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Rare and Other Cancers

Symptoms
Can someone please tell me the symptoms of Pancreatic Cancer. I feel like i am going crazy. I watched my grandmother go undiagnosed for over a year or better. CT scan, even a Biopsy. The Biopsy was Neg is late Nov. Then in late Jan her Cancer markers were sky high, she died in April. She had complained of a back ache in…
Carcinoid (Lungnoid)
Is there anyone out there who has had this type of cancer, and had surgery to remove the tumor from the lung. I just want to talk. I'm going thru a depression period and I'm trying to cope as best as I can.
varient hairy cell , pancreas tumor
sept our lives came crashing down, the doctors found a 2 inch neuroendocrine tumor in my husbands pancreas and mass in stomach and enlarge lymph node in his lung, enlarge spleen , and varient hairy cell leukemia / lymphoma , he had a distal pancreatectomy, splenectomy and therapy rituxan and cladribine, no sign of varient…
am i one of a kind?
i am a 67 year old stove up ole cow poke an oil field hand.now i have been told i have a medusa snake growing in my belley,called a expulmery small cell cancer of the stomach. now the queston, has anyone lived for five years aifter diagnosis,or am i goning to be the first?
Cancer
I am post hysterectomy and salipingoophrectomy for 10-15 years. A cat scan monday reveiled that i have now in my adnexa (previously where ovaries were) two very large masses. this is my first time ever writing does anyone know how this could have happened. im am following up with more procedures this week.
splenic angiosarcoma
I have passed 5 years in remission from the above cancer and am anxious to find other survivors. Thus far I haven't found ANYONE who has been diagnosed with and/or survived this rare cancer. If there is someone out there with any ideas to help me find fellow survivors, I would be most grateful. I am also at 3 years in…
terminal follecular lymphoma
i have been given 2 to 3 months of life left, doctors say there is nothing more they can treat me with,i have had 8 chop, with mabthera""rituximab"" + 2 eshsap treatments, thats 5 days 24/7 chemo and now vicomicin 1 treatment weekly,with steroids, it started off with a tumor in upper bowel, that was size of a grapefruit,it…
Alternative Medicine
I have been undergoing acupuncture, homeopathy and Chinese medicine for leiomyosarcoma. My LMS originated in my uterus and spread to my left lung...both tumors were surgically removed...Then they found a small tumor in my right lung (undetermined nature)....I turned to Alternative medicine and the tumor is shrinking, but I…
ganglioneuroblastoma
I have recenlty been diagnosed with this rare cancer. I have been told that it is normally found in children. I am way past the childhood phase of life. If anyone has any expirence with this please pass it on.
cholangiocarcinoma
Hi, I'm new to this board. We just found out last night that my husband has this type of cancer. Any information or words of encouragement would be greatly appreciated. We were expecting some time of liver cancer or pancreatic cancer and were somewhat relieved that it wasn't pancreatic because of its toughness to fight and…
Neuroendocrine cancer
I'm interested in anyone who has consulted with Dr. Oberg in Sweden...need to know chemo meds and progress. We have been to him 1x and want to go back but we need some documented progress to show MD. Thank you, maganda8
vuluar cancer
Looking for other people with stage 2 Vuluar cancer and what to do from here on?
TARCEVA (ERLOTINIB)
MY WIFE YOUS TARCEVA AND AFTER 7 DAYS SHE HAVE RASH ON HER FACE.DID SOMEBODY HAVE EXPERIENCE ABOUT THIS.
Plasmacytoma in orbit of eye
This is a rare condition and I am looking for cancer centers/physicians with experience treating plasmacytoma in orbit of eye.
Neuroendocrine Carcinoma
I had a tumor removed from my liver and it was diagnosed as NEC. They aren't sure if it's the primary but I had tumor markers done recently and all my levels were normal. Have any of you had markers done and levels were normal but more tumors were found? I'm asking because less than 1% of NEC tumors originate in the liver…
Early Esophageal Cancer
I am posting this story for anyone with early stage Esophageal Cancer. (Stage 0-1) Mike, my husband was diagnosed with Stage 1 Esophageal Cancer May of last year. His cancer was most likely caused by Acid Reflux (Barretts Esophagus). He was scheduled for surgery to remove his esophagus in June at the recommendation of his…
Neuroendocrine Carcinoma, Unknown Primary, Lymph Node Mets
