2014 National NET Patient Conference

                                                     

Contact

Maryann Wahmann 
CCAN                      2014netconf@optonline.net                     or call 866 850 9555

 

When

Thursday September 18, 2014 - 3:00 PM
-to-
Saturday September 20, 2014-  5:30 PM

A Special Lungnoid Session
 Sunday Sept 21, 2014 - 8 AM to 12PM 
Add to Calendar 

Where

Charlotte Marriott City Center, Charlotte, NC 
100 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

 Book your group rate: 2014 National NET Cancer Patient Conference >>

This is in addition to your conference registration fee. Do not forget to register for the conference!


Driving Directions 

A Special Thanks to our Sponsors!

Platinum Sponsors
Inter 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

Register Now! 

Things to do & places to eat in Charlotte
http://www.charlottesgotalot.com/101-fun-things-to-do-in-charlotte 
http://www.tripadvisor.com/Attractions-g49022-Activities-Charlotte_North_Carolina.html 
http://www.charlottecentercity.org/

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!

Tentative agenda: Times and titles are subject to change.                              The physicians listed have committed to making presentations.

2014 NETS PATIENT CONFERENCE CHARLOTTE, NORTH CAROLINA

 Thursday, September 18^th –  Saturday 20^th 

THURSDAY AFTERNOON
3-5 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 - CCAN
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   

3:45-4:15           Somatostatin analogs control symptoms and slow
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
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    

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.

What is Carciniod Cancer

WHAT IS CARCINOID CANCER? Carcinoid is part of a group of tumors called neuroendocrine tumors that grow in the hormone producing cells, is listed with the National Organization of Rare Disorders.

Because neuroendocrine (NET) cancer is considered rare and due to a lack of public awareness the disease has had a low priority for medical research. Current studies suggest that Carcinoid and Neuroendocrine tumors are not as rare once thought.

Over 11,000 new patients are diagnosed each year and as many as 125,000 patients are living in the US today- AND the number of diagnoses is increasing by more than 5% annually.

Carcinoid/NETs are also regularly overlooked during the diagnostic process. Many patients go untreated for years and have been told the have another disease. However, due to the generosity and selfless effort of many people, progress IS being made!

If the tumors are found early and you get proper treatment, you can live a long life. There are many 20 year survivors living in the USA. Failure to diagnose the disease and provide proper treatment, however, has the most serious consequence.

New Clinical Trial for neuroendocrine tumors sounds promising

From The Caring for Carcinoid Foundation web site

 

 

Theragnostics of Neuroendocrine Tumors with Somatostatin Antagonists

Peptide Receptor Radionuclide Therapy (PRRT) is a technique widely used in Europe for the management of patients with metastatic neuroendocrine tumors.  There are currently clinical trials in the United States for PRRT with somatostatin agonists as described below.

PRRT delivers targeted radiation therapy by exploiting the physiology of neuroendocrine tumors. Most neuroendocrine tumors, including carcinoid, have specialized cellular receptors that bind to somatostatin, a hormone that exists naturally in the human body. Scientists have developed artificial “analogs” of somatostatin to attach to these receptors.  These are called somatostatin agonists and they include agents like octreotide. Somatostatin agonists are able to target neuroendocrine tumors by binding to the somatostatin receptors present on tumor cells.

The PRRT currently in use typically combines a somatostatin agonist with a radioactive substance called a radionuclide to form highly specialized molecules called radiopeptides. These radiopeptides can bind receptors on tumor cells where they emit radiation that can either 1) be read for diagnostic imaging or 2) kill tumor cells.

Studies have suggested that PRRT with somatostatin agonists can lead to a decrease in tumor size and alleviation of symptoms in some patients.  However, not all patients respond and there can be serious side effects including kidney failure.   To date, randomized prospective clinical trials, of the nature typically required by the FDA for regulatory approval have not yet been completed.  However, there is currently a prospective randomized clinical trial of PRRT with somatostatin agonists in the United States enrolling patients at multiple centers.

The Memorial Sloan-Kettering Clinical Trial 

To improve effectiveness while reducing side effects, Dr. Weber and his collaborators have developed a technique for “next generation” PRRT.   Instead of somatostatin agonists, this next generation PRRT will employ somatostatin antagonists. Based on preclinical data, Dr. Weber believes that somatostatin receptor antagonists can be more effective and generate fewer side effects than the substances that are currently being used to treat patients.

