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Blastic Plasmacytoid Dendritic Cell Neoplasm Remission

I want recent and future BPDCN patients to know there is real hope with a new treatment of SL-401 through Clinical Trials. Hopefully this treatment will be approved soon. Here is my story of diagnosis, treatment and remission.


ejourneys's picture

On Circumstances

April 13 will mark three months that I've been on Xarelto. My GP tells me that I can stop taking the blood thinner at that time. Then, some months after that, we can do another follow-up ultrasound. It takes time for the clot to clear completely, she said.

I still feel some very minor discomfort around my jugular vein when I yawn. It feels like a mild version of the discomfort I had felt after my port had first been inserted. My scar from the port removal continues to heal and my surgical skin remains in place. I still have a bit of venous swelling in my right arm.

My Journey

March 25, 2016 - today is my second week of chemo and I still don't fully understand the bottom line of my diagnosis.  Still working on getting the pathology reports so I can hopefully understand the diagnosis = treatment.    I still have to cut my hair because the nurse said my hair will begin to fall out in another week.

I have 6 cycles of chemo.  Each cycle = 3 treatments for a total of 18 weekly treatments, then fall back to 1 time every 3 weeks.  Full year of chemo treatments.  Hair will begin to grow back after the 18 weeks.

supercw's picture

First Diagnosed: A Plan of Attack

My scans have revealed all the cancer is completely resolved as of September 2015. I was diagnosed in June of 2015. That was 4 months. The most difficult part of the entire process was definitely the initial diagnosis. Being told you have cancer especially when it doesn't run in your family can be very staggering. To say the least.

Stage 1A endometrial Papillary Serrous Cancer

My 84 year old mother was diagnosed with endometrial cancer in November and had a total hysterectomy end of December.  She is scheduled to have 3 treatments of chemo then radiation and 3 more treatments of chemo.  So far, she's had her first chemo treatment with no side effects.  I'm assuming that's because she had a low dose (1 hour) and just one medication carboplatin. This week her oncologist recommended to increase her dose to 3 hours with carboplatin and Taxol. I'd like to share your experiences and what to expect during this process.

ejourneys's picture


I had my follow-up ultrasound on March 18 for my port-related blood clot. The upshot: My subclavian vein is still partially blocked, but it is well on its way to being fully open again.

still in shock

Just found out Wed that the love in my life has Lung Cancer.

Im terrified!!!!!



Synovial sarcoma

I was nineteen when I found out I had synovial sarcoma. I had a mass on the side of my left foot. My doctor said that it was most likley a cyst. When the surgery came he said that it was cancerous. I spent three long months waiting to figure out what is was. I was so upset that my grades slipped and I flunked out of college. When it was determined that it was synovial sarcoma I had to have two more surgeries before I was declared to be free of cancer. 

Dad Fighting Stage4 lung cancer

2 weeks ago, after fighting a cough and having some trouble breathing, my dad went into the ER. After a CT scan he was told he had a mass in his lung. He then had a biopsy which came back positive for adenocarcinoma. We then found out it was stage 4 following a PET scan.  No treatment has been started yet as they are waiting for more results from the CT scan to see what kind of chemo to give him. In the meantime he is getting weaker and weaker, he cannot even stand anymore, even with oxygen. I am afraid he isn't going to make it even a few more days.

best treatmenet on Esophagus cancer

My mohter has undergone with surgery for tumor in throat(Esophagus Cancer node). During operation Liver Cirrhosis is also observed . After operation she has now problem till Feb.16 end but now she is having pain in Neck & chest. on 12.3.16 we have taken advice by Mr.Kelkar (Dinanath Hospital,Pune) & he has done CT scan & as per CT report now again Cancer Nodes are observed in body. As per doctor now they can only give Pain killer medicine but with these medicine she is still have pains which is gradually increasing & she is having pain during eating food. Pl.


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