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Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
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New Pancreatic Cancer Discussion Board
We have created a new Pancreatic Cancer discussion board. We've moved over two discussions to help launch the new board, but due to the quantity, we will keep the remaining discussions on the Rare and Other Cancers board. Thank you! Your CSN Support Team
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Cholangiocarcinoma Treatments
My husband was diagnosed with cholangiocarcinoma on June 2nd. The medical team initially thought they could perform a resection, but further scans revealed additional lesions on his liver, making the resection no longer an option. After two hospital stays for infections and stabilizing his bilirubin levels, he began…
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Adrenal Cortical Carcinoma
My wife was diagnosed on Jan. 16th with an adrenal cortical carcinoma (only 30 - 50 cases per year nationwide). The only treatment is mitotane. This cancer doesn't respond to chemo. I've found survivors who used an alternative treatment protocol and I have put her on the same program. She is recovering nicely and we are…
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Gallbladder Cancer 2023 (All Stages)
(I've started this topic because the most recent annual forum I could find was for 2018.) I have gallbladder cancer, discovered during what was anticipated to be a routine laparoscopic removal of my gallbladder, based on the presence of gallstones. As is the case in "Western" countries, gallbladder cancer is most…
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Gallbladder cancer stage IV with liver metastasis
My mom, who is 66, was diagnosed with stage IV GBC. Two oncologists stated that an operation is not feasible at this time. She is on Gemzar and Cisplatin (2 weeks on and 1 week off). A few questions for the board... At what point during treatment was a follow up CT scan done? How long did treatment last? Was surgery ever…
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Gallbladder Cancer Stage 4
Hi, A week ago my mom was diagnosed with gallbladder cancer stage 4. I am looking for survivors. Anyone who knows a survivor. I know the statistics, the doctor has already given us a time frame, and the oncologist has told us to go for "quality of life". If there are any survivors or if you are having successful treatments…
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Gallbladder cancer that metastasized to liver & Abdomen
Hello, My 73 year old mom had lung cancer in 2019, they did a resection and she went into remission. We found out in August she has gallbladder cancer that metastasized to her liver, abdomen and lymph node. They told her it is palliative care at this point and she started Chemo & immunotherapy to shrink the tumors. She…
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Conjuctival Malignant melanoma
My name is Carrie, I was diagnosed with a very rare form of eye cancer about 2 years ago called , conjuctival malignant melanoma. It makes up about 2% of all eye tumors . To find people with with this type of cancer has been very difficult , to say the least. To find a Dr. To treat it in AZ. has been near to impossible. I…
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60 year old friend with gallbladder cancer and tumors all over
Please bear with me. I'm just looking to help a dear friend any way I can and thought this might be a good place to start. He is 60 years old and has cancer. It started as gallbladder cancer a few months ago. They opened him up to try the Whipple procedure, but discovered it has spread a lot and there are approximately 12…
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Life Update w/ Stage 4 Adrenal Cortical Carcinoma
Hi guys, My name is Cassandra as some of u know my story I was diagnosed in 2021 while being 5months pregnant w/ my son. I had surgery to remove the tumor as well as my right adrenal gland. After surgery I recovered then in late January of 2022 I had my son. Once I was cleared I did 25 rounds of radiation & thought I was…
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Adrenal carcinoma cancer
Just wondering if anyone out here knows much about this cancer. I have been diagnosed, but I think I still have a chance at a good outcome.
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Fallopian Tube Cancer
In June of 2007 at the age of 40 I was diagnosed with Fallopian cancer (stage 3), I had a full hysterectomy followed by chemotherapy. My doctor told me "aggressive cancer, aggressive chemotherapy" and through it all my doctor was wonderful. It has almost been one year since my treatment has ended. So far everything is…
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Neuro Endocrine Cancer of Pancreas
I have recently been diagnosed with Neuro-Endocrine Cancer of the Pancreas. I have been prescribed Nuclear radiation therapy - Lutetium Dotate Therapy - but am yet to decide what to do. Has anyone been through this - I would like to share and chat. Thanks HariM
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Voice box cancer
Recently diagnosed with cancer and I require dialysis 3x wkly. I am 77 yr ol male in need of transportation to and from treatments.
