A Years Absence from Reporting on my Condition

Dear folks,

Obviously I should have notified everyone here that I was going to stop writing blog posts but I'll admit that I always thought any day I'd start in again. It has helped me to function more like I don't have a deadly terminal illness without a cure, in some ways and to just get on with living my life and spending less time researching, obsessing, improving, reading the NET blog daily and so forth. I've had the luxury of behaving this way in part because I've felt so good. After describing in the last few blog entries, the side effects of Octreotide injections every 28 days, the resulting abdominal discomfort in my body from the surgeries and the emission of hormones from the tumors themselves; I thought I don't want to be a complainer. I don't want to tell this story, be this person. It isn't fun to write the blog entries unless I can be positive, inspiring, happy and help others that might read it in some way. I know it is ok to be down at times and report how I'm really feeling. I did that several times. The reality is it was very rare and short lived that I felt so down. I've never really owned the disease in the way that it could control me. I live in the moment, grateful for everything that I have every day. I've got a lot to be thankful for and a lot that I love to be and do. I spend a lot of time being in nature, walking in parks, seeing good movies, talking with friends and family.... I'm preparing to go on the canoe journey again this year and can't wait. I've become re-energized around progressive politics and have enjoyed going to marches and rallies, writing emails and making phone calls while sending post cards to the white house. Although I had a brief couple months with a back and leg pain issue that might not have had any association with the bone mets in that region, for the most part I have been more active and happy than ever.

I did stop getting any injections for 10 months which let my body reset and try to find balance after so much change. I felt a lot better over all. However, the studies that showed the newer drug Lanreotide had higher tumor inhibiting properties, led me to start back on injections in February. After 3 injections my body is getting used to it again and I've been feeling mostly well. I've also discovered through creating a spread sheet for tumor growth from each MRI resulting every 6 months that the tumors actually have been growing for some time in my liver. They are growing a couple of millimeters each 6 month time period. The radiologists were comparing each MRI only to the previous MRI and not to multiple past scans. Therefor each resulting report would say there had been no or very little change compared to the previous scan and not list tumor sizes of the top largest 10. So I requested the further data and have been able to track a pretty steady growth rate. The liver functioning labs are still showing pretty good liver health. Other labs like glucagon have been steadily on the rise. It was 1,000 before the surgeries, dropped to 95 and has now slowly risen to 265. Normal range is around 100. So the increase is another sign that tumors are growing. The bone metastases and bone marrow mets have remained stable since the 2013 base line bone scan.

I've made no progress on weight loss and have never really been able to feel comfortable being this much larger. At a NET conference this last Saturday I learned a bit more about the metabolism issue going on with the glucagon, Sandostatin analogue and now Lanreotide along with the missing spleen, gall bladder and part of the pancreas. I've been exercising and eating pretty well but not super disciplined. Its a balanced approach that takes in a large dose of life quality including some sugar, some meat and enjoying Seattle's incredible restaurant scene. I'm not a full blown foodie but have approached that at times with Peter. We love eating out, trying new things, sea food, desert......the atmosphere. Laughing with family and friends and having the occasional glass of wine has replaced strict guidelines of no sugar, no carbs, no alcohol. I do eat organic and consume a lot of vegetables and fruit. I eat very little dairy and enjoy nuts, brown rice, ginger tea, green tea and yes a good cup of coffee daily.

Peter and I have continued enjoying our little boat C-Dancer a C-Dory. It is like boat camping as we explore the San Juan's and Gulf Islands in Canada. Salmon fishing, crabbing and shrimping is fun especially with friends and family aboard.  Peter turned 60 in January and I'll join him at 60 on May 21. I love being this age and being retired. I love being a grandma, cooking, gardening, walking, going out, sleeping in and even reading posts on face book and posting pictures on Instagram. Peter has a few more years till retirement but we still manage to carve out a lot of time for fun together. I also get to see my parents pretty often in Olympia. I bring them up here or I visit there but we talk at least weekly and they are doing pretty good following a year with many major health scares last year.

I've enjoyed my grandchildren immensely this last year. A new one was born; Presley turned one on March 8th. She is a real character and joins her 3 year old sister Paityn born on my sister Cindi's birthday. Presley runs and climbs on everything and Paityn sings full songs at the top of her lungs walking around the house and likes to play act dramatic parts of shows she's seen or made up scripts. Jessica and her husband Dominic bought a house in Federal Way and Jessica finally got a new car. She was promoted to the Director of the Dream Project at the UW. I'm really proud of her. I had the honor of speaking at an event that she also spoke at this year. We both helped Launch (formerly CDSA) raise funds at this years luncheon. We also attended a retirement dinner together for one of my old friends, where she was also asked to speak. I watch the girls every Tuesday at her house, which is lovely. We talk almost everyday. She's a great mom!

