Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Blastic Plasmacytoid Dendritic Cell Neoplasm

What is Blastic Plasmacytoid Dendritic Cell Neoplasm?

Blastic plasmacytoid dendritic cell neoplasm (BPDCN) is a rare cancer that affects certain cells of the immune system called dendritic cells. The immune system is the natural defense of the body that helps to protect against infections and is made up of different types of cells. The function of dendritic cells is to recognize external threats (such as infections) and to indicate to lymphocytes (also known as white blood cells), another cell type of the immune system, what should be attacked. BPDCN is usually an aggressive form of cancer and most often affects the skin, blood and bone marrow.

This condition has received different names during the past years until 2008, when the World Health Organization (WHO) recognized BPDCN as a distinct entity. WHO currently classifies this disease as a subtype of acute myeloid leukemia.

BPDCN affects men more than women, with a ratio of 2.5-3. It is also more frequent in older adults, with the average age at onset between 60 to 70 years. However, it is not exclusive of older men as several pediatric cases have been reported.



  • Blastic Plasmacytoid Dendritic Cell Neoplasm
  • DC2-related CD4+/CD56+ blastic tumor of the skin
  • CD4+/CD56+ haematodermic neoplasia
  • Early plasmacytoid dendritic cell leukaemia/lymphoma
  • Agranular CD4+/CD56+ haematodermic tumor
  • CD4+/CD56+ acute leukemia
  • DC2 precursor acute leukemia
  • Cutaneous agranular CD2-/CD4+/CD56+ lymphoma
  • Agranular CD4+/CD56+ blastic NK leukaemia/lymphoma
  • Acute agranular CD4+ NK-cell leukaemia
  • CD4+/CD56+ acute monoblastic leukaemia

Blastic plasmacytoid dendritic cell neoplasm (BPDCN) is a rare cancer that affects certain cells of the immune system called dendritic cells. The immune system is the natural defense of the body that helps to protect against infections and is made up of different types of cells. The function of dendritic cells is to recognize external threats (such as infections) and to indicate to lymphocytes (also known as white blood cells), another cell type of the immune system, what should be attacked. BPDCN is usually an aggressive form of cancer and most often affects the skin, blood and bone marrow.

This condition has received different names during the past years until 2008, when the World Health Organization (WHO) recognized BPDCN as a distinct entity. WHO currently classifies this disease as a subtype of acute myeloid leukemia.

BPDCN affects men more than women, with a ratio of 2.5-3. It is also more frequent in older adults, with the average age at onset between 60 to 70 years. However, it is not exclusive of older men as several pediatric cases have been reported.

Rareshare would like to acknowledge Dr. David Alan Rizzieri, Professor of Medicine, Duke University School of Medicine; Dr. Livio Pagano, Associate Professor of Hematology at the Catholic University of Sacred Heart, Rome; and Dr. Arthur E. Frankel, Chief of Medical Oncology at Mitchell Cancer Institute, University of South Alabama, for reviewing this content.

There are no precise data for its prevalence considering its rareness and that it was not properly defined as a unique disease until 2008. It is estimated that as fewer than 1% of all blood cancers (only a few hundred cases per year in total). For years, BPDCN was misdiagnosed or under-diagnosed. In recent years, improvements in immunohistochemistry and molecular studies combined with refinements in classification has allowed increased recognition and an increase in the number of people diagnosed with the disease.

