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jnwilder816 Message
14 May 2011, 01:12 AM

My husband was diagnosed with blastic plasmacytoid dendritic cell neoplasm 3 weeks ago. Our oncologist, who has practiced for 19 years, has never dealt with this. He has one lesion on his right shoulder and it was diagnosed with a biopsy of this lesion. We will be going to Vanderbilt-Ingram Cancer Center in Nashville, TN next week. It is very scary that no one seems to know how to treat this.
shammahbn Message
6 Jul 2011, 08:56 PM

Hi. I was diagnosed July 5, 2011, and I've just returned home from Vanderbilt-Ingram. Maybe we could keep in touch! I have now spent hours on the internet, and I think there's some agreement in the medical community about how to treat BPDCN. The following January, 2010 article argues that all cases should be treated with aggressive AML-style chemo, followed by bone marrow transplant when the patient is in first remission: "": That article is referenced a couple times in papers I read on pubmed concerning the treatment of a few individuals. Is your husband being treated already? I'm sort of expecting to be treated quickly because I already have leukemia symptoms. I have two lesions on my back and one developing by my right collar bone. They just biopsied one of the tumors this morning. I was diagnosed based on bone marrow.
jnwilder816 Message
9 Jul 2011, 12:11 AM

Thanks for your info. We saw the oncologist today. The radiation eradicated the lesion on his shoulder (actually it was more on is collar bone.) He now has another lesion on his stomach. It is smaller than the other lesion so far and has not gotten any larger in the last month. I am also watching a place on his forehead. The Dr. said we would watch it for a month and may have to get more aggressive. My husband's blood numbers are on the low side but they have been low for the the past couple of years. He will have another CT scan next month. My husband is 73 years old and I think they look at that and say he may not survive more aggressive treatment. That may be so, but I believe that should be our choice. Please let us know how you are doing. It is good to know someone else who is dealing with this since it is so rare.
shammahbn Message
9 Jul 2011, 12:47 AM

Well, I got a call from the doctor today, and Vanderbilt wasn't willing to confirm the pathologist's diagnosis of BPDCN. There's apparently some "markers" that they wanted to see before confirming. They're going to leave it as "undifferentiated" acute leukemia. In other words, there's no category for it. I have the lesions. Two on my back, and one beginning on my collar bone. I have full-fledged leukemia symptoms, too, though. My blood numbers are not terrible, but they're steadily dropping. I did some math, and in 6 weeks I won't have any red blood cells left. I'm not a doctor, but I'm pretty sure it's really, really bad to have no red blood cells. The doc said he wants to start full-fledged AML-style chemo start next week. There's a possibility of some experimental medicines being added, too, as they look at more and more markers. I'm 50, which suddenly is young and healthy rather than old and slow, as my teenage sons see it. Nice change in that respect. Best wishes with your treatment. 73 is more typical than 50 for getting BPDCN. I can tell you that I did a lot of research, something I'm very good at, and I'm really impressed with the doctors at Vanderbilt as far as being up to date and knowing what they're doing. Very impressed. My name's Paul, and I'm the webmaster at "": You can always email me from there using the "contact me" button. I'm going to stay on this topic, though, even though I'm not officially BPDCN. It will be nice to stay in contact.
jnwilder816 Message
9 Jul 2011, 12:52 AM

Paul, we will definitely stay in contact.
JudyCarstens Message
27 Jan 2012, 04:23 PM

Hi! I just joined this community and have been following Paul. We are praying his transplant and recovery is successful I was diagnosed with Blastic Plasmacytoid Dendritic Cell Neoplasm in September. In March of last year we began noticing a rash and then a tumor developed on my back. I had a large one and another smaller next to it. It was treated all summer and a biopsy done in Sept and later bone marrow biopsy confirmed as this disease. I am 74 almost 75 and was told Stem Cell would not be offered to me because of age. Only the very young, of which there are fewer with this disease I understand, are offered the treatment. They have not proven successful as well as other chemo are also so aggressive and I would have to be hospitalized 10-12 months and would die from the treatment. They have recommended I sign for Hospice and be kept comfortable and useful as possible. I have done that and am at peace with it. Hospice is wonderfully helpful and makes life much easier. I did just complete a round of radiation on the back tumor and it had shrunk from golf ball size to flat. I have developed many rashes every day that come and go. Some like to stay around longer and develop small marble size like tumors but so far I will not have treatment on those unless they get too painful. Most recent is on my forehead. Best wishes with your continued life and support. Link to me is
jnwilder816 Message
27 Jan 2012, 11:36 PM

