About the GA-68 Scan

A few days ago, I had a scan for cancer called a GA-68 or gallium-68 or Netspot. This was designed specifically to detect neuroendocrine tumors. My own results are reported here:  The Results of my GA-68 Scan.

EDIT: There has been tremendous response to these two posts on social media. The most frequent question is “Where can I get a gallium scan?”.  I now can show you two sources:

I figure it might help other people with NETS to explain what this scan is.  If you have had a cancer or know people with cancer, you probably know that a PET (Positron Emission Tomography) scan is used to try to locate tumors and metastases.  The traditional PET scans normally do not work with neuroendocrine tumors because the biology of the tumor is different than most cancers so the standard markers do not function.

One year ago, the FDA approved a different kind of marker for use with PET scanners that is specifically designed for neuroendocrine tumor. The GA-68 (commercial name: Netspot) is an injectable that is a binding of radioactive gallium 68 to a somatostatin analog called octreotate. Neuroendocrine tumors have receptors for the hormone somatostatin in over 60% of patients. The tumors therefore will capture the somatostatin as it passes by and of course the radioactive GA-68 bound with it.  Although some other tumor types and even some body parts (pituitary gland for instance) have receptors, if you are the lucky patient whose tumors have these receptors, you can get a good picture of where the tumors are by tracking the radiation.    The PET cameras take pictures of the radiation in the body.  GA-68 scans have been used in Europe for over 15 years already.  Apparently, they were not considered profitable enough to develop, test, and get approval for in the U.S. until recently.

You are probably familiar with CT (xray Computed Tomography) scans.  These take three dimensional xrays of the body.  The new PET machines are actually PET/CT machines. They take the PET and the CT at the same time.

Before now the best we had for neuroendocrine tumors were CT scans, MRIs, and octreoscans which were a much weaker version of the GA-68 type of scan without the attached CT scan.

Octreoscan vs. GA-68 scan

After my diagnosis, I have had more than six octreoscans (about one per year) and a CT scan every six months and one or two MRIs.  This picture shows the difference between the GA-68 and the octreoscan.

What a difference.  The black dots are areas of high “uptake” meaning attachment to the marker.  My first radiologist showed me my first octreoscan and said “‘nuclear medicine’ is sometimes called ‘unclear medicine’!”  These are not my scans. They were uploaded to Facebook for an example.

Combining the CT scan and the Netspot PET scan in one picture is even more powerful.

The gallium radiation has a very short life.  We patients are given no warnings at all except to drink lots of water so the radiation won’t gather in the kidneys.  NOTE: Although the gallium injectable is more radioactive than the indium-111 used in the octreoscan, the patient actually receives less radiation because the gallium-68 isotope has a much shorter life than the indium-111 isotope.

The old octreoscan routine was to wait until the end of my 28 day Sandostatin injection cycle then I had to take a laxative the night before and fast until I was given the injection. After the injection we waited 4 hours, then had about an hour laying flat on my back without moving in the nuclear scanner. The hour long scan was repeated the next day and sometimes even a third and fourth day.  I was warned that I would need a doctor’s letter to pass through an airport within 30 days of the injection.   What a pain!

The Netspot PET/CT requires no preparation, no laxative, no fasting.  It could be given 15 days after the last Sandostatin injection and they asked that you not use an octreotide “rescue” injection for a day. You are given the injection, wait an hour, then climb onto the scanner bed pictured above and lay still for less than 40 minutes.  That’s it! Unlike a normal CT scan there are no breathing instructions during the scan (“hold your breath”, “breathe”).  The machine is a bit bigger than a CT scan but is open on both ends so there is no claustrophobia.

