The Leukemia & Lymphoma Society - Fighting Blood Cancers
82 Replies Latest reply: Apr 10, 2014 7:52 AM by oldtree RSS

Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)

wwhiskerss Registered Users
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Hi All

 

Well it all started with back pain. My Husband 39 thought he had pulled a muscle in his back helping a friend tear down a shed. He went to his primary and was sent home with pain killers. The next week we called the doctor because  the pain had moved into his chest and he said he was having trouble breathing they said "go to the ER" The ER doctor told him that sometimes back pain can radiate into your chest "here's some more pain killers". another week goes by and the pain in his chest gets worse (excruciating) so off to the ER we go. hours & hours go by and test after test show nothing. The pain was so bad the pain killers were wearing off after about 20 min. Finally 13 hours later he was sent to a room on the oncology floor (ironically that was the first available bed) 2days later they do a Bone Marrow Biopsy because all 3 of his counts are low (don't worry yet the doc said) We waited a couple of days and the doctor said he was worried about Lymphoma but were going to send the biopsy to Johns Hopkins for further testing. He was admitted Friday April 17th , on April 28th (my -b-day) The doctor told us he had NK Cell Leukemia (Natural Killer Cell) but Johns Hopkins was going to test further. We got sent to University Of Maryland Medical Center in Baltimore that night. UMM did their own BMB and told us the cancer cells were dead (from the Prednisone) given to him for the chest pain which by the way relieved his symptoms immediatley. So anyway the official diagnosis is Blastic Plasmacytoid Dendritic Cell Neoplasm , which is VERY RARE and according to the Internet not curable and usually presents with skin lesions (my husband didnt show any) There are very few cases reported and not very good outcome, I tried to study it on the Internet because the doctors cant really tell me anything cause they don't know ( they are going by the other cases)  He is doing EPOCH Chemo and has just finished up his 2nd round. He does 96 hours every couple weeks.The plan is to do at least 6 rounds and then a BMT.  He is doing very well  the only side effects he has is his hair loss and sometimes headaches from the spinal taps. I have only found 1 new case which is actually very close to where I live . He got diagnosed in Nov and has already had his BMT  they are treating him for leukemia ,they say they are treating my husband for lymphoma (I forgot to mention that my husbands was only in his bone marrow) We think we caught it very early. Anyway I would really like to find out more info on this if anybody has heard of this and anything else you would like to tell me

 

Thanks for listening

Vicki

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    Tex Registered Users
    Currently Being Moderated

    I don't even know where to point you.  We do have a lot of forums here.  Let me ask a couple of questions.  Is this actually a blood cancer?  Is it a myeloproliferative disorder?  Is it a blood condition or something else?

     

    You did say he's being treated for leukemia, is it a leukemia or are they just using a treatment protocol that is used for leukemia?  If so, what kind of leukemia?  You also said they said they're treating him for lymphoma?

     

    I dunno.  This is pretty confusing.

     

    Any more info you could offer would help us direct you to the appropriate forums where you might be able to get some support from people at least dealing with the same thyp of things you are.

     

    Blessings

    • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm Formally called NK Cell(anybody heard of it?)
      wwhiskerss Registered Users
      Currently Being Moderated

      Hi

       

      Our doctors told us he was being treated for Lymphoma -  I guess because his is only in his marrow. The other guy (case) I found is being treated for Luekemia. I read on his blog that he had alot of other symptoms problems with his speen swollon lympnode etc..  so I'm guessing we caught my husbands very early. They say there are not many cases reported so I would like to find some. Also I forgot to mention this disease was formally know as NK cell Leukemia/Lymphoma

       

      thanks again

      Vicki

      • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm Formally called NK Cell(anybody heard of it?)
        Tex Registered Users
        Currently Being Moderated

        Well, I'm really sorry I don't know what to say here.  It seems that with only marrow involvement treating it as a leukemia would have been the preference.  I'm not trying to cast doubt on your docs here.  I'm just trying to show the level of my confusion.


        I'm also guessing if they're calling it NK that it must affect both the lymphocytes and some of the other white cells as "NK" covers more than one type.  I've been posting here over four years and don't remember a case like this.  But we're a group of blood cancer patients, caregivers and survivors here.  At least you might find some meaningful company.


        Wish I could help,


        Blessings

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    khenry Registered Users
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    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

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    frustrated Registered Users
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    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

    • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
      wwhiskerss Registered Users
      Currently Being Moderated

      Wow - I'm sorry to hear about your mom, My husband is doing very well- he was in complete remission after his 3rd treatment (I think the caught it really early)

      They are going to do an auto-transplant within the next month. Where do you guys live. My husband didn't have the skin involvment. I found another guy in Mcclean , Va who was diagnosised in November  skin involvment either- He was way worse off then my husband & And he is good now after having a donor transplant. if you give me your email - I can send you all the files I downloaded to my computer ( Be prepared they are not good news) I can also maybe hook you up with our doctor here in Maryland.  Our Doctors disn't really know what to do because it's so rare (but it seems more people are being diagnosed with it recently. Of course our doctor says there is a  50% chance it will come back & also a side effect of chemo is getting cancer somewhere else. But I believe positive thoughts WORK!!!! They have so far :-)

       

      He was treated with EPOCH chemotherapy for 96 hours every 21 days.  Please keep in touch with me!!  My email is wwhiskerss@hotmail.com

       

       

      Thanks

      Victoria Dement

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    MARY5 Registered Users
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    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

    • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
      wwhiskerss Registered Users
      Currently Being Moderated

      Hi Mary

       

      I'm sorry to hear about your brother. Where are you guys from? Are you happy with the doctors/treatment at WCI? Can you maybe call University of Maryland Medical Center to see if he can be treated there? Or Johns Hopkins? I believe they are more well know for transplants. You can order all kinds of books FREE from The Leukemia & Lymphoma Society. & contact Marrow.org to organize a bone marrow drive. My husband actually just had his transplant last week. He didn't match anyone in the entire national registry. The doctors think with the autotranplant he will have more of a chance for lon term survival. He had an Auto-transplant (using his own stemcells) Like I said before I think we caught his very early. He has done very well with everything. He was in complete remission after his 3rd chemo treatment. If you have any questions please feel free to email me wwhiskerss@hotmail.com

      Good luck to your brother & your family

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    KennyK Registered Users
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    Yes, I was diagnosed with Blastic Plasmacytoid Dendritic Cell Neoplasm in May of this year.  I am experiencing multiple lesions on my body, and a positive biopsy on my lymph gland.  It was July before I was able to consult with an oncologist at Moffit Cancer Center in Tampa, Florida who was familiar with this type of cancer.  Moffitt is a very large institution and I am the only patient with this condition, it is so rare. I also researched it on the internet and everyone at Moffitt has confirmed the mortality rate of 12-14 months.  The only treatment with any positive result is a bone marrow transplant which requires massive doses of chemotherapy, and at least five months spent in the hospital and a residence near the clinic.  But it is all a  roll of the dice as no history of survival rates has been developed to date.  I am continuing on the preliminary testing and the search for a donor.  But as for me, a lot of deliberating the pros and cons of the procedure will be done before I commit to it.  I highly recommend Suzanne Sommers' new book "Knockout".  It reveals the many alternative treatments maverick doctors are developing which are actually "curing" cancer.  I wish you and your husband the best possible outcome of his condition.  And know that the Hand of God is always with you and guiding you through the entire process of this unimaginable disease.

    • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
      wwhiskerss Registered Users
      Currently Being Moderated

      Hey there. My husband is doing well. He had a donor transplant April 9th. A 25 yr old female is all we know right now. Not allowed to contact the donor for a year. How old are you? My husband Kenny was 39 when diagnosed. Had an auto transplant in october and we found out the cancer wad back in full force feb 26. Anyway he was very lucky to have found a 7/8 match. It's very hard to find a donor what nationality are you? If you can make it to Baltimore, MD. I recommend our hospital university of md medical center. Or johns Hopkins  we know a man that had a transplant for the same thing and in march he celebrated his 1 yr anniversary he was treated at johns Hopkins.  I am so glad I posted this thread because ever since. I have found so many people newly diagnosed with bpdcn. Good luck to you and let's keep in touch

       

      Thanks for contacting me

      Best wishes

      Put up a good fight! You CAN win !!!!!

      Vicki Dement

       

      Sent from my iPod

      • Treatment results of BPDCN and new diagnosis
        BPDCNguy Registered Users
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        Thanks you so much for updating how you are doing! It's been almost a year since the last update on this thread, but it was nice to see at least a temporarily successful transplant.

         

        I was just diagnosed today. There is a firm diagnosis from the pathology lab, but the doctor wants the hospital to validate it before he looks at treatment. He's waiting for the marrow slide to be delivered, I guess tomorrow. He didn't tell me how bad the prognosis is for BPDCN. I found out on the internet! Boy, was that a shock.

         

        I'm a Christian. I think all things work together for good to those who love God and are called according to his purpose. I've been living like that for 3 decades, and this has done nothing to change my mind. In fact, the peace of God is tremendous, though it took a few minutes to get back in the present and out of the future when I found out the prognosis!

         

        Anyway, unless there's a better place to keep people updated, I'll try to update here so that the next person that comes along can get details. I have two lesions, the start of a third, and the first one I had just went away on its own. But my blood problems are enough that they thought I probably had acute leukemia until this weekend. So I don't know how far along I am, though my first lesion arose about 4 months ago.

        • Re: Treatment results of BPDCN and new diagnosis
          Tex Registered Users
          Currently Being Moderated

          Don't believe everything you read on the Internet.  Ask your doc how he thinks about your prognosis.  Ask an expert.  There is simply too much false information on the 'net and too much out-of-date information to trust it.  Besides, the 'net doesn't know your particulars.

          • Re: Treatment results of BPDCN and new diagnosis
            BPDCNguy Registered Users
            Currently Being Moderated

            Thank you for the tip. I do already agree with it. I've spent a lot of time doing internet research, so I'm pretty good at prioritizing sources. For something like BPDCN, I read medline papers. I then watched to see what other papers were referenced the most. The newest of those was published in 2010 and reviewed all 47 cases listed in some database that the French medical establishment maintained. I could only get the abstract, so I had a professor friend print off the entire published paper. I then asked Dr. Strickland what he thought of the conclusion of that paper.

             

            That's how I do internet research.

             

            The basis for such research is that I completely agree with you. You can't just believe anything you read on the internet, but with some care it's an awesome resource.

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    Roxanne.James Registered Users
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    would love to learn more about this disease

    • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
      BPDCNguy Registered Users
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      Yeah, I was diagnosed with that two weeks ago by the pathology lab, but the doctors here at Vanderbilt refused to confirm it. They said there's not enough markers. So now I'm just "undifferentiated" acute leukemia. I overheard the doctor mentioning my previous BPDCN diagnosis and referring to my case as "rare" and "unusual."

       

      Chemo started today, so I don't have 24 hours yet!

       

      I have two lesions on my back, each about 2 inches diameter, close to circular, very close to one another, that would be typical of BPDCN. (I have pictures on my leukemia blog.)

       

      How old is your father?

       

      I'm at Vanderbilt in Nashville, Tennessee, by the way.

      • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
        CBCACJ Registered Users
        Currently Being Moderated

        Hello All!

         

        My husband C.A.M. is the guy from McLean, VA Vicki refers to in earlier posts. He was diagnosed with BPDCN in Nov 2008 and had his BMT at Johns Hopkins in March 2009. He is thriving and living a full healthy life by the grace of God. Something just triggered me to log on tonight because it has been awhile and my heart sunk to read about more recent posts and new diagnoses. I had to post something to give HOPE that you CAN overcome this disease! My hubby is living proof. Never underestimate the power of prayer because it works! I will be praying for you all as you battle through this. I do believe statistics are going to continually improve for this disease as they learn more and do BMTs immediately after the 1st remission.

         

        PLEASE know that we are here for you and are happy to answer any questions or provide any support we can. Feel free to check out my husband's blog at http://www.caringbridge.org/visit/camwagner. That tells our story really from beginning.

         

        Blessings to all and please keep us posted with progress!

         

        Becky

      • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
        MyHope Registered Users
        Currently Being Moderated

        My husband was diagnosed with blastic plasmacytoid dendritic cell neoplasm today, July 29, 2011.  They originally thought that he had ALL which usually runs in children and the survival rate is very well, but they are still in clinical trial with adults.  He is covered with what looks like black and blue marks about his face, back, chest and some on his legs. The black and blue marks are from low platelets.   It is a very rare leukemia and very aggressive.  If left untreated your survival rate will be weeks or months at the most.  The blood counts are very low and he is getting blood transfusions. The doctors said that they have to treat this very aggressively.  He starts Chemotherapy on Monday or Tuesday of next week.  They have only seen 3 cases of this rare leukemia in this hospital, and have have had three remissions, with one dying.  But then we don't know of the underlying problems of the person that did not survive.  So 2 out of 3 gives us some hope.  We are in Gods hands right now and we cannot whine and whimper over things that are out of our control.  When this world closes in on us, we have to remember Jesus’ example.....to slip away and find a quiet place to pray. We feel that we are in good hands with the doctors that we have. They are bone marrow transplant specialists with training at the Mayo Clinic.  He will need a bone marrow transplant, and has a brother who has agreed to donate if he is a match.  I did not know that siblings were only 25% of a match.  So I can only pray that he is.  My prayers are with all of you during this very scary time.  Please keep us in your prayers.  God Bless you all.

        • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
          CBCACJ Registered Users
          Currently Being Moderated

          I am so sorry to hear about your husband's diagnosis. This is a very scary time I know. I remember it like it was yesterday.  But, I hope you find peace in knowing that you have the answers and you can move forward with treatment. Also, they know more about this disease now. All the scary statistics stem from when they were treating people with just chemotherapy and not doing BMTs. Now we know a BMT is crucial to long-term success and you are in good hands. Definitely get chemotherapy started asap. My husband was treated with an AML regimen of chemo and had two 30ish-day stays at Johns Hopkins for his induction and consolidation rounds of chemotherapy. We were disappointed to find out during that process that he did not have 1 match in the BMT registry and his sisters were only a 3/6 or 50% match. We did lots of bone marrow drives and prayed but still no match. What started as a crushing disappointment, ended up being an amazing blessing b/c with the amazing wisdom and guidance of the doc's at Johns Hopkins, he did a (clinical trial) out-patient half-match mini-transplant(less chemo and radiation) with his youngest sister and it has had amazing results with very little Graft vs. Host Diseaese. (The medical term is called a non-myeloablative haplo-identical transplant, fyi). So, just know, in summary, that there is HOPE (I love your user name by the way) and God will carry you through this valley. Just lean on Him and let all the cares and details on this world just fade away. Focus on just loving your hubby and being there for him. It is hard but you will get through this and be stronger than you ever thought you could imagine! (don't be afraid to let the tears fall though..mourning and sadness are totally normal).  Don't hesitate to email or post if you have any questions. I think we have a BPDCN club starting here!

          • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
            MyHope Registered Users
            Currently Being Moderated

            Thank you for your quick response to my post.  You have given information that will help me understand my husband's treatment.  He started Chemotherapy yesterday in the lumbar spine and then 2 drugs intravenously and one drip, so 4 in total.  The hospital did the lumbar with a machine so that they knew exactly where to put the needle.  They will be treating him with the ALL regimen of Chemotherapy.  I spend 10-12 hours a day with him on weekends, and visit him after work so we can have dinner together.  His fuse is very short right now, so I have to watch what I say.  I cannot imagine how he must feel inside, and I pray everyday that the Lord puts his cloak over him to keep him safe and healthy.  He brought him into this world for a reason, and brought us together 20 years ago.  I am also on the National Bone Marrow Registry as a potential Donor and deep down inside I pray that I am a match, but that is probably not likely.  He is a fighter and will never give up this fight.  He knows it's going to be a roller coaster and I will be right there with him for the ride.  My prayers are with you all.  God bless you.

            • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
              BPDCNguy Registered Users
              Currently Being Moderated

              Hi.

               

              I was diagnosed with BPDCN by a pathology lab in early July. I had a couple good-sized, BPDCN-style lesions on my back and two starting to form, one on my collar bone, and one **in** my upper lip. (Imagine how that would have looked or felt had it grown!) Vanderbilt, however, refused to confirm the diagnosis. Too many questionable markers. They decided to simply list me as having an "undifferentiated" acute leukemia.

               

              In the time I thought I had BPDCN I did a lot of research on it. I think the prognosis is very hopeful with a transplant after the first remission, as you've already been told.

               

              The doctors had to guess how to treat my acute leukemia. They decided on an AML-treatment with a reduced ALL-treatment added. They talked about checking my spinal fluid, too, but I don't think they're going to do that.

               

              The chemo worked. It shrunk the tumors to nothing, and my marrow biopsy was clear, which was just last week.

               

              A positive attitude is everything. I wrote a page on my response to finding out I had leukemia, written from a Christian standpoint, at http://yippee-leukemia.blogspot.com/p/original-yippee-i-have-leukemia-post.html. I called it "Yippee! I Have Leukemia," and I titled my blog "Thrilled to Death." My wife threatened to write her own blog entitled either, "You're Killing Me," or "If Leukemia Doesn't Kill You, I Will."

               

              I figure that if it's really true that "all things work together for good to those who love God and are the called according to his purpose," then God was just opening the door for a hospital ministry now and, should I live, a new life with many open doors after I'm better. It's all good!!! We've gone into this not only with a positive attitude, but with joy. God gave us grace for that. We haven't had to work hard to maintain that joy. I have a 15-year-old daughter and a 9-year-old daughter, as well as two other sons at home and two sons grown and out of the house. They are doing equally well.

               

              It is true that we can do all things through Christ who strengthens us. The secret is that God doesn't give grace for next year, nor even for tomorrow. He gives grace for today, and today his grace is sufficient. Stay there, and you will have everything you need.

               

              Paul

              • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
                MyHope Registered Users
                Currently Being Moderated

                Hi Paul:

                 

                The way this all started, was that my husband was diagnosed by a dermatologist that we highly respected, and his credentials were impeccable.  He told him that it was a fungus, not once, but twice and prescribed an anti-fungal cream.

                 

                It progressively got worse, he had black and blue marks all over his face, chest, back, and legs.  Now it is on his arms.  He looked like he had a bad sunburn or even flew through a windshield from an accident.  He could hardly breathe just walking out to the car.

                 

                It wasn't getting any better so I sent him to a dermatologist that we used to see many years ago. He had some choice words for the first dermatologist, and if I were not a lady, I would repeat them.  He also did a biopsy of the skin, which the first dermatologist did not.  The first dermatologist said that he would do a biopsy next time, and kept putting it off, saying he didn't have the time to do one.  But he charged my insurance for it.

                 

                The second dermatologist sent him to his internist, who ran every kind of blood test under the sun.  The results came back and the platelets were at 68, the norm is 140-400, depending on the lab.  The red blood count was borderline anemia, which was causing the fatigue.  

                 

                His internist immediately sent him to the head of Hematology at our local hospital.  The Hematologist diagnosed it as Acute ALL Leukemia and immediately admitted him into the hospital.  Once at the hospital they diagnosed it again as Acute Peripheral Leukemia (the most common Leukemia's) and were going to send him home for outpatient treatment.   They finally did the bone marrow biopsy, and found that it was in fact the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN).  They also did a pet scan and found that it was so aggressive that it had spread to the brain.  They are treating the Blastic with an ALL regimin of chemo, and chemo in the lumbar (lower back) for the brain.

                 

                My husband is very positive and won't let any negativity between his two ears.  I thank God for that.

                 

                My finding this support group is a blessing from God.  I try not to read many articles on the internet because we never know who is writing them, it might not even be a doctor.  You need to find information from reputable websites.

                 

                I believe that God puts us in each other’s lives where we need to be, and when we need to be.  I'm blessed to have found this forum and am able to speak to others who are going through the same as me.  God is with you and every one of us, and will guide us through this, I have no doubt about that.  There is no problem, circumstance or situation greater than God.  Every battle is in his hands to fight.   And I pray that God our Father, walks through everyone's home and takes away all their worries and illnesses.  Please keep us in your prayers.  I will be praying for all of you.  God bless you all.

                 

                God Bless you and your family.  I will keep you in my prayers.

                • blastic plasmacytoid dendritic cell neoplasm
                  BPDCNguy Registered Users
                  Currently Being Moderated

                  With BPDCN, how quickly it's found can have a lot to do with how quickly the leukemia-type problems set in, such as your husband's anemia. My first lesions started in March, and weren't even significant enough to wonder about until the end of April. By the middle of June I was anemic enough to know I needed a doctor's visit.

                   

                  Of course, as I said, mine is not quite BPDCN.

                   

                  I'll be praying for y'all, too. The doctors here at Vanderbilt were concerned at one point that there might be cancer cells in my spinal fluid that would affect my brain. I don't think they are now, but they talked to me about that. They seemed to have some confidence that they could treat it even if there were leukemic cells in the spinal fluid.

                   

                  I think that's how it gets to the brain.

                   

                  Hopefully, that will turn out to be true for your husband, too.

