A very busy and wonderful time of year and I'm as happy as can be.
I'm doing fairly well with daily health and wellness. My diet is not 100% healthy but I continue to work toward balance in enjoying life and my community of friends and family while caring for my health. I've been successful at turning my gingerbreads into a sugar free healthy holiday treat and I still love them. I'm plagued by fatigue and gastrointestinal discomfort at times but I focus on other things like walking the Seward Park loop, riding my stationary bicycle while watching Oprah's Super Soul Sunday show or other spiritual folks programs. I try to meditate and take sauna's for further relaxation. I took a great Mindfulness Meditation class at Swedish. Staying relaxed I'm sure is a part of the "no growth" we continue to see with the tumors, when August CT scans were compared to February ones.
I've chosen a new oncologist, Veena Shankaran is with Cancer Care Alliance. (SCCA) She is the most knowledgeable about NET's yet.
I've applied for 2 clinical trials (Stanford and National Institute of Health in Maryland) and will find out in mid January if I've been accepted. These are both for the new head to toe scan that will show everywhere I have NET's to an increased level. With the results of this scan we will assess next steps. I may be headed to Germany for what is called the PRRT treatment. I'll get into what that is later. Or look it up on PRRT.org.
Peter and I have been doing our little trips we love to do on the week ends the last one to Leavenworth to stay at the Sleeping Lady Resort and watch the Christmas Tree lighting ceremony. We rode in a sleigh pulled by a beautiful horse across a snow covered field. In January we will return to Maui for Peters 58th Birthday. Peter's band has continued performing. We moved our little C-Dancer boat back to moorage at Twin Bridges near Anacortes. That will allow us quicker access to the San Juan's again as the weather permits.
Today is my daughter Jessica's 31st birthday and her daughter Paityn is 14 months a real darling. They both bring me much joy. Thaddeus and his children Kimani 4 and Ayana 20 months were over last night to cheer the Seahawks on with Grandpa Peter, Grandpa Jerry and I.
I must get back to wrapping presents and making gingerbreads for now. I have a deadline you know. :-)
Happy Holidays!!!
Monday, December 22, 2014
Monday, October 13, 2014
Clinical Trial of Galium 68 scan - I'm applying
NIH Clinical Trial: Unique Opportunity for Carcinoid & NET Cancer State-of-the-Art Scan
Imagine having a nuclear scan that can change the course of your health and future -- at no charge! Carcinoid and NET (neuroendocrine tumor) cancer patients have this opportunity by participating in the National Institutes of Health (NIH) clinical trial, Evaluation of 68Gallium-DOTATATE PET/CT for Detecting Neuroendocrine Tumors (NETs). The NIH study is especially timely as the radiopharmaceutical Gallium-68 was granted orphan drug status by the US Food and Drug Administration (FDA) in November 2013. This designation is significant because it may lead to faster approval of the agent, which would greatly benefit carcinoid/NET patients in the United States.
For those who are living with a NET or suspect they have a neuroendocrine tumor the “gold-standard” of nuclear imaging in the United States is the octreoscan. Used in Europe, Canada and Australia, the Gallium-68 (GA-68) DOTATATE PET/CT scan is a higher-resolution scan, able to detect tumors not seen on MRI, PET, CT, or octreoscans. Because the Gallium agent binds very strongly to the somatostatin receptors 2 and 5 of the neuroendocrine tumor cells, it can more effectively detect very small tumors and metastases. This is very important for NET patients as from the initial onset of symptoms -- including gastrointestinal pain, flushing, diarrhea, and asthma-like wheezing -- the average time to proper diagnosis exceeds 5 years. It is likely that tumors will spread (metastasize) and grow during this time.
Electron Kebebew, MD (pictured), Chief of the Endocrine Oncology Branch at the Center for Cancer Research, National Cancer Institute and Head of the Cancer Genetics/Genomics Section, is the Principal Investigator for the NIH Gallium 68 trial and Samira Sadowski, MD, a Clinical Fellow, has spearheaded the 68Gallium DOTATATE protocol as the lead co-investigator.
According to Dr. Kebebew, “the possible benefits of Gallium-68 DOTATATE scanning are earlier diagnosis for symptomatic patients and the ability to tailor treatments for patients based on a more accurate assessment of tumor burden.” Dr. Sadowski notes that by “finding additional lesions or an unknown primary, physicians can manage patients based on what has been found.” Gallium-68 DOTATATE is particularly sensitive at locating small lymph node metastases, adds Dr. Sadowski. The GA-68 scan can detect tumors as small as 4 millimeters. This information can be used in targeting treatments for each patient.
The GA-68 scan may also provide additional information, says Dr. Sadowski, such as if a tumor is well or poorly differentiated. Poorly differentiated tumors are more aggressive and with the GA-68 scan the likelihood of a tumor’s growth may be determined. According to Dr. Kebebew, the GA-68 scan is also important for NET patients who have had surgery to remove metastases but have an unknown primary tumor. And for patients with known recurrence, he says, GA-68 DOTATATE may show much more than other scans. As NET cancer varies significantly from patient to patient the results of the GA-68 scan, along with other scans, medical history, blood work, and 5-HIAA urine test results, enable the medical team to offer each patient a personalized approach to treatment options.
The purpose of the trial is see how well the experimental imaging agent, 68Gallium-DOTATATE, detects an unknown primary NET and metastatic NETs in the gastrointestinal system and pancreas. Surgery is considered essential in the treatment of neuroendocrine tumors, when possible, and by finding NETs earlier, the success of surgically removing tumors is increased, both enhancing patients’ quality of life and length of life.
Adults over 18 years of age with a suspected NET, a NET identified by biopsy, or family history of NET (including MEN1 and Von Hippel Lindau) are eligible for the study. The goal is to enroll 100 participants and studies have already begun on 30. Participants in the trial will undergo 3 scans: a standard CT scan of the chest, abdomen, and pelvis; an octreotide scan; and a 68Gallium-DOTATATE PET/CT. For the Gallium scan the study drug is injected into a vein, usually the arm. Low-dose X-rays go through the body. For about 40 minutes a large, donut-shaped device takes images of the body. The entire session takes between an hour and a half and two hours.
Images from the three scans are compared. Patients also undergo a series of blood tests, specifically markers for neuroendocrine tumors such as chromogranin A, neuron-specific enolase, gastrin, and pancreatic polypeptide. The urinary 5-HIAA is also used to test serotonin levels. Upon completion of the nuclear imaging, blood work, and 5-HIAA test, physicians at the NIH in discussions with local treating physicians can usually recommend the best course of treatment for each participant. This treatment can be done at the NIH or at another facility of the patient’s choosing. Patients in the trial will have 1 follow-up visit at the NIH each year for a period of 5 years. This monitoring will include a medical exam, blood work, and a CT scan.
For further information about the trial, CLICK HERE.
Questions about the trial and eligibility can be directed to Candice M. Cottle-Delisle, RN, cottlec@mail.nih.gov, 301-402-4395 or Electron Kebebew, MD, kebebewe@mail.nih.gov, 301-496-5049.
Gallium-68 DOTATATE PET/CT: Two Patients’ Perspectives
Suzi Garber
Suzi Garber of Warminster in Bucks County, Pennsylvania is extremely grateful to have participated in the GA-68 DOTATATE PET/CT trial at the NIH – she doesn’t easily qualify for clinical trials because in addition to having carcinoid, she also has heart disease, diabetes, and has had endometrial cancer. She has been living with a NET diagnosis since 2006, having had surgery to remove her primary mid-gut tumor 7 years ago.
