Diverticulitis, the flu and spring flowers

Spent 10 hours in the ER last week with a high fever and abdominal pain. Found out part of it was diverticulitis. I do seem to have a weakened immune system picking up many little bugs coming my way despite taking tons of vitamins, drinking tea and fluids and exercising. To reframe that in a more positive way I'm sure I am avoiding many a flu and cold bug; even as I get a few each year like everyone else. I'm sure the flu shot helped me to have less severe symptoms. A good thing is how great it feels to come back out from under the strain of being sick. When I get down I wonder if I'll ever feel ok again or if this is a long downward slide just beginning with the current illness. When I begin to feel a lot better again I am so thankful that it was just a temporary illness and that I'm getting better in stead of it being a downward spiral into worsening cancer.

 Today I went to my water exercise class again and will start up my jogging and yoga schedule again beginning tomorrow. I've recommitted to watching my sugar and carb intake and to healthy eating in general. Everything got out of whack when I was sick. Now I have exactly 2 months to my 58th birthday, so a good amount of time to see if I can get up to feeling a little stronger by then with exercise and diet. Notice I didn't say to see if I can loose weight by then. I'm redefining health to feeling good and getting stronger rather than a number on the scale.

During the 2 weeks I was sick I had to cancel my appointment with Stanford for the clinical trial consultation regarding the Ga68 scan. I rescheduled for May 6th the first appointment they had and have now been upgraded to getting the scan on the 7th. Peter's youngest sister will have a 50th birthday celebration May 9th near our medical appointments so it all works out for the best and Delta allowed us to change the dates for free due to my medical condition and that it was for a clinical trial.

Peter and I were glad to get back to our Salsa dancing class last night. We're thinking of moving up to the next level again. It is all coming back to us now. :-) Next week end Peter and I will be traveling to Vancouver BC for 2 nights on a gift certificate we have. Lot's of family and friends celebrations keep us busy. My parents are selling their home and moving into Panorama City in Lacey so that will be a big project I'll be helping with. All 3 grandchildren are well and I continue to have them each once per week. My children are well as are Peter's. His daughter's wedding shower is in April and I've enjoyed helping with that a bit. His youngest son is currently traveling the world with his wonderful girlfriend. We're happy for them. My brother and his family moved from Vashon to a beautiful house in W Seattle making it easier to see them more often. I'm enjoying all my friends that I walk with, do yoga with, who help me with the grandchildren, meditate with me or watch spiritual shows and discuss politics. My yard is in full bloom and I've planted new bulbs. It will be colorful this spring and summer bringing me and the hummingbirds joy as always.

Annual monitoring schedule 2015

Annual monitoring schedule

Labs – Every 6 months to include:  CBC/PLT/DIFF; Chemo Panel (HEME/ONC); CRP Cardiac High Sensitivity currently high at 5.2 norm is 0-3.0;  ALC currently at 5.9 high which is pretty good, norm is 4.5-5.6; ALK Phos is 184 high; Calcitonin is normal, Chrom A is normal

Annual - Chest, Abdomen, Pelvis CT scans were done on 10/30/13 and 2/21/14; to reduce radiation exposure will change this to 1) Galium 68 full body scan possibly at Stanford by 4/30/15, or another US clinical trial by summer 2015 or 2) a tri-phase MRI or 3) an Octreotide full body scan. We need to see the areas with known metastases like the lungs to be able to measure for tumor growth and to look for any new metastases.

Annual - Bone scan will be done annually and does involve radiation. Last one done 5/8/14 will schedule for 2015. Last one showed bone mets in left iliac crest (hip) and lumbar spine 3,4,5 and 6.

Annual - Liver CT scan was done 4/2013 and 1/2015 showing no tumor growth. In the future will request a tri-phase MRI annually to reduce radiation.

Annual – Ultrasound (US) of the thyroid will be done annually to monitor for tumor growth. Several US were done at OHSU in 2013 and 2014 showing tumor reduction. Medullary thyroid cancer was deemed unlikely due to normal calcitonin levels.

Annual - 5HIAA 24 hour urine collection was done in 2013 and again in February 2015. Norm is 6 and below my rate was 0.6 indicating a very low proliferation rate for tumors consistent with the recent liver CT scan showing no tumor growth for almost 2 years from April 2013 to January 2015.

 

 

Now that I'm doing really well I'll probably reduce the amount of writing I'm doing in the blog. I'll still post major mile stones around these biomarkers and scans. If I get into a clinical trial I'll share that as well. For now I'll go to my interview at Stanford in 2 weeks on March 13 and see if I can get accepted there to have the Galium 68 scan.

Thanks so much for your continued prayers and love. As I mentioned in my last post I am really happy! Everything that all of us are doing is certainly working!

All is well - very happy

A friend let me know that the article on death could be interpreted as concerning for those not in regular contact with me. Sorry about that, I am very well and happy.
It is amazing that my 5-HIAA 24 hour urine collection test came back at a 0.6 when the norm is under 6.0. This is the proliferation rate of the existing tumors and this is an excellent result showing no growth. The last liver CT scan also showed no growth with a comparison from all the way back to April 2013.
I don't even have the diarrhea I once had possibly due to getting the Octreotide injection every 21 instead of 28 days now.  I also don't have the flushing or night sweats very often. I have fallen down a bit on the discipline around my diet and have been enjoying some deserts and treats a bit more frequently than I was. I'm still eating very well and have not been loosing weight as I'd hoped I would. I'm getting slightly more comfortable with being 30 pounds heavier than when I was diagnosed in October 2012. Oncologists still suggest I do not try to lose weight since this weight is also a good sign that the disease is not active.