Edit: 2017-06-05 Like NETs patients, each medical facility is different. My scan was at Rocky Mountain Cancer Center where Dr. Liu works. Someone just told me that a facility in Arizona is telling patients that they must wait 4 to 6 weeks after their Sandostatin injection to get a Netspot scan.  Also note that Medicare is paying for these scans but how much is paid and the difficulty of getting approval may depend on your add-on plans. As far as all health insurances, I have heard that the scan part is usually covered (perhaps around $1,000). But the Netspot injection is separate and is much more expensive. That is the part insurance companies are unsure about.  Additionally, of course, each medical facility may charge differently for the scans.

NOTE: Josh Mailman who works in the nuclear medicine field and has NETs and is very active in our NETs community shared the searchable map link above and these links:

I am not a doctor or medical person (perhaps a professional patient these days).  The above is my “not a doctor” explanation of some very complex things. I hope that it helps and is not incorrect in any substantive way.

May we all have the best possible outcomes,
Cy

 

 

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The Results of my GA-68 Scan

Dr. Eric Liu & Cy Ball 2017-06-02

Today, I met with Dr. Eric Liu and discussed my GA-68 scan results.  Both quite positive  and surprising results left me feeling very happy.  It could have been much, much worse.

  • Found my primary tumor after 6 years! Instead of a mid-gut carcinoid, I am now a pNET (pancreatic neuroendocrine tumor). I did not expect that. Although this is what killed Steve Jobs and is very often more dangerous than mid-gut carcinoid, it is not a great worry for me because it is small and at the very tail of my pancreas.  Dr. Liu says my pancreas looks as healthy as his.
  • There is some progression. There is some spreading of the disease to several places in my body. Dr. Liu calls them freckles. Nothing very serious it seems.
  • There are small tumors in my bone in a couple of places. The bone above my eye and two places in my spinal column (in bone, not on spinal cord! Whew!)
  • The CT scan was wrong last November. The tumors that did not show on that CT scan, though they had appeared in earlier scans, are still in my liver but not looking very active.
  • The nodules on my thyroid did not light up on the scan.  This means that they are not NETs.  I think Dr. Liu is convinced that they are a benign form of thyroid cancer.  We will continue to watch them.

We will change surveillance to a CT scan once a year and continue with the Sandostatin which is still working. If I get sicker or have more pain, the good scan indicates that I am a good candidate for PRRT (Peptide Receptor Radionuclide Therapy). PRRT works identically to the GA-68 except the gallium 68 is replaced by lutetium 177 (Lutathera) which is much more radioactive and thus capable of killing the tumors. It should be approved in the U.S. within six months which probably means that I can avoid more surgeries.

You can find my explanation of what a GA-68 Netspot scan is here: About the GA-68 Scan

EDIT: There has been tremendous response to these two posts on social media. The most frequent question is “Where can I get a gallium scan?”.  The best resources for this that I can find are: Carcinoid Cancer Foundation: GA-68 LocationsNorthern California CarciNET: searchable map of the U.S.

All in all, I should be able to get on with  my life for a few years with minimal interference from this particular cancer.

May we all have the best possible outcomes,
Cy

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Crowd Noise – My Latest Music

I have completed the first part of the EDM Masterclass by Deadmau5.  It has been all about producing EDM.

The final homework was to produce a new piece. I did it in only 7 days!  This is something like a record for me.

The next part of the Masterclass will be about building a career in EDM.  I will watch and listen, but at 70 years old, I think that I have had plenty of career already and making music will remain a hobby.

Namaste,
Cy

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A Remix of Deadmau5’s Snowcone for Masterclass

Remixes are common in today’s music. In a vocal, the mixer will often just replace the instruments but retain the song structure and rhythm. In one of his lessons, Deadmau5 explains that he feels that a mix should take some ideas or sounds from the music being remixed and producing an entirely new piece.
He supplied the stems (separate instrumental tracks from a song) to his music “Snowcone” and asks the students to take only some parts and produce a whole new piece.
This is my effort. I am really quite proud of it as an original piece inspired by “Snowcone”.

Feedback is welcome.

Namaste

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How did this happen?

