Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Rare and Other Cancers

Support Group in Alabama
Fellow survivers here who live in or near Alabama, who would like to start a support group in North Alabama Please email me at krp@hiwaay.net My name is Kevin.
Support Group in Alabama
Fellow survivers here who live in or near Alabama, who would like to start a support group in North Alabama Please email me at krp@hiwaay.net My name is Kevin.
Nothing you haven't heard/read already
I signed up with CSN not quite a year ago. I have read many posts but this is my first actual posting. My girlfriend was diagnosed with pancreatic cancer in Nov 2003. The doctors were hopeful since they caught it soon and the spot was small. She has been on chemo until last month. her liver was beginning to fail so they…
Help! Treatment Options
My 55 year old father has just been diagnosed with Stage IV of pancreatic cancer that has metastisis to the liver. He has a 5.2 cm tumor on the lower end of the pancreas which is causing him great pain but the doctors say is inoperable. Any advice on doctors and treatments? We just found out this past Tuesday, so there has…
brother died of pancreatic cancer
I need to talk so very much about the neglect of his care.
oncologist near Raleigh?
Hi, my sister was just diagnosed with an advanced stage of pancreatic cancer. Our family is looking for an oncologist in the Raleigh, North Carolina area. We need a doctor who is compassionate, knowledgeable and understands the need for pain management. Thanks for any help in identifying qualified onc. specialists.
New - Need Advice
I have been viewing this board for some time as I have undergone tests for PC. I am 40, single mom of 3. About 3 weeks ago I went to Urgent Care with backache, upper ab pain. Cscan revealed possible Pan mass or Volume Averaging and I was urged to follow up. I have since had an MCRP (MRI), Sectioned Cscan, and some sort of…
triplet sister has cancer/need advice
I just found out that my triplet sister has pancreatic cancer one month ago. It is in her pancreas, liver and some part of her lungs. Stage 4. She is a fighter and is on gemstar and oxiplatin. She had a hard time keeping food down and had to wait an extra week for chemo. We remain hopefull that chemo will help her for a…
Side effects of Xeloda
Hi, My father was diagnosed with a stage II adenoncarcinoma of the Pancreas 5 weeks ago. It has metastased in the Liver. The tried to do a wipple 3 weeks ago but did not remove the tumor, however they relieved him from the bile poising. He never wanted Chemo for he has always had an aversion to vomiting. Now he has changed…
Sloan kettering NYC
I would so appreciate anyfamily or patient who was treated or in a trial conducted by Dr. Gary Schwartz to please contact me.For my brother who passed away. Thank you.
blood sugars
My blood sugars are running high. Will probably be starting on insulin soon. Is this routine after pancreatic cancer? Had 80% of the organ removed.
want to talk to ppl with ......
please respond if there are ppl out there with maligant fibrous histiocytoma my husband had it twice and he whould like to talk to more ppl with it and see if they are having the same thing that is happening to him . He had it in the leg and was also wondering if they are having the same reaction as he did with the surgry…
Nasopharyngeal
Hi! I am fifteen years out of stage 3 Lymphoepithelioma of nasopharynx. Ca is cured but late effects of aggressive therapy (chemo and r.t.) are tough. Anybody relate?
whipple operation
Since your whipple operation Does anyone out there have a feeling at times like its hollow under the sternum?? Almost like there is a space. How about funny little pains like cramps in your lower abdomen?? What side effects?
Ewing Sarcoma
Hello I was diagnosed with a Ewing Sarcoma last September and I am on chemo since then. Radiation is planned as well. Does anyone have similar experience?
Inoperative Pancreatic Cancer
Does anyone know of any clinical trials accepting people, in the Boston area? I am desperate to find something for my husband. He'll begin intense radiation and chemo in about a month, but I'm not hopeful. Please help. Thanks, Paula
Bile Duct Cancer
My step-father was just diagnosed with bile duct cancer about a month ago. He had the triple by-pass surgery, you know the small intestine re0route etc. He is doing just ok now. He has lost sooo much weight and hardly has any energy. He was just admitte dintot he hospital agin..he was complaining of pain in a couple parts…
neuroendocrine carcinoma
Hi, I just came out of hosp. this week. Had a tumor removed and a axillary disection. I had a small lump under my arm in breast area. Felt flat and had a bruse over my skin. Nothing to do with breast cancer. It's name was neuroendocrine carcinoma. The 15 nodules removed from the axillary disection came out negative. I am…
Islet cell tumor / neuroendricine tumor
Is there anyone out there who has had a whipple operation to remove an islet cell tumor of the pancreas?
Oral cancer/tongue
The guy I have been with for a little over a year has a small white growth on his tongue, and is scared to death to get it looked at. I have done research on oral cancers, and the outcomes never seem to be good. Is there anyone that has a good story of survival from an oral cancer? I am so lost on this. I don't even know…
GIST
Hello, Last November I had a Gastro-Intestinal Stromal Tumor surgically removed from my stomach. Four days following surgery, they informed me that they had found some cancer cells in the tumor and would have to perform a second surgery (five days after the first surgery) in order to cut an exclusion area around where the…
bileductcancer /pancreatic
Any one need to talk but me?
Painful, blue fingertips
My husband has pancreatic cancer and is on his second round of chemo. He has the normal effects from chemo such as nausea and fatigue but his latest problem is blue fingertips on the index and middle fingers of both hands. It is very painful and hurts constantly. He has been checked for vaculitis and autoimmune disorders…
I could use some support
My step-dad was diagnosed about 5 weeks ago and after 2 weeks of tests and meetings at M D Anderson in Houston they had decided that whipple surgery was not an option and to send him back to Dallas for Chemo. He was given 2-6mo w/o treatment. 2 years tops if he does treatment... I am kinda freakin out!! He is going to…
Liposarcoma and Chemo
I'm on my third recurrence of liposarcoma. the first in 1997 was removed surgically as was the second. I've had one round of chemo and radiaion. I now have another tumor, plus lots of little ones. I understand the success rate for standard treatments is 35% (Ifosmide and dixiorubicin). The second round, as perscribed by MD…
Peritoneal Mesothelioma
I was diagnosed with Diffuse Malignant Peritoneal Mesothelioma in Sept. 2001. Had surgery in Oct. 2001 and intraperitoneal chemotherapy. The cancer came back. Had surgery again Sept. 2002 and now in intravenous chemotherapy. I wonder if anyone else out there has a similar situation.
What can nurses do to better help you?
I am an RN student and I would like to know what the nurses who care for you could do to better help you? I'm anxious to get your feedback! Please reply!
Clinical trials and hospice
My dad, age 80, was diagnosed with Stage IV pancreatic cancer two months ago. Since his diagnosis I've been frustrated with the lack of coordinated health care management of his life limiting disease. No doctor wants to discuss anything other than the immediate issue, whether that be a particular test or medication or pain…
tell me if there is hope
posted a message yesterday on my husband was diagnosed with pancreatic cancer..been reading all of your messages and reply's..gone to the cancer specialest today and they did not answer alot of my questions..the only answer is my husband had 6-8months to live and an wipple was not the answer..only info: I recieved from the…
Cutting into cancer
I have a theory that once they cut into cancer that is advanced it will spread whatever you do I would never have surgery again and certainl;y not radio or chemo its awfultreatment and kills more than it cures although i am sure lots woill disagree with me

Rare and Other Cancers

Discussion List

Discussion Boards