My other granddaughter Ayana gets to come over to Jessica's too on most Tuesday's. My son Thaddeus brings her over and stays to work on graphic arts jobs on his computer. His son Kimani, my oldest grandchild and only boy is doing great in first grade at a wonderful little private school in Olympia not far from where I grew up, attended school and my parents still live. Ayana, the one I delivered, will be 4 in June and will begin a pre-kindergarten program at Kimani's school, Olympia Community School, next fall. She is tall and beautiful; full of spunky life. Kimani is a polite, darling, inquisitive, smart, young man who is so loving and respectful. All 4 grandkids love being with grandma and Papa Peter as he is affectionately known. My son Thaddeus's wife completed her masters in Naturopathic counseling last June and got a great job very quickly. This allowed Thaddeus to focus once again on his art work and graphic art work while also driving the kids to and from school and various programs. I love his work and have many pieces framed and up on the walls of our house. I admire his perseverance at not giving up his love of art. He is a good dad!

We are happier when we follow our heart and do what we love that is for sure. I will continue to live life fully. A new scan has been approved here in the USA that I had done at Stanford once as part of a Clinical Trial. Although Keiser Permanente has denied my oncologists referral to get the scan at the UWMC I feel pretty sure our appeals will be successful.  Once the scan has shown the new extent of the disease I will get myself into a PRRT appointment either here in the US or in Europe. This new radiation system (PRRT) designed explicitly for NET's should be approved here by the FDA by the end of the year. I think I have till mid to late 2018 to act before the tumors become once again life threatening in the liver. I could still opt to go to Germany or Sweden where they've been doing the PRRT for over 15 years.  I could also return to my surgeon at Oregon Health Sciences University (OHSU) to have another tumor de-bulking surgery. I wish the Swedish immunology trial was accepting US citizens, I'd love to be a part of that. We'll see what happens.

For anyone who has happened across this and read it after such a long absence in writing, thank you for caring about me. I have no idea how frequently I'll write moving forward.  Probably not very often but when and if something big happens I'll make at least a brief entry. Let me also remind anyone reading that I love going on walks with friends to catch up, seeing a good movie or getting a cup of coffee or a treat out. So if you're inclined please call or write me and set up a date to get together. 206-972-9434 (cell/text) and swanjamero@gmail.com or friend me on Facebook.

Thanks again for caring and taking the time to check in. Much love to all.

Ups and downs; Germany or Sweden

I watched this short video with Dr. Liu today. I thought you may be interested. He is probably the most knowledgeable doctor for NET cancer in the US. He is discussing PRRT which is the treatment I am still considering in Germany. I'm also looking into an immunology clinical trial at Uppsala University in Sweden.

 

http://global.onclive.com/peer-exchange/neuroendocrine-tumors/peptide-receptor-radionuclide-therapy-in-neuroendocrine-tumors

I've been suffering with several problems of late and not feeling well. Extremely bad colds and flu bugs have been plaguing me. I seem to catch everything from everyone including the darling grandchildren. I've also had a painful back and what might be sciatica problem on the right side. Its quite bad at night and preventing me from getting good sleep along with the plugged nose and cold symptoms. Frequent urination and dehydration from the diabetes also affects sleep negatively. I always want to remind people I never had diabetes or any blood sugar problems prior to the pancreatic surgery. Alas, I never seem to know what is damage from the surgeries, cancer and/or normal aging. I try to remain up beat but sometimes when I stop doing yoga and walking because I don't feel good, then I also want a cookie or ice cream because I'm feeling a bit sorry for myself and thus you have the downward spiral.

 

As my birthday month of May approaches I will get back into exercising, eating better and spending time in my garden with our beautiful spring. I am constantly reminded of how much I have to be thankful for. Accepting everything as it is and still being grateful feels better than any other alternative. So I sleep, rest up, take care of myself and move forward. All will pass in time.....including all of us. With much love to all of you this spring season, may we all bloom where we're planted and enjoy new growth.

MRI shows growth in liver tumors

A brief note to say the last 2 MRI's one in September and the other earlier this month show some slight growth in 3 tumors. The other liver tumors have stayed the same size and there have been no new tumors. The recent bone scan showed no growth. Due to the growth in the liver I will step up my plans to pursue the PRRT (PRRT.org) treatment either in Germany or at a clinical trial here in the US. I hope to get into the NYC one I posted about earlier.
Life has been full. Supporting my mom and dad through some health issues, helping to bring my new granddaughter into the world, walking, yoga, spending time with all 4 grandchildren and with friends seem to be enough to keep me busy. Managing my fairly healthy diet takes time too.

Happy Spring and Day Light Savings Day!

