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!
As I have said before, I have taken the deadmau5’s Masterclass in EDM Production.
For students in that class, deadmau5 has started a New Artist contest. Each of us can submit one song. Joel Zimmerman (deadmau5) will judge the entries and the winner will become a track on his newest album from his record label mau5trap and receive $10,000 and valuable music production software. Three finalists in the contest will receive $2,500 and more valuable music production software. Ten semi-finalists will receive $1,000 and more valuable music productions software.
Obviously this is an exciting opportunity. Here is my entry, named after my 1 year old grand-daughter:
The EDM Masterclass that I took is still issuing challenges to students. This particular challenge asks you to make music using the selection of sounds on a sample pack track of sounds. The student has seven days to complete the challenge. Here is the sample pack track (patience, it is 6 minutes long)
I did not realize it at the time there were 3 or 4 other tracks of vocals that we could use. Not knowing that, I made it more difficult than necessary.
I intentionally made it more difficult by choosing not to use any other sounds or instruments that I had and by using only my Reaper DAW and the stock FX and free downloadable FX (no expensive plugins for me).
The synths and bass and drums were all produced using waveforms from the Sample Pack in the free (really good) VSTi TX15Wx sampler or the Reaper stock VSTi ReaSamplOmatic5000.
All wave editing was done in Reaper. All FX (delays, filters, EQ, compressor, flanger, chorus, reverb, etc.) used were either stock or free downloads.
The lead and bass lines were developed using the Masterclass techniques.
Here it is:
This was quite a challenge but I am pretty happy with the result.
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.
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 weeksafter 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.
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.
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.
This is a link to the Spotify player:
This is the Soundcloud Player:
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.
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”.
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.
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.