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Rare and Other Cancers

CSN_Hillary's picture
Posts: 7
Joined: Sep 2013

New Pancreatic Cancer Discussion Board

We have created a new Pancreatic Cancer discussion board. We've moved over two discussions to help launch the new board, but due to the quantity, we will keep the remaining discussions on the Rare and Other Cancers board. 


Thank you!

Your CSN Support Team

Posts: 3
Joined: Nov 2018

Plasma cell leukemia

My husband has been diagnosed with this type of cancer. Plasma cell leukemia. Would like to talk to someone who has experienced with this.

Posts: 2
Joined: Oct 2018


Posts: 32
Joined: Mar 2017

Memorial Sloan Kettering offering free genomic testing for rare cancers

From our experience (stage 4 gallbladder cancer, but it applies to others also), it is so important to ask to get your tumor tissue genomically tested as soon as possible, to see if you are a candidate for immunotherapy or targeted therapy.

Please ask for them to test for immunotherapy indicators like PD-1/PD-L1 as well (including microsatellite instability, tumor mutation burden, DNA mismatch repair, etc.) 

In case this helps someone who is concerned about costs of genomic testing with Foundation One: 

Posts: 2
Joined: Aug 2018

Financial Assistance

My wife was diagnosed with Olfactory neuroblastoma back in March. It is located in her nasal cavity, brain, two lymph nodes in her neck, and behind her throat. She had extreme chemo treatments every 21 days with great results. They started to do the surgery but backed off after cancer cells were detected in an area thay couldn't reach. They are now sending her through 33 treatments of radiation (5 1/2 weeks) accompanied with chemo once a week.

Teresa Watts
Posts: 1
Joined: Jul 2018

Vaginal Cancer


Dear Sir/Madam:


I have vaginal cancer for which I have had surgery and radiation treatment.  Since this appears to be an unusual form of cancer, there is very little information that I can find on the internet.  Oncologists and gynolcologists have not been very helpful in this regard.  I am 69 years old and have gone beyond the anticipated date of  my predicted death.


Would you be good enough to direct me to a website or even a chat room so that I can get more information.


Posts: 2
Joined: Jun 2018

Peritoneal Mesothelioma

I’ve just been diagnosed, and I know almost nothnight.  Does anyone out there have the same kind of mesothelioma?

Posts: 2
Joined: Jun 2018

Peritoneal Mesothelioma

I’ve just been diagnosed, and I know almost nothnight.  Does anyone out there have the same kind of mesothelioma?

Posts: 1
Joined: Jun 2018

Pancreatic cancer

Why isn't there a listing for pancreatic cancer? It's one of the most deadly.  How do I get to those discussions?


Thank you in advance

Posts: 1
Joined: Jun 2018

Early diagnosis of Peritoneal mesothelioma

I have a dear friend (66 year old female) recently diagnosed with Peritoneal mesothelioma. It was discovered incidentally when a urologist was preparing to remove a kidney due to a mass (not biopsied) found on a CT scan. When the camera was inserted into the abdominal cavity numerous flat, white leions were found on her peritoneum. The kidney removal was aborted and a biopsy was taken. The biopsy,after much confusion, was determined to be malignant Peritoneal mesothelioma (low grade, epithelial).


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