One mans story

New post on Carcinoid Cancer Foundation

Trader Joe’s Saved My Life: Steven Muller’s Story by The Carcinoid Cancer Foundation (CCF) The combination of a lengthy road-bike ride, a recovery drink mix, and dried figs from Trader Joe’s led to a health crisis for Steven Muller and a subsequent diagnosis of a neuroendocrine tumor (NET) in his small intestine - a rare disease that affects at least 125,000 people in the United States. Steven is sharing his story today, February 29, 2016, Rare Disease Day, in hopes that others who have neuroendocrine tumors get a proper diagnosis, early on. Neuroendocrine tumor patients often go undiagnosed or misdiagnosed for years. From the initial onset of symptoms the average time to proper diagnosis often exceeds five years. A seasoned and accomplished athlete, Steven didn’t anticipate how he would feel back in July of 2013 after cycling 60 miles on a very hot day and experiencing a 4,000 foot altitude gain during the ride. He stopped off at the home of Andreas Bibl, the man he describes as his Silicon Valley Mentor, who offered Steven a highly-concentrated drink and dried figs to help him recover from his state of dehydration. One of the figs bloated, got stuck in Steven’s intestines, and caused a small bowel obstruction. That led to an ER visit and an eventual colonoscopy during which doctors discovered the tumor that had been slowly growing for many years. Without that unique confluence of events –especially the Trader Joe’s fig getting stuck on the tumor and literally saving his life – Steven’s cancer would have continued to grow and spread. At the time doctors diagnosed Steven, his tumor had already spread to 30 lymph nodes and nearby organs. Surgery was scheduled for August. Using da Vinci robotic technology, a minimally invasive procedure during which surgeons operate through a few small incisions, Steven had a right hemicolectomy, an appendectomy, and a right ileocolectomy. Upon reflection after his diagnosis, Steven realized he actually had symptoms of a neuroendocrine tumor as far back as 10 years prior. He had facial blushing and some unusual bowel habits. Symptoms of gastrointestinal neuroendocrine tumors that are producing excess hormones include flushing and diarrhea, similar to the symptoms of more common illnesses such as Crohn’s disease and irritable bowel syndrome. “Early detection is critical,” says Steven, advising anyone who suspects a neuroendocrine tumor to “be relentless, go to reputable medical professionals, get all of the necessary tests, and take recommendations of actions as mandatory.” As he was only 33 when diagnosed, Steven wouldn’t normally have had a colonoscopy. But when his small bowel obstruction resolved itself and the doctor suggested a colonoscopy, Steven scheduled it immediately. Following his diagnosis, he scheduled appointments with 3 different neuroendocrine tumor specialists, two in California and one in New York. When people look at Steven they see a young, healthy, fit man. “Just because you look a certain way doesn’t mean you’re healthy,” says Steven. In addition to his NET diagnosis, he learned in 2014 that he had basal cell skin cancer on his face, near his sideburn. Moh’s surgery was used to remove the small growth, which he had thought was a mole and was discovered by a dermatologist who was checking out a mole on Steven’s back that was irritating when he exercised. As the 36-year-old father of 3 young girls, ages 5, 3, and 9 months, Steven has reflected upon what cancer might mean in his life. He is vigilant in visiting doctors to ensure he is properly followed and he is very optimistic about his future. His diagnosis initially caused him great anxiety and high blood pressure. His doctor recommended cognitive behavioral therapy at Stanford University in California which helped Steven to feel better prepared to handle the stresses of living with a cancer diagnosis. Steven and Jackie Muller and their 3 daughters. Steven also worked longer hours to shift his focus and he believes that immersing himself in his work was helpful. One of the Heads of Business Development for Google Play App Developers in California, Steven made his way to Silicon Valley from the East Coast. He grew up in the northern suburbs of New Jersey, went to parochial school, became a state champion wrestler and pole vaulter, and was eventually nominated to the United States Naval Academy in Annapolis, Maryland. After earning his Bachelor of Science in Economics from the Naval Academy, he was accepted into the highly competitive Naval Nuclear Submarine Officer program and received the equivalent of a Master of Engineering Management in conjunction with Nuclear Power training. He served as a Division Officer on board a Ballistic Nuclear Submarine (USS West Virginia, SSBN 736) and received a Top Secret Security clearance, during which time he managed a nuclear reactor plant, operated a periscope, and broke top secret codes while transiting hundreds of feet below the surface of the ocean. He chose this path following high school, says Steven, because “I wanted to serve my country and do it in a way that was fun and exciting.” Realizing he didn’t want to make the Navy his long-term career, Steven then transitioned into banking and went to work on Wall Street in derivatives, first with Barclays Capital and then serving as Vice President of Financial Operations at Deutsche Bank. When the financial crisis of 2007-2008 struck Steven chose to pursue a new path. He earned a Master of Business Administration (MBA) from Duke University in North Carolina and from there he moved to the West Coast. He began the next phase of his career at Google, first as Finance Manager, working on a strategic payment solution for Google Shopping and spearheading major strategic divestiture, and most recently with Google’s Strategic Account Management for Google Play. “Google is a company that appreciates innovative thinking,” says Steven. It is that culture that makes him thrive personally and professionally and has earned him awards for leadership and high levels of accomplishment. Always attracted to that which is highly challenging and difficult has guided Steven from his youth on, whether it is in athletics, Armed Forces service, banking, or management. His ultimate career objective is to be a Chief Operating (or Business) Officer of a major organization that focuses on making the world a better place. Steven has also dedicated himself to cycling, doing 100 mile rides each year, including an annual ride in the Best Buddies Challenge: Hearst Castle, raising funds for Best Buddies programs for inclusion for people with intellectual and developmental disabilities. That’s where Steven’s mentor and friend, Andreas Bibl, inventor and entrepreneur, comes in. It was Andreas who encouraged and inspired Steven to become an avid cyclist in 2011 and pushed him to ride the Tunitas Creek route on July 13, 2013. And it was at Andreas’ house where they stopped to eat Trader Joe’s figs while drinking Cytomax. Andreas himself was diagnosed with cancer 6 months after Steven and they fought cancer together, riding the rigorous hills and roads of Silicon Valley. Andreas Bibl (left) and Steven Muller (right) Interaction with family and friends led Steven on the path to acceptance of his cancer. It has been a demanding journey since he initially learned of his diagnosis – in fact his ears were ringing so loudly when the doctor said the words Stage IV cancer that he could not hear anything else at the time. But he has come to accept his journey as he has all of the other challenges in his life. With loving support from his wife, Jackie; the pride and joy he takes in his three daughters; mentorship from his Silicon Valley friend Andreas; and the wonderful team of people at Google, Steven continues to seek out and embrace new challenges and new opportunities. The Carcinoid Cancer Foundation (CCF) | February 29, 2016 at 11:33 am | Tags: Andreas Bibl, basal cell skin cancer, Best Buddies Challenge, cancer survivor stories, carcinoid blogs, carcinoid cancer, cyclists in California, cyclists with cancer, da Vinci robotic technology, Duke University alumni, Google employees, Google Play, living well with cancer, Naval Nuclear Submarine Officer program, neuroendocrine cancer, rare cancers, Rare Disease Day 2016, Silicon Valley, Steven Muller, Trader Joe's, Tunitas Creek bicycle route, United States Naval Academy | Categories: carcinoid awareness, neuroendocrine cancer awareness | URL: http://wp.me/p74OJ7-2HC Comment

