I Made a youtube Tutorial! and Looking Well.

Part of having a chronic disease like carcinoid tumor is trying to concentrate on the other stuff in your life.  The Carcinoid Cancer Foundation shared this article “The Spoon Theory” on how one lives with a chronic disease.  It is very true.  It may be the perfect response to “But you look so well!”  By the way, I don’t mind being told that, I like at least looking better than I might feel, but that’s just me.  Many others with carcinoid don’t like it much.

Part of my life since retiring and therapy since diagnosis is electronic music. Listening to it (as well as most other music) and making it.  Making music is something I always wanted to do and now I do it.

My latest project has been to produce a tutorial for youtube on how to produce a sound called a “growl bass”.   This is used mainly by Electronic Dance Music (EDM) producers.  I tend to mix genres and wanted to use it in a different kind of music.  There are actually a surprising number of tutorials on youtube on this subject!  But, none of them address the DAW software that I use, Reaper and they all use expensive synthesizer software whereas I use free download synthesizers.

So, I watch a number of tutorials and then attempted to reproduce the sound with my tools.  It took me a week or more but I got it!

Instead of going ahead with my music, I thought “Wouldn’t it be great to make a tutorial for my fellow software users on how to do this? Surely I’m no the only one who want to do it.”  I also thought “How hard could it be?”  Famous last words.  It took about two weeks.  I tried and discarded a couple of screen capture programs before I found one that was acceptable (Apowersoft Free Screen Recorder).  I trained myself on Windows Movie Maker. I bought a better microphone and wrote a script and practiced over and over again.

Finally, this morning I uploaded it to youtube.  What a relief!  But,  what a great learning experience.  Find it here:

Vocoder Growl Bass Tutorial

Be where you are; otherwise you will miss your life.  ~ Buddha

Namaste (I bow to the divine in you),

Cy

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Music for June 2014

I have finally finished another piece.   With travel, health and other issues I have not been very productive, I know.

This music is a result of experimenting with some tools that I was not familiar with.  I also used the work as an opportunity to practice mixing and mastering some more.  Sometimes one wonders if he really has any art in himself and needs to push hard to finish something. That’s where I found myself and I had to press hard to finish this.

Listen and enjoy (I hope).

“Moody 1″; Electronica; June 1014 Download

May we all enjoy the best possible outcomes in our journeys,

Cy

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Bladder Cancer Labs Are In.

My Doctor just called with the lab results from my procedure last week.

Good news: The cancer is a low grade bladder cancer.  It’s not aggressive.  There is no known relationship to my carcinoid tumor.  We meet in his office on the 19th next week to remove the stent.

Bad news:  It recurs frequently.  About 50% likelihood of recurrence and then we have to do this all over again.

The Doctor said now that he knows for sure what it is, if it recurs, he can treat the bladder with a chemo after removing the tumor which will decrease the likelihood of recurrence.  He also said that “now everyone at the hospital knows the special procedures for you” so there should not be any problems.  Maybe I’m a little cynical but it’s a large hospital so I do not think “everyone” or even all of the anesthesiologists are aware of what has been done twice for me.  But, at least it’s on record.

I feel much better today.  No pain killers since Sunday evening.  Still very tired but I have been out to breakfast with friends Sunday and made trips to the dentist and my PCP (personal care physician) today.  I am going to a meeting tonight and plan to attend my meditation meeting tomorrow night.

So I will be checked again for bladder cancer in September, carcinoid cancer progression in August or September.  Let’s hope we have no more drama then or between now and then…  I want a good summer!

May we all have the best possible outcomes!

Cy

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New Handbook for NETs/Carcinoid

Just found out about this on the ACOR Carcinoid group.  There is a new handbook that is very good at explaining NETs and Carcinoid to non-medical people and gives lots of valuable information (including about Carcinoid Crisis which I have hammered on lately). The Zebra Talk Handbook is available here:
The Philly NETs  which is a resource/support group for NETs/Carcinoid.  Simply click on the Adobe Logo below the image and download it. Thanks to the folks who worked to produce this.

I also have it available here: zebra_talk_handbook-2014-06-08 , if you have a problem with the other website.  This is not guaranteed to be the latest as they plan to update it regularly.