Name Abbreviation
Blastic Plasmacytoid Dendritic Cell Neoplasm BPDCN
DC2-related CD4+/CD56+ blastic tumor of the skin BPDCN
CD4+/CD56+ haematodermic neoplasia BPDCN
Early plasmacytoid dendritic cell leukaemia/lymphoma BPDCN
Agranular CD4+/CD56+ haematodermic tumor BPDCN
CD4+/CD56+ acute leukemia BPDCN
DC2 precursor acute leukemia BPDCN
Cutaneous agranular CD2-/CD4+/CD56+ lymphoma BPDCN
Agranular CD4+/CD56+ blastic NK leukaemia/lymphoma BPDCN
Acute agranular CD4+ NK-cell leukaemia BPDCN
CD4+/CD56+ acute monoblastic leukaemia BPDCN

The underlying cause of the disease is not known. Several studies have revealed the presence of multiple and variable genetic alterations in the cancer cells, but none of them has proved to have diagnostic or prognostic value. There are no known environmental or specific genetic factors that predispose to BPDCN development.

The most common presenting sign is skin lesions. This might be the first sign leading patients to seek medical advice, and without therapy, they rapidly disseminate. Typically a patient could present with asymptomatic, solitary or multiple skin lesions that can be variable in size (from a few millimetres to 10 cm), shape and colour, and can appear as nodules, plaques or bruise-like infiltrates. The skin lesions can be associated with erythema (redness of the skin), hyperpigmentation (patches of the skin become darker in color), purpura (purple-colored spots on the skin) or ulceration (the breaking of the skin tissue). Take note that the number, size and aspect of these lesions can vary from person to person.

If the bone marrow is affected by the cancer, it is common that patients present with low blood cell counts. Depending on which blood cell type is decreased in number it can be refered to as thrombocytopenia (low levels of platelets), anemia (low levels of red blood cells), neutropenia (low levels of a type of white blood cells called neutrophils) or pancytopenia (if all three blood cells are depressed).

Platelets are specialized blood cells that help the blood to clot, thus thrombocytopenia can cause easy bruising and spontaneous or prolonged bleeding. A red blood cell´s main function is to deliver oxygen throughout the body. Anemia can cause fatigue, headaches, irritability, paleness, and difficulty breathing. Neutrophils help the body to fight of infection. Neutropenia can cause an increased risk of developing bacterial or fungal infections.

In some people the cancer can also invade and affect the lymph nodes, the spleen, the liver or the central nervous system. Specific symptoms will vary depending upon the specific organ systems involved.

The diagnosis is made by studying the cancer cells present either in the skin or in the bone marrow depending on the organ affected in each patient. Firstly, the shape or morphology of the cancer cells is observed under the microscope. For a definitive diagnostic, the surface of the cancer cells have to display certain markers. These markers are proteins expressed in a combination and pattern most commonly by plasmacytoid dendritic cells, however they may occasionally be seen in other blood disorders as well and diagnosis is very difficult. Current diagnostic guidelines establish that the cancer cells should express or be positive for CD4, CD56, CD123 and TCL1 and often BDCA-2/CD303. In contrast, other myeloid blood cancers may express these markers in a low level but also have myeloperoxidase, lysozyme, and CD34, 14, 11, or 163, which BPDCN typically does not express.

Tests that may be ordered to help diagnose BPDCN include a skin biopsy, in which a sample of diseased tissue is removed and studied under a microscope; bone marrow aspiration, in which a sample of the bone marrow (the soft spongy material inside long bones) is removed and studied; flow cytometry, a laser-based technology that allows doctors to analyse the characteristics of cells or particles; and immunohistochemistry, a laboratory test that uses antibodies to test for specific markers called antigens.

There is no standard treatment for BPDCN and traditionally it has been treated with chemotherapy regimes designed for other blood cell cancers.

Currently, the better performing treatment seems to be a high-dose chemotherapy regime followed by an haematopoietic stem cell transplantation (HSCT, also known as a bone marrow or peripheral blood stem cell transplantation). The high-dose chemotherapy treatment is able to efficiently get rid of the cancer cells, but some might persist. To eliminate those, the strategy is to eliminate all the cancer cells in the bone marrow, skin or other areas of involvement by either radiation or specific chemotherapy treatments. In the bone marrow also reside a type of cell called haematopoietic stem cells (HSCs), very important because they originate and maintain appropiate levels of all the blood cell types and the entirety of the immune system. These HSCs will be also destroyed, together with the cancer cells during the HSCT process, and need to be reimplanted in the bone marrow after the treatment. Thus if a patient is to use their own stem cells to recover form this strong cycle of chemotherapy, a portion of them must be frozen and saved first and then reinfused (like a blood transfusion) after the high dose chemotherpay is delivered to the patient, a process termed an autologous HSCT. In other cases, the HSCs can come from a compatible donor and in that situation the process is called allogenic HSCT.

