Fourth and Last PRRT Done!

Joe Harris’s cupcakes for celebration
Bang the Gong after the 4th Treatment

Treatment

Yesterday I had the last of the Peptide Receptor Radionuclide Treatment! Wahoo!

For more information about this treatment see my blog here and here.

Side-Effects

Although I have only some fatigue today, I know that I will have a few other symptoms for a some weeks. Most people who have had the treatments tell me that the side-effects got less severe with each treatment (typically four treatment, eight weeks apart). This is my experience as well. There are some patients that have severe side-effects throughout the treatment cycle.

Typical side-effects that I typically experience are bad fatigue, abdominal pain (for me only in the mornings), nausea (only intermittent and light in my case) and joint and muscle pain (arthritis for me) is amplified quite a bit.. As today is only the day after and for me most side-effects are delayed a bit, I won’t know how the treatment effects me and for how long until a few days have passed. I know that some patients are not as lucky as I have been and have experienced dangerous and/or very uncomfortable reactions. A good friend had such a strong histamine reaction a few days after the treatment that she was admitted to the hospital.

Yesterday’s Treatment

Too early (7:00 am), the nurse welcomes me. At this clinic, a nurse is assigned to you and one other patient and shepherds us through the day. I love the nurses who do this. We are well cared for. This clinic does two patients in the morning and two in the afternoon.

The other patient, Paul, is already there. He is from Denver also and this is also his 4th treatment. This is a surprise because, in prior treatments, the other patients have been from out of state.

Our nurse hooks us up for the anti-nausea medication IV, somewhat later an IV of amino acids that are meant to protect our kidneys from the radiation is started. The amino acids will run for more than four hours, before the infusion, during the infusion and after the infusion until we are discharged to go home.

Two or three hours after arrival, we walk to the Nuclear Medicine department, pushing our IV poles before us. There the actual infusion of the radionuclide concoction of somatastatin (octreotide) analog coupled with the radionuclide lutesium-177, known as Lutathera, is hooked into the IV to drip into our arm for about 40 minutes.

After the infusion is done, we take the IV poles and walk back to the clinic where we each get a private room because we are radioactive now. For me, I went by wheelchair because I was quite light headed upon standing up from the infusion chair. That stayed with me for at least and hour and only gradually dissipated after that hour.

After that we wait for a couple hours while we snack and are basically under observation to make sure we aren’t having any strong adverse reaction.

Now the Celebration

I have had the good fortune to meet Joe Harris, Oncology Account Mgr, Advanced Accelerator Applications (company that makes Lutathera) at a couple of conventions. Two weeks ago when he found that I would be having the final Lutathera treatment, he promised to bring cake to the clinic. As you can see from the picture above, he brought cupcakes during the waiting period after the infusion. He brought enough for the patients, the clinic staff and the Nuclear Medicine staff. They were really good!

The clinic has a little tradition of “Banging the Gong” after the 4th treatment.

I have been very fortunate to be treated by such a wonderful group of people.

Known Results

My Dr. says that we cannot perform scans (to determine if the tumors have shrunken or disappeared due to the treatment) for months. This is because the tumors usually swell for a while after they are attacked by the radiation. So…. there will be a CT scan in about three months and the GA-68 PET/CT scan at about six months (the definitive scan).

But, here’s a known result. I have had night sweats and evening chills daily for 10 years. Some oncology nurses call this tumor fever, they can be a misery. They have not happened at all for the past three or four months. Something good has happened!

May we all have the best possible outcome,
Cy

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Strut Strange – My New Release

You can pre-save this new release on Spotify.

Just completed and released, “Strut Strange” will be available on Spotify and many other streams and purchase opportunities within two weeks.

“Strut Strange” began as an experiment to learn some new plugins in my software synthesizer of choice VCV Rack. As happens so often, it evolved into music that I liked and that I hope you will like also.

Here is the YouTube video of the piece:

Give it a listen. You might like it.

Let us all have the best of all possible outcomes,
Cy

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VCV Rack and TouchOSC video

I just created a tutorial about using a software app for midi control with VCV Rack.

TouchOSC is an app available for iPhone, iPad, any Android device. I have used it on Android on both my phone and my tablet. You can buy it for a small price at the Apple App Store or at Google Play Store. It requires a software bridge on your computer to communicate to other software. The Bridge and an editor for layouts are available for download at the publisher’s website https://hexler.net/products/touchosc. That site also has a lot of documentation on using the tool and creating your own layouts.

As you probably already know, VCV Rack has become my tool of choice for creating electronic music. One problem that I have is that, when a patch get large, I find myself zooming in and out a lot to find controls on modules that I want to tweak. If I hook the most used controls to TouchOSC on my Android tablet or phone, I can tweak them without even seeing them on the screen!

I created a TouchOSC layout specifically for my use with VCV Rack. That layout and the VCV Rack patch used in the video are available for download here: https://patchstorage.com/touchosc-vcv-rack/

An interesting thing to me is that I have done a number of turorials using direct screen capture on my Windows machine. Never before have I attempted to merge and edit a direct screen capture with a live camera video. I had to redo things many times to get it right.

I hope this is useful to some musicians.

May we all have the best possible outcomes.
Cy

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After the 3rd PRRT

I had the third Peptide Receptor Radioisotope Therapy (PRRT) on Friday three days ago.

So far, there is not a lot to report. The side effects seems to be less severe and less frequent than they were for the earlier treatments.

