Another Netspot (GA68) Scan, Next PRRT

The term “Scanxiety” is often used among cancer patients.

Our disease is often tracked by a confusing array of scans.  I personally have had CT scans, ultrasound, MRI scans (not anymore, I now have a pacemaker), octreoscans, a bone scan, and PET/CT Netspot scans (see About the GA-68 Scan).

“Scanxiety” obviously refers to the anxiety, worry about what the scan will reveal. I try to remain optimistic but when you know the disease is incurable, optimism means no progression and for the test eight days ago, I actually suspected that there is some progression (disease is worsening).

I met with Dr. Liu today and, sadly, I was right.  However, the report says “mild progression” and Dr. Liu says “tiny progression”.  Here are some pictures but be advised that only an expert who has reviewed hundreds of these should try to interpret them:

These scans have several ways of pinpointing tumors.  The black and white below can be turned 360 degrees so you can see tumors that might be hidden by organs. The color ones really show up brightly as you scan through the body from head to knees.

The red marks show new tumors, behind the left eye and on the abdominal wall, Some others may have grown a little.  The larger black spaces are organs, not tumors.



The tumor behind the right eye was found last year. The tumor just a little lower behind the left eye is new.

So… What now?

Dr. Liu has put me on the list for a treatment just FDA approved in January 2018 although it has been used in Europe for maybe twenty years. The treatment is called Peptide Receptor Radionuclide Therapy (PRRT).  I will be able to get it sometime after the new year. A person is eligible for PRRT if they:

  • Have metastatic/progressive NETs (see above)
  • Netspot (GA68) shows positive images of the NETs (see above)
  • bloods tests show that the patient can handle the radiation

I check all those boxes.

What does PRRT do?

Just like the GA-68 scan, PRRT relies on neuroendocrine tumors having receptors for somatastatin which is a protein or peptide our body makes. An artificial version (analogue) of the peptide is combined with a small amount of radioactive material called a radionuclide (currently, in the U.S, this Lutetium 177 (Lu-177).  This pharmaceutical is injected into the patient. It travels through the bloodstream and binds to the tumor’s somatastatin receptors which delivers a high dose of radiation directly to the tumor.

This technology for both GA-68 scan and PRRT is called Theranostics. The GA-68 scan (low level radiation) is diagnostics.  The PRRT (high level radiation) provides the therapy and they both use the somatastatin analogue. The same technique with different drugs will soon be offered for prostate cancer.

How is PRRT performed?

The therapy product now has a brand name of Lutathera.  The protocol approved by the FDA is a series of four PRRT treatments spaced about two months apart.  In the U.S., it is typically a full day outpatient treatment.  Our kidneys are most susceptible to damage from the radiation, so the patient is given an amino acid solution intravenously which will protect the kidneys.  Unfortunately, the amino acid can severely upset the stomach, so the anti-nausea medications are given first. The treatment itself is given after the amino acids and is about a 30 minute injection which is then followed by more amino acids and anti-nausea medicine.  The full treatment lasts about five hours.

Lutathera is radioactive! After a treatment, you are expected to sleep in beds separated by at least 3 feet and no sex for seven days. Keep small children away  from the toilet that the patient uses for 2-4 days. Stay 3 feet away from other people for 2-3 days. Stay away from children and pregnant women for 7 days.  Clothes and sheets must be washed separately.  For a good list of restrictions, read here: University of Michigan Lutathera Discharge Instructions. If you fly, the TSA will detect that you are radioactive for over a week, I think.

PRRT is not a cure. Like so many things involved with NETs, each patient is different.  They say that over 70% of the tumors have the somatastatin receptors needed. Even within one patient however, not all tumors are guaranteed to have receptors.  The treatment can be repeated, which is good.

May we all have the best possible outcomes,

Cy

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No Recurrence from Bladder Cancer

Today, I had a checkup with my urinary surgeon.  Another cystoscopy — UGH.  I had been really nervous before this examination.  The surgeon had told me that if it came back, he might have to remove my bladder.