A patient has to be in a good general health in order to undergo the process of an HSCT. In case of a fragile health condition, only the chemotherapy regime is administered. Even though most patients respond to the chemotherapy alone, if administered by itself the cancer comes back quickly.

Currently, there are new therapies more specific for BPDCN in clinical trials. SL-401 is a targeted therapy that specifically focus on a molecule called CD123 (also known as the interleukin-3 receptor), which is overexpressed on almost 100% of BPDCN cancer cells.

If the skin lesions affect the quality of life, treatment with local radiation might be considered as well.

BPDCN is an aggressive cancer. The chemotherapy treatment can achieve remissions, but the cancer comes back (relapses) relatively quickly. When the disease relapses it is usually fatal. However, the prognosis for BPDCN patients has improved over the past years with an increase in survival after diagnosis. Patients that undergo haematopoietic stem cell transplantation after chemotherapy tend to have a better prognosis with potential for cure, and the novel agents in clinical study have had encouraging early success.

Tips or Suggestions of Blastic Plasmacytoid Dendritic Cell Neoplasm has not been added yet.

Laribi, K., et al. (2016). "Blastic Plasmacytoid Dendritic Cell Neoplasm: From Origin of the Cell to Targeted Therapies." Biol Blood Marrow Transplant 22(8): 1357-1367.

Pagano, L., et al. (2016). "Blastic plasmacytoid dendritic cell neoplasm: diagnostic criteria and therapeutical approaches." Br J Haematol 174(2): 188-202.

Pemmaraju, N. (2016). "Blastic plasmacytoid dendritic cell neoplasm." Clin Adv Hematol Oncol 14(4): 220-222.

Sullivan, J. M. and D. A. Rizzieri (2016). "Treatment of blastic plasmacytoid dendritic cell neoplasm." Hematology Am Soc Hematol Educ Program 2016(1): 16-23.

Frankel AE, et al. (2014). “Activity of SL-401, a targeted therapy directed to interleukin-3 receptor, in blastic plasmacytoid dendritic cell neoplasm patients.” Blood 124(3): 385-92.

Blastic Plasmacytoid Dendritic Cell Neoplasm. The Leukemia & Lymphoma Society. Available at: cell-neoplasm

Clinical Trial Sl-401, Venetoclax and Hyper CVAD Created by Nessie
Last updated 4 Sep 2020, 05:51 PM

Posted by Nessie
4 Sep 2020, 05:51 PM

Hi, my husband was diagnosed with BPDCN just 3 weeks ago and we moved from Virginia to Houston so he could be part of a clinical trial at MD Anderson.  My husband is my soul mate and we have never been apart.  I cannot visit because of Covid.  We face time .   I am wondering if there is anyone else in a similar situation.  I miss him so much and I know he would be comforted by me being there.  I am so worried about him.  I had never heard of BPDCN.  Any encouragement would be appreciated.  Thank you, Nessie

FDA approves BPDCN treatment Created by RareshareTeam
Last updated 5 Jan 2019, 10:08 PM

Posted by RareshareTeam
5 Jan 2019, 10:08 PM

See Community Resources for news link.