                   

                  Actually, most hopeful of all is what is we Christians know to be true, that our lives are in the hands of God, and no matter what happens to us our goal is to be in the presence of Christ. He made all things, and BPDCN or leukemia are not frightening to him. He controls everything.

                  • Re: blastic plasmacytoid dendritic cell neoplasm
                    MyHope Registered Users
                    Currently Being Moderated

                    The first occurrence of these lesions occurred in Feb/March of this year.  It looked like a rash and the anti-fungal cream made it lighter and it disappeared.  In April, my husband visited his Internist to have blood work done because we both take medication for high blood pressure and high cholesterol.  So you should have blood tests every three months.  In April, his platelets were at 247, down from 277 in January, but still in the very good range.  So I think between April and June something went awry in his blood.  I just pray that we caught it in time.  It definitely has something to do with the bone marrow and he will have to have a transplant.

                     

                    In June the lesions came back, and with a vengeance.  They popped up everywhere and got very dark like black and blue marks.  July is when he visited two dermatologists, his Internist and the Hematologist.

                     

                    The first Hematologist that we went to, was upfront and didn't hold anything back, he told us the honest truth, and we respected him for that.  We had a wonder rapport with him.  Unfortunately, he transferred us to a better oncology facility and we could not keep him, since he didn't practice there.  The hospitals are sister hospitals but on different campuses.  He is a wonderful doctor and calls my husband to check up on his progress.  I've never met a doctor that did that.

                     

                    The doctor that has been appointed to my husband is in her early 30's, and very cold.  I don't appreciate when she keeps telling us to get our affairs and finances in order.  I know what she means, and I know what the risks of Chemotherapy are.  But if you’re going to practice medicine with cancer patients, please do change your bedside manners.  This is not the 1950's or 60's.  I would respect her more if she just told us the truth.

                     

                    My husband has had two days of Chemo and the rash on his chest is lighting up, almost like a black and blue that changes color.  He was ecstatic on the phone this morning.  I also pray that they caught yours in time.

                     

                    I think that most people who are looking at death in the face are more afraid of suffering before they die, and afraid of leaving their loved ones behind, but we will see them again, only in a different form.  This is just a shell that we have been loaned by God.

                     

                    I imagine death as peaceful, like falling asleep when being put under Anesthesia.  I also believe that there is so much love when you do go that you have never experienced here on earth.

                     

                    I always tell my husband, when the days comes, do not be afraid, I will see you on the other side.  I know that isn't much comfort, but to me, to be in the presence of Christ is very comforting.

                    • Re: blastic plasmacytoid dendritic cell neoplasm
                      MyHope Registered Users
                      Currently Being Moderated

                      This is a very very rare type of leukemia. Chemo will give you a life span of 3 months and remission. From reading about this, this type of leukemia cannot be cured. Doctors give 12-14 months, maybe 19. A bone marrow transplant might give you 3 years.

                       

                      Unfortunately, I do not have a success story to tell.

                       

                      My husband was diagnosed late due to misdiagnosis. And when they did diagnose it, it had spread to the brain. Chemo did clear up the lesions on the face and chest, but then he got pneumonia due to the prednisone lowering his immunity system from the Chemo and wound up in ICU for almost a week. It then spread into the blood stream and turned to Sepsis.

                       

                      We finally had to take him off of life support, but before we could, God came by and took him home.

                       

                      I hope never to have to read another story like this.  It is the worst thing I have ever experienced in my life.

                       

                      God bless you all out there.

                      • Re: blastic plasmacytoid dendritic cell neoplasm
                        CBCACJ Registered Users
                        Currently Being Moderated

                        There are no words and it is simply devastating to hear about losing someone to this dreadful disease that can sweep in so quickly and suddenly. I can't even imagine what you are going through.  All I can say is we will be praying for you. Experiences like this teach us how short this life is..(as the Bible says..."Life is but a Breath") and it may seem like a forever until you will see your husband again but in the light of eternity, it is just a blink of the eye. For now, just  take it one breath at a time and don't even worry about tomorrow. You can do this and you will survive. I hope you are surrounded by a good support system and can find a good grief support group. I hear that makes all the difference. You will never forget or get over losing your love, but you will be able to experience joy again one day. I gave my husband (39 yrs old, 27 months in remission now) an extra hug tonight as I shared the loss of one of his "BPDCN" brothers. He aches with me for your loss. Thank you for sharing at what must be an extremely painful time.

                        • Re: blastic plasmacytoid dendritic cell neoplasm
                          MyHope Registered Users
                          Currently Being Moderated

                          This has been the longest 5 weeks of my life since losing my husband.  It all happened so fast that I feel like a Mack Truck hit me.  I don't know how to mourn yet.  I fall apart at times when I least expect it, and have very good friends that make me laugh.  God knows I need that laugh.  Half of my life is sitting in my downstairs closet cremated in a box and I cannot fathom why.  I have been keeping myself busy cleaning out the apartment and renovating.  I've packed up special memories of my husband and put them in storage until the apartment is fully renovated and refurnished.  We never did estate planning, but I will now and am leaving a very large sum to the Leukemia & Lymphoma Society for research.  In his memory, I have to give back to victims of this horrible disease.  For those of you out there who have kicked this, God Bless you, I wish I were in your shoes.

                          • Re: blastic plasmacytoid dendritic cell neoplasm
                            BPDCNguy Registered Users
                            Currently Being Moderated

                            I am so sorry to hear of your loss, though I am glad for your faith!

                             

                            I've entered such a different world, where so many of the people I know have their lives on the line day by day. May God grant you peace and many loving souls to surround you.

                             

                            I'll be moving on to a transplant within a month, two rounds of chemotherapy under my belt. The time in the hospital has let me see the incredible struggles that some go through.

                             

                            Once again, I feel for your loss. I can't imagine what it is like to lose a spouse. May God give you abundance grace.

                            • Re: blastic plasmacytoid dendritic cell neoplasm
                              kgirl Registered Users
                              Currently Being Moderated

                              Hi NGuy......don't know if  you've read Greg Defoe's journal on his transplant.....If not, it is an incredible and definitive journal of what he went through, made fun of, was miserable with, and above all, survived, and has moved on, in tact, to help so many people, if a little rumpled from wear.   If/when it should become a necessary step on my path, his journal will be held close.

                               

                              Prayers and blessings,


                              Kgirl

                              • Re: blastic plasmacytoid dendritic cell neoplasm
                                BPDCNguy Registered Users
                                Currently Being Moderated

                                I searched for Greg Dafoe's journal and found it. Day -7 was very easy to relate to! In fact, there wasn't a paragraph I've read so far that I couldn't relate to from my first chemo round.

                                 

                                Except one thing.

                                 

                                He was back to work 14 days after transplant!!! That is unheard of, and this happened in 2002! Incredible!

                                 

                                Okay, well, I hope that I'm going to write a journal like that about six weeks from now. That would be amazing!

                                 

                                My journal's at http://yippee-leukemia.blogspot.com, but I'm not at transplant yet. I get the tests in a week, then two weeks to get approval from the insurance and order the cord blood stem cells, then the chemo and radiation to get me ready. Exciting month ahead of me! Thanks Kgirl!