Applying to new Clinical Trial in NYC

A Study to Assess the Use of Radiolabeled DOTA-JR11 to Diagnose and Treat Neuroendocrine Tumors

         

Full Title

Theranostics of Radiolabeled Somatostatin Antagonists 68Ga-DOTA-JR11 and 177Lu-DOTA-JR11 in Patients with Neuroendocrine Tumors

Purpose

The purpose of this study is to assess the use of a peptide called DOTA-JR11 to locate and treat metastatic or inoperable neuroendocrine tumors. DOTA-JR11 is similar to a natural hormone called somatostatin. Receptors for somatostatin are commonly found on the surface of neuroendocrine tumors.
In the first part of this study, DOTA-JR11 will be attached to a radioactive substance called gallium-68 and will be given to patients intravenously (by vein). Through PET scanning, researchers can see where the DOTA-JR11 binds, indicating a tumor contains somatostatin receptors. The gallium-68 makes the location of these receptors visible on the PET scan.
In the second part of the study, researchers will attach radioactive lutetium-177 to DOTA-JR11. DOTA-JR11 will bind to a patient's tumor cells in the same way as gallium-68 DOTA-JR11, and it is hoped that the radiation from lutetium-177 will kill those cells. In this part of the study, researchers will determine the safe dose of lutetium-labeled DOTA-JR11 and also examine the drug's effectiveness for treating neuroendocrine tumors.

Eligibility

To be eligible for this study, patients must meet several criteria, including but not limited to the following:

• Patients must have a carcinoid or pancreatic neuroendocrine tumor that is metastatic or inoperable.
• At least 4 weeks must pass between the completion of chemotherapy and 6 weeks since local therapies and entry into the study.
• Patients may not have previously received prior radiolabeled therapy (including SIRTs).
• Patients' blood counts must be within normal limits.
• Patients must be able to be walk and do routine activities for more than half of their normal waking hours.
• This study is for patients age 18 and older.