I urge all people diagnosed with NETs or Carcinoid Tumor to find out all they can about the disease.  Many medical people do not know.  They need your help!  Be your own advocate.  Start with the pamphlet above, then read Neuroendocrine Tumors – A Comprehensive Guide to Diagnosis and Management and give a copy to your doctor!  Yes, it’s technical and scary,  toughen up, you will need to be tough to survive this.  During this also go and read everything on The Carcinoid Cancer Foundation website.   While doing all of this join online and local support groups.  Knowing others with the disease will help tremendously both with information and emotionally.

May we all have the best possible outcomes!

Cy

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Bladder Cancer Procedure was Complicated by Carcinoid Tumor

Yesterday was the day for the bladder cancer procedure.  It was intended to be an outpatient procedure but I stayed overnight in the ICU.

Why? First, one of the ducts between a kidney and my bladder was partially blocked so a stent was put in. Second, as I outlined in A Busy Cancer Day, I had made sure that the anesthesiologist was aware of the risk of Carcinoid Crisis.  Here was what he told me when we met before the surgery:

  • He had hit the books on carcinoid and found out that Carcinoid Crisis was a “real thing” in his words.
  • He had read the recommended octreotide protocols that I had given him.
  • He had spent time with the anesthesiologist who had presided over my five and a half hour liver surgery last year and decided to use the same protocol that was used then.  This was a modification of Dr. Pommier’s protocol.
  • He thought that the risk of crisis was enough to schedule me overnight in ICU for monitoring and the octreotide drip was continued for hours after the surgery was over.

I was extremely impressed with his willingness to go the extra mile for me.

No crisis occurred! Rah Rah!  Three tumors that we had seen in the cystoscopy (interesting to see the inside of your bladder on TV) were removed and the urologist found a fourth that had been hidden and removed it.  The urologist said that he “plucked” the tumors out and scraped the inside surface of the bladder to remove any cells that might be there.  The larger tumor hid the opening of the duct from the kidney so the urologist had to put a stent in to make sure the duct stayed open.  He intends to remove the stent in two weeks (office procedure).

After the procedure, I was taken to ICU where I spent the night.  There I was interviewed, poked and prodded by doctors, interns, nurses and med students, all of whom expressed thanks for learning about a rare disease.  Most of them did not seem very interested in the bladder cancer.  I overheard one nurse tell another that I seemed to know more about carcinoid than the doctors.

The hospital medical team was concerned because my pulse rate was low through much of the night, often around 45 bpm.  So I have to visit my PCP next week.  He knows all about it and I had a Cardiology review just three days before!  My resting heart rate has often been that low for at least the last nine years. I do not think anything will change.

Now I must have a cystoscopy every three months for a year and then yearly because this cancer is known to come back.  The urologist says the cancer looks like  a low grade cancer but we will wait for the lab tests to tell us.  I asked that the lab test for any carcinoid cells in the tumors.

Overall, this was not at all as bad/painful as I had anticipated.  I am very thankful for that.

Surely this was my best possible outcome,

Cy

EDIT: June 6, lots of pain today.  They gave me no prescription at the hospital so I have had to call the doctor to get a prescription called in to the pharmacy.  Did not expect it to be this bad.

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Busy Cancer Day – May 28, 2014

Today was quite a busy day for cancer stuff…

First I met with a Physician’s Assistant for bladder cancer pre-op evaluation.  Had blood and urine tests and EKG.  In return, I gave her this paper:

I have Carcinoid Cancer. Among other things, this means that I could experience Carcinoid crisis during invasive procedures, stress, or anesthesia.

Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome. The crisis may occur suddenly, or it can be associated with stress, chemotherapy, or anesthesia. It is characterized by abrupt flushing of face and sometimes-upper body, usually severe falls in blood pressure and even bronchospasm with wheezing can (infrequently) occur. The attack may look like an anaphylactic attack. In my case it probably would include bradycardia (35 bpm sometimes).

Epinephrine and pressors will provoke – not help carcinoid attacks. Do not use anesthesia drugs mixed with epinephrine.

Attached are two descriptions of protocols recommended and used by carcinoid experts.

Here at Franklin:

Dr. Anondo Paul Stangl used a similar protocol which may have saved my life when he was performing chemoembolization on me and I had a crisis.

Dr. Philip Neff and his anesthesiologist used a similar protocol when I had liver surgery last year. I did not have a crisis during the 5.5 hour procedure.

These doctors are just across the hall from urology if more information is needed.”

NOTE: please have the tumor lab tested for carcinoid as well as the more normal. Let me know of results.

I also printed Dr. Woltering’s protocol and Dr. Pommier’s protocol.