Although her pancreastatin and chromogranin A markers are on the rise, recent scans have shown 6 tumors in her liver. “Why,” asks Suzi, “does nothing else show on the scans when the numbers are going up?” The GA-68 scan confirmed what other scans have shown, only the 6 tumors in the liver. And this is critical information for Suzi and her medical team as she goes forward with treatment options.
Being at the NIH was also an eye-opening experience – “our tax-dollars at work.” First and foremost, Suzi recommends studying the map each trial participant is given. The buildings are large and can be confusing to a newcomer. As the Gallium-68 radiopharmaceutical has a short half-life it is imperative to arrive for the test on time! Suzi pointed out the extreme security procedures of entering a government facility – when driving, a person’s car and luggage will be screened.
She also noted “if you choose to stay in the hospital, only the participant can stay there. Your friend/relative will have to stay elsewhere. But you are not under obligation to stay there; you both can stay off-campus. It’s best to stay close due to the heavy volume of traffic. If you’ve got a GPS, use it. There are scads of construction spots in the area.”
Suzi advises trial participants to send copies (and she stresses copies, not originals) of everything in one’s health history to the NIH before the trial, including illnesses, surgeries (NET and non-NET, even dental surgeries), other NET treatments, and family history. “Let them know if you have a port, an artificial heart valve, or reconstruction anywhere in your body,” she says.
The state-of-the art PET/CT scanner, the willingness of the medical staff to spend time with each patient and answer all questions, a special center that uses an ultrasound wand to locate veins for patients who have a hard time with the placement of IVs, attention to the multilingual needs of patients, and the quality of the food at the NIH all were all part of a very positive experience for Suzi.
“I’m on Social Security and could not afford $5,000 or more for the care and scans I received at the NIH and will receive over the next 4 years.” And thanks to the trial she will continue to have high-quality medical care and follow-up for her NET disease over the next 4 years, all at no charge as part of the trial.
Lori Wolfe
For Lori Wolfe of Syracuse, New York, having the Gallium 68 scan is an opportunity to identify the site of her primary NET tumor which has not yet been found. Twenty years of extreme chronic diarrhea led Lori from doctor to doctor in search of answers about her health issues. She was tested for everything except carcinoid and diagnosed with irritable bowel syndrome. At age 50 she was told by a new gastroenterologist that she needed a colonoscopy and this doctor began to suspect carcinoid following additional blood work. Lori was started on Sandostatin LAR which has controlled her diarrhea sometimes but not always. Through the Western NY Carcinoid Support Group, Lori learned about the NIH clinical trial with the Gallium-68 scan.
“It was a trial getting into the trial,” says Lori. The records that she so carefully collected and sent were lost by FedEx. She was especially concerned about losing a spot in the trial due to the lost records. UPS proved to be the better provider for Lori! And a week before Christmas she got the long-hoped for call. Upon being told she qualified for the NIH trial and was accepted, Lori screamed into the phone, “This is the best Christmas present I could get!”
Lori has lots of practical advice for anyone who will be participating in the NIH clinical trial. She and her husband drove to Maryland and stayed in a hotel about ten minutes from the NIH. “Be sure to leave extra time when traveling to the NIH during rush hour,” suggests Lori. And be prepared when driving to have both your car and any luggage in the car go through the government security screening. This process can take half an hour or more depending upon the time of day.
For the scans, Lori advises participants to wear a comfy pair of sweatpants; pants with a zipper or other metal cannot be worn. Her guidance for women is to wear a sports bra as bras with metal clasps are also a no-no. And you might wish to leave jewelry at home as this cannot be worn during a scan.
For the 5HIAA urine test, Lori found that she needed both ice and something to put the ice in. She recommends bringing your own cooler bag (big enough for the jug!) and plastic baggies that can be filled with ice to keep the jug cool.
If participating as an outpatient, reimbursement for travel, hotels, etc. can either be sent to participants by check (but will take 2 months or more to arrive) or you can receive reimbursement at the end of your stay but this may possibly require additional hours waiting if you are done early in the day or midday.
Still awaiting the results of the Gallium-68 scan, Lori’s other test results have been inconclusive although an earlier MRI had shown a spot on the pancreas. Lori feels she has gained enormous benefits by being part of the trial, not only is she receiving cutting-edge scans at no cost she believes her participation in the trial will benefit other patients in the future from the knowledge gained by physicians and researchers conducting the trial.
If You Participate in the Trial: Some Tips and Things to Know
- It takes about 3 days to participate in the trial at the NIH including the CT scan, octreoscan, and Gallium scan as well as lab work for inpatients; 1 ½ days for outpatients
- If you live locally, the trial can be done over a longer period
- The Gallium-68 DOTATATE PET/CT scan is done first because it has the shortest half-life
- The octreoscan is done over a 24 hour period, with images taken at 4 hours and 24 hours
- Be sure to take your 5HIAA urine jug with you throughout the day during testing
- If you are an inpatient and bring medications to the trial, they will be taken and held for you and the NIH pharmacy will provide you with medications
- Most trial participants stay in area hotels, some participate on an in-patient basis (both for those with financial considerations and for those already at the NIH who have been recommended for the trial)
- Participants staying at hotels will be reimbursed up to $50.00 per night; a few local hotels offer special discounts
- Participants who drive to be part of the trial will be reimbursed at $.40 per mile
- Participants who fly to be part of the trial will be reimbursed at government rates
- Participants are reimbursed at $8.00 per day for meals
- After the initial participation in the trial, patients can book their travel through the NIH travel agency, Omega
- Participants are given maps of the NIH facility (take time to review these as being present at the time indicated for each component of the trial is essential)
- The NIH facility has Wi-Fi access
- There is a Hope Lodge in Baltimore, Maryland where trial participants can stay at no charge but arrangements must be made well in advance
- If traveling with children, inquire about staying at the Children’s Inn onsite
- If you feel up to exploring Bethesda during, before or after the trial, here are some links to area attractions and dining: Things to Do in Bethesda, http://www.downtownbethesda.com/ http://dc.about.com/od/touristattractions/tp/Things-To-Do-In-Bethesda-MD.htm, Things to Do with Kids in Bethesda, From Trip Advisor
- For further information about Patient Services when participating in a trial at the NIH, including parking, shuttle service, gift shops, pharmacy services, and more click here: http://clinicalcenter.nih.gov/participate/patientinfo/services.shtml
- Foods and medications to avoid before the 5HIAA urine test:
Tuesday, September 16, 2014
Article on the conference I'm going to tomorrow.
Charlotte conference on the cancer that killed Steve
Jobs
By Karen Garloch
Posted: Monday, Sep. 15, 2014
Karen Garloch writes on Health for The Charlotte Observer.
Her column appears each Tuesday.
E-mail
Karen Garloch
On Health blog
(704) 358-5078
On Health blog
(704) 358-5078
- NEUROENDOCRINE CANCER AWARENESS
NETWORK
Maryann and Bob Wahmann run the
Neuroendocrine Cancer Awareness Network, which holds its national conference in
Charlotte Thursday through Saturday.
Most people think Apple founder Steve Jobs died of pancreatic cancer.
