Clean Cystoscopy!

It is a great pleasure to post positive health results in my blog. Not all is doom and gloom. This time I had a good, clean cystoscopy.

Cystoscopy is endoscopy of the urinary bladder via the urethra. It is carried out with a cystoscope.  – Wikipedia

What that means is they insert a camera into your bladder via the urethra.

I had my first bladder cancer check since cancer was removed last September. The check mostly revolves around the cystoscopy.  This showed no cancer!

This is the first time in about 3 and a half years that I have not had the cancer when the doctor looked for it.  I have had to have it removed from my bladder four times and although that procedure is a day surgery, it is really not pleasant.

Bladder cancers are often treated with immunotherapy. In this treatment, a medicine triggers your immune system to attack and kill the cancer cells. Immunotherapy for bladder cancer is often performed using the Bacille Calmette-Guerin vaccine (commonly known as BCG). – MedlinePlus

This does not mean that it will not recur but, at least for now, I will not have to undergo another BCG treatment. I had that last summer and it was not pleasant.  My doctor and I had discussed doing the BCG and adding interferon to it.  I would have been even more sick for six to eight weeks during that treatment.

Other Health News

The spinal injection of steroids in early January has worn off.  I will get another in early April,  just in time to try fly fishing with friends and a trip to the Netherlands.  Before the injection, I had feared that I would have to give up both fly fishing and travel.  I could not walk more than a few blocks even with heavy pain medication.  Now, physical therapy has brought me to a better place although by no means able to walk very far or stand for very long.  The injection made me feel almost normal for a couple of months.

Overall, great health news this week. I will be seeing my NETs (neuroendocrine cancer) specialist within eight weeks. Let’s hope that also remains good.

May we all have the best possible outcomes,

Cy

 

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Rare Disease Day 2017

Today February 28, 2017 is Rare Disease Day.
Several things have occurred today which warrant examination.

  1. The  U.S. Food and Drug Administration (FDA) has approved Xermelo™ (telotristat ethyl) as a first-in-class orally administered tryptophan hydroxylase inhibitor indicated for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy.  This is a pill that will help people with the diarrhea part of carcinoid syndrome (some people up to 40 times a day) while those patients are on somatastatin analog therapy (that’s the octreotide (Sandostatin LAR)  injection that I get every 28 days or a newer injection called lanreotide (Somatuline)).  Big news for those with the syndrome.  Fortunately for me, my syndrome is very mild and occurs very infrequently.
  2. For Rare Disease Day, The Healing NET Foundation has released this video:

    saying this “The main objective of Rare Disease Day is to raise awareness among the general population. The Healing NET Foundation encourages you to share this video of stories and comments NET patients posted on our website and on FB, to let the world know about our RARE DISEASE, Neuroendocrine cancer and Carcinoid syndrome. “

  3. The Lifetime TV channel show “The Balancing Act” had a Rare Disease Day episode this morning which partially featured Neuroendocrine Cancer.  The show is now on YouTube:

Point 1. above show how raising awareness of our disease gets doctors and drug companies looking for ways to treat it.

Points 2. and 3. are good parts of the ongoing efforts to raise awareness of the disease.  It exists. It affects people’s lives.  We all need more treatment options.

May we all have the possible outcomes,

Cy

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After Eight Lessons – Music

As I told you in Music Masterclass for the New Year, I am taking an online video masterclass in the production of EDM (Electronic Dance Music) taught by a well-known musician in that genre, Deadmau5.  I have completed eight lessons of the 26 lessons.

Taking a break from lessons and homework, I created the music in the link below.  The music attempts to use the many things that I have learned about EDM melody, lead, and bass line creation as well as a lot of material on programming synthesizers both modular and not, both hardware and software.  I have no synth hardware and Deadmau5 really insists that hardware sounds better. Part of the homework has been to “make sounds no one has ever heard before”.  You will hear some of that in the music.  If you are not familiar with EDM, you may be surprised at the music.

In the next lesson I will be learning the EDM beat (basically one kick drum hit per quarter note and claps and/or snare every second quarter note with added hihats.  All of that varied a bit.) Also, how to create my own unique, “signature” kick drum sound from a two or more samples of kick drums and some distortion.

Happy belated Valentine’s Day,

Cy

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Working on Back Pain

Today is the first day since last April that I have not taken any form of pain killer after waking.

The medications have ranged from OTC acetaminophen, naproxin, ibuprofin to prescription Tramadol and Vicodan.  — I have mentioned before that I have experience severe back pain since April last year. (My how time flies!) It got really bad during our last trip to Scotland in May. Of course. a lot of walking is involved while touring and I spent too much time sitting and waiting while my family toured and walked.

The pain was two types: the shooting lightning strikes down the backs of both legs – buttocks, hamstrings, calves; and a slightly less severe pain that just settles in the same places and also the lower back. For months I have not been able to stand long enough to make a piece of toast in the kitchen.  Before last May, I was accustomed to walking three to four miles every day.  Since then, when I use a hiking stick or sometimes two sticks, I could walk around the block. On my best days I could walk a mile.