For more information about this study and to inquire about eligibility, please contact Dr. Wolfgang Weber at 212-639-7373 or Dr. Diane Reidy-Lagunes at 646-888-4185.

Protocol

15-161

Phase

Pilot

Disease Status

Relapsed or Refractory

Investigator

Wolfgang A. Weber

Co-Investigators

Neeta Pandit-Taskar

Diane Reidy Lagunes

Diseases

Upper Gastrointestinal › Neuroendocrine

Locations

Memorial Hospital

Fun, informative article about NET

This is a fun informative article about NET written by a surgeon.

https://drstevencurley.wordpress.com/2015/10/29/mister-lobster-guy/

Next move might be PRRT in Germany

Dear friends,

Below is information about the PRRT treatment that I am going to attempt to do in Germany. While not yet approved in the US there are several places in the world doing it, Dr. Richard Baum in Germany being the one with the most experience. Several trials in the US currently should result in eventually approval here but it could be years. Following the
GA 68 scan I had during my Stanford Clinical Trial experience I began looking into this treatment. Last month my MRI showed a small amount of growth in a few of the tumors in my liver. There were no new tumors and many had not grown at all. The bone mets showed no growth. This may or may not mean disease progression. Normal time to tumor progression for those of us on Octreotide is a little over 2 years which is how long I have been on it. A few month ago I switched off of Octreotide to Lanreotide, a new drug just approved by the FDA here in the US but used elsewhere for years, that had performed a little better than Octreotide at slowing tumor growth. Unfortunately I have not felt well on it and have developed side effects similar to the carcinoid syndrome I have been lucky enough to not have had previously. Next week I will switch back to Octreotide injections. It continues to be so hard to know what to do with this disease. Should I stay on Lanreotide longer to see if it works and I feel better eventually? Do I feel bad from Lanreotide or for some other reason like disease progression?

I like Dr. Shankaran at Seattle Cancer Care Alliance (SCCA) and she seems to agree that switching back makes sense since it is unlikely that I developed the carcinoid syndrome now and the tumors have not yet grown to the degree that they would be causing more symptoms. We know this because of recent scans and labs that measure bio-markers for this type of cancer.

I am putting together a packet to mail to Germany with all my data and scans on a CD. I'm going to try to call them and mail it tomorrow. I'm excited about the Progression Free Survival (PFS) rates of PRRT written about below.

Good news for NET Cancer

·         October 04, 2015

·         By Tore Aasbu

·         Blog post by Bill Claxton.

Good news from Vienna, ECC 2015, the European Cancer Congress,
announced by Philippe Ruszniewski, MD, head of gastroenterology and pancreatology at Beaujon Hospital, in Clichy, France.

“Treatment with the novel peptide receptor radionuclide therapy (PRRT) Lutathera significantly increased progression-free survival (PFS) over octreotide LAR (Sandostatin) in patients with advanced midgut neuroendocrine tumors (NETs), according to findings from the phase III NETTER-1 trial presented at the 2015 European Cancer Congress.”
Medical abstract is here (www.europeancancercongress) and a press release is here (www.onclive.com).

 “This is the evidence we’ve been waiting for”

Not only does the NETTER1 trial result demonstrate that PRRT is the 2nd most effective treatment for mid-gut neuroendocrine tumor patients with SST receptors (after surgery)  it can potentially move PRRT to a 2nd-line therapy, to begin right after surgical removal of the primary (with SST analogs used for anti-proliferative maintenance thereafter).  These results will lead to changes in practice for functional mid-gut NETs, launch confirmatory studies for lung and hind-gut NET patients and provide a big boost to nuclear medicine programes worldwide!

 

 

Abstract title:  

LATE BREAKING ABSTRACT: 177-Lu-Dotatate significantly improves progression-free survival in patients with midgut neuroendocrine tumours: Results of the phase III NETTER-1 trial

J. Strosberg⁽¹⁾, E. Wolin⁽²⁾, B. Chasen⁽³⁾, M. Kulke⁽⁴⁾, D. Bushnell⁽⁵⁾, M. Caplin⁽⁶⁾, R.P. Baum⁽⁷⁾, E. Mittra⁽⁸⁾, T. Hobday⁽⁹⁾, A. Hendifar⁽¹⁰⁾, K. Oberg⁽¹¹⁾, M. Lopera Sierra⁽¹²⁾, P. Ruszniewski⁽¹³⁾, D. Kwekkeboom<sup>(14)