But Maryann Wahmann wants everyone
to know that was wrong. He really died of neuroendocrine cancer of the
pancreas.
It makes a difference, she says,
because neuroendocrine cancer, although often misdiagnosed, has a much better
prognosis than pancreatic cancer.
“If treated properly, you can live a
long time,” said Wahmann, herself a patient who founded the Neuroendocrine
Cancer Awareness Network in 2003.
Wahmann’s group will hold its
national patient conference in Charlotte Thursday through Saturday at the
Marriott City Center Hotel. About 500 patients, caregivers and health care
professionals are expected. (To register, see netcancerawareness.org.)
Although considered rare,
neuroendocrine cancer is not as unusual as once thought, Wahmann said. More
than 11,000 new patients are diagnosed each year, and as many as 125,000
patients are living with the disease in the United States.
Wahman said she was ill for seven
years before she was diagnosed with a form of neuroendocrine cancer in 2001.
Before that, doctors mistakenly told her she had irritable bowel syndrome and
Crohn’s disease. It’s a common mistake because symptoms, such as diarrhea, are
similar.
Jobs often referred to his illness
as a “hormonal imbalance,” but multiple respected sources, such as WebMD and
Scientific American, give the more specific description – neuroendocrine cancer
of the pancreas.
“If Jobs had suffered from the most
common form of pancreatic cancer, adenocarcinoma, the chances are he would have
died soon after his 2003 diagnosis. But as Jobs later revealed, he had an
unusual form of pancreatic cancer known as a neuroendocrine tumor or islet cell
carcinoma.”
Most pancreatic cancer arises from
the pancreatic cells. But neuroendocrine tumors arise from the
hormone-producing islet cells that happen to be in the pancreas. Unlike
pancreatic cancer, from which patients often die within weeks or months after
diagnosis, neuroendocrine cancer is slow-growing and can be well controlled if
caught early.
Many doctors don’t understand the
disease, Wahmann said. In 2001, only 10 doctors in the world specialized in the
disease, she said. Now there are about 100, including Dr. David Iannitti in
Charlotte.
Wahmann and her husband, Bob, run
their organization, previously called Carcinoid Cancer Awareness Network, out
of their Long Island home, and answer the hotline, 866-850-9555. Their
daughter, Tricia, a student at Johnson & Wales University in Charlotte, is
vice president.
They chose the zebra for their logo.
“In medical school, doctors are taught, ‘When hearing hoof beats, think horses
not zebras,’ which means to look for the common, not the uncommon (when
diagnosing a patient). Being that a neuroendocrine tumor is rare, we’re thought
of as zebras.”
Wahmann said “a lot of patients are
very angry” that Jobs chose not to raise awareness about neuroendocrine cancer.
“Like Michael J. Fox with Parkinson’s disease … his name could have brought
light to it.”
But Wahmann said she understands why
some are reluctant to go public. “It’s not glamorous to say that I couldn’t
digest my food or I was in the bathroom having diarrhea and that’s why I’m
losing weight.”
Friday, September 5, 2014
Going to NET conference 9/18-22 in Charlotte
| National NET Cancer Patient Conference info and survey! |
Agenda
THURSDAY
3:00 - 3:30 Affordable Healthcare Reform: William Maples, MD
3:30 - 3:45 Q & A with Dr. William Maples.
3:45 - 4:15 Emotional implication of NETS treatment: Ronda Ayala RN
4:15 - 4:45 Be your own advocate and how to be an advocate for NETS Judy Goltz, RN
4:45- 5:00 Q & A
6-9PM Welcome Reception
FRIDAY AM
7:00-7:45 Breakfast
7:45-8:00 Introduction :Bob and Maryann Wahmann from CCAN
8:00-8:40 NETS-Introduction to the basics: Richard Warner, MD
8:40-9:20 NETS pathology: What's important and what's not?: Chanjuan Shi, MD
9:20-9:30Break
9:30-10:00 Midgut NETs surgery. The technical aspects:
10:00-10:30 Pancreatic NETs surgery. The technical aspects: Michael Choiti MD
10:30-11:00 Does serial cytoreduction of midgut NETS increase survival?: ugene A. Woltering MD
11:00-11:30 How NETS affects your heart: Current recommendations for on going scanning,
prevention and current therapy of NETS-induced heart disease: HeidiConnollyMD
11:30-12:15 Q & A with panel and moderator
12:15-1:15 Lunch
FRIDAY PM
1:15-2:00 Clinical trials for chemotherapy/biologic response modifier therapy of gut-based NETS:Edward Wolin,MD
2:00-2:45 Clinical trials for chemotherapy/biologic response modifier therapy of pancreatic NETS.:Emily Bergsland MD
2:45-3:00 Break
3:00-3:30 New approaches to the treatment of NETS induced diarrhea: Sajeve Thomas MD
3:30-4:00 Somatostatin analogs control symptoms and slow tumor growth: Summary of recent trials: Alexandria Phan MD
4:00-4:30 Update on NETs markers:What, how many and cross-laboratory validation studies: MiaTepper MBA
4:30-5:15 Q & A with panel and moderator
SATURDAY AM
7:00-8:00 Breakfast
8:00-8:45 The Benefit of Multidisciplinary Teams Treating NETs: Eric Liu, MD
8:45-9:15 The role of the gastroenterologist in the diagnosis & treatment of NETS: David MetzMD
9:15-9:45Summary of therapy with 177 Lu vs. high dose LAR: The AAA trial: Richard Campeau MD
9:45-10:00 Break
10:00-10:30 An update on Multi Visceral Organ Transplants (MVOT): Rodrigo Vianna M.D
10:30-11:00 My personal experience with MVOT:
11:00-12:00 Q &A with panel and moderator
12:00-1:00 Lunch
SATURDAYPM
1:00-1:30 Investigator-initiated trials of 68 Gallium somatostatin analogs:Where are we going?:Thomas M. O'Dorisio MD
1:30-2:00 Update on studies in the risk of familial NETS: Steve Wank MD
2:00-2:30 How to scan for NETs: Primary's and their metastasis: DavidBushnellMD
2:30-2:45 Break
2:45-3:15 Vitamin supplements & alternative therapies:How to assess safety & efficacy: Mary Hardy, MD
3:15-3:45 Spheres vs. Chemoembolization vs. Bland embolization- Which is best? :Charles Nutting MD
3:45-4:15 RFA, microwave,c ryotherapy, nanoknife and other invasive therapies for liver metastasis: David Iannitti MD
4:15-4:45 Q & A with panel and moderator
4:45-5:00 Announcement of next National Patient NET conferencein September2016:Eugene A. Woltering MD and CCAN
|
Thursday, August 28, 2014
Considering new scan instead of going to conference
The summer continues t be very busy with lots of little trips on the boat and around the region that have been fun and lots of babysitting of grandchildren. all good!
I may go to UCLA in a few months for a Galium 68 scan and skip the September conference on NET's. This scan has previously only been available in Europe but is now being offered in a clinical trial basis for about $2500 not counting travel and lodging. I'll post more details later. in the mean time some symptoms have increased causing me a bit of concern even though CT showed no growth. I may be doing a bit too much and not getting enough sleep and down time. Cutting back to 2 days per week babysitting instead of 3 starting late September. Going to SLC, Utah with 3 girlfriends to visit a fourth friend from my old Evergreen State College Days. The 4 of us will hike and camp in some of the national parks in Utah. I'll be among the arches and beautiful scenery.