My husband had 5 chemo (CHOP) treatments from July to November of 2011. They are treating it at this time as a lymphoma. At the beginning of the chemo he had probably 20 lesions on his body. After the 2nd treatment, all the lesions were gone. The chemo was hard on him, he had to have 12 units of blood, because of an underlying blood problem. He is doing really well right now but the doctor believes this will return. Right now we just watch and wait.
shammahbn Message
28 Jan 2012, 02:32 AM

Hi JNW! I'm at Vanderbilt right now. I got my stem cell transplant 10 days ago, fully ablative. The side effects have been rough, but I've been walking and keeping up on the mouth rinses anyway. I probably have at least 10 more days in the hospital until my blood counts start to rise. Sometimes it's hard to find the energy to go forward, but I have a LOT of support, a lot of prayer, and the care at Vanderbilt is great. Mostly BPDCN returns. I think, though, that I've read in medical literature that there are a couple cases which did not relapse despite no transplant. We can pray your husband is one of them!
sankah Message
17 Jun 2012, 09:54 AM

Oh what a crazy disease! My father received his diagnosis on of BPDCN in March of this year. He is 68 years old, very strong and active and has never had any major illnesses in his entire life. He developled a bruise like lesion on his arm in December 2011 that wouldn't go away, and waited until January to see the dermatologist. The dermatologist took a biopsy and it was sent to University of California - San Francisco for testing and it came back with the BPDCN results. A second biopsy on another lesion was done and also confirmed this diagnosis. His only manifestation of this cancer was the skin lesions and his routine blood tests over the past year, showed a slight case of anemia. Pet Scan, spinal tap, and bone marrow biopsy showed no cancer cells when done after the initial diagnosis. We are walking the road of chemotherapy and staging for a stem cell transplant. He is currently undergoing treatment at the Huntsman Cancer Institute in Utah. Hyper C-VAD and Methotrexate seem to be working to minimize the skin tumors and reduce the blood cell counts, but the side effects have been pretty bad - nosebleeds that don't stop, low platelet counts, and at one point - sepsis. Because of his age and type of cancer, the doctors recommended using stem cells that are not his own for a better outcome and prognosis and the bone marrow transplant team is actively looking for a match for him. I would like to express my appreciation for the combined efforts of all of the people who have been contributing to the discussion threads, blogging, and providing input and resources on the internet concerning what is working and what is not working as far as treatment goes. It has made our road a lot easier and less stressful so far. We appreciate the difficulty of the journey so many of you have faced. Thank you so much for sharing your stories! For everyone of you dealing with this illness or helping someone who has it, I wish you all of the best as you continue your journey toward faith, healing, health, and hope!
shammahbn Message
17 Jun 2012, 01:13 PM

I just got an email yesterday from a lady whose father has BPDCN and received a stem cell transplant in March. At first I thought this post was from her, but her father is 72, not 68. She says her dad is doing well. I thought I'd tell you in case it provides a little hope!
pdagher Message
24 Jun 2012, 06:46 AM

this is Peter I am the 21 years old from Lebanon I was told by my doctor at the American University at Beirut Lebanon that I have the BPDCN. I hope to get the Visa on Teusday and leave to the Atlanta Emory where we have being in contact with one of the doctors there. I read about it it is scary I had planned for a good life I am 4th year electrical engineering I don't know how my days are going to be like.
shammahbn Message
24 Jun 2012, 10:22 AM

it is scary, but you can still have a good life. The doctors and nurses told me that a positive attitude makes a huge difference. Today many people survive BPDCN. Your next few months will be rough, but you are young. Chemotherapy and a bone marrow transplant works more often than not, especially for 21-year-olds. I will pray for you. The best thing you can do is have a positive attitude and be confident you can get well.