Specifically, this trial will assess the potential viability of 68 Ga-DOTA-JR11 and 177 Lu-DOTA-JR11 as a pair of diagnostic and therapeutic radiopeptides for neuroendocrine tumor patients. Gallium 68 is a radionuclide that can be used in diagnostic PET scans. Lutetium 177 is a radionuclide often used with somatostatin analogs to form therapeutic radiopeptides. This study will assess the sensitivity of gallium 68 and the safety of lutetium 177 when combined with the somatostatin antagonist, DOTA-JR11 developed by the researchers. Eight patients with progressive, metastatic and inoperable tumors will participate in a clinical trial of peptide receptor radionuclide therapy with the somatostatin antagonist DOTA-JR11.  Thanks to funding from another large Foundation these eight patients will enroll alongside an additional 12 patients for a total of 20 patients enrolled.

This trial may provide proof of concept data to assess the potential for peptide receptor radionuclide therapy with somatostatin antagonists as a new treatment for patients in the United States. Furthermore, strong data from this trial could enhance the commercial potential of these specific compounds. This could pave the way for development of a new treatment and diagnostic imaging strategy for patients with neuroendocrine tumors in the United States.

Institution: 

Memorial Sloan - Kettering Cancer Center

Investigator: 

Wolfgang Weber, M.D. Ph.D.
Diane Reidy-Lagunes, M.D. 

Amount: 

$250,000

Duration: 

2 years

Research Objectives: 

1. Assess biodistribution and tumor uptake of 68Ga-DOTA-JR11 and compare the sensitivity of 68Ga-DOTA-JR11 PET with conventional imaging
2. Determine tumor and normal organ doses after administration of 177Lu-DOTA-JR11; and
3. Obtain preliminary data on tumor response to 177LU-DOTA-JR11.

Abstract: 

Peptide-receptor radionuclide therapy (PRRT) with radiolabeled somatostatin analogs has been developed in the 1990s, and is now frequently used in Europe for treatment of metastatic neuroendocrine tumors. However, not all patients respond well to PRRT; there are serious side effects, most notably chronic renal failure due to the renal excretion of the radiopeptides.  Thus, there is a clear need to develop new ligands with higher tumor uptake and a more favorable tumor-to-kidney dose ratio.

To address this need, members of our group have developed radiolabeled somatostatin receptor type 2 antagonists. These are the first radiolabeled somatostain receptor antagonists.  In this project we will study the second generation somatostatin receptor antagonists, 68Ga-DOTA-JR11 and 177Lu-DOTA-JR11, as a pair of diagnostic/therapeutic radiopharmaceuticals (theragnostics) in patients with neuroendocrine tumors. Specifically, we will (i) assess biodistribution and tumor uptake of 68Ga-DOTA-JR11 and to compare the sensitivity of 68Ga-DOTA-JR11 PET with conventional staging procedures; (ii) determine tumor and normal organ doses after administration of 177Lu-DOTA-JR11; and (iii) obtain preliminary data on tumor response to 177Lu-DOTA-JR11.

We will conduct a clinical trial including 8 patients with well to moderately differentiated, progressive and inoperable midgut carcinoids. Patients will first undergo a PET/CT with 68Ga-DOTA-JR11. Patients with sufficient tumor uptake of 68Ga-DOTA-JR11 will be offered therapy with 177Lu-DOTA-JR11. Therapy will be preceded by a dosimetric study to determine the amount of radioactivity that can be safely administered.

May flowers and good health

Being in Hawaii for the month of April was glorious.  I really did swim and snorkel everyday. Peter came with me for the first 10 days and my girlfriend from Hood River came for a week after that. The last week I was on my own. My "other" son Leo and his wife Genevie and 2 boys live on the Big Island and I spent good family time with them. Leo came to live with Thaddeus, Jessica and I when he and Thaddeus were best friends in the 5th grade. We were blessed to have him be a part of our family for many years after. Not long after he turned 18 he moved to the Big Island and met his future wife.
When the kids were little our main vacation spot was the Big Island and we had many exciting 2 and 3 week vacations there. I always seemed to have one friend or relative that lived there and welcomed us to stay making it an affordable vacation with 3 kids. I'm glad that my introduction of Leo to the Big Island led to him relocating and starting his family there. We enjoyed going out to lunch, dinner and evening music during this trip. We reminisced also that I introduced he and Thaddeus to African Drumming around the same time we took that first trip to the Big Island. Both boys ended up having a love of African Dance and Drumming that has continued into their adulthood. When parenting teen agers it is always beneficial if you have a hobby or 2 that you do together. One that is challenging enough and that the youth involved can excel at and even pass the adult up in their skill level. I enjoyed a drumming class with Thaddeus and Leo every Thursday night for years. We had a great time together. They surpassed me and went on to incorporate music into their lives in various ways. For Jessica and I it was walking, running, going to the gym, taking abs buster classes and of course shopping. She definitely surpassed me in these areas as well. :-)

It's funny how being retired I think about the past now in a different way than I did. I'm fond of the activities I carried out and those who played staring roles in my various life trends and era's. Also how I start out on one story (Hawaii) and end up talking about something entirely different (kids raised).