Peter and I enjoyed our anniversary in Friday Harbor on the boat and stayed at the Friday Harbor House with a wonderful view and great food. We just got back from a few days in Victoria again on the boat with friends. This week end off to Blain on the boat to visit with my brother and see and stay at his new beach house. We'll be at Semiahmoo Marina a nice place we've visited before.
The grandchildren continue to be great joys! Kimani begins his pre-kindergarten readiness program for 4 year olds on Wednesday 9/3. Ayana is not only walking but running at 14 months and Paityn has begun pulling herself up to standing and walking around or pushing items in front of her - not quite walking yet at 10 months.
Life is very good and I'm enjoying every minute of it. Be well!
I may go to UCLA in a few months for a Galium 68 scan and skip the September conference on NET's. This scan has previously only been available in Europe but is now being offered in a clinical trial basis for about $2500 not counting travel and lodging. I'll post more details later. in the mean time some symptoms have increased causing me a bit of concern even though CT showed no growth. I may be doing a bit too much and not getting enough sleep and down time. Cutting back to 2 days per week babysitting instead of 3 starting late September. Going to SLC, Utah with 3 girlfriends to visit a fourth friend from my old Evergreen State College Days. The 4 of us will hike and camp in some of the national parks in Utah. I'll be among the arches and beautiful scenery.
Peter and I enjoyed our anniversary in Friday Harbor on the boat and stayed at the Friday Harbor House with a wonderful view and great food. We just got back from a few days in Victoria again on the boat with friends. This week end off to Blain on the boat to visit with my brother and see and stay at his new beach house. We'll be at Semiahmoo Marina a nice place we've visited before.
The grandchildren continue to be great joys! Kimani begins his pre-kindergarten readiness program for 4 year olds on Wednesday 9/3. Ayana is not only walking but running at 14 months and Paityn has begun pulling herself up to standing and walking around or pushing items in front of her - not quite walking yet at 10 months.
Life is very good and I'm enjoying every minute of it. Be well!
Wednesday, August 6, 2014
New CT Scan looks good
CT SCAN chest, abdomen and pelvis - Details
Narrative
[HST]: Carcinoid
[SAS]: f/u of lung and liver metastases
CT of the chest abdomen and pelvis
Hx: Carcinoid
IV contrast material was given, 125 cc of optiray 320(low osmolar IV
contrast material).
Neutral density oral contrast was also given.
iso Voxel reconstructed images in three planes
In the lungs it is difficult to demonstrate the few previously
described tiny noncalcified lung nodules. Lymph node anterior to the
left axillary vessels described previously again demonstrated
appearing most similar to exam from 10/2013, about 7 mm in transverse
diameter. AP diameter varies from exam to exam based on this calipers.
Hyperenhancing liver masses are much more conspicuous now than on
several previous exams probably due to more optimal timing of the
bolus for demonstrating these. They measure on the order of up to 3
cm in diameter. Difficult to assess for changes because of the very
faint appearance previously compared to today's exam.
Postsurgical changes in the upper abdomen are again demonstrated.
A a mass in the posterior lateral superior left gluteal soft tissues
is less prominent than on 2/2014 exam. There is another in the
posterior superior right gluteal subcutaneous tissues that is now
larger and contains some gas. Is the patient getting injections? It
measures about 2.5 cm in diameter.
This is from my monthly injections.
Very similar appearance to the osteoblastic bone lesions described
previously.
[SAS]: f/u of lung and liver metastases
CT of the chest abdomen and pelvis
Hx: Carcinoid
IV contrast material was given, 125 cc of optiray 320(low osmolar IV
contrast material).
Neutral density oral contrast was also given.
iso Voxel reconstructed images in three planes
In the lungs it is difficult to demonstrate the few previously
described tiny noncalcified lung nodules. Lymph node anterior to the
left axillary vessels described previously again demonstrated
appearing most similar to exam from 10/2013, about 7 mm in transverse
diameter. AP diameter varies from exam to exam based on this calipers.
Hyperenhancing liver masses are much more conspicuous now than on
several previous exams probably due to more optimal timing of the
bolus for demonstrating these. They measure on the order of up to 3
cm in diameter. Difficult to assess for changes because of the very
faint appearance previously compared to today's exam.
Postsurgical changes in the upper abdomen are again demonstrated.
A a mass in the posterior lateral superior left gluteal soft tissues
is less prominent than on 2/2014 exam. There is another in the
posterior superior right gluteal subcutaneous tissues that is now
larger and contains some gas. Is the patient getting injections? It
measures about 2.5 cm in diameter.
This is from my monthly injections.
Very similar appearance to the osteoblastic bone lesions described
previously.
Impression
IMPRESSION:
1.Very little change in appearance of the CT scan since 2/2014.
Hypervascular liver lesions are much more conspicuous now but
primarily due to more optimal timing of the injection bolus.
______________________________________
This is very good news!!!
Electronically signed by:JOSEPH G DUFFY, MD
Date: 08/06/2014
Time:09:41
1.Very little change in appearance of the CT scan since 2/2014.
Hypervascular liver lesions are much more conspicuous now but
primarily due to more optimal timing of the injection bolus.
______________________________________
This is very good news!!!
Electronically signed by:JOSEPH G DUFFY, MD
Date: 08/06/2014
Time:09:41
Component Results
There is no component information for this result.
General Information
Collected:08/06/2014 9:00 AM
Resulted:08/06/2014 9:41 AM
Ordered By:Eric Martin Feldman, MD
Result Status:Final result
Resulted:08/06/2014 9:41 AM
Ordered By:Eric Martin Feldman, MD
Result Status:Final result
Wednesday, July 16, 2014
Resilient
From my July: A Fearless Woman calendar:
She weaves a web of resilience
Resilient - from the Latin resile: to bounce back
From countless tests and tumbles
she crafts a net of tenacity and fortitude.
With a glowing confidence she bounces back
to take the risks and rise again.
Week 3 of my very disciplined diet of no sugar or refined carbs is moving along. This whole foods diet using dairy only as a condiment and eating almost no sugar or carbs is the "rest of my life" diet. Organic vegetables, fruit, beans, quinoa, lean organic meat and wild fresh Alaskan fish. I've had a little steel cut oats with raisins and cinnamon and some smoothies made with full fat Greek yogurt and berries. I am drinking lots of green tea and have a cup of coffee every morning with coconut milk and stevia in it. What a treat! I've lost 8 pounds and would like to loose about 20 more. I think it will happen slowly and surely as I'm walking the loop (2.5 miles) and swimming 30-50 lengths of the pool (one or the other daily and sometimes both in one day) and I'm doing Pilates 2 times per week (I would do more but it is so expensive). I start Aqua Zumba this Saturday. My blood sugar numbers are down some with this diet, activity and having started the diabetes medication. I've been feeling better!!!
I'm looking forward to going to see Henry Kapono this evening at the Triple door with my sister in law Jackie, seeing my parents here in Seattle tomorrow, helping my son prepare for an art show he is doing and Sunday taking my grandson to Snohomish for a train ride on Thomas the train. Peter leaves on Monday for a big fishing trip in Canada with 2 of his buddies. I gave him the trip as a gift on our 10th anniversary last year. Life is good!
She weaves a web of resilience
Resilient - from the Latin resile: to bounce back
From countless tests and tumbles
she crafts a net of tenacity and fortitude.