I'm loving my daily exercise routines though. I'm now going to Lotus Yoga in Columbia City 3 times per week. I've discontinued Pilates which I was doing twice a week until this week. I'm doing water exercise at the new Rainier Beach pool once a week and plan on making that 2-3 times per week starting next week. I'm doing the 2.5 mile walk around the Seward Park Loop 3-5 times per week and hope to add Wednesday night Zumba at Columbia City Fitness and Salsa dancing weekly with Peter next week. The Central Area Senior Center has a line dancing class and Chicago Style Stepping class that I hope to check out just for fun. I do love dancing. My son has a monthly art show and African dancing event and I get to dance at that to live drumming.

I always remind myself to count gardening, which I've already begun with this beautiful weather we've had and babysitting as exercise. On Wednesday I still watch the 2 granddaughters all day. These first cousins are just 5 month apart and both of them walking and talking now. It is truly entertaining and rewarding to be a part of their lives. My friend Louise still helps me make it possible to have the grandchildren with her support and love for them as well.  But carrying them up and down stairs, in and out of strollers and highchairs is exercise. On Friday's I have Paityn the youngest and her cousin Kimani the oldest and almost 5. They are a joy to have together too. Kimani is so great with both his sister and cousin. What a smart guy and a sweetheart. I totally adore all 3 grandchildren with their unique and wonderful personalities and spirits.

Off I go to see another movie. We're celebrating the Oscars by trying to see almost all the main movies nominated. Selma is my favorite and I hope everyone goes to see it. I probably won't go see the Sniper movie but tonight it may be Whiplash.

Lastly, travel - I'm already plotting my next Hawaii trip even though we just went to Maui in January. We get to go to Stanford for the Clinical Trial interview in March and to Peter's youngest sisters 50th birthday celebration in California in May. For my birthday in May we take the boat up to Desolation Sound.

My husband, parents, kids and friends continue to help make my quality of life extremely high at this point. I am very happy and satisfied with my life. It is a great feeling to be having so much fun and so many people I love in my life.

Be well everyone!