(1)</sup>H. Lee Moffitt Cancer Center & Research Institute, Medical Oncology and Hematology, Tampa, USA
⁽²⁾Markey Cancer Center - University of Kentucky, GI - Carcinoid and Neuroendocrine Cancer, Lexington, USA
⁽³⁾University of Texas MD Anderson Cancer Center, Department of Nuclear Medicine, Houston, USA
⁽⁴⁾Dana-Farber Cancer Institute, Neuroendocrine and Carcinoid Tumors, Boston, USA
⁽⁵⁾University of Iowa Carver College of Medicine, Division of Nuclear Medicine, Iowa City, USA
⁽⁶⁾Royal Free Hospital, Gastroenterology and Gastrointestinal Neuroendocrinology, London, United Kingdom
⁽⁷⁾Zentralklinik, Center for Neuroendocrine Tumors, Bad Berka, Germany
⁽⁸⁾Stanford University Medical Center, Radiology and Nuclear Medicine, Stanford, USA
⁽⁹⁾Mayo Clinic College of Medicine, Hematology and Oncology, Rochester, USA
⁽¹⁰⁾Cedars Sinai Medical Center, Gastrointestinal Oncology, Los Angeles, USA
⁽¹¹⁾Uppsala University Hospital, Endocrine Oncology, Uppsala, Sweden
⁽¹²⁾Advanced Accelerator Applications, Clinical Development, New York, USA
⁽¹³⁾Hopital Beaujon, Gastroenterology and Pancreatology, Clichy, France
⁽¹⁴⁾Erasmus Medical Center, Nuclear Medicine, Rotterdam, Netherlands

Background: Currently, there are limited therapeutic options for patients with advanced midgut neuroendocrine tumours (20–45% of NETs) progressing on first-line somatostatin analogue therapy. Since 2000, thousands of patients have been treated with ¹⁷⁷Lu-DOTA⁰-Tyr³-Octreotate (Lutathera^®) peptide receptor radionuclide therapy (PRRT) with promising results.

Material and Methods: NETTER-1 is the first Phase III multicentric, stratified, open, randomized, controlled trial evaluating Lutathera^® in patients with inoperable, progressive, somatostatin receptor positive midgut NETs. 230 patients with Grade 1–2 metastatic midgut NETs were randomized to receive Lutathera 7.4 GBq every 8 weeks (x4 administrations) with renal protection (amino acid solution infusion) versus Octreotide LAR 60mg every 4-weeks. The primary endpoint was PFS per RECIST 1.1 criteria, with objective tumour assessment performed by an independent reading center every 12 weeks until tumour progression. Secondary objectives included objective response rate, overall survival, TTP, safety, tolerability and health-related quality of life. An independent Data Safety Monitoring Board regularly assessed the safety outcome.

Results: Enrolment was completed in February 2015, with a target of 230 patients randomized (1:1) in 35 European and 15 sites in the United States. At the time of statistical analysis, the median PFS was not reached for Lutathera and was 8.4 months with 60mg Octreotide LAR [95% CI: 5.8–11.0 months], p<0.0001, with a hazard ratio of 0.21 [95% CI: 0.13–0.34]. The number of centrally confirmed disease progressions or deaths was 23 in the Lutathera group and 67 in the Octreotide LAR 60mg group. The safety profile observed in the study was consistent with the safety information generated in the Phase I-II clinical trial.

Conclusions: The Phase III NETTER-1 trial provides evidence for a clinically meaningful and statistically significant increase in PFS in patients with advanced midgut neuroendocrine tumours treated with Lutathera.

No conflict of interest.

Keywords:
177Lu-DOTATATE
Midgut Carcinoid Tumours
Peptide Receptor Radionuclide Therapy (PRRT)

 

 

Switched from Octreotide to Lanreotide monthly injections

As mentioned previously I was waiting for FDA approval for about 2 years for this new drug that I could tolerate more easily than the old drug called Octreotide. Both the old and the new one are somostatin analogues ( a man made version of a naturally occurring hormone called somostatin). They both reduce symptoms caused by the NET's and they also both inhibit tumor growth. Below is a description of Lanreotide. I had my first injection last week and it went well with less pain at injection and soreness in the week following. Group Health approved coverage for this new drug and I am the first Group Health member to get it. I'm sure many more NET patients will switch over time to the new drug.

I also finally got the medical report and the film on CD of the Stanford scan. I have sent it to Dr Feldman at Group Health, Dr. Shankaran at Caner Care Alliance and Dr. Pommier the surgeon at OHSU. I will meet with each of them to interpret the results and see how I might want to proceed with my care plan. I will be looking further into going to Germany for the PRRT treatment. More on the results of the scan and the PRRT in the future. Happy summer!
I'm swimming, doing yoga, gardening, taking little trips to see friends, walking the Seward Park loop, seeing family, enjoying my parents, husband, children, grandchildren, friends and neighbors and being grateful for every day and every breath.


