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Rare and Other Cancers

Leiomyosarcoma of the Inferior Vena Cava
I have just been diagnosed with Leiomyosarcoma of the Inferior Vena Cava (IVC). The MRI indicated the mass has invaded and occluded the IVC. There is no evidence of metastatic disease. Does anyone have experience with this type of rare cancer?
Cancer of the coccyx and lower spine
My husband was diagnosed with this type of cancer, only they referred to it as colorectal cancer as he indeed had colorectal cancer 5 years ago. However the cancer returned but it was on the back side of his colon and he had a very large tumor sitting on the coccyx and was growing up his lower spine and had imbedded itself…
Islet cell/neuroendocrine cancer
Has anyone heard of new treatment?
UVEAL MELANOMA - Eye Cancer
Diagnosed with uveal melanoma in December. Radiation plaque therapy in January. Now looking t clinical trials. Anyone else with this diagnosis?
Lessons from My Father’s Experience (Pancreatic Cancer)
It's been two years since my father's passing. I packed everything up and had to move across the country to get away from it all. Now that I can finally face what happened without going into a dark place and blaming myself, I'd like to share the lessons and specific experiences my family learned with you all. I sincerely…
Potential Bile Duct Cancer
Hi All. So about 4 weeks ago my father was taken to the hospital for having an elevated heart rate. The ER team struggled to lower and stabilize the heart rate. He is a relatively healthy 68 yr. old despite being an asthmatic and having Crohn's Disease. After they had his heart stabilized, they diagnosed him as having an…
My mother 56 year old detected with gallbladder cancer spread to liver, lymph nodes and lungs
My mother was suffering from abdominal pain for years now but she had never got herself checked. Recently again she had got fever, direhha stomach pain so we treated for that after which she has got jaundice symptoms. Her eyes are yellow since last 15 days and she has on and off pain under her ribs to abdomen. In her CT…
Cancer #5 was just diagnosed. Holding out hope!
Just found this website and discussion boards. Do I g my best to stay positive. Had basal cell at 28 and over 100 since then, all on my face. Had melanoma on my face at 33. Had to force my doctor to take a biopsy since it was a perfectly round, beige mole but it had bled from all the pores one day. Breast cancer was…
Alternative treatments for advanced pancreatic cancer
My Dad has advanced PC. We have been on trials at Johns Hopkins. We just found out that the last one is not working. It is time to look at alternative treatments..does anyone have any reccomendations?
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…
Pancreatic Cancer and Multiple Sclerosis
My wife is dual diagnosed with Multiple Sclerosis (1999) and pacnreatic cancer (2013). She underwent the Whipple procedure late August 2013 and is less than two weeks from starting treatment with GEMZAR then radiation/5FU and finally GEMZAR. There is literally no information available from cancer resources or MS resoures…
Spinal Tumor Treated with Ultrasound?
My best friend has just be diagnosed with a cancerous spinal tumor. I have yet to find out the exact diagnosis, but I DO know that she's being treated with ultrasound and oral chemo. I cannot find ANYTHING online about tumors like this being treated with Ultrasound. I assume that this means things are very good or very bad…
Spinal cord tumors
Hi, I'm new here and I'm not sure if I have found the right discussion board. Let me tell you a little about myself. I am a 53 year old female, married for 35 years, 3 grown children, and up to 5 months ago working at a full-time job. On May 4, 2008 I lost feeling in both of my legs at work. My coworkers thought I was…
Omentum
Hi, 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 .
GIST and Neuroendocrine Carcinoid
Hello! I found out yesterday that I have a GIST (gastro intestinal stromal tumor) attached to my stomach and a neuroendocrine carcinoid on my duodenum, Both are very rare types of cancer and my doctor said it is “very unique” to have both of them. It took awhile to get the final diagnosis (my doctors got a second opinion…
Appendix Stage IV Cancer
ok so I have this and I was supposed to love only 6 months. Now it is 2 years after I had surgery and I have to have the HIPEC again and I would like to find a support group for this. The procedures are new and making history and so now that 1500 surgiries are performed annual on these types of cancer a support group would…
Going out of my mind....
Hi all, I need a little assistance, reassurance etc The story so far: 2016: 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,…
subtotal gastrectomies
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…
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…
Dfsp
I would like to connect with anyone who has been diagnosed with DFSP. I was diagnosed and treated in 11/04. Anyone with any insight into this type of cancer would be helpful. Thank you.
Mesothelioma
Hi everyone! I suffer pleural mesothelioma arising from past asbestos exposure. Is there anyone out there?
HepatoSplenic Lymphoma
Hello 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…
omentum cancer
My husband has been diagnosed with colorectal cancer and cancer of the omentum. Does any one else out there have this type of cancer? Very unusual cancer when in the omentum and there is no cure for it. Chemotherapy and as long as that works all will be fine. Would really like to hear from people who have this type of…
cancer in the omentum
what to expect, meeting with oncologist on wednesday
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.
Very Hot lymph node in abdomen ( retroperitoneal area )
Have now had three CT/PET scans ( 5/16,9/16, 2/17 ) showing an intensely fdg avid SMS axis lymph node 0.06 x 1.1 cm in size. First scan had SUV of 31.8 and second was 52.7 and third 33.Size has remained same and no other areas of active fog uptake. Too deep in abdomen area for biopsy and high risk surgery to remove. CT/Pet…
Primary Peritoneal Mesothelioma
just received this result from the Kaiser oncologist regarding the PET Scan Results via email which does not explain anything in plain english such as the stage of the cancer. The oncologist said the only 2 options for treatment are either a clinical trial recruiting advanced peritioneal malignant mesothelioma or…
Gist
Good day all, I was diagnosed with a GIST tumor in march of this year and have been on Gleevic for around 83 days to shrink the tumor because of placement and size, it was borderline removable. but on the sept.12. this month we did surgery and the suergeon could not find the tumor anywhere. last scan was on july 18th, and…
Neuroblastoma
Is anyone familiar with neuroblastoma in young adults?

Rare and Other Cancers

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