Today, I turned 70 years old! How on earth did that happen?  Below is a picture of my wife Laurie whom I blame for my continued existence more than anyone else.  But I also depend on my kids, grandkids and all the rest of my large family (11 siblings) and my friends for their love and support. Of course the medical establishment has done much to keep me going, although I had to learn to battle them when I felt they were wrong.

I just spent 11 days in the Netherlands with Laurie, Derek, Kat and Ansel.  It was a great trip during which we could celebrate Ansel’s 4th birthday, Derek’s birthday and my own birthday. We saw the Van Gogh museum in Amsterdam and saw some of the King Day (big holiday) celebrations in Amsterdam. We spent several days in Haarlem as well and had a wonderful tour of the tulip gardens with the tulips at their peak.

Kat had arranged for Airbnb accomodations in both cities and they were very nice.  The very nice flat in Amsterdam was beautiful but was a 4 flight walkup. The old house in Haarlem had some stairs that were difficult but we managed.

The trip was marred only slightly by some problems with my sciatica. Fortunately, my

spine doctor had supplied me with a prescription for methyl prednisolone. I filled that and took it with me to the Netherlands which enabled me to get around most of the time.   The injection’s good effects are not lasting as long as I would have hoped.

Yesterday was the 6th anniversary of my diagnosis but I had no problems with the Neuroendocrine Cancer on this trip.

Laurie, Margot, Charlie - Easter 2017
Laurie, Margot, Charlie – Easter 2017
Eating Ethiopian Food  with Ansel in Amsterdam 2017
Cy and Margot - Easter 2017
Cy and Margot – Easter 2017

As usual with my list of diseases, the day after I got back, Friday, I went to the oncologist’s for my monthly butt dart (Sandostatin injection).  Tuesday I meet with my oncologist to discuss the neuroendocrine cancer and perhaps the Netspot (GA-68) scan.  Next Monday I restart weekly physical therapy for my spine.  The beat goes on.

May we all have the best possible outcomes,
Cy

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Clean Cystoscopy!

It is a great pleasure to post positive health results in my blog. Not all is doom and gloom. This time I had a good, clean cystoscopy.

Cystoscopy is endoscopy of the urinary bladder via the urethra. It is carried out with a cystoscope.  – Wikipedia

What that means is they insert a camera into your bladder via the urethra.

I had my first bladder cancer check since cancer was removed last September. The check mostly revolves around the cystoscopy.  This showed no cancer!

This is the first time in about 3 and a half years that I have not had the cancer when the doctor looked for it.  I have had to have it removed from my bladder four times and although that procedure is a day surgery, it is really not pleasant.

Bladder cancers are often treated with immunotherapy. In this treatment, a medicine triggers your immune system to attack and kill the cancer cells. Immunotherapy for bladder cancer is often performed using the Bacille Calmette-Guerin vaccine (commonly known as BCG). – MedlinePlus

This does not mean that it will not recur but, at least for now, I will not have to undergo another BCG treatment. I had that last summer and it was not pleasant.  My doctor and I had discussed doing the BCG and adding interferon to it.  I would have been even more sick for six to eight weeks during that treatment.

Other Health News

The spinal injection of steroids in early January has worn off.  I will get another in early April,  just in time to try fly fishing with friends and a trip to the Netherlands.  Before the injection, I had feared that I would have to give up both fly fishing and travel.  I could not walk more than a few blocks even with heavy pain medication.  Now, physical therapy has brought me to a better place although by no means able to walk very far or stand for very long.  The injection made me feel almost normal for a couple of months.

Overall, great health news this week. I will be seeing my NETs (neuroendocrine cancer) specialist within eight weeks. Let’s hope that also remains good.

May we all have the best possible outcomes,

Cy

 

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Rare Disease Day 2017

Today February 28, 2017 is Rare Disease Day.
Several things have occurred today which warrant examination.

