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Rare and Other Cancers

whipple procedure
I would like to have e-mail or phone contact with someone that had cancer of the pancreas and has had whipple surgery. It would be so helpful to compare notes, problems and successes. barb616 love.doxies@yahoo.com
Metastatic Pancreatic Cancer
Hello - My partner was just diagnosed with metastatic pancreatic cancer with metatases to the liver and associate peritoneal carcinomatosis. She's almost 63 and this has been one hell of a blow to the two of us. She saw the oncologist yesterday; surgery is not an option. They will be doing a biopsy, hopefully next week and…
Has anyone else experienced heart attacks due to 5FU chemo?
I have appendiceal cancer, signet cell carcinoid tumors, Stage 4, BUT it has metastasized to my ovaries and rectum, NOT to my liver, lymph nodes, bones, lungs, etc. Doctor tried putting me on 5FU in January 2011 but I had 3 heart attacks in 4 weeks from it. Switched me to Irinotecan from February to August. It didn't do…
Pleomorphic Liposarcoma
My husband who is now 64 yrs. was first diagnosed with 'pleomorphic liposarcoma' cancer in December 2003. He had it on his upper right back near the arm pit. He first noticed a very small lump on his back in Sept 2003. The VA doctor kept saying it was only a fatty tumor and do not worry about it. Well it kept growing and…
Pleomorphic Liposarcoma
I have just been diagnosed with this disease. Could someone tell me what to expect or anything about it? Thanks in advace teri
Apocrine (sweat gland) cancer
My mom has been diagnosed Stage IV-Apocrine Carcinoma. It is metastatic (brain, kidneys, lungs,spine). She has has 10 brain radiation treatments and 1 course of chemotherapy (Vincristine, Adriamycin, Cytoxin) which has done little. This is a very rare cancer. I would appreciate any suggestions, insight, anything...
Aggressive digital papillary adenocarcinoma
Trying to locate doctors who have seen the most cases for second opinion as soon as possible.
Anyone with Pleural Mesothelioma
My father has recently been diagonosed with Stage IV meso. He will begin chemo on Thursday. I know this is a rare cancer but lookig for anyone that is also going through this horrific experience. Everywhere you look with this diagnosis is grave...I'm looking for something positive
Paraganglinoma (Abdomen)
My friend (age 47) has been diagnosed with Maglinant Paraganglinoma. The doctors don't want to do anything but continue to remove the tumors. She would just like contact with someone esle with this form of cancer. We are trying to get her into the Anderson Center in Texas. She had her first tumor over 20 years ago.
financial support
Does anyone know of any organizations that could help me financially while going through treatments? I am a single mom.
Mesothelioma
Why are they not more comments on this cancer? It is a horrific cancer, yet few write about it. No cancer is good, but mesothelioma is really aggresive, we need more support and comments on this topic. Merlin Olsen just died of mesothelioma last week. Emily
MY RARE CANCER recently diagnosed Sinonasal melanoma stage TIVa
My cancer considered less than .4% of all cancers. Not many statistics on survival but looks pretty bleak even without metastasis. Surgeon says 1 1/2 to 5 years. Surgeon says think can cure in sinus but will come back elsewhere. Will have face radiation after surgery. seems side effects of salivary gland and no taste which…
Primary Peritoneal Cancer /Breast Cancer Survivor
I am looking to communicate with anyone who has been recently been diagnosed with Primary Peritoneal Cancer (PPC). I am a 6 year breast cancer survivor, (2005) but was diagnosed with PPC in November 2009. PPC was determined not to be metastatic breast cancer. After undergoing major abdominal debulking surgery and 6 months…
Peritoneal mesothelioma
Are there other military out there with peritoneal mesothelioma?
Adrenal corticol carcinoma
I read a while back about someone using alternative therapies for management of adrenal cortical carcinoma. Could someone contact me about that? I am extremely interested. Mine cannot be resected, and I have 2 little girls at home that I need to be here for.
Dermatofibrosarcoma protuberans
Hi. I am confused if anyone can help. I had my right lower leg operated on to remover it also had skin Grafs done 13 yrs ago now. I have searched all the site I can on it but none of the photos look anything like mine did. It was the size of a 5 cent price when I first Noticed it but it was an indent it the skin that had…