In fact, each treatment seems to “get better”. I told this to one of the nurses in the clinic today when I went in for my monthly Sandostatin injection. She said “You must be getting used to it.” I said, “I’m not sure that it’s good to get used to being highly radioactive!”

The symptoms that I have had so far since the third treatment:

  • Fatigue – very definitely need a long nap in the afternoon and not much will to do anything physical.
  • Lower abdominal pain – each morning for a half hour or so there is sharp pain in my lower abdomen.
  • Nausea – a little nausea every morning and yesterday morning, I worked on cleaning a gutter in the morning and the nausea took over much more intense for 4 to 5 hours. I better wait a week to do any more of that.
  • Joint/muscle pain – I awoke this morning with rather difficult pain in many of my joints joints, mostly those with noticeable arthritis or old injuries. It reduced very much in severity after 30 to 60 minutes. It is still there five hours though.

All the above happened after the other treatments, but this has been less severe so far.

Let’s hope that it all goes away quickly!

May we all have the best possible outcomes,
Cy

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VCV Rack finally out of beta testing

As I have published here before, I have really enjoyed producing music using the VCV Rack software (open-source virtual modular synthesizer).

A couple of days ago, VCV Rack finally left beta testing and became full production software. I have been waiting eagerly for this, so, the very first day it was available, I installed it. My first trial of it on that first day is below.

I found the usage better, easier and the computer efficiency better. The graphics and audio appear to have improved as well.

This is great stuff!

NETRF Conference Announced for Denver

Very exciting news!

The NET Research Foundation is pleased to invite you to join the 2019 Denver NET Patient and Caregiver Education Conference on Saturday, August 10, 2019, at the Sheraton Denver Tech Center. This full-day conference will include experts from the Rocky Mountain region. Our agenda includes speakers like Dr. Eric Liu, Dr. Lauren Fishbein, Dr. Heloisa Soares, and Dr. Mark Lewis.

The conference is free!

Breakfast, lunch, and snacks will be provided at the conference, seating is limited. A block of hotel rooms at a discounted price is available for out-of-town attendees. Register online at: https://netrf.org/events/patient-and-caregiver-conferences/2019-denver-neuroendocrine-tumor-conference/

This information is also posted on the Colorado NETS Support Group blog.

2nd PRRT Yesterday, Some Complication.

The second PRRT treatment went much the same as the first (see https://cyrilfb.com/carcinoid-cancer/yesterdays-prrt/ ).

Except for one thing. My blood pressure spiked very high during the actual infusion of the Lutathera. One nurse said that she had never seen blood pressure that high. Now, 24 hours later, it has reduced to much less high but still not in the normal range.

The clinic doctor and nurses had me make an appointment with my cardiologist for within the next week. It should be interesting since I am already taking the maximum of my current bp medication.

May we all have the best possible outcomes.
Cy

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Three Years Since Bladder Cancer!

For three to four years I had invasive bladder cancer procedures and a BCG (immune system treatment) to try to rid me of bladder cancer.

Today, I had another cystoscopy check for bladder cancer. There was none there! WOO! HOO!

It has been about three years since my last treatment. I can now go on a schedule of one checkup every year, instead of twice a year. As you might guess, it is a great relief to be able to worry about only one cancer instead of two.

May we all have the best possible outcomes,
Cy

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Music Contest Submission

Yesterday, I submitted a composition to a contest. The contest is called the Very Cool Patch challenge.

This is challenge to people who are using VCV Rack modular synthesis software to make music. The “patch” is the combination of plugins and wires between the plugins used to make the composition.

This particular challenge is called: “ very cool patch challenge edition 27“. The challenge for this edition is to use the “Evolution” plugin by “ML Modules”.

These challenges have been presented for about a year now, but I have not entered one until now. Here is the YouTube version. I hope you like it.

Of course, if I win anything, I’ll let you know.

May we all have the best possible outcomes,
Cy

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2 Weeks After 1st PRRT

“Beware the Ides of March!” may have been suitable for Julius Caesar, but the Ides have been good to me this year. Yesterday was 2 weeks after my 1st PRRT treatment and all is well.

  • The first week after PRRT, I had some of the symptoms which were predicted: nausea (not much), pain in abdomen ( only once or twice a day, fatigue ( i was sleeping almost 12 hours a day), Joint and muscle pain for parts of my day.
  • The second week after PRRT, much of the fatigue is gone, there has been indigestion on a couple of evenings, the abdominal pain has stopped occurring. The joint and muscle pain is still with me but is tolerable.
  • I am no longer a radiation danger to children, so I can see my grandchildren.
  • For about a week, I have been walking outdoors for a half hour to a full hour (not fast but steady)(except for the day of the blizzard when I shoveled snow).
  • A few day ago, I had my first lab test. These tests will be repeated every two weeks during the cycle of treatments to make sure that the PRRT is not lowering my white blood cell count too much. I was told that the count will be lower and will not bounce back, so we must make sure that it is not going too low.

Three more treatments to go! They say that each treatment can produce different symptoms with different severity for any patient. Also, we cannot know how effective the treatments have been until I have a scan after the last treatment late this year.

My next treatment may be in about six weeks. We may have to schedule it later because of travel plans.

Laurie and I are going to the Yucatan Peninsula in late April and hoping that my radioactivity does not screw up the travel. We also want to visit our son and his family in Scotland in the late spring/early summer again worried about my radioactivity. We will see.

Namaste,
Cy

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