  1. The  U.S. Food and Drug Administration (FDA) has approved Xermelo™ (telotristat ethyl) as a first-in-class orally administered tryptophan hydroxylase inhibitor indicated for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy.  This is a pill that will help people with the diarrhea part of carcinoid syndrome (some people up to 40 times a day) while those patients are on somatastatin analog therapy (that’s the octreotide (Sandostatin LAR)  injection that I get every 28 days or a newer injection called lanreotide (Somatuline)).  Big news for those with the syndrome.  Fortunately for me, my syndrome is very mild and occurs very infrequently.
  2. For Rare Disease Day, The Healing NET Foundation has released this video:

    saying this “The main objective of Rare Disease Day is to raise awareness among the general population. The Healing NET Foundation encourages you to share this video of stories and comments NET patients posted on our website and on FB, to let the world know about our RARE DISEASE, Neuroendocrine cancer and Carcinoid syndrome. “

  3. The Lifetime TV channel show “The Balancing Act” had a Rare Disease Day episode this morning which partially featured Neuroendocrine Cancer.  The show is now on YouTube:

Point 1. above show how raising awareness of our disease gets doctors and drug companies looking for ways to treat it.

Points 2. and 3. are good parts of the ongoing efforts to raise awareness of the disease.  It exists. It affects people’s lives.  We all need more treatment options.

May we all have the possible outcomes,

Cy

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After Eight Lessons – Music

As I told you in Music Masterclass for the New Year, I am taking an online video masterclass in the production of EDM (Electronic Dance Music) taught by a well-known musician in that genre, Deadmau5.  I have completed eight lessons of the 26 lessons.

Taking a break from lessons and homework, I created the music in the link below.  The music attempts to use the many things that I have learned about EDM melody, lead, and bass line creation as well as a lot of material on programming synthesizers both modular and not, both hardware and software.  I have no synth hardware and Deadmau5 really insists that hardware sounds better. Part of the homework has been to “make sounds no one has ever heard before”.  You will hear some of that in the music.  If you are not familiar with EDM, you may be surprised at the music.

In the next lesson I will be learning the EDM beat (basically one kick drum hit per quarter note and claps and/or snare every second quarter note with added hihats.  All of that varied a bit.) Also, how to create my own unique, “signature” kick drum sound from a two or more samples of kick drums and some distortion.

Happy belated Valentine’s Day,

Cy

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Working on Back Pain

Today is the first day since last April that I have not taken any form of pain killer after waking.

The medications have ranged from OTC acetaminophen, naproxin, ibuprofin to prescription Tramadol and Vicodan.  — I have mentioned before that I have experience severe back pain since April last year. (My how time flies!) It got really bad during our last trip to Scotland in May. Of course. a lot of walking is involved while touring and I spent too much time sitting and waiting while my family toured and walked.

The pain was two types: the shooting lightning strikes down the backs of both legs – buttocks, hamstrings, calves; and a slightly less severe pain that just settles in the same places and also the lower back. For months I have not been able to stand long enough to make a piece of toast in the kitchen.  Before last May, I was accustomed to walking three to four miles every day.  Since then, when I use a hiking stick or sometimes two sticks, I could walk around the block. On my best days I could walk a mile.

Since then, I have tried many alternatives. My PCP provided a list of stretches for the back, some of which relieved some of the pain for a short while when I rose in the morning. He also tried a course of Prednisone tablets. This relieved the shooting sciatic pains for a month or so but the rest of the pain just seemed to settle in and take control. We tried a muscle relaxant with no good result.

I visited a chiropractor for two months twice a week with little or no relief. He finally told me that he could not find a way to help me.

Finally, both the chiropractor and my PCP referred me to a physiatrist. This is a traditional doctor MD who specializes in physical medicine and rehabilitation. They are often spine specialists and avoid recommending surgery except as a last resort. I must admit that I had never heard of this specialty. We learn a lot in our health journeys, perhaps especially as we age.

