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Rare and Other Cancers

Mees line on fingers or toes
Has anyone had these? Hard to find doctor who even know that these could be caused by. cancer. Anyone who can respond would help so much. Thank you.
Septum nasel cancer
Just wondering if anyone has been diagnosed with cancer of the septum in the nasel cavity? What were you early symptoms? How were you diagnosed? I am thinking I may have this as I have many of the symptoms. It is rare but happens. I am in contact with 2 other who have had this cancer.
Pancreatic cancer side effects from folfirinox treatment with rittilan and or marijuana
Has anyone had experience treatin side effects with marijuana for naseua or weightloss due to lack of appitite? Has anyone had experience using rittilan for fatigue? Both appear in scientific literature.
About GIST
I would like to hear from anyone who has the same cancer as I do. It is a form of Leiomyosarcoma. I am a survior, was diagnosed, July 27, 2000. Sure was a shock to me, needless to say. Thank you, Sharon
Bile duct cancer
Hello, I was just digignosed with bile duct cancer and set for the whipple procedure in about a week, I am 48 and in good health and shape otherwise, but of course very nervous about this procedure, I have been told I am a great candidate for thi ssurgery and the cancer is local to the duct and has not spread, I ws just…
Pancreatic Cancer
I was given 1 years to live in September 2016. Pancreatic mass was 2/3 of the pancreas. I have been doing chemo and was told yesterday that the mass is gone. I want to share this to give others hope. I am still on chemo. I still have some inflamation in and around the main blood vessel. I am so happy! My doctor said we now…
chordoma
Neuroendocrine carcinoma of the neck
My husband was diagnosed with Neuroendocrine carcinoma of the neck. Needless to say, this is extremely rare to have in the neck area. So rare, that his oncologist suspected that the pathology report was incorrect. We live in Northeast PA in a middle size city. On his suggestion, we traveled to Memorial Sloan Kettering for…
Gallbladder Cancer - Inoperable Due to Blood Vessel Involvement
Happy New Year from England! My wife (45) has recently been diagnosed with GBC, after going jaundiced. The U.K. Approach to treatment, is to attempt surgery, before employing chemotherapy. This seems to contradict American practice? Her Attempted liver resection could not be carried out, as it was found that the cancer had…
Olfactory Neuroblastoma
Hi, My husband just had surgery to remove a polyp in his nose/sinuses. It was a tumor originating from the Olfactory nerve cells. The biopsy could not confirm whether it was benign or cancerous. He is scheduled for an MRI this week. The doctor said there will need to be more surgery to make sure all of the tumor was…
GastroIntestinalStromalTumor
Adrenal cancer stage 4
Hi all friends! My husband is going through treatment for ACC stage 4 since 2015 October. First he has severe back pain and light fever than after a month the general physician found the 7cm tumor in adrenal left. It spread to liver with many spots and in back L2 bone. After six cycles of chemotherapy his liver tumors…
Duedonal cancer, stage 4
Stage four duedonal cancer : I have stage 4 duedonal cancer, I was diagnosed in may of 2016. I am now 61 years old. A woman. It's inoperable, it metastasized, into my stomach cavity, not my stomach but between. I have had a jujetsom operation to bypass my duedomen and have my stomach emptying into a intestine. I now have a…
Gallbladder cancer stage 4
Hi everyone, I am Thishanth from Switzerland. I have read your comments on this cancer website. My mother has been diagnosed for a stage 4b gallbladder cancer. Here the doctors say that there is no other options than palliative one (chemotherapy: Gemcitabin/Cisplatin). First, I wanted the doctors to remove the gallbladder…
Gallbladder cancer
hi my name is candice, my mom brandy 43 a mother of 7 we are all in are 20s and she has a 1 and 3 year old she was recently diagnosed with stage 4 gallbladder cancer this past 2016 Christmas. Probably the worst Christmas of are lives, but still happy where able to have are mother here. She was put on chemo witch seemed to…
Adult Gliomatosis Cerebri.