However, by the end, it was a pleasure.  The bladder cancer has not returned in two years since it was last removed!!! Prior to the last surgery, it had occurred four times, about every six to eight months.

With every month it does not recur, the odds are lower that it will recur.

My sincerest thanks to all who think, pray and otherwise wish me well in this journey.

May we all have the best possible outcomes,

Cy

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Generative Music- a YouTube Playlist

I have organized the modular synthesis videos that I have created and uploaded to YouTube.  These video show the VCV Rack synthesizer screen as it models a hardware synthesizer to play what I have built.  VCV Rack is a software model of hardware called Eurorack Synthesizer.  If I had all of the hardware that you see in those videos, it would cost thousands of dollars.

With a modular synthesizer, the musician puts together discrete modules that might all be built into a more normal synthesizer that you see on stage with musicians.

Having this software model, I have spent months learning it.  Interestingly, most of these pieces just took a few hours or days to build once I knew the modules and had the idea.

Here is the playlist. Each piece is very different from the next.

Playlist: In the Zone
Watch this playlist on YouTube

 

Blessings,

Cy

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Pluck – more generative music

Today  I uploaded a new generative music piece for both YouTube.com and Soundcloud.com.

That VCV Rack modular synthesis software is quite addictive.

This time, I started with the simple intent to just create a sound called the ‘Deadmau5 Pluck’ which I learned to do last year when I took the Deadmau5 EDM masterclass at masterclass.com.  It was pretty easy and I added a random tune generator.  Of course then it needed a bass, so I added that doing something new to me.  Drums were a must at that point so I added a kick drum and made a snare drum up by modifying the noise output of the Turing Machine that was creating the original tune.  That was a fun exercise.  Then of course the piece needed needed some more movement and voices so I created those using  different generative technique.   A simple project turned complex.

I call it ‘Pluck’ because of my original purpose.

Soundcloud:

YouTube:

Pluck

Watch this video on YouTube.

May we all have the best possible outcomes!

Cy

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Fascination

Last week I uploaded a new generative music piece for both YouTube.com and Soundcloud.com.

That VCV Rack modular synthesis software is quite addictive.

This is another piece of generative music which I call ‘Fascination’  because I cannot stop listening to it.

Soundcloud:

YouTube

Fascination

Watch this video on YouTube.

May we all have the best outcomes!

Cy

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Information Sources for Neuroendocrine Cancer

In the last couple of years, I have been co-leader of the Colorado Carcinoid Cancer Support Group (CCCSG).   I have developed the habit of always sending a list of (usually reliable) information  and support sources about our disease.

The year I was diagnosed, 2011, most of these sources did not exist or were not generally known (NETs itself was not known by most people including medical people).  The ACOR listserv and the Carcinoid Cancer Foundation were the only reliable things I could find.  I got information from these and from conferences that CCCSG sponsored in Denver and from the members of CCCSG. My own doctors claimed that they could give all the information I wanted, but I soon found that they knew less than I did.  It seems to me that because they were strictly evidence based medicine believers, they did not think they needed to know anything about NETs.  At the time, the only thing on their checklist was Sandostatin and perhaps TACE (Transarterial chemoembolization).  I eventually knew enough to know that I had to switch from that oncologist and the HMO she works for.

Times have changed.  More treatments and diagnostic tools are available now and more are under development.  There are many more sources of both information and support for NETs sufferers.  One still has to be careful of old or incorrect information but things are better.

So I have added a page to this site listing the sources (see the menu above.) I also include it here:

CAUTION: Fortunately for us the medical treatments for NETs are being developed rapidly at this time. There may be out of date information. Especially in the videos which are 1 to 4 years old. They are still good starting points.