With a glowing confidence she bounces back
to take the risks and rise again.
Week 3 of my very disciplined diet of no sugar or refined carbs is moving along. This whole foods diet using dairy only as a condiment and eating almost no sugar or carbs is the "rest of my life" diet. Organic vegetables, fruit, beans, quinoa, lean organic meat and wild fresh Alaskan fish. I've had a little steel cut oats with raisins and cinnamon and some smoothies made with full fat Greek yogurt and berries. I am drinking lots of green tea and have a cup of coffee every morning with coconut milk and stevia in it. What a treat! I've lost 8 pounds and would like to loose about 20 more. I think it will happen slowly and surely as I'm walking the loop (2.5 miles) and swimming 30-50 lengths of the pool (one or the other daily and sometimes both in one day) and I'm doing Pilates 2 times per week (I would do more but it is so expensive). I start Aqua Zumba this Saturday. My blood sugar numbers are down some with this diet, activity and having started the diabetes medication. I've been feeling better!!!
I'm looking forward to going to see Henry Kapono this evening at the Triple door with my sister in law Jackie, seeing my parents here in Seattle tomorrow, helping my son prepare for an art show he is doing and Sunday taking my grandson to Snohomish for a train ride on Thomas the train. Peter leaves on Monday for a big fishing trip in Canada with 2 of his buddies. I gave him the trip as a gift on our 10th anniversary last year. Life is good!
Monday, July 7, 2014
The Good the Bad and the Ugly
The good news is I'm still here and realize more and more that I can make the choice to feel good. Sometimes it is mind over matter or recognizing that this might be my new normal and I can choose to be happy when I don't feel as good as I used to. Sometimes I feel like complaining and describing repeatedly in great detail exactly what is ailing me at that moment and through out the day but in reality that doesn't really make me feel better. Not that I'm being a Pollyanna all the time or in denial about my discomfort but just as with children, distraction and changing the subject can work well.
I can begin the day by reminding myself that Life supports me and wants me to be fulfilled and happy. Eating right and exercising are good choices I can make that help me feel better. Basically Love is all there is and all I really need to focus on; so a smile from one of my 3 beautiful grandchildren can go a long way toward feeling good if I let it. I try to let in and remember all the love and good I have in my life. Sometimes when I'm working in my garden I bask in the glow of Life's love, which shines on me like the summer sun. It feels as though the whole world and everyone in it loves me. It may have taken me a long while to understand this, but now I feel it in every fiber of my being at times. All my relationships are at peace and I truly have all that I really need. This is a good time to think about how I want to be remembered. I hope to be remembered as kind and smiling much of the time among other things.
The bad news is that the canoe journey that I did for almost 20 years is currently underway without me. This is my second year to miss it due to the cancer management. Last year I had been in surgery a week before it started and this year with some of the new challenges I'm facing with type 2 diabetes, high blood pressure and intestinal discomfort I decided not to go. I believe I will be able to go next year and that it was best for me to still take care of myself now with a steady schedule of taking medications (2 new ones), eating right, sleeping well and moving my body in a way that gets me back in shape. All this isn't always possible when paddling 30-40 miles in the open ocean and then camping along the way for at least a week to 10 days. I was almost ready to go and it was a hard decision to remain here and not help my Raven Canoe family members on this years journey to Bella Bella on the BC coast. I trust I made the right decision for myself and the others in the canoe who might not have been able to get me to shore in time to go to the bathroom. :-) Limitations are merely opportunities to grow. I use them as stepping stones to success what ever that might be now in my life. Rather than bemoan my loss of the canoe journey experience this year I remember that my happy thoughts help create my healthy body and that there are endless possibilities to focus on when something I think I wanted doesn't appear or develop. I am safe in this world and make safe choices for my health. I am comfortable with change and growth.
The ugly is that I'm now taking more different medications and supplements. I've gone to one of those daily organizational pill holders because there were too many bottles on the bathroom counter (ugly). :-) I just started metformin for the diabetes that developed because my pancreas is compromised. I also started a small half a pill to keep water weight down and for the edema in my feet. I take a small dose of high blood pressure medication, a thyroid pill, iron, a pro-biotic and vitamin C, D3, magnesium, calcium and Turkey tail mushroom capsules for immune support.
My recent labs resulted and I have some questions for Dr, Chad, Naturopathic Doctor (ND) and oncologist when I see him 7/17. I'm not sure why my Hemoglobin A1C is in the high range, ALK Phos is high and CRP Cardiac (the most concerning) is high sensitive at 5.3 (normal is 0-3). My next appointment with Group Health Oncologist Dr. Feldman is August 7th. This will be to evaluate the results of the August 4th labs and August 6th CT scan.
Dr. Chad recommended a new oncologist, Dr. Pillarisetty at SCCA. He is a specialist on the pancreas (various cancer and illnesses) and liver metastases. I am in the process of getting a referral from Group Health to have a second opinion consult with him. My SCCA oncologist Dr. Back also thought it was a good idea for me to discuss my case with him to see what else we might be able to do moving forward. We want to prolong life of course and also keep working on quality of life, meaning how I'm feeling.
I found a new book, ordered it in the mail and read most it this week end on management of diabetes with diet instead of drugs. Even though I began the medication I am hopeful that I will get my blood sugars down to the point where I will not longer need to take it. In the book is a proven (lots of data) step by step plan to reverse type 2 diabetes naturally. As with so much else that I've read and implemented in addition to diet and exercise stress reduction is key. I continue to work on having a "good attitude" and a sense of humor. :-)
I'll end with more quotes related to my health journey that appear in the new book.
"Denial ain't just a river in Egypt". Mark Twain
"Perhaps everything terrible is in its being something that needs our love". Rainer Maria Rilke
"I've learned that nothing is impossible; and almost nothing is easy". Anonymous
"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending". Carl Bard
"looking back, we see with great clarity, and what once appeared as difficulties, now reveal themselves as blessings". Dan Millman
"The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in diet, and in the cause and prevention of disease". Thomas Edison 1847-1931
Happy Summer!!!!
I can begin the day by reminding myself that Life supports me and wants me to be fulfilled and happy. Eating right and exercising are good choices I can make that help me feel better. Basically Love is all there is and all I really need to focus on; so a smile from one of my 3 beautiful grandchildren can go a long way toward feeling good if I let it. I try to let in and remember all the love and good I have in my life. Sometimes when I'm working in my garden I bask in the glow of Life's love, which shines on me like the summer sun. It feels as though the whole world and everyone in it loves me. It may have taken me a long while to understand this, but now I feel it in every fiber of my being at times. All my relationships are at peace and I truly have all that I really need. This is a good time to think about how I want to be remembered. I hope to be remembered as kind and smiling much of the time among other things.
The bad news is that the canoe journey that I did for almost 20 years is currently underway without me. This is my second year to miss it due to the cancer management. Last year I had been in surgery a week before it started and this year with some of the new challenges I'm facing with type 2 diabetes, high blood pressure and intestinal discomfort I decided not to go. I believe I will be able to go next year and that it was best for me to still take care of myself now with a steady schedule of taking medications (2 new ones), eating right, sleeping well and moving my body in a way that gets me back in shape. All this isn't always possible when paddling 30-40 miles in the open ocean and then camping along the way for at least a week to 10 days. I was almost ready to go and it was a hard decision to remain here and not help my Raven Canoe family members on this years journey to Bella Bella on the BC coast. I trust I made the right decision for myself and the others in the canoe who might not have been able to get me to shore in time to go to the bathroom. :-) Limitations are merely opportunities to grow. I use them as stepping stones to success what ever that might be now in my life. Rather than bemoan my loss of the canoe journey experience this year I remember that my happy thoughts help create my healthy body and that there are endless possibilities to focus on when something I think I wanted doesn't appear or develop. I am safe in this world and make safe choices for my health. I am comfortable with change and growth.
