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Rare and Other Cancers

Posts: 4
Joined: Jun 2016

HepatoSplenic Lymphoma


I am new to this site.  Just wondering if anyone else has this particular or similar kind of monkey on their back. 

Not trying to be funny but I suppose humour is good...or so I have been told.  Anyway my liver is spiking along with the rest of my bloodwork except my hemoglobins, yay.   

I do not even know how to post tis but I will give it a whirl



Posts: 1
Joined: May 2016

omentum cancer

Hi everyone, before I ask anything I would just like to say thankyou in advance and also wish everyone on the site the best with what they are going through or have survived.

I am looking to speak to anyone male who has had omentum cancer as a metastasis from the bowel or other area as i have been led to believe its very different to people with primary omentum cancer. I know alot of women get it from ovarian but cannot find much information on men who have it or men speaking about having had it.

any information would be very much appreciated.

fighting zebra
Posts: 1
Joined: May 2016

low platelets

Hi everyone. . .I've been on Temador (ONLY) now for 10 monthsfor pancreatic neuro endocrine  and after experiencing the drop in platlet syndrome I did some research and found the power of Papaya Leaf Extract. I buy the tea bags from Amazon and 1 cup a day has lept my platelets in check!!!.  When I travel I substitute payap Leaf Extract Cappsules also from Amazon unless I'm in Hawaii then I just dried the leaves and brewed my own tea.  Anyhow thought I'd share my positive results.  DO your own reserach on Papaya Leaf extract for low platelets.

Posts: 1
Joined: May 2016

Neuroendricine Cancer

I was diagnosed late Feb this year and have had my 2 treatment by

 injection. Was looking for further formation and discussions with other Net sufferers.

Posts: 2
Joined: May 2016

New here and wondering if anyone else had choriocarcinoma??

I was diagnosed last February with ovarian choriocarcinoma after a miscarriage. Very rare cancer. It's been one year since my treatment and I feel pretty good physically. I haven't really talked much about what I went thru last year. People just don't understand. They try..but they just can't. So was just hoping someone out here could relate to me just a little bit:). 

Gulzar's picture
Posts: 10
Joined: Apr 2016

Zollinger Ellison Syndrome

Anyone has ZES, MEN-1 or Gastrinoma.

Gulzar's picture
Posts: 10
Joined: Apr 2016


I have diagnosed with Gastrinoma last january in midgut and metastasis to liver on Octreotide LAR injection treatment, I was on PPI (Pantoprazole) for long time and I believe PPI caused the cancer, I would like to hear from other patients if they have same symptom and causes of the cancer. 

Posts: 4
Joined: Apr 2016

Spindle Cell Sarcoma of the Kidney

At the end of 2015 my dad who is only 54 years old was diagnosed with a rare form of kidney cancer called Spindle Cell Sarcoma. In October of 2015 he went for a check up and was told there was a mass on his kidney over the next few months he was going back and forth to the hospital for different checks. In February 2016 he finally had his kidney removed and the mass which turned out to be bigger then his kidney, after the surgery he felt normal again but we waited nervously to find out the results on the tumor turns out it was cancerous...

Lizy8200's picture
Posts: 1
Joined: Apr 2016

Stage 4 GBC


I was recently diagnosed with Stage 4 Gallbladder Cancer. My oncologist didn't really give me a very high survivor rate, however I am only 33 and I have yet to see anyone else my age with S4 GBC. Anyone out there have any experience with my situation? I am staying positive and I know that I can beat this, but it would be wonderful to hear from someone who has already beaten this. 




Orange County, CA

33yo Woman, Stage 4 Gallbladder Cancer

Posts: 6
Joined: Feb 2016

Polymorphous adenocarcinoma

I am aware that this is a cancer "survivor" forum. And that I will certainly be. There is not a lot of information available for the tumor I was told I had. 

Dreading the aftermath of my surgery, I applaud every single person on here for their strength, encouragement, and confidence. I hope to be able to do the same. 


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