You know that I like making modular synthesizer music and you know that I like meditation.
What better than a meditative piece of electronica? This is a generative piece which means the notes are all generative randomly. As the notes are generated, I push them through a quantizer to get them to a musical scale (in this case F# Locrian scale). Then they go to VCOs (voltage controlled oscillators) which actually generate audible sound and then through an envelope generator which shapes the sounds. Finally all goes to a mixer and though a delay and a reverb to make the final product.
I just completed a tutorial for music producers who like to put devices called risers in their music. A riser is a musical noise that starts at a low volume and a low pitch and rises gradually to a quite high volume and pitch.
Risers are very common in EDM, Pop and Electronica. Risers are used as background or to separate parts of a musical piece or to accentuate tempo or key changes and add excitement.
As you can hear, risers are not necessarily simple sounds.
A modular synthesis is an ideal way to create unique sounds including risers. This tutorial uses VCV Rack software modular synthesizer which I have been spending a lot of time with.
I have made three other tutorials about VCV Rack. This is a YouTube play list including them.
I also have playlists with much of my production in modular synthesis.
We spent about 10 days in Scotland ending last week. Our son, his wife and son live in Cellardyke near St. Andrews. We take every chance we can to visit them. We love to see them especially the five and a half year old grandson.
While there, we took the wonderful train system to Stirling. Stirling is an ancient town with a castle that dates to the the 14th century. It was perhaps the most used of the royal residences during the reign of the Scottish Kings. The Scots have done a very good job of restoring the interiors of several of the castle rooms to look like they did during the King’s residence. The battles of Stirling Bridge and of Bannockburn pictured in the movie “Braveheart” was fought very nearby.
All in all, it was a very good trip. I regret that I have not pictures of family or castles but my phone with it’s camera died on the first day of the trip.
Health and Missed Opportunity
I have written in Another NETspot GA68 Scan – Next PRRT that I am “on the list” for a treatment called PRRT. While we were in Scotland, an opening in the list occurred for today Nov. 9. The oncology office called and left messages but I was in Scotland and my phone was broken. I finally got the message when it was too late to begin the treatments this week. This was a bit disappointing but could not be helped. I am still on the list for early next year.
Last Friday, just two days after our return, I got my monthly Sandostatin injection for NET Cancer. Since then, I have been experiencing some of the Carcinoid Syndrome symptoms that don’t usually bother me. I mentioned this to my oncologist and he told me that sometimes the injection is done badly or the batch of medication is bad.
Tomorrow (November 10) is International NET Cancer Awareness Day.
This is important to all of us who have the disease. NET Cancer has been one of the least recognized cancers with less research and diagnostic effort than most. Due to efforts like these awareness days, doctors and researchers are becoming more familiar and producing more tools to diagnose and treat our disease.
Most states governors have signed proclamations supporting this day. Though the efforts of my co-leader of Colorado Carcinoid Cancer Support Group (CCCSG), our governor here in Colorado has signed this proclamation.
You can read more about NET Cancer Awareness Day here.
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.
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.
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.
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.
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.