Blastic Plasmacytoid Dendritic Cell Neoplasm Created by Michelledutch
Last updated 30 Aug 2015, 11:07 PM

Posted by oldtree
30 Aug 2015, 11:07 PM

Hi Elaine, Yes still here fighting away. I'm really sorry to hear the bad news. Yes you will have to be very strong for Nigel, he will need you to be his rock in a hard place. I will have my fingers crossed for Wednesday. Love Michael x

Posted by shammahbn
29 Aug 2015, 10:08 PM

Elaine, I am so sorry to hear this! I will pray for him. I have no advice for a situation like that, but I will pray someone will come along who can give you good advice. Have you checked into the possibility that Dr. Frankel's SL-401 is worth trying?

Posted by ELAINE5833
29 Aug 2015, 05:19 PM

Hi Michael, I hope you are still doing well, and trust this message finds you in good health. Am afraid about 8 weeks ago Nigel had a lump appear on his arm, in exactly the same place as the original lumps. I had a bad feeling as soon as I noticed it. We called the hospital and they had him go in straight away to have an emergency PET CT Scan, he had the results and they said they were cancer clear but he had arthritis (not nice but a huge relief as it was only arthritis) Anyway 4 weeks later he went back for his regular check up and saw a different consultant (the top bloke) who wasn't happy with the lump and sent him for a biopsy the same day. Sadly the dreaded BPDCN is back and he now has another on his leg. They have removed both. HIs scan showed something on his bowel also which they hope is a polyp, but they removed it last week and we get the results back on Wednesday. If it is BPDCN then he has to have more chemo. If that is just a polyp then its radiotherapy on his arm and leg and another stem cell top up from his brother. To say I am devastated is an understatement but Nigel is such a positive person so I remain positive (in front of him anyways) and I guess we will just take each day as it comes again. Take Care Elaine x

View Full Thread (36 more posts)
Diagnosis of Blastic Plasmacytoid Dendritic Neoplasm Cell Leukemia Created by jodiruhe
Last updated 6 Dec 2012, 01:38 AM

Posted by jodiruhe
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!

Posted by shammahbn
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!

Posted by oldtree
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":

View Full Thread (1 more posts)
Low Dose Naltrexone Created by kwickheim
Last updated 24 Nov 2012, 05:32 AM

Posted by sankah
24 Nov 2012, 05:32 AM

Hi Everyone! I am so glad to hear that kwickheim's father is responding to the dexamethasone and doing better. My father was also given dexamethasone as part of his treatement for this cancer in additon to the 2 rounds of hyper C-VAD and 2 rounds of methotrexate chemo, followed by total body irradiation and stem cell transplant. The Dexamethasone he was given as part of his treatment also helped to diminish his skin lesions very quickly and I think played a role in helping to diminish the quick pace that this cancer moves. This medication reacted quickly, in a matter of days to reduce the lesions and then cause them to disappear completely. We were very blessed to have a young man from New York donate stem cells for his transplant. Although the blood types were different, he was a 10 point match with my father. We are so thankful to this anonymous young man for his gift of life and for his sacrifice. We just passed the hundred day mark post stem cell transplant on Wednesday. All scans so far are clear of cancer. My father is doing well so far with minimal side effects except fatigue , low blood counts, and the occassional infection or nose bleed and edema in his legs. We continue to study and read anything and everything about any changes in treatment options and look forward to hearing from others who are walking this journey like us. Wishing everyone all the best and hope and pray for successful outcomes for all!

Posted by kwickheim
23 Nov 2012, 05:45 AM

We went into the appointment with the Naturopath Dr simply looking for symptom relief, namely help with appetite and energy levels - we were very surprised by this suggested treatment and in his confidence that it could for all intents and purposes stop the disease. The dexemathasone worked immediately (as it will) in shrinking the extrernal and internal tumours and he is still on it - as our dr is also licenced for pharmaceuticals he would have started my dad on the dexamethosone for had he not been on it, so I don't know that the Naltrexone would have had the immediate physical effects as the steroid. We are only moving into week 3 of the Naltrexone and it is a drug that you build up in dosage rather than taper down like with Dexamethasone so we are still a week away from it being at the levels where it will start to affect the disease - a frightening waiting game but this protocol gives us at least some hope - where we originally were given none.