                                • Re: blastic plasmacytoid dendritic cell neoplasm
                                  kgirl Registered Users
                                  Currently Being Moderated

                                  Wow....perused your blog (and if I wasn't such a dummie, I'd of known you had one!!!)   It seems, in hindsight, such a valuable tool, not only for you and your loved ones, but for us all. Your journal will be amazing, you are amazing.......sharing, laughing, poking fun, being vulnerable, being so very human.  Faith, love, courage and above all, heart. 

                                   

                                  Blessings of support, always!!!

                                   

                                  Kgirl

                                  • Re: blastic plasmacytoid dendritic cell neoplasm
                                    BPDCNguy Registered Users
                                    Currently Being Moderated

                                    Wow. Thank you, Kgirl. That's probably the best compliment on my blog I've ever gotten, and I've gotten a few.

                                     

                                    If it gives people hope and courage, it's all worth it! I've had plenty given to me by others. My blog is "paying it forward."

                            • Re: blastic plasmacytoid dendritic cell neoplasm
                              MyHope Registered Users
                              Currently Being Moderated

                              God has given me the strength to carry on.  For my husband I will do that, and I will help others fighting this disease.  I loved him more than life itself and would of taken a bullet for him.  God has given me another chance at life, but my husband will live in my heart forever.

                          • Re: blastic plasmacytoid dendritic cell neoplasm
                            kgirl Registered Users
                            Currently Being Moderated

                            May God bless you while holding tightly to your hand as you struggle through this darknessNo matter the known pain of loss in our own personal worlds, there still are no adequate words........

                             

                            I have a suggestion for you, and so hope I'm not out of line.  If so, I apologize in advance.  There are some beautiful containers available, and the one that offers me the most peace is one that is lit from within, like soft candlelight, a warm embrace of loving memories.  When you're ready.

                             

                            Blessings of support and prayers that this cloak of pain and darkness will begin to fall gently away. 

                             

                            Kgirl

                            • Re: blastic plasmacytoid dendritic cell neoplasm
                              MyHope Registered Users
                              Currently Being Moderated

                              Thank you.  What keeps me going is not going to that dark place.  My memories get me up everyday and make me put one foot in front of the other.  To lose someone so young, 54, is mind-boggling.  My candle is lit within and I refuse to let it go out.

                              • Re: blastic plasmacytoid dendritic cell neoplasm
                                FRAN641 Registered Users
                                Currently Being Moderated

                                Hope, I am so sorry to hear of your husbands passing.   Your faith and strength is remarkable and such a testimony to those of us going through treatments.   Thanks you for sharing your story and your heart with us.  I will keep you in my prayers daily.

                                 

                                Blessings, Fran

                                • Re: blastic plasmacytoid dendritic cell neoplasm
                                  MyHope Registered Users
                                  Currently Being Moderated

                                  Thank you Fran.  I have now done my estate planning and have left a very large portion of my estate to the Leukemia & Lymphoma Society.  I shall give back what I have lost.   God willing, I can save someone's life.

                                   

                                  God Bless You, Sharon

          • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
            MyHope Registered Users
            Currently Being Moderated

            Do you know of anyone that was diagnosed with BPDCN and had it spread to their brain?

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    vran37 Registered Users
    Currently Being Moderated

    Hi Vicki,

     

    Thank  you for sharing your husband’s story and to bring to light a condition  that many people may have never heard about. Due to the rarity of the  conditon, the research on this condition is pretty limited, but I was  able to find a study that was done by the Penn State Hershey Cancer  Institute with promising results. They found that there might be a  potential therapeutic option for this condition by being able to  specifically target a specific tumor-associated antigen that is  expressed in NK Large Granular Lymphocytic (LGL) Leukemia. I posted the  link to the study and I hope that it could be a good resource for you  and your husband.

     

    https://www.medify.com/insights/article/20671121?utm_source=llsorg&utm_medium=forums&utm_campaign=intlgst-v1

  • update
    oldtree Registered Users
    Currently Being Moderated

    17 months post treatment and I'm still here and still recovering! 8 rounds of Hyper CVAD and a TBI followed by anautologous transplant. Below is the accumulated wisdom on our rare disease

     

    A fellow sufferer's blog:

    http://yippee-leukemia.blogspot.com/2011/07/july-7-getting-you-up-to-date.html

     

    and his accumulated info webpage:

    http://www.christian-history.org/blastic-plasmacytoid-dendritic-cell-neoplasm.html

     

    another webpage from Lymphoma.net:

    http://www.lymphomainfo.net/questions/general-lymphoma-questions/blastic-plasmacytoid-dendritic-cell-neoplasm-formally-nk-cell#comment-2915

     

    a link to PubMed for medical papers:

    http://www.ncbi.nlm.nih.gov/pubmed/

     

    a search there for "blastic plasmacytoid dendritic cell neoplasm":

    http://www.ncbi.nlm.nih.gov/pubmed?term=blastic%20plasmacytoid%20dendritic%20cell%20neoplasm

     

    and a search there for "plasmacytoid dendritic cell neoplasm":

    http://www.ncbi.nlm.nih.gov/pubmed?term=plasmacytoid%20dendritic%20cell%20neoplasm

     

    Irish Lymphoma Guidelines on Diagnosis and Treatment of Malignant Lymphomas pdf:

    http://www.haematologyireland.org/clinical/default.htm

     

    Online book: TUMORS OF HEMATOPOIETIC AND LYMPHOID TISSUES:

    http://www.ncbi.nlm.nih.gov/books/NBK9562/

     

    Online Book: Cancer rehabilitation principles and practice By Michael D. Stubblefield:

    http://books.google.com/books?id=_JaPlNYgXkEC&printsec=frontcover&dq=Cancer+rehabilitation+principles+and+practice+By+Michael+D.+Stubblefield&hl=en&ei=cMmNTvy2FM7B8QOfrKQD&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDIQ6AEwAA#v=onepage&q=Cancer%20rehabilitation%20principles%20and%20practice%20By%20Michael%20D.%20Stubblefield&f=false

    • Re: update
      MyHope Registered Users
      Currently Being Moderated

      Dear Oldtree:

       

      I'm happy to read that you are 17 months post treatment, still recovering, and with us. 

      This will be my first holiday without my husband whom I lost at the end of August.  I pray for you, and wish you all the best that life can offer.

       

      For everyone out there, God Bless you, and I pray you have a healthy, safe and loving holiday season with your families.

       

      All my love,

       

      Sharon

      • Re: update
        CBCACJ Registered Users
        Currently Being Moderated

        Hello All,

         

        The day I prayed would never come happened today. My 39 year old husband's BPDCN has relapsed 32 months after his BMT. His BMT was in March of 2009 and has lived such a full normal life since then. We were actually shocked to get the news today b/c his biopsy at the end of Sept was clear and it was just a routine CBC last week that alerted us. His neutrophils are currently only about 500.  They did a biopsy this past Tuesday and a CT scan and his doc called us tonight with the news. Thankfully, the flow cytometry only detected about 2.5% of abnormal cells which explains why he is asymptomatic.  We meet more with the docs in the next few days but the preliminary plan is to do another round of chemo(hyperCVAD this time versus AML regimen last time)  followed by donor lymphocyte infusion(from his sister) or just another full transplant (his first transplant was reduced conditioning non-myleoblative haplo tranplant b/c he had no matches on the registry). I should mention he never had skin symptoms and it was only present in his bone marrow.