The ugly is that I'm now taking more different medications and supplements. I've gone to one of those daily organizational pill holders because there were too many bottles on the bathroom counter (ugly). :-) I just started metformin for the diabetes that developed because my pancreas is compromised. I also started a small half a pill to keep water weight down and for the edema in my feet. I take a small dose of high blood pressure medication, a thyroid pill, iron, a pro-biotic and vitamin C, D3, magnesium, calcium and Turkey tail mushroom capsules for immune support.
My recent labs resulted and I have some questions for Dr, Chad, Naturopathic Doctor (ND) and oncologist when I see him 7/17. I'm not sure why my Hemoglobin A1C is in the high range, ALK Phos is high and CRP Cardiac (the most concerning) is high sensitive at 5.3 (normal is 0-3). My next appointment with Group Health Oncologist Dr. Feldman is August 7th. This will be to evaluate the results of the August 4th labs and August 6th CT scan.
Dr. Chad recommended a new oncologist, Dr. Pillarisetty at SCCA. He is a specialist on the pancreas (various cancer and illnesses) and liver metastases. I am in the process of getting a referral from Group Health to have a second opinion consult with him. My SCCA oncologist Dr. Back also thought it was a good idea for me to discuss my case with him to see what else we might be able to do moving forward. We want to prolong life of course and also keep working on quality of life, meaning how I'm feeling.
I found a new book, ordered it in the mail and read most it this week end on management of diabetes with diet instead of drugs. Even though I began the medication I am hopeful that I will get my blood sugars down to the point where I will not longer need to take it. In the book is a proven (lots of data) step by step plan to reverse type 2 diabetes naturally. As with so much else that I've read and implemented in addition to diet and exercise stress reduction is key. I continue to work on having a "good attitude" and a sense of humor. :-)
I'll end with more quotes related to my health journey that appear in the new book.
"Denial ain't just a river in Egypt". Mark Twain
"Perhaps everything terrible is in its being something that needs our love". Rainer Maria Rilke
"I've learned that nothing is impossible; and almost nothing is easy". Anonymous
"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending". Carl Bard
"looking back, we see with great clarity, and what once appeared as difficulties, now reveal themselves as blessings". Dan Millman
"The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in diet, and in the cause and prevention of disease". Thomas Edison 1847-1931
Happy Summer!!!!
Friday, June 27, 2014
2014 National NET Patient Conference
When
Thursday September 18, 2014 - 3:00 PM
-to-
Saturday September 20, 2014- 5:30 PM
A Special Lungnoid Session-to-
Saturday September 20, 2014- 5:30 PM
Sunday Sept 21, 2014 - 8 AM to 12PM
Add to Calendar
Where
Charlotte Marriott City Center, Charlotte, NC100 West Trade Street
Charlotte, NC 28202
Hotel rooms $139 a night.
Reservations for the Event will be made by individual attendees directly with Marriott reservations at (800) 228-9290 or (704) 333-9000 or click link
This is in addition to your conference registration fee. Do not forget to register for the conference!
Driving Directions
Driving Directions
A Special Thanks to our Sponsors!
Platinum SponsorsInter Science Insititute
Gold Sponsors
Novartis Oncology
Ipsen Pharmaceutical
Lexicon Pharmaceuticals
Pfizer Oncology
Sliver Sponsors
Ochsner Medical Center- Kenner
LSU
Mallinckrodt
Enhanced Exhibitor
University of Kentucky
NET Alliance
Contact us if you need a special dietary restrictions. There will be Vegetarian meals available. Please call the office! 866 850 9555
2014 National NET Patient Conference
The 2014 National Carcinoid/NET Patient Conference is right around the corner! Mid-gut noids, Lungnoids, P-Net patients, Whipple patients and OTHER NET PATIENTS- get ready for another fantastic lineup featuring 20 or so WORLD CLASS NET EXPERTS presenting the information you need!
Some of the topics are brand-new and just published, sprinkled in with advice from the EXPERTS on the top issues faced by NET patients. Topics that will be covered welcome an audience of all levels, including patients, family members and caretakers of patients, as well as physicians and other health professionals.
Plus, you'll get to network with hundreds of other patients who understand what you are going through and share your concerns.
This is a perfect opportunity to build your knowledge and become a better advocate for your health!
$125 per person from 5/1 through 8/31.
$150 pp for late registration- 9/1 and later.
Please note there will be a cancellation fee of $25 pp!
Some of the topics are brand-new and just published, sprinkled in with advice from the EXPERTS on the top issues faced by NET patients. Topics that will be covered welcome an audience of all levels, including patients, family members and caretakers of patients, as well as physicians and other health professionals.
Plus, you'll get to network with hundreds of other patients who understand what you are going through and share your concerns.
This is a perfect opportunity to build your knowledge and become a better advocate for your health!
$125 per person from 5/1 through 8/31.
$150 pp for late registration- 9/1 and later.
Please note there will be a cancellation fee of $25 pp!
Tentative agenda: Times and titles are subject to change. The physicians listed have committed to making presentations.