Interesting post by Ram Das on dying

Dying is Absolutely Safe

Posted March 1, 2010

There is a tombstone in Ashby, Massachusetts that reads, “Remember friend, as you pass by, as you are now, so once was I. As I am now, so you must be. Prepare yourself to follow me.”
Something has happened to me as a result of meandering through many realms of consciousness over the past fifty years that has changed my attitude toward death. A lot of the fear about death has gone from me. I am someone who actually delights in being with people as they are dying. It is such incredible grace for me. In the morning, if I know I am going to be with such a person, I get absolutely thrilled because I know I am going to have an opportunity to be in the presence of Truth.
It is now becoming acceptable in our culture for people to die. For many decades, death was kept behind closed doors. But now we are allowing it to come out into the open. Having grown up in this culture, the first few months I spent in India in the 1960’s were quite an experience. There, when someone dies, the body is placed on a pallet, wrapped in a sheet, and carried through the streets to the burning grounds while a mantra is chanted. Death is out in the open for everyone to see. The body is right there. It isn’t in a box. It isn’t hidden. And because India is a culture of extended families, most people are dying at home. So most people, as they grow up, have been in the presence of someone dying. They haven’t walked away from it and hidden from it as we have in the West.
I was certainly one of the people in this culture who hid from death. But over the past few decades I have changed dramatically. The initial change came as a result of my experiences with psychedelic chemicals. I came into contact with a part of my being that I had not identified with in my adult life. I was a Western psychologist, a professor at Harvard, and a philosophical materialist. What I experienced through psycheldelics was extremely confusing, because there was nothing in my background that prepared me to deal with another component of my being. Once I started to experience myself as a “Being of Consciousness” – rather than as a psychologist, or as a conglomerate of social roles, the experience profoundly changed the nature of my life. It changed who I thought I was.
Prior to my first experience with psychedelics, I had identified with that which dies – the ego. The ego is who I think I am. Now, I identify much more with who I really am – the Soul. As long as you identify with that which dies, there is always fear of death. What our ego fears is the cessation of its own existence. Although I didn’t know what form it would take after death – I realized that the essence of my Being – and the essence of my awareness – is beyond death.
The interesting thing to me at the time was that my first experience with psychedelics was absolutely indescribable. I had no concepts to apply to what I was finding in my own being. Aldous Huxley gave me a copy of The Tibetan Book of the Dead. As I read it, I was amazed to find myself reading lucid, clearly articulated descriptions of the very experiences I was having with psychedelics. It was immensely confusing to me because The Tibetan Book of the Dead is 2500 years old. I had thought, in 1961,that I was at the leading edge of of the unknown. But here was an ancient text which revealed that Tibetan Buddhists already knew – 2500 years ago – everything I had just learned.
The Tibetan Book of the Dead was used by Tibetan Buddhist lamas to read to fellow lamas as they were dying, and for forty-nine days after their death. Tim Leary, Ralph Metzner, and I began to see the Book in metaphorical terms as the story of psychological death and rebirth, even though it was originally intended as a guide through the process of physical death and rebirth. I now think that the idea of dying and being born into truth, or wisdom, or spirit is really what our business is when we talk about death. When you extricate yourself from the solid identification with your body, you begin to have the spaciousness to allow for the possibility that death is a part of the process of life – rather than the end of life. I feel this very deeply.
People ask, “Do you believe that there is continuity after death?” And I say, “I don’t believe it. It just is.” That offends my scientific friends no end. But belief is something you hold on to with your intellect. My faith in the continuity of life has gone way beyond the intellect. Belief is a problem because it is rooted in the mind, and in the process of death, the mind crumbles. Faith, consciousness, and awareness all exist beyond the thinking mind.
I have a friend named, Emmanuel. Some of you have met him through his books. He is a spook, a being of Light that has dropped his body. Emmanuel shares a lot of great wisdom. He is like an uncle to me. I once said to him, “Emmanuel, I often deal with the fear of death in this culture. What should I tell people about dying?”And Emmanuel said, “Tell them it’s absolutely SAFE!” He said, “It’s like taking off a tight shoe.”
In the past, what I endeavored to do in partnership with Stephen and Ondrea Levine, Dale Borglum, and Bodhi Be (Sufi friend of mine) is to create spaciousness around death. We had different programs like the Dying Hot Line on which people could call and have a kind of pillow talk with people who would help them stay conscious through the process of dying. We also – back in the early Eighties – had a Dying Center in New Mexico. My model was that I knew being with people who were dying would help me deal with my own fear of death in this lifetime.
In the Theravadan Buddhist traditions, they send monks out to spend the night in the cemetery, where the bodies are thrown out uncovered for the birds to eat. So the monks sit with the bloated, fly-infested corpses, and the skeletons, and they get an opportunity to be fully aware of all of the processes of nature. They have the opportunity to watch their own digust and loathing, and their fear. They have a chance to see the horrible Truth of what “as I am now so you must be” really means. Seeing the way the body decays, and meditating on the decay opens you to the awareness that there is a place in you that has nothing to do with the body – or the decay.
That combination led me, as early as 1963, to start to work with dying people and to be available to them. I am not a medical doctor. I’m not a nurse. I’m not a lawyer. I’m not an ordained priest. But what I can offer to another human being is the presence of a sacred, spacious environment. And I can offer them love. In that loving spaciousness they have the opportunity to die as they need to die. I have no moral right to define how another person should die. Each individual has his or her own karma – their own stuff to work out. It is not my job to say, “You should die beautifully,” or “you should die this way or that way.” I have no idea how another person should die.
When my biological mother was dying back in a hospital in Boston back in 1966, I would watch all the people come into her room. All of the doctors and relatives would say, “You are looking better, you are doing well.” And then they would go out of the room and say, “She won’t last a week.” I thought how bizarre it was that a human being could be going through one of the most profound transitions in their life, and have everyone they know, and love, and trust lying to them.
Can you hear the pain of that? No one could be straight with my mother because everyone was too frightened. Even the rabbi. Everyone. She and I talked about it and she said, “What do you think death is?” And I said, “I don’t know, Mother. But I look at you and you are my friend, and it looks like you are in a building that is burning down, but you are still here. I suspect when the building burns entirely, it will be gone, but you will still be here.” So my mother and I just met in that space.
With Phyllis, my stepmother, I was more open, and she could ask whatever she wanted to ask. I didn’t say, “Now let me instruct you about dying,” because she would not have accepted that. But then came the moment when she gave up, and she surrendered, and it was like watching an egg breaking and seeing a radiantly beautiful being emerge, and she was clear, and present, and joyful. It was a Beingness that she always at some level had known herself to be. But she had been too busy all her adult life to recognize it. Now she opened to this beautiful Being in the core of who she was, and she just basked in its radiance.
At that moment, she went into another plane of consciousness, where she and I were completely together, just Being. The whole process of dying was just moments of phenomena that were occurring. But when she surrendered, she was no longer busy dying, she was just being . . . and dying was happening.
Right at the last moment, she said, “Richard, sit me up.” So I sat her up and put her legs over the edge of the bed. Her body was falling forward, so I put my hand on her chest and her body fell back. So I put my other hand on her back. Her head was lolling around, so I put my head against her head. We were just sitting there together. She took three breaths, three really deep breaths, and she left. Now, if you read The Tibetan Book of the Dead, you will see that the way conscious lamas leave their bodies is to sit up, take three deep breaths, and then leave.
So who was my step-mother? How did she know how to do that?
Ramana Maharshi was a great Indian saint. When he was dying of cancer, his devotees said, “Let’s treat it.” And Ramana Maharshi said, “No, it is time to drop this body.” His devotees started to cry. They begged him, “Bhagwan, don’t leave us, don’t leave us!” And he looked and them with confusion and said, “Don’t be silly. Where could I possibly go?” You know, it’s almost like he was saying, “Don’t make such a fuss. I’m just selling the old family car.”
These bodies we live in, and the ego that identifies with it, are just like the old family car. They are functional entities in which our Soul travels through our incarnation. But when they are used up, they die. The most graceful thing to do is to just allow them to die peacefully and naturally – to “let go lightly.” Through it all, who we are is Soul . . . and when the body and the ego are gone, the Soul will live on, because the Soul is eternal. Eventually, in some incarnation, when we’ve finished our work, our Soul can merge back into the One . . . back into God . . . back into the Infinite. In the meantime, our Soul is using bodies, egos, and personalities to work through the karma of each incarnation.

CT scan results 1/26/15

No Tumor growth!

