Meet the Warriors
Rare cancers can hit any one at any time. Thank you for supporting our warriors - those that are fighting cancer themselves, and those that are leading the way in research into a cure.
Diagnosis: Stage IV Cholangiocarcinoma with metastis to the lymph, adrenal, peritoneal, and bones (March 2020)
Genetic Mutation(s): IDH1
Current Treatment: Chemotherapy (Gemcitabine, Cisplatin and Abraxane)
My genetic mutation, IDH1 is one of the two most researched genomic mutations currently and there is a lot of activity with happening in research and clinical trials. The chemo is palliative care and unlikely to knock my tumors back completely, but I am hopeful this triple hit will keep my them in check for long enough to get me into a clinical trial. These trials give patients like me a real chance at a cure and your support of The Rare Initiative will help make that happen.
Genetic Mutation(s): IDH1
Current Treatment: Chemotherapy (Gemcitabine, Cisplatin and Abraxane)
My genetic mutation, IDH1 is one of the two most researched genomic mutations currently and there is a lot of activity with happening in research and clinical trials. The chemo is palliative care and unlikely to knock my tumors back completely, but I am hopeful this triple hit will keep my them in check for long enough to get me into a clinical trial. These trials give patients like me a real chance at a cure and your support of The Rare Initiative will help make that happen.
Diagnosis: Stage IV Intrahepatic Cholangiocarcinoma (CC) with metastasis to the liver, lungs and peritoneum. Diagnosed October, 2018.
Genetic Mutation(s): FGFR2
Current Treatment: Chemotherapy (Pemyzyre). However, I just came off of a clinical trial at MGH that extended my life 3 months.
My mutation, FGFR2, is one of the two most researched mutations for CC. Unfortunately, many of my fellow CC warriors have mutations that are not being researched. CC has a 5 percent chance of a 5 year survival so with those statistics, CC patients are in desperate need for research on their mutations. The chemo is palliative care and unlikely to be a cure but rather extend my life in the hopes another clinical trial will come along for me. Having more clinical trial options give patients like me a real chance at a cure. Please support The Rare Initiative to help make this happen for me, my fellow CC warriors and other patients with rare cancers.
Genetic Mutation(s): FGFR2
Current Treatment: Chemotherapy (Pemyzyre). However, I just came off of a clinical trial at MGH that extended my life 3 months.
My mutation, FGFR2, is one of the two most researched mutations for CC. Unfortunately, many of my fellow CC warriors have mutations that are not being researched. CC has a 5 percent chance of a 5 year survival so with those statistics, CC patients are in desperate need for research on their mutations. The chemo is palliative care and unlikely to be a cure but rather extend my life in the hopes another clinical trial will come along for me. Having more clinical trial options give patients like me a real chance at a cure. Please support The Rare Initiative to help make this happen for me, my fellow CC warriors and other patients with rare cancers.
Diagnosis: Incurable Stage IV Intrahepatic Cholangiocarcinoma (April 2016).
Genetic Mutation(s): FGFR
I am a teacher, writer, and patient advocate and I have been fighting my Stage IV diagnosis since April 2016. After traditional chemotherapy and radiation treatments left me with debilitating side effects, I made the decision to enroll in a clinical trial which I read had the potential to keep my cancer stable with fewer side effects than traditional treatments. It worked. The FGFR2 inhibitor drug, Pemigatinib(Pemazyre), is still keeping my cancer relatively stable today, and allowing me to live a high quality of life. My experiences with this trial have led to my involvement with The Cholangiocarcinoma Foundation as well as other patient advocacy organizations whose mission it is to improve patient access to clinical trials and biomarker testing. Thank you for your support.
Genetic Mutation(s): FGFR
I am a teacher, writer, and patient advocate and I have been fighting my Stage IV diagnosis since April 2016. After traditional chemotherapy and radiation treatments left me with debilitating side effects, I made the decision to enroll in a clinical trial which I read had the potential to keep my cancer stable with fewer side effects than traditional treatments. It worked. The FGFR2 inhibitor drug, Pemigatinib(Pemazyre), is still keeping my cancer relatively stable today, and allowing me to live a high quality of life. My experiences with this trial have led to my involvement with The Cholangiocarcinoma Foundation as well as other patient advocacy organizations whose mission it is to improve patient access to clinical trials and biomarker testing. Thank you for your support.
Far far away, behind the word mountains, far from the countries Vokalia and Consonantia, there live the blind texts. Separated they live in Bookmarksgrove right at the coast of the Semantics, a large language ocean. A small river named Duden flows by their place and supplies it with the necessary regelialia. It is a paradisematic country, in which roasted parts of sentences fly into your mouth.
Far far away, behind the word mountains, far from the countries Vokalia and Consonantia, there live the blind texts. Separated they live in Bookmarksgrove right at the coast of the Semantics, a large language ocean. A small river named Duden flows by their place and supplies it with the necessary regelialia. It is a paradisematic country, in which roasted parts of sentences fly into your mouth.