3-5 PM Emotional implication of NETS treatment: Ronda Ayala, RN
FRIDAY AM Moderator: Eugene A. Woltering, MD
8:00-8:45 NETS— Introduction to the basics: Richard Warner, MD - Mount Sinai Hospital NY,NY
8:45-9:30 NETS pathology: What’s important and what’s not? : Chanjuan Shi, MD Vanderbilt University Medical Center , Nashville, TN
9:30-9:45 Break
9:45-10:15 Midgut NETs surgery. The technical aspects: Yi-Zarn Wang MD - LSUHSC New Orleans,LA
10:15-10:40 Pancreatic NETs surgery. The technical aspects: Michael Choiti MD - UT Southwestern Dallas,TX
10:40-11:00 Does serial cytoreduction of midgut NETS increase survival? : Eugene A. Woltering MD - LSUHSC New Orleans,LA - Oschner Medical Kenner
11:00-11:20 How NETS affects your heart: Current recommendations for ongoing scanning, prevention and current therapy of NETS-induced heart disease: Heidi Connolly MD Mayo Clinic Rochester, MN
11:20-12:00 Q & A with panel and moderator
12:15-1:15 Lunch
FRIDAY PM Moderator: Thomas M. O’Dorisio MD
1:15-2:00 Clinical trials for chemotherapy/biologic response modifier therapy of gut- based NETS: Edward Wolin, MD - Cedars -Sinai Medical Center, LosAngeles, CA
2:00-2:45 Clinical trials for chemotherapy/biologic response modifier therapy of pancreatic NETS.: Emily Bergsland MD - University of California , San Fransico , CA
2:45-3:00 Break
3:00-3:45 New approaches to the treatment of NETS induced diarrhea: Sajeve Thomas MD - MD Anderson Cancer Center Orlando, FL
4:45- 5:30 Q & A with above panel and moderator
SATURDAY AM Moderator: Dr. J. Philip Broudreaux
7:00-8:00 Breakfast
8:00-8:35 The Benefit of Multidisciplinary Teams Treating NETs: Eric Liu MD- Vanderbilt University Medical Center , Nashville, TN
8:35-9:10 The role of the gastroenterologist in the diagnosis and treatment of NETS: David Metz MD - Perelman Center for Advanced Medicine Philadelphia, PA
9:10-9:45 Summary of therapy with 177 Lu vs. high dose LAR: The AAA trial: Richard Campeau- MDLSUHSC New Orleans,LA
9:45-10:00 Break
10:00-10:35 An update on Multi Visceral Organ Transplants (MVOT): Rodrigo Vianna M.D- University of Miami , FL
10:35-11:00 My personal experience with MVOT: Paul Johnson MD
11:00-12:00 Q & A with all panel members and moderator
12:15-1:15 Lunch
SATURDAY PM Moderator: Richard Warner MD
1:15-2:00 Investigator-initiated trials of 68 Gallium somatostatin analogs: Where are we going?: Thomas M. O’Dorisio MD - University of Iowa
2:00-2:45 Update on studies in MEN I and the risk of familial NETS: Steve Wank MD - NIH
2:45-3:00 Break
3:00-3:20 How to scan for NETs: Primary’s and their metastasi: David Bushnell MD- University of Iowa
3:20-3:40 Vitamin supplements & alternativetherapies: How to assess safety & efficacy: Mary Hardy, MD
3:40-4:25 Spheres vs. Chemoembolization vs. Bland embolization- Which is best? : Charles Nutting MD - Radiology Imaging Associates Englewood, CO
4:25-5:15 Q & A with all panel members and moderator
5:15 Announcement of next National Patient NET conference in September 2016: Eugene A. Woltering MD and CCAN
SPECIAL CONFERENCE ON LUNGNOIDS AND DIPNECH
Sunday September 21st, 2014
SUNDAY AM Eric Liu MD Moderator
8:00-8:30 How we find lung NETS and their metastasis: Eric Liu MD - Vanderbilt University Medical Center , Nashville, TN
8:30-9:00 Bronchoscopy, percutaneous and trans-bronchial biopsies for lung lesions: Susan Gunn, MD - Oschner Medical Center, Kenner, LA
9:00-9:30 Surgical approaches to DIPNECH, primary NETS and their metastasis: Rodney Landreneau MD- Oschner Medical Center, Kenner, LA
9:30-9:45 Break
9:45-10:30 Role of chemotherapy, biologic response modifiers and PRRT in the therapy of lung NETS: Dan Granberg MD. PhD - Uppsala University Hospital Sweden
10:30-11:30 Questions and Answers: All speakers and moderator
2014 NETS PATIENT CONFERENCE CHARLOTTE, NORTH CAROLINA
Thursday, September 18th – Saturday 20th
THURSDAY AFTERNOON3-5 PM Emotional implication of NETS treatment: Ronda Ayala, RN
THURSDAY EVENING
6-9 PM Reception FRIDAY AM Moderator: Eugene A. Woltering, MD
7:00-7:45 Breakfast
7:45-8:00 Introduction: Bob and Maryann Wahmann - CCAN8:00-8:45 NETS— Introduction to the basics: Richard Warner, MD - Mount Sinai Hospital NY,NY
8:45-9:30 NETS pathology: What’s important and what’s not? : Chanjuan Shi, MD Vanderbilt University Medical Center , Nashville, TN
9:30-9:45 Break
9:45-10:15 Midgut NETs surgery. The technical aspects: Yi-Zarn Wang MD - LSUHSC New Orleans,LA
10:15-10:40 Pancreatic NETs surgery. The technical aspects: Michael Choiti MD - UT Southwestern Dallas,TX
10:40-11:00 Does serial cytoreduction of midgut NETS increase survival? : Eugene A. Woltering MD - LSUHSC New Orleans,LA - Oschner Medical Kenner
11:00-11:20 How NETS affects your heart: Current recommendations for ongoing scanning, prevention and current therapy of NETS-induced heart disease: Heidi Connolly MD Mayo Clinic Rochester, MN
11:20-12:00 Q & A with panel and moderator
12:15-1:15 Lunch
FRIDAY PM Moderator: Thomas M. O’Dorisio MD
1:15-2:00 Clinical trials for chemotherapy/biologic response modifier therapy of gut- based NETS: Edward Wolin, MD - Cedars -Sinai Medical Center, LosAngeles, CA
2:00-2:45 Clinical trials for chemotherapy/biologic response modifier therapy of pancreatic NETS.: Emily Bergsland MD - University of California , San Fransico , CA
2:45-3:00 Break
3:00-3:45 New approaches to the treatment of NETS induced diarrhea: Sajeve Thomas MD - MD Anderson Cancer Center Orlando, FL
3:45-4:15 Somatostatin analogs control symptoms and slow
tumor growth: Summary of recent trials: Alexandria Phan MD
tumor growth: Summary of recent trials: Alexandria Phan MD
4:45- 5:30 Q & A with above panel and moderator
SATURDAY AM Moderator: Dr. J. Philip Broudreaux
7:00-8:00 Breakfast
8:00-8:35 The Benefit of Multidisciplinary Teams Treating NETs: Eric Liu MD- Vanderbilt University Medical Center , Nashville, TN
8:35-9:10 The role of the gastroenterologist in the diagnosis and treatment of NETS: David Metz MD - Perelman Center for Advanced Medicine Philadelphia, PA
9:10-9:45 Summary of therapy with 177 Lu vs. high dose LAR: The AAA trial: Richard Campeau- MDLSUHSC New Orleans,LA
9:45-10:00 Break
10:00-10:35 An update on Multi Visceral Organ Transplants (MVOT): Rodrigo Vianna M.D- University of Miami , FL
10:35-11:00 My personal experience with MVOT: Paul Johnson MD
12:15-1:15 Lunch
SATURDAY PM Moderator: Richard Warner MD
1:15-2:00 Investigator-initiated trials of 68 Gallium somatostatin analogs: Where are we going?: Thomas M. O’Dorisio MD - University of Iowa
2:00-2:45 Update on studies in MEN I and the risk of familial NETS: Steve Wank MD - NIH
2:45-3:00 Break
3:00-3:20 How to scan for NETs: Primary’s and their metastasi: David Bushnell MD- University of Iowa
3:20-3:40 Vitamin supplements & alternativetherapies: How to assess safety & efficacy: Mary Hardy, MD
3:40-4:25 Spheres vs. Chemoembolization vs. Bland embolization- Which is best? : Charles Nutting MD - Radiology Imaging Associates Englewood, CO
4:25-5:15 Q & A with all panel members and moderator
5:15 Announcement of next National Patient NET conference in September 2016: Eugene A. Woltering MD and CCAN
SPECIAL CONFERENCE ON LUNGNOIDS AND DIPNECH
Sunday September 21st, 2014
SUNDAY AM Eric Liu MD Moderator
8:00-8:30 How we find lung NETS and their metastasis: Eric Liu MD - Vanderbilt University Medical Center , Nashville, TN
8:30-9:00 Bronchoscopy, percutaneous and trans-bronchial biopsies for lung lesions: Susan Gunn, MD - Oschner Medical Center, Kenner, LA
9:00-9:30 Surgical approaches to DIPNECH, primary NETS and their metastasis: Rodney Landreneau MD- Oschner Medical Center, Kenner, LA
9:30-9:45 Break
9:45-10:30 Role of chemotherapy, biologic response modifiers and PRRT in the therapy of lung NETS: Dan Granberg MD. PhD - Uppsala University Hospital Sweden
10:30-11:30 Questions and Answers: All speakers and moderator
Wednesday, June 25, 2014
Bastyr trained Naturopath appointment
My busy, full and blessed life continues to include fun adventures, family, grandchildren and the management of my health. I've written frequently about the challenges regarding my diet now that I am missing my spleen and gall bladder, my pancreas is still on the mend and my liver has grown back. The list of symptoms I'm reporting is lengthy and complicated. They are: frequent thirst and urination, high blood sugar levels, edema in feet and ankles, bloating and weight gain, fatigue, abdominal pain and diarrhea, head aches and burning, itching, watery eyes. My eye sight has also declined substantially. Prior to the pancreas surgery I was advised that I would probably develop diabetes at some point due to the pancreas damage. I will be seeing Dr. Shaul my primary care physician about diagnosing and getting medication for diabetes if I do indeed have it. My joint pain could be normal ageing and I could have developed allergies causing some cold like symptoms and eye disturbance. It is unnerving not to know when something is related to the cancer as opposed to normal aging or other medical conditions or concerns. My mom had hip pain by my age and went on to have 3 hip replacements. It is likely I need glasses beyond the readers I now use and may have eye strain.