Colorado Carcinoid Cancer Support Group

The Carcinoid Cancer Foundation (carcinoid.org) Highly Recommended. It has a NETs doctor database here: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

The Healing NET Foundation (thehealingnet.org) This has info for both Patients and Professionals. We encourage you to download and read their NET Primer. They also have a new guide to the PRRT treatment,

The NET Patient Foundation has good information.

Download this book (very technical, you may want to recommend to your physician):

Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management

National Institute of Health has a good online book about NETs/Carcinoid Tumors.

The North American Neuroendocrine Tumor Society Has treatment guidelines for doctors. Now a couple of years out of date.

Neuroendocrine Tumor Research Foundation Good resources, including a doctor database here: https://netrf.org/patient-resources/doctor-database/

By Pharmaceutical Companies

Carcinoid.com – supported by Novartis Phamaceuticals

XERMELO, a treatment for Carcinoid Syndrome Diarrhea by Lexicon Pharmiceuticals

The NET Alliance – A Novartis Oncology Initiative

Videos

Carcinoid Cancer Foundation Presents ABC’s of Carcinoid and NETs

Carcinoid Cancer Foundation – Carcinoid Syndrome

Carcinoid Cancer Foundation Presents Surgery and Treatment Options

Dr. Liu explains PRRT

Blogs

Ronny Allan – Living With Neuroendocrine Cancer – Very well researched, informative.

Cy Ball – Music – A blog about music and cancer – This is my own blog, of course.

Support Groups

Support groups can offer emotional support as well as information. Be careful, although many groups are monitored by doctors, the information shared by patients may not be accurate.

The oldest group is probably an email listserv run by the Association of Cancer Online Resources.

Join Here (http://acor.org/listservs/join/33)

There are several Facebook groups:

Dr. Liu’s Zebras

Carcinoid Coffee Cafe

NET Patients Sharing Knowledge & Exerience (This is more about knowledge than support).

Carcinoid Cancer Awareness Network

Goblet Helpthefight Carcinoid – this is about Goblet Cell, I do not know much about it.

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Two New Music Videos

This week, I finally got around to putting music videos of my last two songs from last summer.  I like the music that I did a lot.  The videos are only pictures of the covers but it helps to put things on YouTube.

The first, Space Hop, was a remembrance of the Sputnik satellite.  I was in seventh grade at the time and a big science geek already.  I actually wrote a poem about Sputnik.  The music also contains the sounds of all the space travel movies I have seen since.

Space Hop

Watch this video on YouTube.

This second one was celebrating the first birthday of our granddaughter Margot.  I tried to capture a little of the joy of a young girl.

Margot

Watch this video on YouTube.

May we all have the best possible outcomes,

Cy

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Generative Music

Yesterday, I uploaded a new piece of  generative music called “The Blues I” to YouTube and Soundcloud.  they can be viewed/listed to below.

Sooo… what on earth is generative music? You can think of it as music that is generated by a process.  In this case, it is generated by software called VCV Rack. This free software models hardware called a Euro Rack synthesizer which is a modular synthesizer.  Modular Synthesizer?  Well that is an electronics rack and all the electronics that you might find in a more normal commercial synthesizer which most bands use these days. The difference is that the user puts the electronics parts (modules) into the rack and uses movable jumper cables to connect them in any way the user wants.  Thus the user can make a very large array of sounds.  The modules start with oscillators for the sound wave creation (sine waves, square waves, triangle waves, saw waves, etc), filters, envelopes, low frequency oscillators, voltage controlled amplifiers to modify the sounds.  After you have those, you can add many more sophisticated modules.

VCV Rack is still in devlopment (version 0.5) but it already has a large following and a goodly number of developers making new modules for it, some free, some for sale, some for a donation.  It is completely addictive!  You will see the model I built for the music in the YouTube below.

I built in the basic beat and the bass with a small amount of randomness to happen over time.  The lead voices (I designed  what they sound like) use randomly generated notes for their parts constrained only by the beat and the musical scale that I chose.  Hence it is generated music.  I was surprised at how musical it sounds.