I did miss my kids, grandkids, mom, family and friends being gone almost a month. I enjoyed the sunsets and the swimming with the dolphins and turtles so much that I continually thought about how nice it would be share the experience with my whole family. Maybe someday we can all go together. Upon return I started back up with the babysitting routine. I watch Jessica's daughter, Paityn (Pai Pai) on Monday and Wednesday and Thaddeus's kids, Kimani and Ayana on Tuesday's. Thursday and Friday are free days and my friend Louise still helps me on Monday and Wednesday's and took over while I was gone. Imagine arranging my own substitute.

I'm very pleased to announce that I did well on the health front during my trip. For the last 10 days I did need to give myself 3 shots a day of Octreotide in the tummy since they don't give the every 28 day, long acting shot of it on the Big Island. The sub Q shots I gave went into the area on my stomach where I have no sensitivity from the surgeries, so I didn't feel it.  I did feel a little worse with the shots than I do with the long acting version though, a little more hormonal fluctuation and intestinal upset.

My return to regular life here in Seattle was a bit bumpy too. I had a red eye flight with a lay over in LA. I did not sleep on the flight. I arrived home to wonderful 85 degree weather but couldn't sleep that night (it was hot) after getting a call that the mammogram I had before leaving did result that a biopsy was needed of the left breast and lymph node area. So arriving home Thursday morning I had the biopsy Friday morning at 7 am. I also gave blood for my every 3 month labs and got my long acting Octreotide shot that morning. The short acting and long acting merged together weirdly and it felt very different. The combination of all this and the time (3 hours difference) and weather change (it then started raining and was in the 50's) caused a day or 2 of rest to be needed. Peter, my mom and Jessica helped remind me to take care of myself. Also hanging over my head was a bone scan scheduled for the following week. The great news is that the biopsy was benign and the bone scan showed no growth of the metastasis in the hip and back.. In my last entry I mentioned that the last CT scan also showed no growth and that there was no longer any cancer in the thyroid.  From all indications I have a 4-6 month period now where all looks good and I can enjoy the summer and eating healthy and exercising. We want to continue in this direction indefinitely.

Helping me to feel good the Lake Ridge outdoor pool opened Mothers Day and I hope to start swimming laps one of these days soon. Mothers Day was really special this year since my mom is recovering well from back and neck surgery, my health is stable and we have 2 new baby girls in the family who were not here last year. It was Jessica's first Mothers Day! We all gathered at my house and shared a healthy meal. Lots of good pictures taken.

I had my first Pilates lesson the other day and think I'm ready to start back in with an abdominal core body strength work out. I know it is good that I have gained - not lost weight but the weight gain is a bit too much now. :-) I'm hoping to drop 20 pounds over the summer by reintroducing exercise into my routines. I'm walking about 2.5 miles per day now. A great mental health plus is that I've developed a friendship from the NET support group with a guy who has NET's with a very similar medical history to mine. It is good to compare notes and to laugh about the diarrhea and other uncomfortable side effects of either the cancer or the medication. Both of us know every day is a blessing.

Another blessing about being in Hawaii for a month was the amount of reading and listening to CD's I was able to do.  I love affirmations. May I be safe, may I be healthy, may I be at peace and may I live with ease - love this. I like saying these for myself, for others and for all of us. I also have a daily calendar by Louise Hay and published by Hay House. There are so many great affirmations that I'm reading them every morning over and over again. Here are some of my favorites.

I am grateful to be alive today. It is my joy and pleasure to live another wonderful day.

I let go of fear and doubt, and life becomes simple and easy for me.

Good health comes from love and appreciation.

I am able to make correct decisions. I recognize my own intuitive ability.

I trust my inner wisdom.

I easily let go of everything I know longer need. (like tumors :-)) Another similar one: Today I easily release all that my body no longer needs. (With healthy eating and living the tumors are shrinking and going away-I'm certain of it)

I give myself the green light  to go ahead, and I joyously embrace the new.

I expect good experiences to come to me. All is truly well in my world.

Today I trust that my future is in good hands.

I move beyond past limitations into the freedom of the now.

I am centered and focused, I feel more secure each day.

I use my mind and thoughts to enhance my life.

A smiling face and joyful, loving words are the best presents I can share with all those I know.

It is only a thought, and a thought can be changed.

Wherever I am, I always have an enjoyable time.

It feels good to know that I am safe and I am loved. ( I feel so good about all my relationships)

Today I take a moment to count my blessings. (and there are many)

I have a harmonious relationship with my family. (yes)

I express who I am in joyous, positive ways.

