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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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.