Posted by shammahbn
23 Nov 2012, 04:43 AM

I have a question about your dad's results. Has this done anything for the lesions? Or maybe that question is irrelevant because the steroids (dexamethasone) had already taken care of them. I'm curious whether the diet and naltrexone appears to be reversing the effects of the disease or just providing better strength and health while the disease progresses. Not that strength and feeling better are a bad thing even by themselves! That, of course, is a terrific benefit, even it didn't seem to be healing the disease. If it also appears to be turning the course of the disease around, that's really, really great.

View Full Thread (2 more posts)
Blasted Blastic Dendritic Cell Neoplasm! Created by BarbNTexas
Last updated 21 Nov 2012, 12:38 PM

Posted by oldtree
21 Nov 2012, 12:36 PM

Dear BarbinTexas, I'm very sorry to hear your news, I found you story very difficult to read, it must have been a heart breaking time for both you and your father. It is very difficult with both diagnosis and treatments as everybody is different and even our responses to diseases and treatments are unique. This is a very agressive and rapid disease, I felt breathless for a few months but it was not until the lymph nodes swelled up that I knew something was wrong and by the time I had my first bone marrow biopsy the bone marrow was 60% gone. I know from reading the literature that everybody has responded differently to treatment and although I was middle aged and very fit before I got sick I have been left with serious side effects to various parts of my body. I am sure you and your dad made the best possible choices at the time and sometimes there is no choice but to follow the advice and guidance given by the experts in this field. It sounds like you respeced your fathers wishes right to the end and that can sometimes be difficult when the medical professionals mostly focus on trying to cure you. You were very brave to tell us this story online and hopefully with time the anguish of your father's disease will lessen in your memory. I also felt it important about my wishes so I was very adamant and vocal about my wishes and still am.

Posted by shammahbn
21 Nov 2012, 11:53 AM

Wow. I'm sorry for your loss. I had a heart attack from lack of blood while I was in the hospital being treated. It's possible your dad didn't even need the open heart surgery or the bypass, just more blood. This type of leukemia/lymphoma is so hard because it can crop up with no blood system symptoms at all. May God give all of you peace.