I express love and create harmony wherever I go.

As I go through my day I am aware that the Universe (God, my family) loves me.

Today I look for the good in my life and that is what I find.

I am always safe no matter what doorway I pass through.

Today I enjoy every minute of what ever I'm doing.

For every problem that I may create I am confident that I can find a solution.

Patience is being at peace with the process and pace of life.

My body is always doing its best to create perfect health.

I choose only thoughts that create a wonderful future, and I move into it now.

Positive affirmations create my future while making me feel good in the moment.


Believe it or not these are only a few of my favorites but you get the idea. My wonderful future includes family reunions, playing with grandchildren, spending time with my mom; boating, travel, home projects and movies with Peter, the annual Native canoe journey, swimming, sauna's, walking, farmers market's, organic whole foods, lemon water and lots of restful sleep.

In closing I wanted to mention once again that Peter has been a constant in this cancer journey. Most recently he went with me for the biopsy and bone scan and even came home from work quickly one day when I was babysitting and didn't feel well.  His band the Peter Jamero Project played recently and sounded great as usual. He sang a song, which was new and sounded great. His children, sisters and dad are also a joy to know.
My mom and I are enjoying each others company more than ever. Is it possible to love her even more than I always have? :-) She is supportive and understanding and such a great - great grandma! My son and daughter continue to inspire me to be a better and better person. These 3 grandchildren are the cutest, sweetest and most well behaved kids I think I've ever experienced. No really!

Life is just so good and all my May flowers are blooming!

Happy Spring sunshine -off to Hawaii!

What a beautiful spring day it is! I am getting ready for my trip to Hawaii. It turns out I need to take some Octreotide short acting injectable with me for the last 10 days. When I was first diagnosed in October 2011 I had to give myself 3 shots per day in the tummy. I did this for 6 weeks until they could tell that I was tolerating the medication well. Then we went to the LAR 30 long acting shots that I get once every 28 days in my hip area (alternating sides). So for the last 10 days I'm in Hawaii I'll be giving myself the injections again. Only this time I have lost all sensitivity in the area where I get the shots due to the surgeries so I shouldn't even feel the injections. :-) It is a very tiny needle and I tolerated the shots well. The every 28 days shot is a very large needle. I have to bring the viles of Octreotide and syringes on the plane in my carry on along with a letter from my doctor. Octreotide has to be refrigerated so I have to take a cold bag with me and ask the flight attendants to put it in the fridge on the airplane. This will be interesting. As long as they understand I'm not a security threat. :-)

I got a massage this morning and have Paityn and my friend Louise over for the day. We are going to walk the 3 mile Seward Park Loop. My yard is full of color and blooming spring plants. This makes me really cheerful every time I see and smell it. I've got wonderful little Easter baskets for the 3 grandkids all ready to give since I won't be here on Easter. There are a lot of good bunny and spring books for little ones. I got a Grandma Loves You book that is so darling.

My darling husband is finishing up our taxes and the kids tonight before we leave for Hawaii. There are many benefits to having a Corporate Controller husband when it comes to budgets and taxes.

Below is an interesting email I got today from the company that distributes Octreotide.

Happy Spring!!!

Love,
Caryn





Dear RealSupport Member,

As a person living with the challenges of metastatic carcinoid tumors (carcinoid syndrome), it is important to know that you are not alone. There are many others who face the same challenges and have the same questions that you may have.

In response to your request for additional support, I am pleased to welcome you to RealSupport, a new program exclusively for people who are coping with the daily challenges of living with carcinoid syndrome. Your doctor may have told you about Sandostatin^® LAR Depot (octreotide acetate for injectable suspension). Sandostatin^® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term treatment of the severe diarrhea and flushing associated with metastatic carcinoid tumors and long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors in patients in who initial treatment with immediate release Sandostatin^® (octreotide acetate) Injection has been shown to be effective and tolerated. In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined. Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor. Please see additional Important Safety Information below.

I have learned a lot since my diagnosis with carcinoid syndrome. As a retired school teacher, I have a strong belief in the value of education and support. RealSupport offers you a chance to learn about the challenges of carcinoid syndrome and about the experiences of other patients.

While RealSupport does not replace the guidance you receive from your health care team, it will serve as an additional source of information about carcinoid syndrome.

Through this program, you will receive:

• Patient Webcasts that give you a chance to view brief videos hosted by experts who can provide real insights into living with carcinoid syndrome
• Podcasts (ie, audio programs) via e-mail, featuring stories of real people with carcinoid syndrome
• A Treatment Journal designed specifically for people living with the severe diarrhea and flushing associated with carcinoid syndrome

If your doctor prescribes Sandostatin LAR in the near future, you will have the opportunity to update your information and receive appropriate support materials.

