Bulldogs move faster than you expect. They look awfully ungainly with short legs, but my English bulldog Izzy can probably outsprint most people. Of course, she sleeps 80% of the time, storing up that energy for those manic moments. But, I find a similarity between the two of us. I sleep an awful lot myself. And, then I sprint around trying to get the most done before my next narcoleptic relapse.
I find one of the worst side effects of carcinoid is having to sleep more. Being a night-owl, it’s hard to make it to my early morning appointments without a lot of caffeine. Here’s my thinking, I know that caffeine is not good for cancer patients. I don’t recommend it. However, I draw a line between the drugs that I’m prescribed and my recreational drugs. I figure that for six years I’ve been good about taking my aredia infusion every 28 days for bony metastases, and taking Sandostatin to control my symptoms. So, I’m entitled to my recreational drugs—caffeine, Halloween candy (buy extra so it lasts you all year), fried noodles. I don’t tell my oncologist, but, as supportive and compassionate as he is, I think he’d laugh and say enjoy!
I received an e-mail from a patient about the current QuickPoll—for this patient the problem is with exercising at all. She gets massive headaches when she exercises. Who else out there has trouble with exercising because of carcinoid? Post your comment and let her know how you’ve overcome feeling lousy while you exercise. Or maybe you haven’t. Fill us in!
Wednesday, September 27, 2006
Saturday, September 23, 2006
Being Active
QuickPolls
The latest Caring for Carcinoid Foundation QuickPoll results give us fascinating insight into our community. QuickPoll #1 showed that 80% of visitors to our website are patients, family members and friends. We are truly a caring community, looking to improve our lives and help each other. QuickPoll #2 shows so far that 70% of carcinoid/NET patients have enough energy to exercise 2 times per week or more. So, we're also a very vibrant and energetic community!
Events and Photos
Our Photo Gallery reflects this active involvement in so many wonderful events. One of my greatest joys in this journey is meeting each of you. I have met the most extraordinary people in Texas, Colorado, California, New York, Philadelphia, Washington, DC, Massachusetts, and elsewhere. We are an active, committed group working hard to make a difference for our carcinoid/NET cancer community!
Travel
This week, I'm traveling from Sunday, Sep 25 through Saturday, Oct 1. Today, I am in the middle of my first conference—an inspiring scientific conference for neuroendocrine scientists at the Banbury Center in Cold Spring Harbor, New York. Immediately after, I will attend the NORD conference in Washington, D.C. entitled, "Road Map for Rare Disease Research." Dr. Andrew C. von Eschenbach, current head of the FDA and former head of the National Cancer Institute, will be the keynote speaker. The agenda is focused on the opportunities and challenges in finding cures for rare diseases like carcinoid/NET.
Optimism and Knowledge
I look forward to bringing this knowledge back to our community. I am encouraged to learn how much scientific insight has increased over the past few years thanks to patient support and the significant, strategic funding from the Sackler family, the Stephen and Caroline Kaufer Foundation for Neuroendocrine Research, and the Caring for Carcinoid Foundation, among others.
I will share what I learn on my travels and look forward to hearing your insights and experiences.
Thank you for your many kind comments! I appreciate all of your posted comments and e-mails.
All my best,
Nancy
The latest Caring for Carcinoid Foundation QuickPoll results give us fascinating insight into our community. QuickPoll #1 showed that 80% of visitors to our website are patients, family members and friends. We are truly a caring community, looking to improve our lives and help each other. QuickPoll #2 shows so far that 70% of carcinoid/NET patients have enough energy to exercise 2 times per week or more. So, we're also a very vibrant and energetic community!
Events and Photos
Our Photo Gallery reflects this active involvement in so many wonderful events. One of my greatest joys in this journey is meeting each of you. I have met the most extraordinary people in Texas, Colorado, California, New York, Philadelphia, Washington, DC, Massachusetts, and elsewhere. We are an active, committed group working hard to make a difference for our carcinoid/NET cancer community!
Travel
This week, I'm traveling from Sunday, Sep 25 through Saturday, Oct 1. Today, I am in the middle of my first conference—an inspiring scientific conference for neuroendocrine scientists at the Banbury Center in Cold Spring Harbor, New York. Immediately after, I will attend the NORD conference in Washington, D.C. entitled, "Road Map for Rare Disease Research." Dr. Andrew C. von Eschenbach, current head of the FDA and former head of the National Cancer Institute, will be the keynote speaker. The agenda is focused on the opportunities and challenges in finding cures for rare diseases like carcinoid/NET.
Optimism and Knowledge
I look forward to bringing this knowledge back to our community. I am encouraged to learn how much scientific insight has increased over the past few years thanks to patient support and the significant, strategic funding from the Sackler family, the Stephen and Caroline Kaufer Foundation for Neuroendocrine Research, and the Caring for Carcinoid Foundation, among others.
