Wow Vicky, I have never heard of this disease.  Rare diseases are difficult in finding information.  Because they are rare, there are not many studies out there yet.  Hang in there, you will get answers just keep asking questions like what does that mean....And where can I go to find out.

Kristen

I am also frustrated by the lack of information on this diagnosis.  My mother (age 64 now) was diagnosed in December, and no treatment plan has been established.  She was dx w cloroma 5 years ago and underwent three sessions of 72 hr. chemo.  Actually due to complications with the chemo, she was unable to complete the third session, so I guess she just did the first two. We then had a couple of years without symptoms, but the discoloration returned and she chose radiation on the effected area.  It again returned and she was finally given the bpdcn dx in either Dec 08 or Jan 09.  She suffers from joint pain that moves from one area of the body to another, has sinus infections and throat problems often as of late, and has complained of back pain for a long time now.. She is of the mindset that these conditions are unrelated to the cancer. She tells us that the back pain is a pinched nerve, joint pain is arthritis, and she just has a sinus infection which must be viral as antibiotics don't help.  She was placed on prednisone which did work for a very short period of time on the swelling of the joints.  I am feeling very hopeless that if something/some treatment isn't started asap she will not live much longer.  I can not remember the last time she had a good day.  Vicki, if you could share with me the treatment plan that your husband is receiving and how it is going I would much appreciate it. According to mom, the dr. told her to "just wait and see". So, she hasn't been back to the oncologist since January  as I understand it.

Frustrated

DEAR VICKI,

   I AM WRITING TO YOU IN REGARDS TO THIS LETTER . My Brother age 47 was diagnosed with blastic plasmacytoid dendritic neoplasm back in sept at the washington cancer institute, in wash.d.c. he had a turmor come up on his collor bone.

went to wci had a needle biopsy that told us it was lymphoma. so then did a open biopsy and that told the kind  of lym. which u c above he had a pet scan and he had it all over his body shoulder, ribs right elbow left angle, even his testicle. he has gone though 2 treatments of chemo oh yes he also had it in bone marrow and spinale fluids. at first treatment we saw the turmor going away he also had nots as large as 1 in come up on his skin and they are gone by the eye.he just came home tonight for a break of chemo he did have a fever and a tiny blood clot in his lung when he went back for 2nd time so that delayed his chemo he will have 2 have a bone marrow transp when he goes in remission,{god will help with us}he had 7 siblings and none of us match one brother match 24% not good so now nih has gone to the bone mar bank to start looking.his attidude was good until this week when he found out none of us match .he has lots of friends that want to see if there a match we like to set up something at the fire house were he is a member to see if some one can come there to take the blood or swipe to see if they are a match but we dont know how to get started.nih said they will send us some infro.he had his spine fluids tested on tuesday and they were neg. thanks to god.here are the chemo agents they are using

CYCLOPHOSPHAMIDE

DOXORUBICIN

DEXAMETHASONE

VINCRISTINE

METHOTREXATE INTRATHECAL

CYTARABINE

CYTARABINE INTRATHECAL

METHOTREXATE

VICKI I WISH YOU AND  YOUR HUSBAND GOOD LUCK AND YOU HAVE MY PRAYERS WITH YOU BOTH, MARY

PRAYING FOR A COMPLETE REMISSION