IMPORTANT SAFETY INFORMATION
Warnings and Precautions: Treatment with Sandostatin^® LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.
Before taking Sandostatin^® LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.
Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include: back pain, fatigue, headache, abdominal pain, nausea, and dizziness.
Other information: Patients with carcinoid tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms.

INDICATIONS AND USAGE
Sandostatin^® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term treatment of the severe diarreha and flushing episodes associated with metastatic carcinoid tumors and long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors in patients in whom initial treatment with immeditate release Sandostatin^® (octreotide acetate) Injection has been shown to be effective and tolerated. In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined.

Smooth Sailing for now!

Hello everyone,

Following up on the last post I have had very good news. It has been determined that tumors have not grown, some have shrunk and that there is no cancer in my thyroid as previously thought. I will have another CT Scan in 6 months and labs done in 3 months. I will continue to have the Octreotide shot every 28 days. I am feeling much stronger and ready for more exercise and some weight loss. So far I have been consistently gaining weight which is good but you know there is a limit to how "big" I want to get. :-) As my choice of pants to wear each day became more and more limited and the scales were headed toward 160 I decided it was time to course correct again. I'm still trying to do the vegies and fruit primarily with no sugar, dairy, carbs, salt or alcohol but you know the better I feel the more I feel like celebrating, being happy, getting together with friends and treating myself. Its been difficult to stay disciplined even though I believe my good diet played a role in the tumor shrinkage.

My wonderful Uncle Jerry and Aunt Liz have generously given me there condo on the big Island to stay at for almost a month. I'll be gone April 3-30. I'm really excited. Peter will come from the 3rd to the 15th and Shari from Hood River will come the next week. I'll have a glorious week to myself there at the end. I'm looking forward to boating trips this summer, perhaps a kayaking trip to Utah to visit Wanda and a Ramero/Jamero family reunion in California in June. I'll be eating good and swimming in Hawaii and I hope to continue daily swimming when I return at the Lake Ridge outdoor swimming pool near my home. It opens on Mothers Day. I love being a mother and having a mother in my life and a daughter and son and 3 grandchildren.

This last March 15 was 29 years since my sister Cindi died in a car accident. I still think of her and miss her. My mom and I spoke of her on the day and I took Paityn, now 5 months old, down to Olympia to spend the day with her Great Grandma, in celebration of Cindi's life. Paityn was born on Cindi's birthday, October 18.

I was thrilled to spend happy time with Kimani, my oldest grandchild, who turned 4 on March 5th the same day my nephew turned 16 over on Vashon Island. I love all the family milestones and celebrating with loved ones. Everything about life seems more precious now. I spent an afternoon visiting with folks at CDSA while I had Ayana (9 months old, 2nd grandchild). Rhonda, Brianna, Liz and I shared laughter and as always it was great to see Maile, Nick and Flow. The team at Madrona CDSA continues to amaze me with their excellent preschool program where Kimani is a happy participant in joy filled days.

I'm heading off to yoga now and will walk around the Seward Park Loop afterwards if the sunshine stays around. If it pours down rain I'll ride the exercise bike and watch the nightly news then take a sauna. There is always a good choice and an option or possibility waiting I've noticed. The reason I can take off to do fun things in the afternoon while having Paityn over is that my loyal and fun friend Louise is here spending time with Paityn today.

Happy thoughts to you all during this glorious spring!

Good News

Last Friday I got the CT of the chest with contrast and the CT dual phase liver with pelvis scan. I was able to access the results later that day. The tumors have not grown since the October 2013 Cat scan and in some cases have actually shrunk.  The labs resulted with some in the normal range but many results I'm unable to decipher without a doctor. On Mon I'll see Dr Feldman, my Group Health oncologist. We will discuss lab and CT results. On Mon March 3, I'll do the same with OHSU surgeon Dr Pommier. I don't know how much the good diet, sauna, reduced stress and  exercise contributed to the good results but I do know all your prayers helped. I'll report on my Dr Feldman visit next week.

Happy Valentines Day

It's pouring down rain here outside my home office. Never the less we are leaving soon to go down to the ocean. I love walking on the beach rain or shine. Actually it is more often gray and windy. That ocean air does something to clear my mind and warm my heart. I'll report back about the Iron Springs Resort remodel. We'll have dinner in Ocean Shores tonight. I'm really looking forward to the rest and breathing ocean air.