Posted by BarbNTexas
20 Nov 2012, 08:20 PM

I just found this site. My family is still reeling from the death of my dad, Bob, less than a week ago. It's almost Thanksgiving 2012. Dad went to his local dermatologist in June and had a small lesion lanced to drain blood on his cheek. When it didn't heal but only got bigger, he was sent on to a local oncologist who biopsied it, then after several weeks finally called it skin lymphoma and started localized radiation - 16 treatments which ended in September. Oct. 4 he celebrated his 85th birthday and even played golf. But he was noticing that he was getting more and more tired, and losing his appetite (by November had lost 15 lbs). A couple of weeks later, more lesions popped up on his chest and back. At first he was told it was a rash in reaction to the radiation (by his dermatologist). But a week later, the oncologist saw him and did another biopsy. This time, the lab results were so baffling, they arranged for Dad to be seen by a dermatologist specializing in T-cell lymphoma at MD Anderson in Houston on Nov. 12th. But on Nov. 2, I became alarmed when Dad said he didn't know if he would make it till then - he was getting to the point where he could barely get off the couch. And he never complains. (We live 3 hours apart, and I have been dealing with surgery and treatment for my own thyroid cancer, stage 4). So I called MDA and begged for an earlier appointment and got it for Nov. 5th! We were elated and hopeful - and glad to be at one of the best research hospitals in the world. We started with their dermatologist, who originally thought it was t-cell lymphoma of the nasal variety because he had lesions inside his mouth. This was very treatable and good news, she said. A biopsy was taken of his palate and also his back, which by now was covered in nickel sized light brown flat spots; he also had blood shot eyes, and what looked like a black eye (as if he'd been in a bar fight). From there, she sent us to their Head and Neck specialist - - who completely disagreed with the earlier diagnosis. This was an ominous sign. The next day we came for a 10am appointment with a lymphoma doctor. But when we arrived, we were told his appointment was changed to 2pm with another doctor within the same dept because he was more experienced with my Dad's type of cancer. At that appointment, the doctor said this cancer didn't fit into a specific box - it had markers in many types of cancers. He knew it was aggressive and fast growing, but said his research team would be working on it through the weekend after pathology was done, and they would come up with the best plan of attack. He said he thought he could gain Dad a few good years, to which Dad happily replied, "Well, that might be enough!" A PET Scan was done that evening and we were sent home, and told to return Monday the 12th. My brother flew in from Florida to stay with Dad over the weekend so I could rest and be with my daughter. We planned to meet at MDA in Houston Monday. But Saturday morn, Dad woke up with chest pains. My brother, a fire chief, got him to the small local hospital, who ambulanced him to a larger hospital 45 minutes away. Shortly after that, they performed open heart surgery on him for a triple bypass. As I was rushing there enroute, I was trying to connect the cardiologist with the MDA specialist, so they would have a better idea of Dad's condition. But to no avail. Dad made it through surgery but his blood pressure continued to drop no matter how many blood products they pushed. That night, they opened him back up to repair internal bleeding. And the next day, another surgery to remove a balloon pump in his groin that was supposed to support his heartbeat but wasn't working. He was not improving. Finally, on Monday, I was able to talk to the MDA doctor. That's when we got the diagnosis of blastic dendritic cell neoplasm that had morphed into leukemia. MDA gave the hospital's oncologist instructions. She told us Dad had maybe two months to live if he made it through this. We had a Do Not Resuccitate order on file, but apparently, no one read the file till Wednesday. We didn't realize that everything they were doing was total life support, because Dad was no longer intubated, was able to talk, drink - and by Tuesday cardiac rehab even got him out of bed and into a recliner. But the stress from that seemed to push him into a tailspin and he began to suffer from achiness all over and a terrible spasm in his back. They couldn't give him enough drugs to alleviate his pain. I rubbed his back, and applied heat and ice - soothed him the best I could. On Wednesday - late afternoon - my brother was talking to the ICU doctor and mentioned the DNR order. The guy basically flipped out and said he has been on full life support the whole time. We urged him to look at the file and confirmed that Dad only wanted compassion care if there is no hope for recovery - - to be freed from pain. That changed everything. At 5pm, all cardiac drugs, antibiotics, and blood products were removed. Dad was put on a constant morphine drip. I held his hand and was relieved when his face relaxed and he was able to sleep with only the one IV and an oxygen mask. At 10:30 that night, Dad's breathing slowed down till he took his last - dying in peace. I have tried to remove emotions out of this, but obviously, this was terribly traumatic for all of us. We are still in shock, really. Although some may think Dad suffered in vain against his wishes, I am thankful that he used that time to tell each of his kids how much he loved us and we told him the same. But if there is any lesson to come of this, it is that the DNR order must not only be on file, you have to keep telling doctors and nurses at each shift that it is in place. It would be nice to be told bluntly exactly what shape the patient is in - - we had no idea Dad was dying... their politically correct way of dealing with us was so vague. We were clueless. If the Titanic is sinking and there is no hope, just say so! Also, it would be so nice in this digital age for medical information to be shared more freely when it is really needed. In my opinion, Dad never would have chosen heart surgery had he known the diagnosis to begin with. I hope this story can help someone else.

JNWILDER Created by jnwilder816
Last updated 24 Jun 2012, 10:22 AM

Posted by shammahbn
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.

Posted by pdagher
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.

Posted by shammahbn
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!

