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Rare and Other Cancers

Archives for September 2009

Lymphomatoid Granulomatosis
Hi, I am asking for anyone who has a loved one with Lymphomatoid Granulomatosis of the Central Nervous System (my sister has it from the brain and the spinal cord.) My sister is British living in Australia with her young family and is 39 years old. She has in the last 12 weeks been diagnosed with the condition and is…
Hyperthermic intraperitoneal chemo
Has anyone had the heated intraperitoneal chemo after surgery?
Ileostomy Reversal Surgery Ostomy Bag Rectal Cancer
From my husband's surgeries and recovery from the Ileostomy and reversal procedures, led us to make a website during his recovery. It is at www.freewebs.com/ileostomyreversalsurgery. It is to help those who are facing the same thing or close to the same thing. We had so much trouble finding info that we needed answers for,…
Cholnagiocarcinoma & Appendial Adenocarcanoma at the same time.
My 52 year old sister has been diagnosed with: 1) Unresectable primary Cholangiocarcinoma in the left lobe of her liver extending to the Pancreas. 2) Carcinomatosis consistent with Adenocarcinoma with Peritoneal spread. 3) Evidence of Lung Mets. The doctors continually tell us how rare a case she is, and frankly it seems…
Pancreatic Cancer - Please help us!
I really hope someone out there can give me and my family some much needed help and advice. On August 24th, my 56 year old father was diagnosed with pancreatic cancer. It came as a complete shock to my entire family. We thought he was going into surgery to have a cyst in his pancreas drained and that after that all would…
Michael Muhney of The Young & The Restless
I found the new LA Cancer Challenge Video on You Tube feat. Michael Muhney of Young and the Restless Fame! What do you think? Like it? http://www.youtube.com/watch?v=kONjAhZGQb0
Anal Cancer - After Effects of Treatment
Astrid, my wife, has just completed her 20 week treatment of Radiation and Chemo. The very delicate areas of her Anus and Vagina have what appears to be, 3rd Degree Burns. She is in dire pain. We are treating the areas with Diapine. Are there other Creams that can be more effective. Help me please.
PET scan reading???
can anyone tell me if it is common for a PET scan done three months after concluding radiation and chemo treatments still show "significantly DECREASED activity" in the original surgery location? I had nasal cancer surgery in early March and lost half of the roof of my mouth, the right side of my upper jaw, part of my…
Carcinoid Cancer
I have recently been diagnosed with carcinoid cancer of the ovary. It was found unexpectedly while having a hysterectomy. It was totally removed and 32 biopsies were neggative. I feel fine and have no symptoms of anything wrong so I don't know what to expect of the scans. Had two scans this week, octreotide scan and CT…
Syringoid Eccrine Carcinoma (need any possible information)
Hi, My mother was just diagnosed with syringoid eccrine carcinoma, which as I understand is a dermatalogic cancer. There is very little information available on this cancer. Has anyone had any experience with: - Surgery (Mohs versus regular surgery) - Therapies - Physicians (do you go to a general oncologist or a…
Cancer of Unknown Primary - Adenocarcinoma
Cancer of Unknown Primary--Specifically, Adenocarcinoma of Unknown Primary recognized by an intestinal blockage which turned out to be a substantial tumor with extensive lymphatic involvement, characterized via genetic and molecular assay as "very similar to intestinnal cancer." I'm looking for others with similar…
squamous cell maxillary sinus cancer--anyone???
Is there anyone out there that is dealing with squamous cell maxillary sinus cancer? I have been searching this site and others trying to find someone to exchange information and/or encouragement with...to no avail. I was diagnosed in Feb or this year (2009), and in March, had surgery where about half of the roof of my…
pancreatic Cancer
I have a friend just dx with this and they are talking about the whipple procedure. She will be having this done in a chicago hospital. Can someone tell me what kind of recovery she will have, like how long before she would be on her feet. Can someone maybe explain what they will be doing.
Are there any survivors of Splenic Angiosarcoma in the world?
I am now at 7 years past my "terminal diagnosis" of splenic angiosarcoma and have spent considerable time trying to find other survivors of this rare cancer. The last doctor I contacted said he didn't know of anyone who made it past 5 years survival. The prognosis is "always" considered terminal because the disease isn't…
Pancreatic Cancer...advice?
I am 20 years old and my mother may have pancreatic cancer. Her skin turned very yellow, and we didn't think anything of it as she was not in pain, but after a test the doctors found a mass on her pancreas and it is pushing against the liver which is why she is jaundice. We will not know for a day or two if it is cancer,…
Melanoma - Diagnosed after lung mass found
My 85 yr old friend was diagnosed on Aug. 14, 2009 with a rare Melanoma -- it has already created a 5mm mass on her lung and lymph nodes down the center of her chest. NO surface mass was found. She also suffered a mild heart attack on Aug. 13th, and has had Arrthymia for many years. She is NOT eligible for surgery. She is…
gall bladder cancer
My sister ahs stage iv gallbladder cancer she has a scan on tuesday. Please say prayers for Diane
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…
Endometrial Stromal Sarcoma
I was diagnosed with endometrial stromal sarcoma in 2000. The sarcoma started in a fibroid tumor in the uterus and spread from the depths of the endometrial lining out to the uterus, blood vessels, soft tissue and lymph nodes. This is a cancer that makes up less than 1% of all gynecological cancers. It is a slow mover,…
pancreatic cancer- how to reduce T.Bili ? urgent!
Dear all, My father was diagnosed with pancreatic cancer in mid-July. The doctor said my father is in Stage IV. Now his T.Bili has rising up to 34, Dr. said it will cause patient in coma....it's really urgent situation. Does anyone know how to reduce T.Bili? Thanks a lot!
external radiation
i am set to start this treatment very soon after being diagnoised with paraganglioma in the neck area. it was malignant and my thyroid was removed. the cancer doesn't seem to have spread but it did do alot of damage to my parathyroid glands(only have 2 left),traceha and esophagus.i don't have much of a voice left since it…
pain patch
sister has gallbladder cancer has anyone had a pain patch?
Brenner Tumor
Can anyone give me some info on Brenner Tumor? I am looking for someone that has been diagnosed with this type of tumor to talk to.
Pancreatic Cancer
My husband has just been diagnosed with Pancreatic Cancer. Its now a week since the diagnosis and we have not had any plan or blood results yet. He had a CT Scan and his notes were sent to the Pancreatic team at another hospital. The tumour was blocking his bile duct which caused him to be sick and jaundice. He had an…

Rare and Other Cancers

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