Still here and ageing quickly 

Had my lenses in my eyes replaced due to cateracts from the radiation treatment a few years back, and have recovered from a pulmonary embolism and collapsed lung last October. Hyperbaric treatments really helping out the lungs and curbing the chronic fatigue. 

Hello Michael. I have been reading peoples stories on this blog and you seem very knowledgeable and active on this disease. My husband and I are Canadian. Bob, who was 73 at the time was diagnosed with BPDCN in late February 2021. He had hyper-CVAD and a stem cell transplant in June 2021. He was doing remarkably well until he got two viruses, RSV and Epstein-Barr, at the same time. This was September 2021. The RSV almost killed him but the rivpbavirin treatments given in a negative chamber environment worked and he survived. He was also treated with rituximab for the Epstein-Barr.
Bob’s blood counts plummeted after this and he went for months with no immunity, blood transfusions and platelets. In March 2022, he received IVIG and his counts jumped up immediately. Unfortunately, the day before IVIG he was having confusion and trouble walking and when I mentioned it in the clinic at his IVIG infusion, they did a brain scan and found a tumour (I believe in the right temporal lobe). After multiple tests it was diagnosed as BPDCN. He is now receiving intrathecal chemo for the tumour and azacitidine injections to keep his body in remission. The docs say his tumour is in remission now. Bob’s health seems to be declining rapidly with bouts of confusion, memory loss and severe weakness. I will be phoning his doctors tomorrow, July 10, 2022 to report this decline which has been about a week.

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

Hello Nessie,

How is your husband doing? 
 

My husband was diagnosed with this disease in February 2021. I was at least able to see him twice a week for 4 hours while he was undergoing chemo and his stem cell transplant. We live in Ontario and he has been having treatments at Princess Margaret Cancer Center in Toronto.

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

See Community Resources for news link.

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!

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!

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":http://www.lymphomainfo.net/questions/general-lymphoma-questions/blastic-plasmacytoid-dendritic-cell-neoplasm-formally-nk-cell#comment-2915 "LLS":http://community.lls.org/message/120623#120623 this is the doctor you mention in texas "Doc Frankel":http://www.sw.org/Dr-Arthur-E-Frankel Stemline SL401 "Stemline":http://www.stemline.com/newsArticleDetails.asp?id=47 First SL401 patient's blog: "CAM":http://www.caringbridge.org/visit/camwagner

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!

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.

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.

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.

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.

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.

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.

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.

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!

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

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

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.

Hi, Michelle, Yes, my email address is Kaekae51@aol.com. I would be more than happy to talk with you. My phone number is 727-321-9380.

Kenny, Is it possible to contact us? bpdcncancer@gmail.com Regards, Michelledutch