gary-r
Forum Replies Created
-
Posts
-
The Greenwich, Connecticut Cycle for Survival event was this past Sunday. My daughter works at a new treatment center opened last year by Memorial Sloan Kettering Cancer Center and they put together a team. Their team raised $11,226. The donations are 100% used for research into rare cancers and they announced that since the beginning of this year, these events have raised in excess of $17 million. They continue throughout the country for another month or so.
CCF is dedicated to our disease, but it’s nice to see other events that will also contribute towards finding cures.
I encourage you to attend if you have one in your area. It is incredibly uplifting & positive. I couldn’t cycle, but I was able to cheer.As indicated by Marion, it was not easy to comprehend everything that was covered at the conference. However, what was quite evident was the number of Doctors, Nurses & Researchers who are working on CCA.
This is quite an uplift from the message I received when initially diagnosed: “This is a rare cancer. There is no cure. Nobody is working on a cure.”
Thank goodness for the professionals who see a challenge and decide to take it on.My wife Pat made a few suggestions:
1 – Patient / caregiver day should be a full day. There was a big turnout and many of us arrived the evening before the event. We might be able to cover more topics in lay terms.
2 – The name tags should indicate Patient or Caregiver since this was asked whenever we met or re-met someone (chemo-brain short memory). If there is a legal issue, maybe we can just put a sticker with a “P” or a “C”.
3 – The name tags can indicate the state or country where the patient/caregiver resides. Not only were we constantly asked, but it also allows you to connect with folks from your area.Scott,
We all get the same prognosis, but you don’t have to accept it. If you haven’t gotten a copy yet, please request a copy of “100 Questions & Answers About Biliary Cancer “. It will give you some insights into dealing with this disease. It’s under the Patients & Caregivers heading.
Good luck and please keep a positive outlook.On the landing page of the link you provided is the mention of a free e-book, “100 Questions & Answers about Biliary Cancer”. That was authored by my oncologist and his wife, also an oncologist. They are both experts in Liver, Pancreatic & Biliary cancers. Throughout the book are several areas labeled “Gary’s Comments”. That’s me.
This book is a fantastic resource. 7 years ago, there was almost nothing available regarding biliary cancer except some brief items on the Web that were very depressing. I highly recommend this to anyone who has CC or is a caregiver.
Lainy, Agree about everything in moderation, however there are folks who eat lots of rice. Just want them to be aware that if someone has a health problem, the added arsenic might be a contributor. One thing that I’ve found is that there is no “good” level of arsenic.
Yes, I’ve been getting chemo for almost 7 years. It was this week, in 2008 that I began to show signs and was soon diagnosed with CC. I spent that new years eve in Memorial Sloan Kettering getting a biliary stent and biopsy . My first treatment, cisplatin & gemcitibine, was January 27th. It’s been a long time and the chemo has changed, but I’m happy to say that I’m still here and happy to be getting treatments every 2 weeks.
For those who may be interested, the following link will bring you to the article in Consumer Reports.
http://www.consumerreports.org/cro/magazine/2015/01/how-much-arsenic-is-in-your-rice/index.htm