 

 

CT SCAN abdomen - Details

 

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• Details

Narrative

[HST]: carcinoid, please do 4 phase CT of liver

CT OF THE ABDOMEN

Multiple axial images of the liver were performed, without IV
contrast. The patient was then injected with 1 25-cc of Optiray 320.
Arterial phase, portal venous phase and delayed phase imaging of the
liver were then performed. Prior study from April 17, 2013
demonstrated multiple enhancing lesions within the liver. The largest
was located within the left hepatic lobe. Lesions were best seen on
the arterial phase.

Lung bases are clear.

Arterial phase images demonstrate findings consistent with resection
of the lateral left lobe of the liver. There is an 18 x 16 mm lesion
within the medial left lobe of the liver, similar to the prior study.
There is a 2.5 x 1.5 cm lesion, near the junction of the right and
left lobe, similar to the prior study. There is a 17 x 17 mm lesion,
near the junction of the right and left lobe, similar to the prior
study. There is a 19 x 18 mm lesion within the right lobe, similar to
the prior study. There is a 16 x 12 mm lesion within the right lobe,
similar to the prior study. Other smaller hepatic lesions, seen on
the prior study, are less apparent on the current examination. There
are no definite new hepatic lesions.

There is intrahepatic ductal dilatation, similar to the prior study.

The spleen has been removed. Portions of the pancreas appear to have
been surgically removed. The remaining portions of the pancreas
demonstrate no abnormality. The gallbladder has been removed. The
left kidney and visualized portions of the right kidney demonstrate
no abnormality. No significant abdominal adenopathy. No free fluid.

There are no suspicious bony lesions

Impression

IMPRESSION:
1. There has been interval resection of the lateral left lobe of the
liver. There are multiple enhancing lesions within the liver, best
seen on the arterial phase and not significantly changed from the
prior study, as described above. There are other smaller hepatic
lesions, seen on the prior study, that are less apparent on the
current examination. No definite new hepatic lesions.
2. Intrahepatic ductal dilatation, similar to the prior study.
3. No significant abdominal adenopathy. No free fluid

__________________________________________
Signed by: Matthew Bloom
Date: 1/26/2015 11:34 AM

Component Results

There is no component information for this result.

General Information

Collected:01/26/2015 11:13 AM
Resulted:01/26/2015 11:34 AM
Ordered By:Eric Martin Feldman, MD
Result Status:Final result

Waiting game and happiness go hand in hand

I'm waiting a bit to see what happens with my interview at Stanford on March 13th. I'm still trying to get into the clinical trial for the advanced Galium 68 scan (Ga68) that will show all the places the cancer is and how large the various tumors are. If they decide after that interview that I am a candidate I'll go back sometime in late March or early April for the scan. There is a small chance that if they approve me for the trial they could do the scan while I'm there in March. If the results of the scan are good news and there is not much more cancer than what we already know about, it is not growing and the locations are not life threatening, I will continue on with my happy life as usual. If the scan shows immanent threats to my life, I will make plans to travel to Germany for the PRRT treatment. I have a friend in Olympia going on February 5th for the treatment. It will be interesting to see if they are able to rid him of cancer completely. His case is very similar to mine. The cost for the treatment in Germany is $30,000 not counting airfare and hotel for 3 weeks the first trip and a possible 3 different trips needed over a 6 month period. It could be fun and my chance to finally visit Europe for the first time.

I did just return from Maui, my second time to the Island. We really enjoyed swimming, snorkeling, whale watching and eating fresh wonderful fruit.

I've been so blessed with relatively good life quality. I watch grandchildren grow, walk every day and continue to eat well and exercise. I get my injections and take my pills and supplements. I chose a new oncologist at SCCA, Dr. Shankaran and still see Dr. Feldman at Group Health.. Monday I get my every 6 month CT scan to monitor for tumor growth. I haven't had any growth since the surgeries over a year ago. I'll report the results of that and of course of the Ga68 when I eventually get to have it. If I don't get into the Stanford study I'll reapply to NIH and to one at UCLA. I'll get in somewhere eventually.

The blessing continues to be that I am more present and aware of all the wonderful things in my life, I am more intentional in my living, I am aware of my thoughts and can often recognize and change limiting ones. I know how to find that still place through meditation, at the beach, walking in the park or just sitting quietly enjoying my home and loved ones. I am more accepting of myself than before and choosing to "like" myself even though my weight gain is a distracting low point. It is amazing that even though I can't help the weight gain due to the compromised pancreas and am so blessed to be alive, I still sometimes lament my size and wish that I wasn't "over weight". I know that it is silly and I don't really obsess about it. I remind myself what a good person I am and how I have goodness flowing through me from the universe all the time. I just let the thought go that I should be a different size. We are all made good. I am truly more aware of being apart of the vast universe and all the energy and goodness that we are a part of. I do feel like a drop in the ocean, a star in the universe, an eternal part of all that is good and loving. Though the body passes on, the soul and energy behind our breath, that part of us that is love moves along forever. At least that feels true to me now and it is a comforting belief. Although I continue to work towards getting into clinical trials and finding the next best steps in my health journey I also just enjoy each moment and the journey along this stretch of life filled with such joys. My husband, parents, children, grandchildren, friends, yoga, pilates, whole foods, cooking, water, gatherings, art, music, dance, travel, gardening, reading, Seahawks....... so much fun and beauty, so many options of how to enjoy ourselves all the time. Not knowing how long we have to enjoy all that we love in this lifetime is such a great invitation to be present in the moment and grateful.

Happy Holidays!!!