YouTube version:

The Blues I

Watch this video on YouTube.

Soundcloud:

Hope you find it interesting.

Namaste,

Cy

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Successful Surgery

Spinal surgery yesterday, going home today.

If you follow this blog, you know that I have been struggling to get a surgeon who would help me with my spinal and sciatic pain.  Although the surgery is simple (as spine surgery goes), my neuroendocrine cancer makes me a “special case” because there’s a tumor in L3 and the surgery is for L5 – L4. A surgeon who refused to see me told me to see Dr. Anant Kumar.  He takes us “special cases”.  He agreed to take me and it seems to be working well.

Here is the problem we are trying to solve. It is called spinal stenosis. It means that the channel that the spinal cord runs in is narrowing and thus squeezing the spinal cord.  In my case the canal Vertebral Foramen through the L5 – L4 was narrow for 4 reasons:

  1. Because of disk deterioration the L4 vertebra had moved one way and the L5 had moved another, thus narrowing the channel where they meet by quite a bit to 5.5 mm when it is supposed to be greater than 13 mm.  The procedure did nothing to attack that directly If more surgery  is needed later, it would be fixed by the complex of wires and screws.  We have done a simpler thing on Monday.
  2.  Due to aging, the material in the channel has expanded.  This is cells growing larger and is called hypertropy. The procedure was to scrape out much of the material in the L4-L5 vertebral foramen.
  3. There was a 14mm cyst on the L4-l5 facet joint caused by friction which happend because of the deteriorating disk.  That was removed because it caused pain.
  4. There was some bone spur caused by arthritis on these bones which was removed also because is caused pain.

The anesthesiologist, Dr. Santangelo took extreme care knowing that I had neuroendocrine cancer and that I had had a carcinoid crisis once before.  I am told that two times the blood pressure did drift down where it shouldn’t be and he had to put more octreotide in the drip and the BP came back. Remember “special case”?  It was good that the surgery took place at Presbytarian/St Luke’s Hospital where my neuroendocrine specialist, Dr. Liu works.  Dr. Liu has done much to train the personnel about neuroendocrine and carcinoid crisis.

Both of the doctors working with me were great.  I feel very fortunate.  The sciatica pain, the numbness, tingling and weakness in my feet is gone!

Dr. Kumar tells me the arthritis pain in the back will remain.  That’s OK, assuming that I can walk and fish again.

Thursday I can go to my sister Sarah’s for a huge Thanksgiving dinner.  Hurrah!

Namaste,

Cy

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NET Cancer Awareness Day

Friday, November 10 is NET Cancer Awareness Day.

Lela, the co-leader of our Colorado Carcinoid Cancer Support Group, petitioned the Colorado governor John Hickenlooper for a proclamation recognizing that day.

He gave us a good one:

NET Awareness Day Proclamation 2017
NET Awareness Day Proclamation 2017

 

My NETs specialist, Dr. Eric Liu will be giving updates on neuroendocrine cancer on that day and I hope to attend that meeting.

 

Other health notes.

I have struggled with back pain and sciatica for two years.  It is caused by stenosis which is a narrowing of the passage which the spinal cord goes through.  My stenosis is fairly severe.

After trying yoga, physical therapy, chiropractor, spinal injections, pain drugs and mindfulness, I still couldn’t walk or stand without a lot of pain.  For almost three months I have been looking for a surgeon who could make it better with a procedure called decompression.  They scrape out excess material in the canal which mostly comes from ageing.

I have been turned away by a couple of surgeons because of my NETs.  If you have read the blog earlier this year, NETs tumors have spread to my vertebrae.  In fact, at least one of the vertebra involved in the stenosis has a tumor.  Yesterday, I finally found a specialist surgeon who will do it and it is scheduled for November 20, just 12 days from today!  I have high hopes.

If I do not blog more before November 23, Happy Thanksgiving to all!

May we all have the best possible outcomes.

Cy

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