Pancreatic Cancer?
I am surprised P.C. was relegated to rare and other. I just lost my mom to this monster. It's a viscious cancer. It's very hard to detect it early given there are few warning signs. Most early symptoms appear similar to other treatable health issues so the Dr goes no further with testing. It wasn't until my mother…
Appendix
goblet cell caricinoid looking for anyone with information on this type of cancer of the appendix.
Paraganglioma
My husband had a tumor near his liver and kidney.. they removed it back in june.. they said it was not cancer but my husband satrted feeling so much better. No more night sweats, throwing up, or abdominal pain. 5 weeks post surgery he started getting all the symptoms again. He went back into see the surgeon and they…
Tumor feeds on sugar?
I read from stillsmiliing that this cancer feeds on sugar. I am wondering about this and want more information. My dad had pancreatic cancer in 1998. Then I had been diagnosed with Breast cancer for the first time about 18 months later. I have now just finished (2003-04)with breast cancer treatments for the 2nd time. I am…
Dermatofibrosarcoma protuberans
Hi. I am confused if anyone can help. I had my right lower leg operated on to remover it also had skin Grafs done 13 yrs ago now. I have searched all the site I can on it but none of the photos look anything like mine did. It was the size of a 5 cent price when I first Noticed it but it was an indent it the skin that had…
Dermatofibrosarcoma protuberans
Hi. I am confused if anyone can help. I had my right lower leg operated on to remover it also had skin Grafs done 13 yrs ago now. I have searched all the site I can on it but none of the photos look anything like mine did. It was the size of a 5 cent price when I first Noticed it but it was an indent it the skin that had…
lung cancer
i am new on here and haven a hard time learn how to you the blob to talk with people could someone please try to help me
liposarcoma recovery time
In November 2010 I was diagnosed with a large liposarcoma in my left thigh. I had 5 weeks of radiation and then 5 weeks post radiation I had surgery to remove the large sarcoma. I am 6 weeks post op and am having lots of complications...still have a drain in...lots of swelling and pain...can anyone tell me if you have had…
radiation for pancreatic cancer
Husband has pancreatic locally advanced stage 3, non-resectable (at this point). Considering radiation after we finish Fulfironox for 12 weeks. Has anyone done radiation after Fulfironox? And, if not, what have you done?
pancreatic cancer that has spread to the lungs
My husband has pancreatic cancer that had already spread to his lungs. Lots of different chemo's and treatments. Doctor now wants him to go into a Clinical Trial. Is anyone else going through this? I have questions....
Spindle cell carcinoma
Hi everyone, I am new on this board. Diagnosed in April 2011 with a large tumor in my L3 vertebrae, and tumors in my lung. It took more than a week to get the pathology report at City of Hope after two biopsies, one on my spine and one in my lung. They are calling it spindle cell carcinoma, although they admit whatever I…
myelofibrosis
my dad was diagnosed a year ago with myelofibrosis, now his doctor advised him to have his spleen remove. He is 65 yrs old, I'm afraid that the surgery is too risky for him due to his age. I've read some articles about disadvantage of spleen removal which is mainly the risk of infections. anybody's opinion is much…
Looking for information on Small Cell Neuroendocrine Carcinoma of Esophagus with METs to Liver
Hi, I just joined this group in the hopes of finding out some information that will help me understand what my family is about to endure. On October 10 my 66 yr old mother in law had an endoscopy becuase of a gastro pain...they thought she had reflux. (She has a terrible pain in her chest that she felt starting in the…
pheochromocytoma
Anybody here been diagnosed or even hear of Pheochromocytoma? I have tried other sites for support and info for years, and been shot down. Sometimes I think they don't believe me!! Am a 22 year survivor, at least that was the date of diagnosis. Now a tumor in left kidney apparently unrelated to the pheo, and I only have…

Rare and Other Cancers

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