A very busy and wonderful time of year and I'm as happy as can be.

I'm doing fairly well with daily health and wellness. My diet is not 100% healthy but I continue to work toward balance in enjoying life and my community of friends and family while caring for my health. I've been successful at turning my gingerbreads into a sugar free healthy holiday treat and I still love them. I'm plagued by fatigue and gastrointestinal  discomfort at times but I focus on other things like walking the Seward Park loop, riding my stationary bicycle while watching Oprah's Super Soul Sunday show or other spiritual folks programs. I try to meditate and take sauna's for further relaxation. I took a great Mindfulness Meditation class at Swedish. Staying relaxed I'm sure is a part of the "no growth" we continue to see with the tumors, when August CT scans were compared to February ones.

I've chosen a new oncologist, Veena Shankaran is with Cancer Care Alliance. (SCCA) She is the most knowledgeable about NET's yet.

I've applied for 2 clinical trials (Stanford and National Institute of Health in Maryland) and will find out in mid January if I've been accepted. These are both for the new head to toe scan that will show everywhere I have NET's to an increased level. With the results of this scan we will assess next steps. I may be headed to Germany for what is called the PRRT treatment. I'll get into what that is later. Or look it up on PRRT.org.

Peter and I have been doing our little trips we love to do on the week ends the last one to Leavenworth to stay at the Sleeping Lady Resort and watch the Christmas Tree lighting ceremony. We rode in a sleigh pulled by a beautiful horse across a snow covered field. In January we will return to Maui for Peters 58th Birthday. Peter's band has continued performing. We moved our little C-Dancer boat back to moorage at Twin Bridges near Anacortes. That will allow us quicker access to the San Juan's  again as the weather permits.

Today is my daughter Jessica's 31st birthday and her daughter Paityn is 14 months a real darling. They both bring me much joy. Thaddeus and his children Kimani 4 and Ayana 20 months were over last night to cheer the Seahawks on with Grandpa Peter, Grandpa Jerry and I.

I must get back to wrapping presents and making gingerbreads for now. I have a deadline you know. :-)

Happy Holidays!!!

Clinical Trial of Galium 68 scan - I'm applying

NIH Clinical Trial: Unique Opportunity for Carcinoid & NET Cancer State-of-the-Art Scan

Imagine having a nuclear scan that can change the course of your health and future -- at no charge! Carcinoid and NET (neuroendocrine tumor) cancer patients have this opportunity by participating in the National Institutes of Health (NIH) clinical trial, Evaluation of 68Gallium-DOTATATE PET/CT for Detecting Neuroendocrine Tumors (NETs).  The NIH study is especially timely as the radiopharmaceutical Gallium-68 was granted orphan drug status by the US Food and Drug Administration (FDA) in November 2013. This designation is significant because it may lead to faster approval of the agent, which would greatly benefit carcinoid/NET patients in the United States.

For those who are living with a NET or suspect they have a neuroendocrine tumor the “gold-standard” of nuclear imaging in the United States is the octreoscan.  Used in Europe,  Canada and Australia, the Gallium-68 (GA-68) DOTATATE PET/CT scan is a higher-resolution scan, able to detect tumors not seen on MRI, PET, CT, or octreoscans.  Because the Gallium agent binds very strongly to the somatostatin receptors 2 and 5 of the neuroendocrine tumor cells, it can more effectively detect very small tumors and metastases.  This is very important for NET patients as from the initial onset of symptoms -- including gastrointestinal pain, flushing, diarrhea, and asthma-like wheezing -- the average time to proper diagnosis exceeds 5 years.  It is likely that tumors will spread (metastasize) and grow during this time.

Electron Kebebew, MD (pictured), Chief of the Endocrine Oncology Branch at the Center for Cancer Research, National Cancer Institute and Head of the Cancer Genetics/Genomics Section, is the Principal Investigator for the NIH Gallium 68 trial and Samira Sadowski, MD, a Clinical Fellow, has spearheaded the 68Gallium DOTATATE protocol as the lead co-investigator.

According to Dr. Kebebew, “the possible benefits of Gallium-68 DOTATATE scanning are earlier diagnosis for symptomatic patients and the ability to tailor treatments for patients based on a more accurate assessment of tumor burden.”   Dr. Sadowski notes that by “finding additional lesions or an unknown primary, physicians can manage patients based on what has been found.”  Gallium-68 DOTATATE is particularly sensitive at locating small lymph node metastases, adds Dr. Sadowski.   The GA-68 scan can detect tumors as small as 4 millimeters.  This information can be used in targeting treatments for each patient. 

The GA-68 scan may also provide additional information, says Dr. Sadowski, such as if a tumor is well or poorly differentiated.  Poorly differentiated tumors are more aggressive and with the GA-68 scan the likelihood of a tumor’s growth may be determined.  According to Dr. Kebebew, the GA-68 scan is also important for NET patients who have had surgery to remove metastases but have an unknown primary tumor.  And for patients with known recurrence, he says, GA-68 DOTATATE may show much more than other scans.  As NET cancer varies significantly from patient to patient the results of the GA-68 scan, along with other scans, medical history, blood work, and 5-HIAA urine test results, enable the medical team to offer each patient a personalized approach to treatment options.

The purpose of the trial is see how well the experimental imaging agent, 68Gallium-DOTATATE, detects an unknown primary NET and metastatic NETs in the gastrointestinal system and pancreas.  Surgery is considered essential in the treatment of neuroendocrine tumors, when possible, and by finding NETs earlier, the success of surgically removing tumors is increased, both enhancing patients’ quality of life and length of life.