View Full Thread (9 more posts)
Blastic Plasmacytoid Dendritic Cell Neoplasm JudyC Created by JudyCarstens
Last updated 30 Jan 2012, 01:06 PM

Posted by shammahbn
30 Jan 2012, 01:06 PM

Hi Michael, thanks for dropping in! Michael always knows the right thing to say to keep you going.

Posted by JudyCarstens
29 Jan 2012, 03:52 PM

Hi Old Tree! Thanks so much for sharing. I am sorry that you have to go through this so young. I think you have a better chance of fighting for your life at your age because the hope Is your treatment will give you more time. No one can understand what we are going thru but those who are going thru it right? And then each one is different as you pointed out with non skin symptoms. I was not aware of that. Thinking that may be a part of what I have gone thru the past few Weeks and recently worse the past 4 days. My pain shows to most nothing but is Around my neck, and I have swollen nodes there (not too visible to others) but I feel it. My doctor wanted to try a medication to help that but I became so ill from the meds the Other night that I wanted to throw in the towel as it was a 10++. The most help I have found is from ICE. It doesn’t remove all pain but does give relief so I feel like Talking and even walking around the house outside even. I am blessed with children your age and they are in the prime of their lives so that Makes me happy. For you I will be happy to put you on our prayer list and your Family too. I can see why you so want to be there for your children. The ages they Must go thru are the best in their lives and they need their daddy. I am sure you Will leave them someday but will have had the opportunity to know you in a Very special way. We all want the best for them and want to leave the best examples We can. May God Bless you and Give you strength to see yourself through. I am also fortunate to have a husband who is and wants to care for me. He will be 81 next month and has some challenges of his own. He is mostly healthy for 81 & only takes a pill for prostate. He does have a severe Callous and broken down arch which causes it so his walking is painful and nothing seems to help all that but cutting holes in his shoes. We are thankful to be so healthy. I like you would want “dignity and a pain free end” (In your words.) Please keep in touch! Thanks so much for Sharing. I am in Arizona USA. Judy

Posted by oldtree
29 Jan 2012, 12:29 PM

Hiya Judy, I am sorry to hear of your diagnosis. As you know it is a very rare and agressive lymphoma with a heavily negative prognosis for the over 65's and under 18's. To be honest it is a heavily negative prognosis for all from the research that I have done. There are some advances in the understanding of the disease in that possible treatments that work on similar diseases and now being tried, such as high dose hyper cvad chemo along with total body irriadiation and a stem cell transplant, but the treatment in itself is very severe on the body. My symptoms were of the non skin type, swolen lymphs, from which the pain was so bad that even a morphine pump did not kill the pain, about 10% get non skin symptoms. It is good that you will get a sort of extention from the maintainance regime and that you are pain free. I think you are also very lucky to have made it to 77, given what i know I will be lucky to make it to 50 but hope to make it till my children are grown up a bit, the youngest is only 5. I confronted my own mortality during my treatment and was very set in that I wanted dignity and a pain free end. I am now 18 months post treatment 27 months post diagnosis and very frail, but delighted to be here as I expected to not be.

View Full Thread (1 more posts)
KennyK Created by Michelledutch
Last updated 18 Jan 2011, 02:00 PM

Posted by KennyK
18 Jan 2011, 02:00 PM

Hi, Michelle, Yes, my email address is I would be more than happy to talk with you. My phone number is 727-321-9380.

Posted by Michelledutch
16 Jan 2011, 08:48 AM

Kenny, Is it possible to contact us? Regards, Michelledutch

Community External News Link
Title Date Link
FDA approves new treatment for rare disease of the bone marrow and blood 01/05/2019
Community Resources
Title Description Date Link

Clinical Trials

Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit to enroll.

Community Leaders


Expert Questions

Ask a question

Community User List

My husband is currently fighting BPDCN and I am just trying to be the best support I can be.
Begin to get treatment at Stanford,from bpdcn.