The PA was suitably impressed with the information and said that she would have an anesthesiologist assigned early and make sure that she has this information.  The surgery is scheduled for next week, June 4.  As I have pointed out before, this is essential to insure that a carcinoid patient survives anesthesia and stress and invasive procedures.

Later that day I met a new PA to discuss my carcinoid.  She studied and approved of what I did above regarding carcinoid crisis.  No changes in my treatment for now.

Then I had the Sandostatin injections that I have every four weeks.

We cannot avoid sometimes our day revolving around our cancer!  Thankfully tonight is a meditation meeting.

May we all have the best possible outcomes,

Cy

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Psychological Self Help

Depression among cancer patients is a well known phenomenon.  Carcinoid cancer patients are no different.  In fact, there is some evidence that they have depression to a greater degree.  Studies have shown that cancer patients will usually survive longer with reduced depression.

I bet that each of us who have gone through the process of finding carcinoid cancer in our bodies have had bouts of depression.  Many of us have struggled for years to actually get a proper diagnosis.  Along with the tumors and the pain and diahrrea and flushing  comes fatigue.  Maybe we find that we cannot rid ourselves of this depression.  Then the cancer diagnosis brings fear.  After a while it seems that your friends and loved ones are not as attentive as you need.

What can we do?  Many times, oncologists won’t ask about or treat depression or recommend treatment.  If you are severely depressed you may need to see a psychologist. If you are mildly depressed or deep into fear, your solution could include exercise and meditation and perhaps spiritual counseling.

If you have a religion, you should definitely seek guidance from a spiritual counselor that you trust.

Exercise can help your body fight your cancer and also reduce stress and depression.  This was a major part of my program for recovery.  I walk 2 to 3 miles nearly every day.  I also go to a gym a couple of times a week when I can.

Mediation has been a major part of my health regime.  As luck would have it, I had started a meditation program with Shambhala Meditation about 9 months before my diagnosis. There are many Shambhala Meditation Centers all over the world.  There are certainly other places that teach meditation and other forms of mindfulness.  Once I was diagnosed with Carcinoid Cancer, I put a lot of time into meditation and I continue to meditate.   Meditation helped me to deal with the fear of having cancer, with the sickness and pain of the treatments as well. To me, meditation has helped me keep a positive attitude and live with the sickness and pain with compassion for myself.  It gives me the tools to offer that compassion to other sufferers.

I encourage all cancer patients to actively seek psychological, spiritual, emotional help.  Doing things for yourself like exercise and meditation should be part of your life every day.

May we all have the best possible outcomes,

Cy

References:

  1. Psychological Effects Carcinoid Disease Study Carcinoid Patients And Their Caregivers
  2. Depression and Carcinoid Syndrome is there any relationship
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Back From Europe – May 2014

We returned from our travel to Holland and to Scotland last night.

It was a great trip.  We stayed in Haarlem in the Netherlands for 5 days.  There we visited tulip gardens. It was just after the tulips’ peak and raining but very beautiful anyway.  We enjoyed walking all around the old town of Haarlem.  The town center is mostly foot and bicycle and many of the buildings are quite old. We visited the old church, St. Bavo Church, now called the Grote Kerk, which was built during the period from 1370 to 1538.  The Christian Muller organ in the church was constructed in 1738 and looks quite impressive.  It was played once by Mozart and by G. F. Handel.  While touring the church we had the good fortune to hear someone practicing on the organ and it was quite impressive.  We went to the Frans Hals museum which has a lot of interesting things about Haarlem as well as paintings by the old master and by other lesser known masters.  It was very good.

We also took the 20 minute train ride to Amsterdam one day.  Walked about the city and spent time in the Rijksmuseum visiting more of the old masters like Rembrandt and Vermeer as well as works by more modern artists like Van Gogh.  We tried to visit the Van Gogh museum which is near the Rijksmuseum but the line was so long that our limited time would not permit.  It was a very pleasant day with good weather.

We found the Dutch people to be very pleasant and handsome people.  In the cities, the bicycle is probably the main mode of transportation. A plus for us language impaired Americans is that they all speak english very well.

We flew from Holland to Edinburgh in Scotland.  We visited a few places there and after one day took a bus to Cellardyke where our son and his family lives (He teaches at the University of St. Andrews). There spent 5 days visiting, walking along the coast and playing with our one year old grandbaby.  He is quite adorable.  We got re-acquainted with some of the best fish and chips in the UK.