         

        So...my questions.  My husband was/is treated at Johns Hopkins and they have been wonderful to him. However, they admittedly have little experience treating this specific disease and are very supportive of us getting second opinions. So, if anyone has a doctor that would be willing or interested in at least giving their opinion on next steps, we would greatly appreciate it.  In many ways, the care a transplant patient receives after a relapse is basically the same regardless of the type of cancer they started with, but I am still curious to know what other docs/hospitals think. I am just filled with questions about where this evil cancer hid for 32 months and how does it re-appear after all this time? We are shocked and devastated but know that God is in control and my husband life's is His Hands. We welcome your prayers and are sending all of our prayers your way!

         

        To Sharon - we will be praying for you as you enter this very difficult season. Just remember to breath and take 1 step at a time. Do not worry about tomorrow or the next day or the day after that. Just worry about getting through the next minute. You can do that. And before you know, you will have made it through another day. You are NOT alone. I hope you had found a good grief support group.

         

        This is unchartered territory we are heading into and in many ways, I hate to even post this b/c I don't want people who are earlier in their transplant recovery to loose hope. It may be because he only had a "mini" transplant that his happened. We shall see. Just remember that each case is different and never give up believing you are healed.

         

        Never lose hope and if anyone has thoughts or suggestions, I welcome them!

         

        Becky

        • Re: update
          BPDCNguy Registered Users
          Currently Being Moderated

          Hi Becky,

           

          I am so sorry to hear about the relapse, but I am glad that the doctors are still holding out hope. Your husband is young. That allows them to try again.

           

          My doctors at Vanderbilt Medical Center have studied BPDCN well enough to overturn a pathology lab's firm diagnosis of BPDCN in my case. I know they have treated at least one case besides myself, which as I just said turned out to be not BPDCN, but an acute undifferentiated leukemia. The doctors are Dr. Greer and Dr. Strickland. Vanderbilt is a research hospital, and I'm sure they can be consulted.

           

          I am writing to a man in Ireland who is 18 months out of an incredibly intensive chemotherapy and an autologous transplant because they could not find a donor for him. I know that his doctors have consulted with doctors in South Africa treating another case of BPDCN. I don't feel free to post his email address here without his permission, but if you'll email me at paul@christian-history.org, I will email his email address to you. He arranged contact with his doctors for the hospital in South Africa, so I'm certain he'll do so for you as well.

           

          The more heads the better, I figure.

           

          I was headed to a transplant before they found blasts in my spinal fluid. Despite the fact that I was not finally diagnosed with BPDCN, I did have the skin lesions, and the doctors consider my leukemia similar to BPDCN. It's very good at getting out of the blood stream. After they found the blasts in my spinal fluid, I am receiving a series of spinal taps in which they're giving me methotextrate. That's working. They gave me one dose of cytarabine in the spinal column, but that resulted in horrible cramps and nerve pain, so they're avoiding that since the methotextrate eliminated the blasts anyway.

           

          I only mention that because you asked about where those cells hide out for relapse. There are several places apparently, the spinal fluid being one of them.

           

          I hope some of the info above is useful to your doctors. Please do email me, I'll send my friend's email address right away.

           

          If you're interested, I'm blogging about my whole process at http://yippee-leukemia.blogspot.com

           

          Paul Pavao

          • Re: update
            oldtree Registered Users
            Currently Being Moderated

            This is the main number of the hospital the professor works at:

            Prof Mike O'Dwyer at University Hospital Galway, Newcastle Road, Galway, Ireland.

            main line Telephone: 00 353 91 524222

            http://www.guh.hse.ie/

             

            He also has rooms at the Galway Clinic O'Dwyer, Prof. Michael Haematology Secretary

            Ruth McSweeney Tel 00 353 91 720115

            http://www.galwayclinic.com/consultant-directory

             

            Michael O'Dwyer or Veronica McInerney, Clinical Nurse Manager at the Clinical Research Facility,

            NUI Galway, tel: 00 353 91 495964

                

            Prof O’Dwyer was involved in this publication: Irish Lymphoma Guidelines on Diagnosis and Treatment of
            Malignant Lymphomas pdf:

                

            http://www.haematologyireland.org/clinical/default.htm

             

            Also consulted about my treatment and oversaw irriadation and transplant was Dr. Elisabeth Vandenberghe  Haematology St James hospital in Dublin vandenberghesec@stjames.ie Tel: 00 353 1 410 3546

             

            http://www.stjames.ie/Departments/ConsultantsA-Z/

             

            Who also consulted her European colleagues as I was the first case in Ireland.

            • Re: update
              CBCACJ Registered Users
              Currently Being Moderated

              Thank you both for getting back to me! We have been making phone calls and talking to different docs and all seem to agree so far that Hopkins is the best place for him to be (doing the most haplo transplants) and doing chemo followed by DLI is our best option right now. Apparently, the risk of acute GVH is pretty high when you do DLI after chemo (versus skipping the chemo portion) but it also has a high GVL affect.  Until they have make the final decision on Tues, we have a few days at home with enjoy with my husband because he has to remain as isolated as possible with his low neutrophil count. Looks like he will checking in on Wednesday and spending Thanksgiving getting his first day of chemo(ugh), although there is a slight chance we could delay until Friday. It is amazing how relative things become when you are in the trenches. Skipping Thanksgiving 4 years ago would have seemed like the end of the world, now all we care about his survival and getting him home asap.

               

              Blessings to all of you! Paul, praying they get it all so you can get to transplant and get rid of this once and for you all! (love your blog, by the way). Scary how it hides in the spinal fluid but what a blessing to be in the hands of docs that can find that sort of thing!

               

              Becky

              • Re: update
                BPDCNguy Registered Users
                Currently Being Moderated

                We'll be praying for you, Becky.

                 

                I had to look up DLI, which is Donor Leukocyte Infusion, where leukocytes are obtained and infused from the original donor. I'd never heard of that till you mentioned it. Can I ask your husband's first name, for prayer's sake?

                 

                Paul

                • Re: update
                  CBCACJ Registered Users
                  Currently Being Moderated

                  HI Paul - We would love your prayers. His name is Charles, but most people call him Cam. We get the final plan tomorrow but it is looking like hyperCVAD chemotherapy will start later this week and then DLI.

                   

                  By the way,I have had several of our friends mention your blog! They have come upon it by googling BPDC and my friend today said she read the whole thing. I just want you to know the amazing impact you are having on so many people out there for the kingdom of Christ! We admire you and thank you for sharing your journey. You have taken a terrible situation turned it to glory of God which is what he calls to do and you are doing it so powerfully! Thank you for inspiring us.  I hope you and my husband can talk at some point. We are praying for you too!

                  • Re: update
                    kgirl Registered Users
                    Currently Being Moderated

                    Becky....I am so glad you and Cam have found Paul's blog.  Although diagnosed with NFL, I have not (and pray in my way every day) had the struggles so many have.  I personally, believe Paul's message of hope, pain, love, honesty, family and belief is a calling, a powerful and inspirational true messaging.  (Sorry Paul, never mean to embarrass).  Not to mention so very informative.

