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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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“Spontaneous regression of cancer"
I talked with my oncologist this morning about the results of my CT scan. I was shocked when she not only said the cancer has not grown but it has shrunk. I asked how this was possible with no treatment. She said that my own immune system attacked the cancer. I then remembered a passage that shows below. For years my own…
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Spontaneous regression of cancer
I was diagnosed with Ampullary Cancer in Nov. 2024 after an Endoscope tissue sample showed it was Ampullary Cancer. My bile duct was blocked by the cancer so a stent was placed. I lost my appetite losing about 15 lbs. In early February I started getting my appetite back and I started feeling much better. A CT scan with…
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Ampullary Cancer with ZERRO treatment offered
I had a stint put in to unclog my bile duct. I felt better even in the recovery room. They won’t do a Whipple on me because of my advanced MS. I was told that I would have a high probability of not making it off the operating table. So I have been offered Zero treatment.
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Vulvar Cancer
I was first diagnosed with VINIII in Nov. 2016 and I've had surgery every year since. I'm a 73 year old widow amd first found it 6 months after my husband died. It continues to come back but my oncologist watches me closely. Only in 2019 did it come back Stage 1. That year I was there in Feb and when I had surgery in June…
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Choroidal Melanoma
Hello everyone, I was writing to find anyone else who may have this cancer. I was just diagnosed with this cancer after going to my eye doctor. I woke up one morning and noticed an increased amount of floaters in my vision. I blew it off for months and also because I didn't have insurance or money to pay for an eye visit.…
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Ampullary Cancer how should I feel?
I was diagnosed in Nov of 2024. I had no appetite at all losing 15lbs. In early January they opened my bile duct with a stent. Right now I feel great as if I didn’t have cancer I feel that good. Is this normal? Am I just waiting for the shoe to drop? Do I feel this good because my bile duct was opened up? I’m having a CT…
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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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what kind of doctor is this
My father, 82, had a gastrectomy last year and was too weak for preventive chemo. Now he is stronger, has put on weight and has been feeling better since May. His recent blood test was OK, but the doctor says that anyway, "as we knew" (!), the cancer had spread and suspects that something is wrong in the patient's urine…
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Small intestine cancer stage 4 (very rare)
Hello everyone! 2 1/2 years ago my husband was diagnosed with stage 3 small intestine cancer. He went through 12 rounds of chemo and has been doing great until his last CT scan in December 2024. After reviewing the CT scan the doctor requested a PET scan and a biopsy . Today we met with the oncologist who informed us the…
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Ampullary cancer with no treatment
I was diagnosed with Ampullary cancer in November 2024 and that came as a total shock since I was being treated for a pressure sore. My doctor recommends not having a Whipple. I have had MS that was first diagnosed in 1984 and it is quite advanced being paralyzed from my waist down. My left side has only gross motor…
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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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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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Looking for someone to connect with my mom to share experiences in this tough time
Hello, I am looking for a friend to connect my mom with to share thoughts and feelings - someone in a similar situation to her that can relate my mom is 67 and was diagnosed with cholangiocarcinoma in August 2023. She went through chemo and a liver resection surgery. At her 1 year cancer scan in Dec 2024, the cancer is…
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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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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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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…