A great trip!  But… traveling with carcinoid is not always a picnic.  There were alternating bouts of diarrhea and constipation.  Not so good on long flights and bus rides.  Fortunately, my medications control it mostly.  I also experienced the fatigue common to many cancer patients.  I needed at least a couple of days to restrict my walking about and let my wife go on her own.  There was also some dizziness from the various heart stuff.  Nothing really serious but this is something each of us with carcinoid has to be constantly aware of.

May we all have the best possible outcomes,

Cy

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Good Carcinoid Article in Popular Press!

The New York Daily News published one of the best and longest articles on Carcinoid Tumors that I have seen in popular (not medical) media:

Daily Checkup: Carcinoid tumors have a variety of symptoms

This quote is interesting:

There are 11,000-15,000 new cases of carcinoid diagnosed every year in the U.S., and an estimated 115,000 Americans are currently living with the disease.

With the current U.S. population estimated at 317 million, that means:

  • At most 0.005% of the population will be newly diagnosed this year (1 in 19,812)!
  • Approximately 0.0363% of the population is living with the disease (1 in 2,757)!

By law in the U.S. a rare disease is any disease that affects less than 200,000 people in the U.S.  So we are rare by law.

What does this mean to those of us with the disease?  It means that much less money and time is dedicated to finding better treatments and detection methods and (god forbid) cures.  It also means that most oncologists and certainly most general practitioners have never seen a real case of the disease and many of them have incorrect ideas and information about the disease, if they know/remember anything at all.  My Kaiser doctors are against surgical removal of tumors even though the most expert doctors in the U.S.  have advocated surgery as the first treatment for several years. I had to fight for it.  I have been told by one oncologist that in the 60s, carcinoid was described during one day on rare diseases in his medical school.  All of this also tells us a major reason the disease takes so long to be diagnosed (the symptoms also match many more common diseases and doctors are trained to look for the common not the rare in diagnosing disease).

I recently met a woman who has had symptoms for 17 years.  She was diagnosed with carcinoid in the past few months.  Many carcinoids have few or no symptoms.  Unfortunately, the disease might then only be discovered by accident or an autopsy.  I had a very acid stomach for seven years and was told that was gerd or irritable bowel.  I used zantac and, after a bleeding ulcer, prilosec (last year this was proven to encourage tumor growth, another joke on ‘noids).  It turns out that a large carcinoid tumor in my liver was generating a lot gastrin which tells the stomach to make acid.  Like many ‘noids my metastasis tumors in liver were discovered by accident and the primary tumor has still not been located.

I am rambling, sorry… The major points here are:

  • Read the article, it’s written for the public.
  • If you suspect that you or someone you know has symptoms, get educated.  Use the websites in the article or my links in the right hand column.
  • If a doctor tells you that you have carcinoid but that it is benign or that you should wait and observe with no treatment for a year or more, get a new doctor.  Carcinoid is never benign, it can be very slow.  Even if it is not growing it is generating endocrine fluid that will harm your body and over time kill you.
  • Find a doctor who will listen and test you properly.  Each patient is different. Do not let a doctor tell you that her tests do not confirm so you do not have carcinoid.  No one test or scan can confirm or deny. Get second/third opinions.
  • Go to an expert at least for opinion and recommendation.  This is perhaps the most important thing that you can do to save your life once you are diagnosed.  Make sure that your regular doctor will work with experts and follow recommendations.

May we all have the best possible outcomes,

Cy

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Secondary Malignancies Are More Common Among Carcinoids

Since I found that I have bladder cancer, I have realized that I saw a lot of secondary cancers amongst the members of the carcinoid support groups that I frequent on the web.

A little googling reveals that some in the medical community have realized for a while that carcinoid patients have a higher incidence of other cancers than the general population.  This is one of several articles that I found relating this information:

“Neuroendocrine Tumors and Second Primary Malignancy-A Relationship with Clinical Impact?” 

Obviously, this means that us ‘noids need to be observant and careful to look for signs of other cancers.  We also need to make sure our oncologists and general care physicians are aware of this.

As usual, no oncologist that I know of has warned their patients of this possibility.  Why won’t they share information?  Many do not have the information because carcinoid is  rare.  Many believe that it is not malignant or is not a cancer because it grows slowly.  These beliefs have been debunked thoroughly but they (and sometimes the medical schools) have not gotten the message.  As patients, we must be brutal sometimes in educating our doctors and pursuing better treatment options.  We always should seek second opinions from those few doctors who are known experts in the disease.

May we all have the best possible outcomes,

Cy

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