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Insurance issues
Hello. I am here on behalf of my sister who has Neuroendocrine Carcinoma with mets to both ovaries and liver. When this recurrence happened in April of this year her company let her go due to performance issues. She now has Cobra insurance that is good until December. She is collecting unemployment which is her primary…
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Angiosarcoma
38yrs old diagnosed with Angiosarcoma in my breast , NEVER had any cancer, radiation exposure before , (which In Most cases is the cause) . I had a full mastectomy then week later had a re excision in chest wall … with this cancer being so rare and aggressive and doctors not having enough knowledge with treatments and all…
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New here
Just diagnosed with Eye Cancer. Currently using Chemotherapy eye drops. Anyone else have experience like this?
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Newly Diagnosed with Mycosis Fungoides
Any have this type of cancer and if so how are you managing?
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MYCOSIS FUNGOIDES, Cutaneous T Cell Lymphoma
Hi there, has anyone been diagnosed with MYCOSIS FUNGOIDES? It's a blood cancer that effects the skin. it is the under the umbrella of Non-Hogkins lymphoma . thank you
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Multiple primary cancers
Hello, I am waiting to hear the confirmation (or not, hopefully!) of my 4th primary cancer. In 2004 I had thyroid, 2008 breast, 2011 endometrium and now during CT scan control, a mass in the left kidney, first spotted last year, has grown. Now this... seems to be terrible luck, to say the least. I feel also very lonely,…
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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…
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any body out there choosing no treatment for their cancer?
My husband was recently diagnosed with duodenal cancer with probable liver mets. We have researched many of the procedures and treatments that may be available. My husband having watched his mother go through pancreatic cancer with all of the treatment was thinking, are you better off just not doing anything. Treatments of…
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Ampullary Cancer stage4
Hello, Still in a bit of shock over here. Hubby went in for Whipple for adenocarcinoma at ampule of cater. Found it in his liver. Did a gastro-jujenostomy so he can keep food down and close him up. Surgeon called our (am being treated for stage 3 RCC) oncologist from the OR and they discussed chemo for 3-6 months then…
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Mesonephric Endometiral Adenocarcinoma
I am wondering if anyone has had or know someone that had Endometrial Adenocarcinoma? I am trying to find a survivor of this very rare cancer, but so far I have not had any success. I was diagnosed in August 2015 with this very rare cancer. I was misdiagnosed for 6 months from various doctors treating for a UTI even though…
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Anyone else have the same diagnosis?
In 2017 I found out that 25% of my right kidney was cancer. Chromophobe to be exact. So I had it removed. 2021 I had a pea size tumor that was clearcil (I know I didn't spell it right) cancer. Last year I had another surgery where they removed 9 tumors but I still have over 20 tumors in my body and I am stage 4 now.…
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New here and don't really know what to do.
Hi
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Hello!
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Pancreatic Cancer
I am 85 years old, have inoperable pancreatic cancer, and I just started my first chemo treatment of Fluorouracil (5-FU) on September 25th. It has been eight days and I have had absolutely no significant side effects. My second round of chemo will be on October 9th with the addition of oxaliplatin. I am scheduled for 11…
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ampullary cancer
I was diagnosed with Ampullary cancer in Jun 2009. Was suppose to have the whipple procedure but was unable to complete the surgery due to the fact that the cancer had spread into the lymph nodes. I have been on chemo treatment since Aug 2009 it is called the GTX protocol and I have been doing very well. Has anyone else…
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Alternative treatment and cholangiocarcinoma is working
Hi All, My wife was diagnosed with cholangiocarcinoma, bile duct cancer, last fall. She was operated on but the cancer was non-resectable. The doctors and oncologists I spoke to were giving poor prognoses about her chances. The oncologists and other info I was able to find basically said that chemo and radiation wouldn't…
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Papillary carcinoma in left breast
It’s very rare and from what I read I found it early and will have a lumpectomy and radiation soon and a pretty good prognosis. I’m 62 and I’ve never had any problems with my breasts before. Has anyone else gotten this? Did it spread to another form of cancer in a year or 2? I read that happened to someone. Thank you!