Somatuline^® Depot - (lanreotide) Injection

 

to improve progression-free survival in gastrointestinal and pancreatic NETs*

*NETs=NEUROENDOCRINE TUMORS

What is SOMATULINE DEPOT?

SOMATULINE DEPOT is a prescription medicine used for the treatment of adult patients with a type of cancer, known as neuroendocrine tumors, from the gastrointestinal tract or the pancreas (GEP-NETs) that has spread or cannot be removed by surgery.

                                   

Contact Us

Ipsen Biopharmaceuticals, Inc.
106 Allen Road
Basking Ridge, NJ 07920
Phone: (866) 837-2422
Fax: (908) 275-6301      

           

           

www.somatulinedepot.com

INDICATION

Somatuline^® Depot (lanreotide) Injection 120 mg is indicated for the treatment of adult patients with unresectable, well- or moderately differentiated, locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors (GEP-NETs) to improve progression-free survival.

IMPORTANT SAFETY INFORMATION

Contraindications:

Somatuline is contraindicated in patients with hypersensitivity to lanreotide.

Warnings and Precautions:

• Somatuline may reduce gallbladder motility and lead to gallstone formation. Periodic monitoring may be needed.
• Patients may experience hypoglycemia or hyperglycemia. Glucose level monitoring is recommended and antidiabetic treatment adjusted accordingly.
• Somatuline may decrease heart rate. In patients treated for GEP-NETs, the incidence of heart rate <60 bpm was 23% with Somatuline vs 16% with placebo. Incidence of heart rate <50 bpm or bradycardia was 1% in each group.
• Somatuline may decrease bioavailability of cyclosporine. Cyclosporine dose may need to be adjusted.

Adverse Reactions:

In the GEP-NET pivotal trial, the most common adverse reactions (incidence >10% and more common than placebo) in patients treated with Somatuline Depot vs placebo were abdominal pain (34% vs 24%), musculoskeletal pain (19% vs 13%), vomiting (19% vs 9%), headache (16% vs 11%), injection site reaction (15% vs 7%), hyperglycemia (14% vs 5%), hypertension (14% vs 5%), and cholelithiasis (14% vs 7%).
                                              

What are the possible side effects of SOMATULINE DEPOT?

SOMATULINE DEPOT may cause serious side effects, including:

• Gallstones. Tell your healthcare professional if you get any of these symptoms:
  • sudden pain in your upper right stomach area (abdomen)
  • sudden pain in your right shoulder or between your shoulder blades
  • yellowing of your skin and whites of your eyes
  • fever with chills
  • nausea
• Changes in your blood sugar (high blood sugar or low blood sugar). If you have diabetes, test your blood sugar as your healthcare professional tells you to. Your healthcare professional may change your dose of diabetes medicine.
• Slow heart rate
• High blood pressure

The most common side effects of SOMATULINE DEPOT in people with GEP-NETs include stomach area (abdominal) pain, muscle and joint aches, vomiting, headache, and pain, itching, or a lump at the injection site.
SOMATULINE DEPOT may cause dizziness. If this happens, do not drive a car or operate machinery.

 

Happy summer (well almost)

Another beautiful day in Seattle where we have great weather. :-) My garden is in full bloom and about a month ahead of time due to all this warm dry weather we are having. I've enjoyed the work in the garden but must admit it has been squeezed in-between a host of other activities. I now know first hand how people say that after retirement they are busier than when they were working.

I'll just try to list briefly the medical points and not go into the many trips and fun things that are interspersed with all the medical appointments, treatment and research. As mentioned previously, I went to Stanford in early May and was allowed to participate in the Clinical Trial for the Ga68 scan. Stanford's fund paid the $30,000 for the scan for me, did blood work and genetic testing to see if I have the hereditary type of NET's. The results so far have shown that I do not have the hereditary type - which is great news. The scan showed that there is very little new cancer that we didn't already know about except in the right leg, hip, knee and back. As you may remember from the last post I was curious about why I was experiencing pain on that side. The new bone mets are very small in size which is why they were not picked up on the bone scan in April.

Group Health denied coverage of the genetic testing so I had to pay $1600 on my credit card for it. I have since appealed and am hoping to get reimbursed someday. They also denied coverage of Lanreotide which I had hoped to switch to for my monthly injections because it is a smaller, less painful needle and is water based. Lanreotide was finally approved by the FDA earlier this year after several years of study. Dr. Feldman, my Group Health Oncologist, has appealed with me to have the drug covered considering the difficult time I've had tolerating the injections at the injection site.

I've increased dosage of the thyroid drug since labs showed my TSH levels to be off. Hopefully this increase will help me loose a bit of weight which could alleviate some pain on the right side. I've been exercising pretty regularly but my diet has been up and down as I've celebrated my birthday and several other special events like anniversaries and birthdays of others that give me an excuse to have sugar or carbs. I also love the scones at PCC which is only a few blocks from my house. :-)

Oh well, "everything in moderation including moderation" is one of my new favorite quotes.