Health wise I actually had a difficult week. As mentioned before, these are hormone emitting tumors I have in my system. There are periods where I feel really down. It does often come when I'm tired or sick with a cold as I was this week. There is a sadness and a feeling that something is wrong accompanied by the fatigue and general weakness. The fear that the tumors are growing or new ones are starting begins to be a frequent feeling. I try the mind over matter approach. I try to get my thinking and mind to change the negative thoughts that can lead to the negative feelings. I do believe our thinking can and does create our reality and that we are all capable of manifesting our reality to a certain degree or fully. So I try to think about wellness and envision myself being here when the grandchildren are in high school or older. Its hard to describe how difficult it is to stay positive. I think a lot of it is physical, from the hormones produced by the tumors, side effects of the drugs and not feeling well due to a compromised immune system. I recently got the books; Cognitive Behavioral Therapy (CBT) for Dummies (I hate the Dummies word), The Cognitive Behavioral Workbook for Anxiety and the Desire Map: A guide to creating goals with soul. I'll see if CBT can help me tackle toxic thought patterns and stay more hopeful.

I know for sure now that I am doing too much and that it affects my ability to feel well and be hopeful. I don't know how I'll cut back on the childcare just yet. I know I must though.

I had a nice visit with my mom and dad for lunch last week. I took Paityn down to Olympia. My friend Randy who also has NET's came over for lunch. It is comforting to have a friend with a very similar diagnosis and surprisingly similar effects from the tumors and side effects from the Octreotide.

Next week is the lab work and Friday is the CT scan that will measure the tumor growth and activity. I should know by Friday afternoon whether the tumors are growing and or spreading. On the following Monday I meet with my Group Health Oncologist Dr. Feldman to discuss the results and any actions that need to be taken. The next Monday, March 3, I meet with my surgeon at OHSU to discuss the results with him.

My wonderful daughter Jessica advised me yesterday to try to not worry about the things I can't change. To try to think about the things I do have control over (diet, exercise) and to work on letting go of worry about the things that stress me that are out of my control. It is really good advise regardless of how hard it is to follow. She did add that she knows it is easier said than done. :-)

All in all, life is so good and most of the time I know that. :-) I am blessed with a wonderful husband, parents, children, grandchildren, brother and sister in law, extended family, friends, a beautiful home, medical coverage, enough resources, good food, travels in the beautiful northwest and the time to enjoy all those I love and the world around me. Staying present to that everyday and every moment is the key to moving through this difficult illness with grace.

Happy Valentines Day! Love yourself and others and be well.

end of January update

Happy belated New Year to everyone still reading my blog. I'm sorry for the long delay between updates. I'm thinking of writing once per week and scheduling a day and time to do so. It is interesting when you're first retired how you begin using your time differently. My time does seem to evaporate at regular daily intervals where it is the end of the day and I'm trying to remember what all I did that day. I have been purchasing and preparing really healthy food which I've discovered does take a chunk of time and is something I really wasn't doing when I was working full time. Peter used to cook more than I did and it has switched to me preparing many of our meals partly because I'm the one trying to eat differently for my health. I enjoy cooking healthy foods - what a surprise!

I am enjoying the calm simplicity of cooking, chopping, doing dishes and washing counters. It is more fun, rewarding and relaxing than I would have guessed. Most of the time I'm eating just fruits, vegetables, nuts, seeds and a little healthy organic protein in the way of fish, chicken and sea food with a little red meat on occasion. Cutting out dairy, sugar, most carbs and grains, caffeine and alcohol is a big deal for me even though I always thought I ate so healthy before. The nice thing I'm settling in on is that I'm eating this way 90-95% of the time and occasionally allowing myself to go off for a meal or a part of a day. For the last football game I allowed myself to have nachos in the celebration and for the Super Bowl I will probably have something that doesn't fit perfectly into the plan like chicken wings that have teriyaki sauce that probably has sugar in it. When I go off of the diet I don't go far off and I don't stay off for more than a meal. I believe it is helping. My blood sugar levels and blood pressure levels are still higher than I'd like them to be even following the healthy life style diet. I check both blood and sugar levels from home having purchased a blood pressure machine this month.  I will be reporting the levels to Dr. Feldman and Dr. Shaul this week and may have to go on blood pressure medicine. I was warned prior to the pancreas surgery that I could end up with diabetes following the surgery. This may be happening but I'm still hoping to manage both sugar and blood pressure levels with diet rather than drugs. I never had high blood pressure or sugar levels before the surgeries.

I've located some good resources for how to eat right for the best liver function as I continue to want the liver to regenerate fully. Dr. Pommier did say in the last appointment that most people with P-NET's eventually die from liver failure so I'm determined to treat my liver as good as possible. I've been reading: The 9-Day Liver Detox Diet by Patrick Holford, Mind Medicine: The Secret of Powerful Healing by Uri Geller and the Fat Flush Plan (sections on the liver) by Ann Louise Gittleman. Some favorite healthy foods include hummus and Trader Joe's Tahini sauce used to dip veggies in; unsweetened cranberry juice with a little stevia, ice and lemon or lime; stir fry's with shrimp; salt substitutes with good spices, turmeric, decaf tea, avocados, kiwi, little oranges and nuts for snacks and eggs with lots of veggies for breakfast or banana's with almond or cashew butter.  It is important that I like what I'm eating.