                     

                    Many prayers of support to you both....... it's a wonder to me at times how everything and nothing is a coincidence.

                     

                    Kgirl

                     


                     

                     

                     


                  • Re: update
                    BPDCNguy Registered Users
                    Currently Being Moderated

                    Wow, Becky. Thanks. That's very encouraging.

            • Re: update
              eithne01 Registered Users
              Currently Being Moderated

              Hi there, I have only just seen this post, but had to say that Professor o Dwyer is my consultahnt at Galway University Hospital

              and is one of the most amazing, kindest and caring people I have ever met.

              • Re: update
                oldtree Registered Users
                Currently Being Moderated

                You are in very good and deeply thoughtful hands. No stone will be unturned.

                • Re: update
                  eithne01 Registered Users
                  Currently Being Moderated

                  Hi again, may I ask whereabouts you are? I am so delighted to hear some-one else speak highly

                  of Professor O Dwyer.He actually diplomatically managed to explain to my overprotective siblings

                  that in this particular instance he may just be a little more knowledegable than their fair selves.  (I laughed so much that day)

                  Hope you and yours are keeping well.

                  Take care

                  • Re: update
                    oldtree Registered Users
                    Currently Being Moderated

                    Lovely Mayo. Recovery is still ongoing and slow, good days bad days, but days here nonetheless. Where are you?

                    • Re: update
                      eithne01 Registered Users
                      Currently Being Moderated

                      I am so glad you are doing well.  I am from Roscommon, but right beside Sligo.  Go to college there.

                      I appreciate we are suffering different types of Lukeamia/Lymphoma, but it so good to hear from some-one else in Ireland.

                      I have tried different websites to no avail and I love this site the most.  There is so much sadness all around but there is laughter and hope here as well.

                      Take care

                      Eithne.

        • Re: update
          CBCACJ Registered Users
          Currently Being Moderated

          Hey All,

           

          I wanted to give an update on this discussion board in case people are still reading or looking for info on BPDCN.  We just found out on Friday that the DLI (donor lymphoctye infusion) on Dec. 9th by my husband's donor is showing initial success as he just had a clear biopsy with no evidence of BPDCN cells. We are rejoicing! We still need the results from the blood donor chimerism test (he was 95% donor/5% patient at the time of relapse) to confirm he is 100% donor again. In the meantime, he feels great. I hope his case can raise awareness to the possibility of DLI if a transplant is not successful long-term. In our case, it was caught early through bloodwork.

          Keep up the fight!

          Blessings!

    • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
      CBCACJ Registered Users
      Currently Being Moderated

      Oldtree - thank you for all of these great references! 

       

      Unfortunately, we are back in the battle again. We just found out my husband relapsed again, 8 months after chemo and DLI. About 2% in his marrow and in several lymph nodes and his spleen. Still waiting for donor chimerism. His counts have been steadily dropping though as a result and right now his ANC is less than 300  So, Hopkins wants to hyperCVAD followed by another round of DLI (probably a bigger dose this time).  He had ara-C instead of hCVAD this past round so feel its time to finally try it. We felt strongly that is was time to pursue a 2nd opinion this time so we head to MD Anderson tomorrow for a 2 day visit. We are meeting with a doctor that has actually researched and presented on this disease. He has yet to have his spinal fluid tested so I think that needs to be done. I fear the cells are hiding in there.

       

      We have also been in contact with the doctor mentioned in the first ASH article referenced above. He is based in Temple, TX at Scott&White Hospital. He has not tested his drug on a BPDCN patient yet but we are seriously considering it before another round of DLI or a 2nd transplant. We will wait to hear what MD Anderson says and then make a decison.  It is worth looking into for anyone diagnosed who cannot get a transplant or is running out of options/time. I will keep everyone posted or just reply to this post if you want more information.

       

      God Bless!

      • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
        oldtree Registered Users
        Currently Being Moderated

        hello there, just to follow up on what I found out about the Targeted Drug SL-401 from stemline.

        I understood that they would be prepared to move forward on compassionate grounds only and that you would have to be in the USA.

         

        My symptoms were swolen lymph nodes an that was very painful.

         

        Spinal fluid checks are very necessary, but nonetheless a lumbar puncture (chemo introduced to the spine allowing chemo to get into the brain) would be necessary as this entity may be hiding out in the head above the protective mesh in the neck which can prevents chemos getting to the brain.

      • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
        oldtree Registered Users
        Currently Being Moderated

        Hello CBCACJ,

         

        Did you progress to SL401? or try somthing else?

        • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
          CBCACJ Registered Users
          Currently Being Moderated

          Sorry I am just responding to this! I wanted to report the very good news that yes, the SL401 targeted therapy at Scott&White in Temple, TX (directed by Dr. Arthur Frankel) put my husband back into complete remission! He did the treatment in mid August and today he is getting a 2nd round of Donor Lymphocyte Infusion from his sister to help boost his immune system as it reconstitutes. The targeted therapy was a 5 day in-patient treatment at Scott&White (MDAnderson is no longer offering the treatment) and the main side effects were fever and chills.  He WBC was less than 200 when he began and withing 48 hours, it had jumped to over 1000 and his spleen was significantly less swollen.  He was the first BPDCN patient to receive the drug and the second patient started treatment today. Dr. Frankel is more than happy to talk to other patients and I am happy to answer any questions.  Just respond to this or email me at rebecca.wagner2@verizon.net.  You also visit www.caringbridge.org/visit/camwagner

          • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
            oldtree Registered Users
            Currently Being Moderated

            That is just wonderful news, in fact the best news I've had all year

            • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
              p32chevy Registered Users
              Currently Being Moderated

              My husband is the second patient treated for BPDCN by Dr. frankel at Scott and White Hospital in Temple, Texas.  His response to the drug was also successful.  His recent BMBx came back clean. He also had skin lesions and they disappeared.  My husband is 72 and still tolerated the treatment well. Please feel free to contact us also if we can answer any questions.  .  We can be reached at eorednick@gmail.com. It was on this blog that we heard about Dr. Frankel from CBCACJ and we are so very grateful.

               

              Message was edited by: Michelle Rajotte- Please do not post other's email addresses

              • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
                oldtree Registered Users
                Currently Being Moderated

                that is just more wonderful news, I'm delighted for you and for us too.

                Has Dr Frankel found any more patients? is this still a phase I clinical trial?

                would you be prepared to detail the treatment here on this website?

                • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
                  p32chevy Registered Users
                  Currently Being Moderated

                  Have a Blessed and Happy Thanksgiving!

                   

                  We have much to be thankful for....this website where we found information and encouragement, access to amazing doctors and hospitals for treatment, and for doctor's like Dr. Art Frankel and others for constantly researching and developing new drugs for treatment.  You asked if I could detail Dr. Frankel's treatment.  I'm not sure what you want to know. CBCACJ, whose husband was Dr. Frankel's first patient, shared the following article which tells about his treatment.  http://www.stemline.com/newsArticleDetails.asp?id=47.  After you read it please feel free to contact me with any questions. eorednick@gmail.com.  As stated earlier my husband was the second patient to undergo this treatment.  He received only 3 infusions of the drug based on his age and response. (he is 72 years old and tolerated the treatment well)   His bone marrow and biopsy of the skin lesions are negative for cancer post treatment!!  You asked if Dr. Frankel had found other patients yet.  I had an email from him asking us to send him another patient:)!  He can be contacted at Scott White Hospital in Temple Texas.  He is an amazingly caring man as is his entire staff!   