Adults over 18 years of age with a suspected NET, a NET identified by biopsy, or family history of NET (including MEN1 and Von Hippel Lindau) are eligible for the study.  The goal is to enroll 100 participants and studies have already begun on 30. Participants in the trial will undergo 3 scans: a standard CT scan of the chest, abdomen, and pelvis; an octreotide scan; and a 68Gallium-DOTATATE PET/CT.  For the Gallium scan the study drug is injected into a vein, usually the arm.  Low-dose X-rays go through the body.  For about 40 minutes a large, donut-shaped device takes images of the body.  The entire session takes between an hour and a half and two hours.

Images from the three scans are compared.  Patients also undergo a series of blood tests, specifically markers for neuroendocrine tumors such as chromogranin A, neuron-specific enolase, gastrin, and pancreatic polypeptide.  The urinary 5-HIAA is also used to test serotonin levels. Upon completion of the nuclear imaging, blood work, and 5-HIAA test, physicians at the NIH in discussions with local treating physicians can usually recommend the best course of treatment for each participant.  This treatment can be done at the NIH or at another facility of the patient’s choosing. Patients in the trial will have 1 follow-up visit at the NIH each year for a period of 5 years.  This monitoring will include a medical exam, blood work, and a CT scan. 

For further information about the trial, CLICK HERE.

Questions about the trial and eligibility can be directed to Candice M. Cottle-Delisle, RN, cottlec@mail.nih.gov, 301-402-4395 or Electron Kebebew, MD, kebebewe@mail.nih.gov, 301-496-5049.

 

Gallium-68 DOTATATE PET/CT:  Two Patients’ Perspectives

Suzi Garber

Suzi Garber of Warminster in Bucks County, Pennsylvania is extremely grateful to have participated in the GA-68 DOTATATE PET/CT trial at the NIH – she doesn’t easily qualify for clinical trials because in addition to having carcinoid, she also has heart disease, diabetes, and has had endometrial cancer.  She has been living with a NET diagnosis since 2006, having had surgery to remove her primary mid-gut tumor 7 years ago. 

Although her pancreastatin and chromogranin A markers are on the rise, recent scans have shown 6 tumors in her liver.  “Why,” asks Suzi, “does nothing else show on the scans when the numbers are going up?” The GA-68 scan confirmed what other scans have shown, only the 6 tumors in the liver.  And this is critical information for Suzi and her medical team as she goes forward with treatment options. 

Being at the NIH was also an eye-opening experience – “our tax-dollars at work.” First and foremost, Suzi recommends studying the map each trial participant is given.  The buildings are large and can be confusing to a newcomer.  As the Gallium-68 radiopharmaceutical has a short half-life it is imperative to arrive for the test on time! Suzi pointed out the extreme security procedures of entering a government facility –  when driving, a person’s car and luggage will be screened.

She also noted “if you choose to stay in the hospital, only the participant can stay there. Your friend/relative will have to stay elsewhere. But you are not under obligation to stay there; you both can stay off-campus. It’s best to stay close due to the heavy volume of traffic. If you’ve got a GPS, use it. There are scads of construction spots in the area.”

Suzi advises trial participants to send copies (and she stresses copies, not originals) of everything in one’s health history to the NIH before the trial, including illnesses, surgeries (NET and non-NET, even dental surgeries), other NET treatments, and family history.  “Let them know if you have a port, an artificial heart valve, or reconstruction anywhere in your body,” she says. 

The state-of-the art PET/CT scanner, the willingness of the medical staff to spend time with each patient and answer all questions, a special center that uses an ultrasound wand to locate veins for patients who have a hard time with the placement of IVs, attention to the multilingual needs of patients, and the quality of the food at the NIH all were all part of a very positive experience for Suzi.

“I’m on Social Security and could not afford $5,000 or more for the care and scans I received at the NIH and will receive over the next 4 years.”  And thanks to the trial she will continue to have high-quality medical care and follow-up for her NET disease over the next 4 years, all at no charge as part of the trial.

 

Lori Wolfe

For Lori Wolfe of Syracuse, New York, having the Gallium 68 scan is an opportunity to identify the site of her primary NET tumor which has not yet been found.  Twenty years of extreme chronic diarrhea led Lori from doctor to doctor in search of answers about her health issues.   She was tested for everything except carcinoid and diagnosed with irritable bowel syndrome.  At age 50 she was told by a new gastroenterologist that she needed a colonoscopy and this doctor began to suspect carcinoid following additional blood work.  Lori was started on Sandostatin LAR which has controlled her diarrhea sometimes but not always.  Through the Western NY Carcinoid Support Group, Lori learned about the NIH clinical trial with the Gallium-68 scan.

“It was a trial getting into the trial,” says Lori.  The records that she so carefully collected and sent were lost by FedEx.  She was especially concerned about losing a spot in the trial due to the lost records. UPS proved to be the better provider for Lori!  And a week before Christmas she got the long-hoped for call. Upon being told she qualified for the NIH trial and was accepted, Lori screamed into the phone, “This is the best Christmas present I could get!”

Lori has lots of practical advice for anyone who will be participating in the NIH clinical trial.  She and her husband drove to Maryland and stayed in a hotel about ten minutes from the NIH.  “Be sure to leave extra time when traveling to the NIH during rush hour,” suggests Lori.   And be prepared when driving to have both your car and any luggage in the car go through the government security screening.  This process can take half an hour or more depending upon the time of day.