All in all I am managing well. I try to eat mostly organic lean protein and fruits and vegies. I try to drink water all day. I seriously limit my sugar and carbs. I have been walking and swimming daily (thus the concern about weight gain). I should be loosing weight and Peter can attest to the fact that I eat very small portions and have been extremely disciplined.
Two recent trips one a boat trip to Princess Louisa in BC on our 22 foot power boat with friends and one a family reunion in CA for Peter's mom's side of the family were fun. Both took there toll however and because they were back to back I ended up really exhausted by the time we returned. I'm still having grandchildren over to watch Mon-Wed so it took me a few days to catch up on sleep. I'm feeling pretty good today and did a couple hours of yard work and will now go swim laps while my wonderful friend Louise watches Paityn for me. Her assistance again makes it possible for me to help my children out with childcare in this way. I truly adore and love my 3 little darlings. They bring me a great deal of joy and laughter. It is well worth the tiredness at the end of the day.
Due to my intestinal challenges and tiredness I have had to decide not to participate in the annual Native American canoe journey that I love so much. This will be my second year to miss going. I hope to be able to rejoin next summer. We'll see how things go. It has been one year since the liver surgery and only 7 months since the pancreas surgery. I've been told it takes over a year to fully recover. I'm thrilled that the cancerous tumors seem to be staying tiny and not causing any problems with my health. As I fully recover and learn more about how to take care of my digestion and balance exercise with fatigue I expect to feel even better.
I've got lots of fun things coming up over the rest of the summer. A trip to the ocean with my parents, to Vancouver by boat with Peter, to Utah to visit a girl friend with old Evergreen college friends, to the ocean again for our wedding anniversary, to Mason Lake near Shelton to visit my cousins and in September a conference on Neuroendocrine Tumors for patients in North Carolina.
Tomorrow is my monthly Octreotide shot at Group Health which appears to be keeping the symptoms of the tumors at bay as well as keeping them from growing. Also tomorrow I'll see,
Dr. Chad Aschtgen ND (Naturopathic Doctor), American Board of Naturopathic Oncology (FABNO) at the Institute of Complementary Medicine (IC Medicine.com) Integrative Health Clinic located near me in Seattle. I'm excited to see him for the first time and see what ideas he might have for diet and supplements to help me. I feel like I'm doing so much and taking so many supplements all ready but I may not be doing the best thing given my circumstances.
As I said above on Monday 6/30 I'll see Dr. Shaul about the diabetes question too. I've been getting massages, using my sauna and remaining relatively stress free. I'm having a birthday party for my son at our house this Saturday. I enjoy being with his family and friends. I love being grandma to his wonderful children. We've got lots of other family birthdays in July and August with my dads 80th - a big one. We recently updated our deck for BBQ's and look forward to showing it off along with our colorful yard that I've been working in. Life is good!
I am thankful for every day and every relationship. I see love and good things everywhere I look. Thank you for reading my blog and for all the prayers always coming my way. You know they are helping me stay healthy.
All in all I am managing well. I try to eat mostly organic lean protein and fruits and vegies. I try to drink water all day. I seriously limit my sugar and carbs. I have been walking and swimming daily (thus the concern about weight gain). I should be loosing weight and Peter can attest to the fact that I eat very small portions and have been extremely disciplined.
Two recent trips one a boat trip to Princess Louisa in BC on our 22 foot power boat with friends and one a family reunion in CA for Peter's mom's side of the family were fun. Both took there toll however and because they were back to back I ended up really exhausted by the time we returned. I'm still having grandchildren over to watch Mon-Wed so it took me a few days to catch up on sleep. I'm feeling pretty good today and did a couple hours of yard work and will now go swim laps while my wonderful friend Louise watches Paityn for me. Her assistance again makes it possible for me to help my children out with childcare in this way. I truly adore and love my 3 little darlings. They bring me a great deal of joy and laughter. It is well worth the tiredness at the end of the day.
Due to my intestinal challenges and tiredness I have had to decide not to participate in the annual Native American canoe journey that I love so much. This will be my second year to miss going. I hope to be able to rejoin next summer. We'll see how things go. It has been one year since the liver surgery and only 7 months since the pancreas surgery. I've been told it takes over a year to fully recover. I'm thrilled that the cancerous tumors seem to be staying tiny and not causing any problems with my health. As I fully recover and learn more about how to take care of my digestion and balance exercise with fatigue I expect to feel even better.
I've got lots of fun things coming up over the rest of the summer. A trip to the ocean with my parents, to Vancouver by boat with Peter, to Utah to visit a girl friend with old Evergreen college friends, to the ocean again for our wedding anniversary, to Mason Lake near Shelton to visit my cousins and in September a conference on Neuroendocrine Tumors for patients in North Carolina.
Tomorrow is my monthly Octreotide shot at Group Health which appears to be keeping the symptoms of the tumors at bay as well as keeping them from growing. Also tomorrow I'll see,
Dr. Chad Aschtgen ND (Naturopathic Doctor), American Board of Naturopathic Oncology (FABNO) at the Institute of Complementary Medicine (IC Medicine.com) Integrative Health Clinic located near me in Seattle. I'm excited to see him for the first time and see what ideas he might have for diet and supplements to help me. I feel like I'm doing so much and taking so many supplements all ready but I may not be doing the best thing given my circumstances.
As I said above on Monday 6/30 I'll see Dr. Shaul about the diabetes question too. I've been getting massages, using my sauna and remaining relatively stress free. I'm having a birthday party for my son at our house this Saturday. I enjoy being with his family and friends. I love being grandma to his wonderful children. We've got lots of other family birthdays in July and August with my dads 80th - a big one. We recently updated our deck for BBQ's and look forward to showing it off along with our colorful yard that I've been working in. Life is good!
I am thankful for every day and every relationship. I see love and good things everywhere I look. Thank you for reading my blog and for all the prayers always coming my way. You know they are helping me stay healthy.
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