                   

                  Each day is a blessing.....Enjoy!

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    RMC33 Registered Users
    Currently Being Moderated

    Hello, my dad was just diagnosed today. Needless to say, we're crushed. The outlook we were given was not good. After reading this blog I do have some hope. My dad has been having pains throughout his body for several months. He initially went to the hospital and was admitted back in Feb of this year for severe chest pains.  Long story short, my dad's heart is fine, but after several more hospital visits we finally have an answer, although not the one we'd hoped for. He was only diagnosed after the Dr removed and biopsied one of the numerous tumor like nodules on his body (all over, face, torso, legs, arms). They told him without chemo, he would only have 3-4 months to live. He has agreed to go forward with chemo. A little background for anyone looking for stats for this disease or possible similarities, my dad is a 66 y/o, Caucasian, retired fireman of 31 years, relatively good health, life-long Northern CA resident, limited (if any) overseas travel, smoker (off & on for most of his adult life), social drinker.  I hope to report some positive news next time.

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    jodiruhe Registered Users
    Currently Being Moderated

    Hello. I am so very sorry for your husbands diagnosis. How is he? What has happened with all his treatment?

     

    My dad was diagnosed just about 3 weeks ago with this terrible named leukemia. We live in Ohio and he has been down to James Cancer Hospital at the OSU Medical Center. Is there any positives on this?

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    oldtree Registered Users
    Currently Being Moderated

    More positive news from the ASH conference this year:

    from a company in the UK called adaptimmune getting very positive results using extracted t cells then engineering them followed by a one off injection:

     

    http://www.newscientist.com/article/dn22613-soupedup-immune-cells-force-leukaemia-into-remission.html

     

    http://www.adaptimmune.com/news-events/

     

    More really good news in a very recent published paper  on pubmed:

    Stem cell transplantation can provide durable disease control in Blastic plasmacytoid dendritic cell neoplasm (BPDCN).

     

    http://www.ncbi.nlm.nih.gov/pubmed/23203822

     

    Three-year cumulative incidence of relapse, disease-free survival and overall survival was 32%, 33% and 41%, respectively.

    much much better statistics than previously published material

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    oldtree Registered Users
    Currently Being Moderated

    Just thought I would you know that I have just reached my 3rd anniversary post transplant, woopee, but I still recovering most of the time but its is getting better slowly :-)

    (That would be about 3 years 10 months post diagnosis)

    Hang on in there!

    We'll beat this Blastic plasmacytoid dendritic cell neoplasm (BPDCN) yet!

     

    FAO ROBERT website not allowing me to reply to you at the moment I don't know why but have sent you a message with my email address.

     

     

    Message was edited by: oldtree

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    IAMVictorious Registered Users
    Currently Being Moderated

    Hello, my wife Carol (48 years old) was recently diagnosed this past week with BPDCN but it is a very odd presentation.  It's only in her lymph nodes in her right groin.  No secondary symptoms (no night sweats or sudden weight loss). No skin involvement. No bone marrow involvement.  No where else based on a PET scan last week.  We're very grateful for this but also very confused about the diagnosis of BPDCN.  The oncologist is recommending Hyper CVAD with a bone marrow transplant after the first remission, which based on the diagnosis and the research I've done, much of it through this forum and its links, seems appropriate.  With the odd presentation and her otherwise good health, we're concerned that the diagnosis may not be correct and are looking for a 2nd opinion (in the works with UCSF currently) and researching other possible cancer centers that we should consult.  As everyone here knows, time is of the essence.  We don't want to waste what could be the tremendous good fortune of an early diagnosis but we also don't want to start a very aggressive treatment for something that she does not have.  I've included some information about Carol and the test results below:

     

    She's discovered some swollen lymph nodes in her right groin in March, had a needle biopsy that showed nothing.  In August, one had grown to 4-5cm and they scheduled a biopsy of one of the smaller swollen lymph nodes.  After a couple of weeks, where the biopsy was sent to Stanford Hematopathology Consultants for review, the results came a few days ago.  Blastic plasmacytoid dendritic cell neoplasm (BPDCN).  However, there are comments in the pathology report:  "We are not aware of a previously published case of CD8+ BPDCN and CD4 expression is usually more prominent than in this case, but there is no specific evidence of T-lineage, and the remainder of the findings, while not entirely specific for BPDCN in this differential, do favor that diagnosis."

     

    The only thing that is pointing to this cancer is the lymph node biopsy results and the report doesn't sound definitive to me but I'm not a pathologist or doctor and only started reading about this over the past few days.  Any suggestions on doctors or cancer centers that we should consult before making a decision or questions that we should be asking?

     

    Thank you all for posting to this forum.  It has been a tremendous resource for Carol and me learning about this terrible disease.  May God bless and keep you all in his light.

     

    -Robert

    • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
      oldtree Registered Users
      Currently Being Moderated

      Hiya Robert and Carol,

       

      Sorry for the delay in replying but my new laptop wont let me reply on this forum for some reason. But i can reply from my old pc now.

       

      I am very sorry to hear your news, it is a very hard road that Carol is now on. I too presented with just swolen lymph glands and no cutanious involvement, 10% of patients present like this. The pathology can be very difficult to pin down so it may be more of a bracket name for BPDCN. Nonetheless the treatment may well be the same for all those in the bracket. Dont be shy of getting a second opinion or diagnosis. I had 8 rounds of hypercvad, the first 2 consecutivly with only 2 days between and thereafter 3 weeks between rounds as I just couldn't take it.and a TBI of 7 grey iin one session. Please ask me any questions you have and I will reply promptly, now that i have figured a way to do so. i sent you a message with my email address if you would like to contact me.

       

      Kind regards

      OT

  • Re: Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)
    oldtree Registered Users
    Currently Being Moderated

    The following is from my Histopathology Report in 2009

     

    Clinical Data

     

    Disseminated lymph node enlargement and bone marrow involvement.

     

    Specimen Received

     

    Paraffin block

     

    Microscopic Description

     

    Lymph node showing a diffuse infiltrate of monomorphic cells with irregular, folded nuclei and small nucleoli. These cells are CD2 positive, CD3 negative CD5 negative, CD7 weakly positive, CD4 weakly positive,CD8 negative, TdT positive, CD56 positive, CD33 positive, CD123 positive, CD20 negative and CD 68 negative. MIB-1 shows a proliferication fraction of 50-60%.

     

    Histological Diagnosis

     

    Lymph node; blastic plasmacytoid dendritic cell neoplasm aka bpdcn

     

    I was lacking cutaneous involvement which is unusual for bpdcn. A proliferication fraction of 50-60% was a very poor starting point as I had to have an autologous transplant. I am now approaching 5 years post diagnosis and 4 years post treatment without a relapse.

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