The doctor I chose three months ago has proven to be very helpful. First he order a spine specific CT scan.  Bearing in mind that I have already been told that I have arthritis in all of my joints and that I have DISH (Diffuse Idiopathic Skeletal Hyperostosis) which is a disease common to 90 year olds and which gradually turns your ligaments to calcium, the CT scan report says:

  • Mild scoliosis (this is from birth but not causing a problem).
  • Mild arthritis
  • Bulging disks
  • Retrolisthesis – movement of the vertebrae from their proper place in the lumber region which causes:
  • Stenosis – abnormal narrowing of the tube through which the spinal cord passes.

In my case, the stenosis is considered severe.  Apparently, the normal opening for the spine is greater than 15mm but mine on the last vertebra is 5mm.  This is what is causing all the discomfort.

The physiatrist immediately started me on physical therapy and gave me a few days of a drug called methylprednisolone.

The physical therapy has been going for about eight weeks, once a week.  We have made definite progress and mostly removed the pain from my calves, partly removed the pain from my hamstring and removed most of the pain from my right leg.  The left leg and rarely the right leg still gets shooting pain in the hamstrings and occasionally severe pain in the calf.  My buttocks still get quite a bit of pain.  I still could not stand for more than about three minutes.

The methylprednisolone removed the pain almost completely for a few days but it gradually returned full force.  The drug also made my stomach very sick for a week.  The doctor told me that the results with drug indicated that I could be a candidate for spinal injections.

Yesterday, I received corticosteroid injections in my spine. Today I have only the smallest pain with not much problem standing or walking.  WOW!!!  Unfortunately, there is no way to predict how long the therapy will work.  The doctor already told me to schedule more injections before I go to Europe in late April.  I will continue the physical therapy because I am learning to sit, stand and stretch in ways to keep it from getting worse again.

This is not the end of the journey but I certainly appreciate a pause, however long, in the discomforts.

May we all have the best possible outcomes,

Cy

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Music Masterclass for the New Year

Throughout the past few years, my interest in music has remained unabated. If you are a regular reader, you know that I produce a new piece from time to time and that I have set up a store to sell the music and, of course, the soundcloud account for everyone to listen to my productions.  This new year, I have decided to up my game.  January 3, I enrolled in an online music masterclass: “Deadmau5 Teaches Electronic Music Production”.

deadmau5 Teaches Electronic Music Production | Official Trailer

Watch this video on YouTube.

Deadmau5 (pronounced “deadmouse”) is a well-known Electronic Dance Music (EDM) producer and performer.  He has founded his own record label “Mau5Trap” and performs to packed stadiums, has received several awards and nominations and has been on the cover of “Rolling Stone”.

The course consists of 23 video lessons by Deadmau5 with a downloaded pdf workbook for each lesson. I am currently on lesson 7 of the masterclass and I already have learned a some techniques about how to compose a melody for EDM and how to extract and develop a bass line and a lead from the melody you have developed.  I find that I was doing it a more difficult way before this.

Because I have been composing music “in the box” (in the computer) for about six years, I know some of the techniques and tips already. For instance my current masterclass lesson 7 “Introduction to Synthesized Sounds” mostly covers things that I am familiar with. There is always something to learn though.  As part of this lesson he develops one of his signature sounds called the “deadmau5 pluck”.  He does it rapidly without a ton of explanation because he’s really just demonstrating many of the features found on synthesizers.  I plan to spend part of today (maybe also tomorrow?) learning to do this on one or more of my synthesizers. Note that I am talking about software plugins that are synthesizers, not the hardware keyboards.  I don’t have a hardware synthesizer.  Apparently, deadmau5 has a large collection of hardware synths.  Hardware is expensive but needed for performing and he also seems to prefer the hardware for sound development.

EDIT: the “deadmau5 pluck” took only a couple of hours to get a very similar sound.

I hope to develop some music that I can publish very soon as part of these lessons.  It’s great fun!

 

Let’s all have the best possible outcomes,

Cy

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