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Rare and Other Cancers

CSN_Anne's picture
Posts: 46
Joined: Sep 2016

Private Message Spam

Hello everyone,

Thank you to all of you who have alerted us to the PM spamming from earlier today. I apologize for the inconvenience. While we do have securities in place, we are not always able to catch all spam, and we are trying to figure out how this one got around our system. If you received a message from jegac1 please do respond to it or share any of your information.

Jegac1 has now been blocked from the CSN site.

Again, I am sorry for the inconvenience. Please continue to report any email spammers or questionable behavior you see.

Best regards,

Posts: 1
Joined: Feb 2017

Adult Gliomatosis Cerebri.

My father was just diagnosed with Gliomatosis Cerebriand, and because of the rarity of this cancer there isn't much information avaiable.  Does anyone have any information that could be helpful?   Any sucessful therapies or alternative therapies such as the use of canabis oils?


Thank You

Posts: 1
Joined: Jan 2017



My husband did a cat scan and they saw thickening of the omentum? He is schedule to do a biopsy next week . is any one familiar with this? What is the survival rate for omentum cancer? He already told me he will refused to do check. Please help . 

Posts: 2
Joined: Jan 2017

subtotal gastrectomies

Posts: 4
Joined: Dec 2016

Going out of my mind....

Hi all, 

I need a little assistance, reassurance etc

The story so far:
April -
Sweating, neck stiffness & throbbing, increasing lower back pain.
May -
Began feeling unwell - Dizziness and Nausea.
June -
Loss of balance, High BP, Persistent Migraines, loss of appetite, palpitations.
July -
MRI & CT of Brain - NED,
Referral to Neurologist - NED.
September -

Posts: 1
Joined: Jan 2017

Duedonal cancer, stage 4

Stage four duedonal cancer :

I have stage 4 duedonal cancer,  I was diagnosed in may of 2016. I  am now 61 years old.  A woman.  It's  inoperable,  it metastasized, into my  stomach cavity,  not my  stomach  but between. 

Posts: 5
Joined: Dec 2016

Cancer of the unknown primary (CUP) / omentum

Trying to find anyone that has been diagnosed with CUP?  Any alternative treatments.  My brother was just diagnosed with what is called cancer of the unknown primary.  Basically means the doctors do not know where the cancer originated, however they know it is in his omentum.  Doctors are stating his cancer is treatable, but not curable.  However, treating with chemo is not a long term solution.  I'm curious what type of treatment(s) anyone else has gone through?  My brother just started chemo(folfox) two weeks ago.  Thanks  

Posts: 1
Joined: Nov 2016

Olfactory neuroblastnoma

My son is 52. He was diagnosed with olfactory neuroblatnoma in May 2016 And had an operation to remove the tumor through the nasal cavity. We knew it was serious but when he came home afterward he was really well and confident about the future. He started radio therapy 3 weeks later and even after 4 of the 6 weeks of the daily treatment he was fine. From that time he has just gone downhill. He is not ill but so very low and so tired he can hardly do more than work a few hours, eat with a lot of encouragement, and sleep. 

Posts: 1
Joined: Nov 2016

My friends mother is confirmed with Pancreatic cancer

Hello Everyone hope everyone is doing good and happy with your life. Here the case is my friends mother is confirmed with pancreatic cancer and its in advanced stage. Please let me know if there is any cure/treatment is available it would be of great help in saving a mother to a family.

Thank you.

Posts: 1
Joined: Oct 2016

Whipple surgery

My husband (64) has had symptoms of pancreatic cancer for several months. After having 2 endoscopies with negative biopsy results, his dr has him scheduled for Whipple surgery on Tuesday. He is an experienced surgeon using the DaVinci robotic, and tells us that even though it doesn't look like pancreatic cancer now....it will eventually turn into cancer.  I have read so much about the post surgery experiences, and I'm now scared to death for him.   Can anyone offer some words of advise or encouragement?  Thanks in advance.


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