My father was just diagnosed with Gliomatosis Cerebriand, and because of the rarity of this cancer there isn't much information avaiable. Does anyone have any information that could be helpful? Any sucessful therapies or alternative therapies such as the use of canabis oils? Thank You
Rectal cancer stage 4 and cancer on the abdominal wall
Hi guys, Last year my husband had been fighting with rectal cancer stage 4, he been in the clear stage for couples months. Today when he had another surgery for his crohns dieses that he have for 38 year (4th Surgeries), the doctor just found that his cancer is back, and now is spread to his abdominal wall. We still don't…
Myelodysplastic Syndrome or MDS
My husband, Rick, was diagnosed with myelodysplastic syndrome (cancer) almost three weeks ago. It is hard to wrap my mind around it. He has RAEB-1, with trilineage dsyplasia. For a long time, we have dealt with a blood disorder, thrombocytosis - a myelproliferative disorder. He has way too many platelets if not controlled…
Angiosarcoma of the heart
Hi everyone. On April 1st my mom found out she had cancer for the 3rd time Shortly after we found out she had a primary angiosarcoma with mets to the liver. Unfortunately, she died April 27th, and I got custody of my little bother. I am having a super hard time dealing with this, and was wondering if someone has went…
It came back
I am new to this site and wondering if there may be others out there like me. I was diagnosed with extrahepatic bile duct cancer and had it surgically removed with chemo after for 6 months (gemzar and cisplatin). I thought I had beat it but two years later, cancer marker went up and it looks like a small spot in a lymph…
Cholangiocarcinoma survivors?
Anyone with a liver resection done and doing well? Would love to hear from you as I had this procedure in jan. of 06 and so far no problem. please let me hear from any of you as I see many who wrote on this cancer have not written for some time. My best wishes in all your battles, Pat
NET - Hoxsey Tonic & Rigvir Immunotherapy
Has anyone here had any success using Hoxsey Tonic or Rigvir Immunotherapy for the treatment of NETs during the critical stages. I hope there are some positive stories to share. Thank you very much.
bartholin gland carcinoma
If anyone has this diagnosis please let me know. We are a rare breed and if anyone had vaginal estrogen prior to diagnosis, Id love to hear from you.
Hoxsey Tonic / Rigvir Immunotherapy / Essiac Tea
Urgently reaching out to anyone that has personal experience of using these alternatives to fight cancer; Hoxsey Tonic / Rigvir Immunotherapy / Essiac tea. Particulary in relation to neuroendocrine carcinoid during critical stages. At this stage I am interested in honest personal stories, as time is of the essence. Please…
High Chromogranin A (ECL) Blood Test
I had a blood test and it is called Chromogranin A (ECL) test. The results is 433 according to my primary care doctor she said it is elevated. I have an appointment coming up for to see a gastroenerologist but not for two weeks to explain what it is. Can anyone tell me what it could be? I check the internet and I just want…
Phyllodes tumor
Hi all, I'm new to the site but not new to the disease. I had my first partial mastectomy in June of 1996 at the age of 26. After finding the lump and it being passed off by the first Dr as a cyst, then a fibroadenoma by the second Dr, I finally got a third opinion. Although reluctant this third Dr agreed to take the lump…
Signet Ring Cell Carcinoma
my wife was diagnosed with this last month. She has had 2 surgeries and is starting chemo next week. Anyone have this diagnosis and have been through this? Thanks, Tim
carcinoid, islet cell, endrocine, neuroendrocine cancers.
I just want everyone to know how important it is to see a specialist. There are only 6 in north america. Most likely your insurance will cover it and most of the specialists will consult with your oncologist. PLEASE go check out the Carcinoid Foundation web site. It has a list of specialists, And tons of info for all of…
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…
Leiomyosarcoma of the Inferior Vena Cava
I have just been diagnosed with Leiomyosarcoma of the Inferior Vena Cava (IVC). The MRI indicated the mass has invaded and occluded the IVC. There is no evidence of metastatic disease. Does anyone have experience with this type of rare cancer?

Rare and Other Cancers

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