For the scans, Lori advises participants to wear a comfy pair of sweatpants; pants with a zipper or other metal cannot be worn.  Her guidance for women is to wear a sports bra as bras with metal clasps are also a no-no.  And you might wish to leave jewelry at home as this cannot be worn during a scan.

For the 5HIAA urine test, Lori found that she needed both ice and something to put the ice in.  She recommends bringing your own cooler bag (big enough for the jug!) and plastic baggies that can be filled with ice to keep the jug cool.

If participating as an outpatient, reimbursement for travel, hotels, etc. can either be sent to participants by check (but will take 2 months or more to arrive) or you can receive reimbursement at the end of your stay but this may possibly require additional hours waiting if you are done early in the day or midday.

Still awaiting the results of the Gallium-68 scan, Lori’s other test results have been inconclusive although an earlier MRI had shown a spot on the pancreas. Lori feels she has gained enormous benefits by being part of the trial, not only is she receiving cutting-edge scans at no cost she believes her participation in the trial will benefit other patients in the future from the knowledge gained by physicians and researchers conducting the trial.
 

If You Participate in the Trial: Some Tips and Things to Know

• It takes about 3 days to participate in the trial at the NIH including the CT scan, octreoscan, and Gallium scan as well as lab work for inpatients; 1 ½ days for outpatients

• If you live locally, the trial can be done over a longer period

• The Gallium-68 DOTATATE PET/CT scan is done first because it has the shortest half-life

• The octreoscan is done over a 24 hour period, with images taken at 4 hours and 24 hours

• Be sure to take your 5HIAA urine jug with you throughout the day during testing

• If you are an inpatient and bring medications to the trial, they will be taken and held for you and the NIH pharmacy will provide you with medications

• Most trial participants stay in area hotels, some participate on an in-patient basis (both for those with financial considerations and for those already at the NIH who have been recommended  for the trial)

• Participants staying at hotels will be reimbursed up to $50.00 per night; a few local hotels offer special discounts

• Participants who drive to be part of the trial will be reimbursed at $.40 per mile

• Participants who fly to be part of the trial will be reimbursed at government rates

• Participants are reimbursed at $8.00 per day for meals

• After the initial participation in the trial, patients can book their travel through the NIH travel agency, Omega

• Participants are given maps of the NIH facility (take time to review these as being present at the time indicated for each component of the trial is essential)

• The NIH facility has Wi-Fi access

• There is a Hope Lodge in Baltimore, Maryland where trial participants can stay at no charge but arrangements must be made well in advance

• If traveling with children, inquire about staying at the Children’s Inn onsite

• If you feel up to exploring Bethesda during, before or after the trial, here are some links to area attractions and dining: Things to Do in Bethesda, http://www.downtownbethesda.com/  http://dc.about.com/od/touristattractions/tp/Things-To-Do-In-Bethesda-MD.htm, Things to Do with Kids in Bethesda, From Trip Advisor

• For further information about Patient Services when participating in a trial at the NIH, including parking, shuttle service, gift shops, pharmacy services, and more click here:  http://clinicalcenter.nih.gov/participate/patientinfo/services.shtml

• Foods and medications to avoid before the 5HIAA urine test:

http://www.carcinoid.org/content/preparing-24-hour-urine-5hiaa-test 

http://www.nlm.nih.gov/medlineplus/ency/article/003612.htm

Article on the conference I'm going to tomorrow.

Charlotte conference on the cancer that killed Steve Jobs

By Karen Garloch

By Karen Garloch

Posted: Monday, Sep. 15, 2014

Modified: Monday, Sep. 15, 2014

COLUMNISTS »

Karen Garloch

Karen Garloch writes on Health for The Charlotte Observer. Her column appears each Tuesday.

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On Health blog
(704) 358-5078

- NEUROENDOCRINE CANCER AWARENESS NETWORK

Maryann and Bob Wahmann run the Neuroendocrine Cancer Awareness Network, which holds its national conference in Charlotte Thursday through Saturday.

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Most people think Apple founder Steve Jobs died of pancreatic cancer.

But Maryann Wahmann wants everyone to know that was wrong. He really died of neuroendocrine cancer of the pancreas.

It makes a difference, she says, because neuroendocrine cancer, although often misdiagnosed, has a much better prognosis than pancreatic cancer.

“If treated properly, you can live a long time,” said Wahmann, herself a patient who founded the Neuroendocrine Cancer Awareness Network in 2003.

Wahmann’s group will hold its national patient conference in Charlotte Thursday through Saturday at the Marriott City Center Hotel. About 500 patients, caregivers and health care professionals are expected. (To register, see netcancerawareness.org.)

Although considered rare, neuroendocrine cancer is not as unusual as once thought, Wahmann said. More than 11,000 new patients are diagnosed each year, and as many as 125,000 patients are living with the disease in the United States.

Wahman said she was ill for seven years before she was diagnosed with a form of neuroendocrine cancer in 2001. Before that, doctors mistakenly told her she had irritable bowel syndrome and Crohn’s disease. It’s a common mistake because symptoms, such as diarrhea, are similar.

Jobs often referred to his illness as a “hormonal imbalance,” but multiple respected sources, such as WebMD and Scientific American, give the more specific description – neuroendocrine cancer of the pancreas.