As always I am happy to be alive and enjoying the many other people that I love and taking care of myself. It is all an incredibly sensitive balance of not over doing it and getting too tired but living life to the fullest at the same time. I am so blessed to be having this time where I feel pretty good. I think it is time to start planning that trip to Italy and get my kayak out of the garage and into the water.

I hope each and every one of you are enjoying all that life is giving you and the endless possibilities to see and feel beauty all around us in the present moment. Be well!

Bone Scan shows no growth

Got the result yesterday that there has been no growth in the bone mets over the last year since they were located. More good news. I will see my family doctor, Dr. Shaul, next Thursday to explore why I'm having pain in my right leg, hip and knee. It could be arthritis or deterioration due to aging. My mom did have a hip replacement at a fairly young age. I hope there is something I can do to alleviate the discomfort beside aspirin. I think the extra 30 pounds I'm carrying around is aggravating what ever is causing it. Try as I might through healthy eating and exercise I am unable to budge the scale below 170. I think the damage to the pancreas is the culprit although my thyroid is a likely cause also. I'll get the thyroid levels checked out again soon but we do know that the nodules there have not grown. I just don't know how much they may be altering normal function.  I'll get blood levels done soon for the Stanford visit on May 6 and 7. I'm looking forward to seeing the results of the Galium 68 scan I'll get there and feel confident that I have very little NET (Neuroendocrine Tumor) growth in the rest of my body outside of what we already know about and are monitoring. I'll see Dr Shankaran at Seattle Cancer Care Alliance (SCCA) for the second time on May 12th with associated labs done on May 11th. We'll be able to discuss the results of the GA 68 scan as well as changing medications.

On Face Book I have been in touch with a variety of patient advocate groups organized around NET support. I've participated in some on-line chats and educational programs recently. This morning I saw a video of the Oncologist I'm seeing at Stanford describing a new drug called Lanreotide just approved by the FDA here in the US that can be taken instead of Octreotide injections which I am currently getting every 21 days. I knew about this before but it was cool to hear her discussing the study results on clinical trials that led to FDA approval. There was also a video of Dr. Wolltering from New Orleans who I went to see after I first got diagnosed and also went to hear him speak at a conference in North Carolina last year. I wish I knew how to post those video's here off of FB. I'll ask my IT-savvy husband  and see if he can help me do it.

I'm really enjoying spring this year. I'm reading lots of affirmations, doing meditation and yoga and spending time with both my grandchildren and parents. My brother moved from Vashon to W. Seattle making it easier to get together too. My parents will be selling their long time Olympia home in the next few months and moving to Panorama City, a retirement community, in Lacey. It is perfect timing for them and mostly a happy occurrence.

I've enjoyed seeing many friends lately too. I'll be traveling to Portland and Silverton Oregon next week end to visit 6 different old friends! Our boating season will begin with a trip to Friday Harbor April 15th with the C-Dory boating group. This is an annual gathering that we always enjoy. Afterwards some boaters from Canada are going to come to Seattle for a few days and we look forward to having them over for dinner. Peter's daughters wedding shower is this Saturday and I've had the pleasure of doing a little bit of prep to help out on it. We're looking forward to going out with Peter's old childhood friends for dinner and music later in the month and another friend of mine is retiring with a fun a retirement party scheduled. Some of Peter's relatives are returning to Seattle to live at the end of the month so we'll host a mini Jamero family reunion here of sorts to welcome them. If all that wasn't enough Peter is treating me to a trip by boat to Rosario Resort on Orcas for my upcoming b-day in May. We'll stay in a wonderful room over looking the water on my birthday with little C-Dancer parked in the marina below.  My friend Wanda from SLC Utah will be visiting our area (staying in Portland) at the end of May and I'll spend a day at the Olympus spa with Louise again. Peter and I had a great mini vacation to Vancouver BC at the beginning of the month visiting Stanly Park, Grenville Island and several art museums.

Jessica and Q got Paityn baptized on Easter. She looked so darling in her pretty dress. I still have the first cousin girls every Wednesday together. Kimani and I enjoy his visits and an occasional "over night" at Grandma and Grandpa's.   He is looking forward to using the new fishing pole Grandpa Peter got him this year. All three grandkids can now say Grandpa Peter. :-)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Becky Hester	2 cuties! Sent from my iPhone On Apr 9, 2015, at 12:26 PM, Caryn Swan Jamero ...	Apr 9 (1 day ago)
2 cuties! Sent from my iPhone On Apr 9, 2015, at 12:26 PM, Caryn Swan Jamero ...

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