 I also researched the use of saunas for supporting the liver and healthy detox functions in general. I purchased a wonderful 4 person sauna from the Olympic Hot Tub Company and it was delivered last week. I have been enjoying water with lemon in it (at least 8 glasses per day) and having 1 or 2 saunas per day. I really love it. I find it is extremely relaxing even if I only have 10 or 15 minutes. I prefer 30-45 minutes. I can meditate in there more easily and have noticed my skin feels better already. I'm not as pale as I was and feel more vital energy. I have been walking daily as well. On Mondays I get to walk with my friend Nancy from Suquamish who is over here babysitting her 1 year old grandson who lives near me on Beacon Hill. It is a joy for me to cruise with the strollers with another retired grandma. I have 3 month old Paityn on Mondays so it works out well. I see Nancy much more than I used to and it is wonderful. She also made sure I attended the basket making class led by our friend Marilyn, an elder in the Suquamish tribe earlier this month. I made my first Native basket and I must admit it turned out really well. I put pictures of it on Face book. Both Nancy and Marilyn are part of the Raven Canoe Society, my canoe journey group of friends. I have been paddling in the annual Native American canoe journey for over 15 years. This year the destination is Bella Bella on Vancouver Island. It is a 3 week paddling trip in July and then a week of celebrations. I'm signed up to participate at this point and hope I'll be up to it by then.

I think getting back into swimming will help me prepare for the canoe trip. The Lakewood Community outdoor pool opens in May and I believe I'll be swimming laps by then. That would be good preparation for paddling 6-8 hours per day. I couldn't do it now but can imagine I might be recovered and well enough by July. I really love this clean, warm, outdoor pool. Membership is reasonably priced and the owners and visitors are nice. It is a diverse, local community pool that isn't crowded. If you want more information on it just ask me. It's a great place. What I can do now is walk the whole Seward Park Loop which is almost 3 miles. I've had fun walking with my retired old friend Sally and with my daughter Jessica. Jessica is adjusting to going back to work at the University of Washington. I currently watch Paityn (her daughter) Monday and Wednesday while she works. Starting in February my very good old friend Louise, who used to watch my kids when they were little, will help out by watching Paityn on Wednesdays. She is really looking forward to being Auntie Louise. She has been coming over and getting to know Paityn (who is a delightfully happy baby) and taking walks too. Louise is also the one that was by my side during much of the hospital stay and the first week of recovery out of the hospital. (Along with Peter of course)

On Tuesday's I am babysitting my son Thaddeus's daughter, Ayana who was born in June. Its hard to believe she is 8 months old already. I have been babysitting at their house but this week will try bringing her to grandma's house and see how that goes.  I'm sure she'll eventually enjoy coming to my house as I have quite a collection of cool toys now down in the exercise/kids room. I bought Peter an elliptical training machine for his birthday this month and got the sauna installed, so what used to be the music room and toy room has become the health room as well. It still has the piano, drums and a wide variety of percussion instruments available to play. Somehow this all fits in one room. Ayana's older brother,  Kimani, who is almost 4 now gets to keep his Thomas the train collection upstairs in the living room. He is such a big boy, always picks up his trains after playing and loves his preschool. I pick him up once per week from school in the early afternoon and have him over to play and for dinner, returning him home at bedtime. In case you didn't count that is 3 grandchildren and 3 days of having grandchildren over per week for me. Luckily Louise and other friends are going to be good substitute grandma's for me when I have an appointment or am just tired on those days. I enjoy seeing all 3 of them very much and am just learning how to balance seeing them, supporting their parents with childcare and still taking care of my self. I'm working it out. :-)

Last week I found that my immune system just wasn't up to fighting off everything that comes my way. I seem to have gotten several infections and a cold or slight flu bug. I feel much better this week. This week end our friend Brian came over and did a 2 hour Reiki massage session with Peter and I. It was very relaxing and healing. It helped me get better. We actually had one of those wonderful Sundays where we read the paper, ate leisurely, did the Reiki and then went to Lincoln Park in W. Seattle to watch the sunset and walk along the beach. It was glorious.