My mother was diagnosed with BPDCN this July 2013. She just underwent her 1st round of Hyper CVAD chemo. 3 days after she was admitted to the hospital with a fever and now is receiving neurogen...
My 85 year old Dad was diagnosedby MD Anderson with blastic dendritic cell neoplasm three days before he died.
My son, (28 y.o.) was just diagnosed with this disease yesterday. We are just starting down a difficult path. We are fighting against cancer and fighting for faith. I cling to the fact that God has...
My husband was diagnosed with BPDCN in November 2008, underwent an allogenic nonmyleoblative haplo BMT in March 2009. He relapsed in November 2011 and after more chemo and DLI, he relapsed again in...
Father was recently diagnosed.
I am 21 years I was told last month that I have Blastic Plasmacytoid Dendritic cell Neoplasm my God how could that be I still could not beleive it. I am from Lebanon
My niece was diagnosed with this disease in January of 2012. I am just looking for more information on the treatments and prognosis of others.
I have plasmacytoid dendritic neoplasm. I get subcutaneous tumors at the rate of about 10 every tawo weeks. Sometimes more and sometimes less. My doctor injects kenalog 40 into them and the success...
my mum has blastic piasmacytoid dendritic cell neoplasm its very rare if anyone has had this or a family member more information about it would be great my heart is broken and if i can help my mum...
I am retired and have been married to Del for almost 56 years. We live in a retirement area in Mesa, Arizona.



We are happy to be a part of a Prayer Chapel Ministry which we have been...
Diagnosed with Blastic Plasmacytoid Dendritic Cell Neoplasm on July 5, 2011. I've been walking with God for almost 30 years, and I've learned to see things through his eyes. All things work...
My sister of 46 has been diagnosed with blasticplasmacytoiddendriticneoplasm in May of 2011. She has been ill since November of 2010. She has no lesions at this time.
Patient advocate and friend of cancer survivors
i have bpdcn.
My dad has been diagnosed with blastic plasmacytoid dendritic neoplasm.
Diagnosed 1 year ago with BPDCN. Had stem cell transplant 56 days ago. VERY weak but doctor says cell counts look good. Having 2nd bone marrow test since transplant, today. Haven't talked to anyone...
Response to KennyK:



I acquired this disease in the late fall of 2008, I received HYPER-CVAD along with 100 grams of intravenous vitamin C per day, which produced a rapid and complete...
I'm a 61 year old guy who found out in April, 2010 that I ha contracted Blastic Plasmacytoid Dendritic Cell Neoplasm. I live in Saint Petersburg, Florida and have been consulting with ocologists at...
My Husband was just diagnosed with this April 2009 He is starting chemo 5/2/2009

Start a Community

Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Clinical Trial Sl-401, Venetoclax and Hyper CVAD

Created by Nessie | Last updated 4 Sep 2020, 05:51 PM

UX TESTERS NEEDED: HelpAround Specialty Patient App

Created by | Last updated 10 Jun 2020, 04:53 PM

FDA approves BPDCN treatment

Created by RareshareTeam | Last updated 5 Jan 2019, 10:08 PM

Blastic Plasmacytoid Dendritic Cell Neoplasm

Created by Michelledutch | Last updated 30 Aug 2015, 11:07 PM

Low Dose Naltrexone

Created by kwickheim | Last updated 24 Nov 2012, 05:32 AM

Blasted Blastic Dendritic Cell Neoplasm!

Created by BarbNTexas | Last updated 21 Nov 2012, 12:38 PM


Created by jnwilder816 | Last updated 24 Jun 2012, 10:22 AM

Blastic Plasmacytoid Dendritic Cell Neoplasm JudyC

Created by JudyCarstens | Last updated 30 Jan 2012, 01:06 PM


Created by Michelledutch | Last updated 18 Jan 2011, 02:00 PM


Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.


Our Resources

Our rare disease resources include e-books and podcasts





Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.