My husband has been diagnosed with large cell Neuroendocrine Carcinoma, unknown primary, with a colon resection on May 28, mets to lymph nodes. He has completed 2 cycles of Carboplatin and Etoposide and had a CT scan, results tomorrow, to see how the treatment has gone. I am interested in any information, specialists,…
Adrenal Cancer Information
Folks, I'm an Adrenocortical Carcinoma patient 2 and a half years surgical remission. There are two very active Yahoo groups for this cancer and a useful website with links to those groups. It's my website and it has links to everything that we've gleaned from other patients and caregivers.…
Update-SCC-Penile Cancer
My boyfriend had his surgery at IU Monday.They did not perform Moh's,but he had excisional & the plastic surgeon did not have to graft,instead he pulled skin up from scrotum & base of penis to make a flap over the area.Its like a sideways horseshoe shape scar,about 3 inches! Bad news was from the time I 1st had him looked…
CSN Discussion Boards Changes- Effective May 16, 2007
Dear CSN Members: On May 16, 2007, you will see some changes on the CSN discussion boards. To assist you in connecting with as many members as possible, who may have had similar experiences as yours, we will be reorganizing our discussion boards and merging the "Pancreatic Cancer" discussion board with this board. At the…
CSN Discussion Boards Changes on May 16, 2007
Dear CSN Members: On May 16, 2007, you will see some changes on the CSN discussion boards. To assist you in connecting with as many members as possible, who may have had similar experiences as yours, we will be reorganizing our discussion boards and merging this "Pancreatic Cancer" discussion board with the "Rare and Other…
ELEVATED PANCREATIC ENZYMES AGAIN
Hello everyone. I posted on this website back in June of 2006. My liapse enzymes were in the 700's and amylase in the 500's, CA19.9 went into the 80's. On its own back in SEpt.21, 2006 all enzymes went back to normal with the exception of the CA19.9 which went down to 44. I had an MRCP back in JUly which was normal. An…
The Cure
Now that I have your attention: In this year of electing a president, all cancer survivors need to find the candidate who supports Cancer research-ie; stem cells, which could very well bring the cure to all cancer. The politics of cancer can kill you..of over 10,000 grants from the National Cancer Institute, only 500 even…
Gangliocytic paraganglioma
If there is any information anyone can provide to me I would be very grateful. I have just been diagnosed and a 3cm tumor was removed from my ampulla. I am planning now for a recommended Whipple procedure. Any and all info on this type of tumor or procedure would be so helpful. Thanks, Michelle
Carcinomatous Meningitis (Ovarian)
Leptomeningeal Carcinomatous (Carcinomatous Meningitis) Ovarian cancer does not commonly involve the nervous system. Brain metastasis is a rare complication of ovarian cancer with only 67 well documented cases in the literature until 1994. A multi-institutional study of 4027 ovarian cancer patients over 30 years identified…
Whipple Procedure
Can anyone tell me about this? I am 38 and will need to have one in the near future. Any prep I can do, expectations etc...
NEUROENDOCRINE CARCINOMA POORLY DIFFERENCIATED (cervix+ METS IN THE LIVER)
Hello, Sorry for my english, I'm 38, I'm french,and Iwas diagnosised in January 2006. Cervix+ big mets in the liver, I started chemiotherapy in January every 3 weeks (etoposide+cisplatin) and had 6 cycles of three days. The mets had really well reduced, but at the end of the treatment it was not enough. Now I have…
Neuroendocrine Large Cell Carcinoma
Hi, I have just found this resource and live in the UK, I have a dear friend in Italy that is suffering from Neuroendocrine Carcinoma Large Cell , speciifcally to the right lung with secondary mediastinal lymph node infection and he has been treated for 8 months with Cisplatin + Gemcitabina (italian name) currently the…
Whippple survivor deaths
I am a 5 year survivor of the Whipple operation after pan-can. I, and we-all, would like to know why we eventually die? What does the Whipple do that makes problems? I believe that iron anemia is a prime cause. Anybody know?
ELEVATED CA19.9 TEST
Hi there again. I posted yesterday about what was going in with myself. I was just wondering if those dx.with pancreatic cancer have the CA19.9 test done. My CA19.9 test back in April 2006 was 48, now it is 65. Is this test indicative for pancreatic cancer or can it get elevated for pancreatitis.?? Any answer would…

Rare and Other Cancers

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