“If Jobs had suffered from the most common form of pancreatic cancer, adenocarcinoma, the chances are he would have died soon after his 2003 diagnosis. But as Jobs later revealed, he had an unusual form of pancreatic cancer known as a neuroendocrine tumor or islet cell carcinoma.”

Most pancreatic cancer arises from the pancreatic cells. But neuroendocrine tumors arise from the hormone-producing islet cells that happen to be in the pancreas. Unlike pancreatic cancer, from which patients often die within weeks or months after diagnosis, neuroendocrine cancer is slow-growing and can be well controlled if caught early.

Many doctors don’t understand the disease, Wahmann said. In 2001, only 10 doctors in the world specialized in the disease, she said. Now there are about 100, including Dr. David Iannitti in Charlotte.

Wahmann and her husband, Bob, run their organization, previously called Carcinoid Cancer Awareness Network, out of their Long Island home, and answer the hotline, 866-850-9555. Their daughter, Tricia, a student at Johnson & Wales University in Charlotte, is vice president.

They chose the zebra for their logo. “In medical school, doctors are taught, ‘When hearing hoof beats, think horses not zebras,’ which means to look for the common, not the uncommon (when diagnosing a patient). Being that a neuroendocrine tumor is rare, we’re thought of as zebras.”

Wahmann said “a lot of patients are very angry” that Jobs chose not to raise awareness about neuroendocrine cancer. “Like Michael J. Fox with Parkinson’s disease … his name could have brought light to it.”

But Wahmann said she understands why some are reluctant to go public. “It’s not glamorous to say that I couldn’t digest my food or I was in the bathroom having diarrhea and that’s why I’m losing weight.”

Going to NET conference 9/18-22 in Charlotte

National NET Cancer Patient Conference info and survey!

Agenda THURSDAY 3:00 - 3:30         Affordable Healthcare Reform:  William Maples, MD 3:30 - 3:45   Q & A with Dr. William Maples. 3:45 - 4:15 Emotional implication of NETS treatment:          Ronda Ayala RN     4:15 - 4:45 Be your own advocate and how to be an advocate for NETS       Judy Goltz, RN 4:45- 5:00 Q & A                                                                                                                    6-9PM               Welcome Reception   FRIDAY AM                                              Moderator: Eugene A. Woltering, MD 7:00-7:45 Breakfast 7:45-8:00   Introduction :Bob and Maryann Wahmann from CCAN 8:00-8:40 NETS-Introduction to the basics:                     Richard Warner, MD 8:40-9:20 NETS pathology: What's important and what's not?:               Chanjuan Shi, MD 9:20-9:30Break 9:30-10:00 Midgut NETs surgery. The technical aspects:                               Yi-Zarn Wang. MD 10:00-10:30 Pancreatic NETs surgery. The technical aspects:                    Michael Choiti  MD 10:30-11:00 Does serial cytoreduction of midgut NETS increase survival?:  ugene A. Woltering MD 11:00-11:30 How NETS affects your heart: Current recommendations for on going scanning, prevention and current therapy of NETS-induced heart disease: HeidiConnollyMD 11:30-12:15 Q & A with panel and moderator 12:15-1:15 Lunch   FRIDAY PM                             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 2:00-2:45 Clinical trials for chemotherapy/biologic response modifier therapy of pancreatic NETS.:Emily Bergsland MD 2:45-3:00 Break 3:00-3:30 New approaches to the treatment of NETS induced diarrhea:                                 Sajeve Thomas MD 3:30-4:00   Somatostatin analogs control symptoms and slow tumor growth: Summary of recent trials:   Alexandria Phan MD 4:00-4:30 Update on NETs markers:What, how many and cross-laboratory validation studies: MiaTepper MBA 4:30-5:15 Q & A with panel and moderator      SATURDAY AM                                                                           Moderator: J.Phillip Boudreaux MD 7:00-8:00 Breakfast 8:00-8:45 The Benefit of Multidisciplinary Teams Treating NETs:           Eric Liu, MD 8:45-9:15 The role of the gastroenterologist in the diagnosis & treatment of NETS: David MetzMD 9:15-9:45Summary of therapy with 177 Lu vs. high dose LAR: The AAA trial:         Richard Campeau MD 9:45-10:00 Break 10:00-10:30   An update on Multi Visceral Organ Transplants (MVOT):                    Rodrigo Vianna M.D 10:30-11:00 My personal experience with MVOT:                                                  Paul Johnson MD 11:00-12:00 Q &A with panel and moderator 12:00-1:00   Lunch   SATURDAYPM                                                                                                                                                                                                                                                                                                                Moderator: Richard Warner MD 1:00-1:30 Investigator-initiated trials of 68 Gallium somatostatin analogs:Where are we going?:Thomas M. O'Dorisio MD 1:30-2:00 Update on studies in the risk of familial NETS:                        Steve Wank MD 2:00-2:30 How to scan for NETs: Primary's and their metastasis:                                            DavidBushnellMD 2:30-2:45 Break 2:45-3:15 Vitamin supplements & alternative therapies:How to assess safety & efficacy: Mary Hardy, MD 3:15-3:45 Spheres vs. Chemoembolization vs. Bland embolization- Which is best? :Charles Nutting MD 3:45-4:15 RFA, microwave,c ryotherapy, nanoknife and other invasive therapies for liver metastasis: David Iannitti MD 4:15-4:45 Q & A with panel and moderator 4:45-5:00 Announcement of next National Patient NET conferencein September2016:Eugene A. Woltering MD and CCAN