This work - life balance thing that we all talk about is so different for me now, than it was when I was working. It is great to identify all the things I want to do and enjoy and then make them all happen in time while still taking care of myself.  We had the pleasure of having Peter's sisters and dad visit from California around his birthday the middle of January. The reason for the visit was that a close old friend of the family living here in Seattle, Fred Cordova, had passed away. I attended his beautiful service with at least a thousand others. It was a joyous and heartfelt occasion that described a life well lived. It was great to have so much family here to celebrate Peter's birthday. Celebrating with Peter's family, I have identified,  is one of my favorite things to do.

Another favorite thing to do is to spend time at the ocean. Peter and I will be staying at Iron Springs Resort on the Olympic Peninsula for 4 days; Valentine's Day through Presidents Day. I'll be getting some more good reading in. I'm currently reading Marianne Williamson's newest book that Peter gave me for Christmas. Reading in bed is another favorite thing to do. I'll be visiting my girlfriend Shari in Hood River in the month of February too for a couple of days. That always involves a great deal of laughing which will be good for me. On my way there I'll get to stop off in Olympia and spend time with my mom and dad and my new friend Randy. Randy and his wife have been good to get to know as he has P-NET also and we have very similar cases. I hope to stop and visit my friend Jean, on the Nisqually tribal council, on my way to or from the ocean as well. I'll try to squeeze in seeing some blues in Tacoma with my very old friend Becky. We met when I was 18 and she was my boss at The Evergreen State College Library. She is a big Blues and Jazz fan and one year we took a trip to New Orleans to the Jazz festival there together. But we'll see some local music in February.

I am focused on doing all these fun things when I am feeling well because some times I don't feel well. It is hard to always say why I don't feel good when I don't. Some of the flushing I had earlier in the diagnosis has returned and a general weakness and fatigue has continued to plague me. I have some diarrhea and intestinal problems. I have some pain in the mid-gut area still. It can hurt to get up from a sitting position or go up stairs. A recent stool sample came back showing that there was blood in the stool. This would normally mean a colonoscopy would be ordered. My oncologist and surgeon again disagree about whether I should do that now. The 2 positions are genuine; one says have it now because it could be further cancer the other says that my digestive track has been through a lot and it is only 2 months since I got out of the hospital. Drinking the yucky stuff that makes you have diarrhea till your system is cleared out may not be the best thing to do just yet. It is possible that this is nothing serious. I had a colonoscopy in November 2001 prior to the diagnosis of P-NET. They removed benign polyps at the that time. It is possible the blood came from hemorrhoids. It is unlikely that this very slow growing type of tumor would have popped up in this relatively short period of time. None the less I'll need to do another colonoscopy at some point in the near future to make sure.

The other difference in opinion between the surgeon and oncologist is about taking the zolodex drug I described in the last post. I've decided to wait on that. I'm going for current quality of life over possible prevention of future pain due to bone metastasis. Since there have been no clinical trials on this I don't really know the correct answer to this question and I may start the drug later in the year. Hopefully if I do try it I won't experience the flu like symptoms that 46% of those taking it have for up to a week after the 15 minute monthly infusion. On Friday I got my every 28 day injection of Octreotide. As often happens something went wrong with the needle once it went in and I had to be stuck twice. Actually the consistency of the Octreotide was off after stirring, making it not able to go through the needle. Darn, those are big needles and painful injections. My reactions afterwards really vary. Sometimes I'm very emotional as the hormones fluctuate, other times very tired. I felt pretty good this time and was able to attend my niece Roslin's 11th birthday party at the pottery painting place in Crossroads Mall in Bellevue that night. Peter painted a football for the super bowl in blue and green and I painted a grandpa coffee mug for him.  It is a good example of how I just try to feel my best and not miss out on good things every day even if I don't feel my very best.

I have Dr. appointments in February to check in on my progress toward full recovery. Late in the month I'll have a CT scan that we will use to measure tumor growth. in early March I'll return to see the surgeon and he will have seen the CT scan results. I also have an appointment with the OHSU thyroid specialist.

I am so grateful for my life and for every day I have here with all those I love. It is so funny that I am excited about the Seahawks since I have never been into football before. It is just wonderful to see the whole city so together in its support of this team. I like many of the characters on the team including Russell Wilson and Richard Sherman. I guess I'll take joy, teamwork and celebration where ever they occur as a good thing. Now if only some of that football money could go to fund education in Washington State I'd be thrilled.  :-) I have a very happy full life and I know how lucky I am to have all the love that I do in my life.

In closing, I just want to say again that I'm sorry it has taken me so long to write.  If any one out there wants to get together with me for a walk or a movie let me know. I've seen almost every movie nominated for best picture at the Oscars and a few others.  I'm up for visiting. I love walking the grand kids in the stroller. I hope all is well with your families and that you are enjoying life as much as I am. I had a great holiday season seeing my parents, brother and family and friends! I didn't expect January to continue with just as much fun but it has.
Be well!