I will share what I learn on my travels and look forward to hearing your insights and experiences.
Thank you for your many kind comments! I appreciate all of your posted comments and e-mails.
All my best,
Nancy
Sunday, September 17, 2006
Welcome!
Today I’m sitting at the wooden desk where I do most of my work for the Caring for Carcinoid Foundation. The air is crisp, cool and the leaves are beginning to change color. Although I’m a native San Diegan, fall in New England is unparalleled! The clematis that my next-door neighbor planted is in beautiful, white bloom.
Why am I writing?
I write today because of the wonderful e-mail messages and letters I receive from all of you.
Questions about my health—
Many people ask me about how I feel; what treatment I receive; what food I eat. In general, I feel terrific although my health has declined gradually since my diagnosis in July 2000. I need more and more sleep. I suffer from occasional abdominal pains, deep flushing and extreme bony pain as a result of the metastasis to my bones. Recently, I landed in the hospital due to diverticulitis. I’d be curious to know if many carcinoid and related neuroendocrine cancer patients have experienced diverticulitis.
I receive regular shots of Sandostatin LAR for my carcinoid syndrome and bisphosphonate treatment to stabilize my bones.
I try to eat organic foods and a balanced diet. I do not drink alcohol, but I eat whatever I want in moderation.
Upcoming plans—
During the last week of September, I will attend a terrific scientific conference at Banbury Center in Cold Spring Harbor, New York at which many eminent scientists are invited to discuss their scientific research and insights into carcinoid and related neuroendocrine cancer. Immediately after, I will return to Washington, D.C. to meet with our supporters at the FDA, NIH and in Congress to continue to educate and inform them of carcinoid and neuroendocrine cancers. In mid October, I will be in the San Francisco area to speak with the terrific scientists and oncologists there, including Dr. Seung Kim, one of four recipients of the $250,000 2006 Caring for Carcinoid Foundation Research Grants.
Parents?
I’m not a parent, but I receive many e-mails from parents diagnosed with carcinoid who also have young children. Are you a mother or father with carcinoid or neuroendocrine cancer and young children? Please e-mail me and let me know if you’d like to support others in the same situation. I’d like to bring all of you together to support each other with the unique challenges that you face.
As a six-year carcinoid patient, I’ve learned that the journey is challenging, but filled with tremendous joy, new friends and promise.
I hope to meet you soon! Thank you for your support. Please continue to let me know how the Caring for Carcinoid Foundation can serve you better. Our primary purpose is to improve your lives now and in the future.
Warmest regards,
Nancy
Why am I writing?
I write today because of the wonderful e-mail messages and letters I receive from all of you.
Questions about my health—
Many people ask me about how I feel; what treatment I receive; what food I eat. In general, I feel terrific although my health has declined gradually since my diagnosis in July 2000. I need more and more sleep. I suffer from occasional abdominal pains, deep flushing and extreme bony pain as a result of the metastasis to my bones. Recently, I landed in the hospital due to diverticulitis. I’d be curious to know if many carcinoid and related neuroendocrine cancer patients have experienced diverticulitis.
I receive regular shots of Sandostatin LAR for my carcinoid syndrome and bisphosphonate treatment to stabilize my bones.
I try to eat organic foods and a balanced diet. I do not drink alcohol, but I eat whatever I want in moderation.
Upcoming plans—
During the last week of September, I will attend a terrific scientific conference at Banbury Center in Cold Spring Harbor, New York at which many eminent scientists are invited to discuss their scientific research and insights into carcinoid and related neuroendocrine cancer. Immediately after, I will return to Washington, D.C. to meet with our supporters at the FDA, NIH and in Congress to continue to educate and inform them of carcinoid and neuroendocrine cancers. In mid October, I will be in the San Francisco area to speak with the terrific scientists and oncologists there, including Dr. Seung Kim, one of four recipients of the $250,000 2006 Caring for Carcinoid Foundation Research Grants.
Parents?
I’m not a parent, but I receive many e-mails from parents diagnosed with carcinoid who also have young children. Are you a mother or father with carcinoid or neuroendocrine cancer and young children? Please e-mail me and let me know if you’d like to support others in the same situation. I’d like to bring all of you together to support each other with the unique challenges that you face.
As a six-year carcinoid patient, I’ve learned that the journey is challenging, but filled with tremendous joy, new friends and promise.
I hope to meet you soon! Thank you for your support. Please continue to let me know how the Caring for Carcinoid Foundation can serve you better. Our primary purpose is to improve your lives now and in the future.
Warmest regards,
Nancy
