His symptons were fatigued and having a small fatty cyst on his back. He went to his family doctor and told him of his symptons - took some blood tests then referred him to an oncologist. The oncologist did some blood test and knew something was going on but the only indication that something was wrong was his hemoglobin was low and his spleen swollen. So then they went on to a bone marrow biopsy which confirmed he had Leukemia. He was then sent down to the James Cancer Center at the OSU Medical Center where they diagnosed him with this rare leukemia. I have read up on this and the long term things dont sound good until I found someone speaking about SL-401..... This doctor in Texas had 2 patients that are doing very well. Any information would be great on this. Oh - the treatment as of right now is 10 day cycle of decitabine chemo for 1 hour in a 28 day cycle. Any insight on this would be wonderful. He wants to beat this and I will do anything I can to help.
oldtree Message
5 Dec 2012, 10:30 AM

I am very sorry to hear your news. It is a very rough treatment and disease. Besides this forum there are 2 others that I would suggest you read where patients give their treatment details and also links to much of the available info on this rare disease. "lymphoma info": "LLS": this is the doctor you mention in texas "Doc Frankel": Stemline SL401 "Stemline": First SL401 patient's blog: "CAM":
shammahbn Message
5 Dec 2012, 01:22 PM

Oldtree gave you good resources, and it sounds like you're researching well. I'll just say I'm sorry to hear & I'll pray for your dad. May he wind up being the poster child for a successful treatment. It is a very good thing he's in such good physical condition. We're with you!
jodiruhe Message
6 Dec 2012, 01:38 AM

You all are so kind! Thank you so much for your replies,encouragement, and prayers. I want to do all I can for dad because his dad had leukemia and died at age 57. Then my great grandpa died too at 57 of lead poisoning or so they thought.... It just worries me! Again many thanks and hugs to you both!