Since then, I have tried many alternatives. My PCP provided a list of stretches for the back, some of which relieved some of the pain for a short while when I rose in the morning. He also tried a course of Prednisone tablets. This relieved the shooting sciatic pains for a month or so but the rest of the pain just seemed to settle in and take control. We tried a muscle relaxant with no good result.

I visited a chiropractor for two months twice a week with little or no relief. He finally told me that he could not find a way to help me.

Finally, both the chiropractor and my PCP referred me to a physiatrist. This is a traditional doctor MD who specializes in physical medicine and rehabilitation. They are often spine specialists and avoid recommending surgery except as a last resort. I must admit that I had never heard of this specialty. We learn a lot in our health journeys, perhaps especially as we age.

The doctor I chose three months ago has proven to be very helpful. First he order a spine specific CT scan.  Bearing in mind that I have already been told that I have arthritis in all of my joints and that I have DISH (Diffuse Idiopathic Skeletal Hyperostosis) which is a disease common to 90 year olds and which gradually turns your ligaments to calcium, the CT scan report says:

  • Mild scoliosis (this is from birth but not causing a problem).
  • Mild arthritis
  • Bulging disks
  • Retrolisthesis – movement of the vertebrae from their proper place in the lumber region which causes:
  • Stenosis – abnormal narrowing of the tube through which the spinal cord passes.

In my case, the stenosis is considered severe.  Apparently, the normal opening for the spine is greater than 15mm but mine on the last vertebra is 5mm.  This is what is causing all the discomfort.

The physiatrist immediately started me on physical therapy and gave me a few days of a drug called methylprednisolone.

The physical therapy has been going for about eight weeks, once a week.  We have made definite progress and mostly removed the pain from my calves, partly removed the pain from my hamstring and removed most of the pain from my right leg.  The left leg and rarely the right leg still gets shooting pain in the hamstrings and occasionally severe pain in the calf.  My buttocks still get quite a bit of pain.  I still could not stand for more than about three minutes.

The methylprednisolone removed the pain almost completely for a few days but it gradually returned full force.  The drug also made my stomach very sick for a week.  The doctor told me that the results with drug indicated that I could be a candidate for spinal injections.

Yesterday, I received corticosteroid injections in my spine. Today I have only the smallest pain with not much problem standing or walking.  WOW!!!  Unfortunately, there is no way to predict how long the therapy will work.  The doctor already told me to schedule more injections before I go to Europe in late April.  I will continue the physical therapy because I am learning to sit, stand and stretch in ways to keep it from getting worse again.

This is not the end of the journey but I certainly appreciate a pause, however long, in the discomforts.

May we all have the best possible outcomes,

Cy

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Music Masterclass for the New Year

Throughout the past few years, my interest in music has remained unabated. If you are a regular reader, you know that I produce a new piece from time to time and that I have set up a store to sell the music and, of course, the soundcloud account for everyone to listen to my productions.  This new year, I have decided to up my game.  January 3, I enrolled in an online music masterclass: “Deadmau5 Teaches Electronic Music Production”.

deadmau5 Teaches Electronic Music Production | Official Trailer

Watch this video on YouTube.

Deadmau5 (pronounced “deadmouse”) is a well-known Electronic Dance Music (EDM) producer and performer.  He has founded his own record label “Mau5Trap” and performs to packed stadiums, has received several awards and nominations and has been on the cover of “Rolling Stone”.

The course consists of 23 video lessons by Deadmau5 with a downloaded pdf workbook for each lesson. I am currently on lesson 7 of the masterclass and I already have learned a some techniques about how to compose a melody for EDM and how to extract and develop a bass line and a lead from the melody you have developed.  I find that I was doing it a more difficult way before this.

Because I have been composing music “in the box” (in the computer) for about six years, I know some of the techniques and tips already. For instance my current masterclass lesson 7 “Introduction to Synthesized Sounds” mostly covers things that I am familiar with. There is always something to learn though.  As part of this lesson he develops one of his signature sounds called the “deadmau5 pluck”.  He does it rapidly without a ton of explanation because he’s really just demonstrating many of the features found on synthesizers.  I plan to spend part of today (maybe also tomorrow?) learning to do this on one or more of my synthesizers. Note that I am talking about software plugins that are synthesizers, not the hardware keyboards.  I don’t have a hardware synthesizer.  Apparently, deadmau5 has a large collection of hardware synths.  Hardware is expensive but needed for performing and he also seems to prefer the hardware for sound development.

EDIT: the “deadmau5 pluck” took only a couple of hours to get a very similar sound.

I hope to develop some music that I can publish very soon as part of these lessons.  It’s great fun!

 

Let’s all have the best possible outcomes,

Cy

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Radiology Report from CT Scan – 2016-10-27

This log should encourage everyone to get copies of their CT Scans,  MRIs, octreoscans, GA68 scans, and all reports on scans and procedures and test results.  You will often find things that your doctor doesn’t mention.  In the past, when I was with an HMO, my oncologist never went over the radiology reports with me and there were a number of things that I needed to know as well as things she should have known but did not pick up on.

I reported on the positive results of my meeting with Dr. Liu in the post Stability, Carcinoid Cancer 2016-10-27.  At the time, we did not have the actual written radiologist’s report. It is worth understanding that with chronic disease like neuroendocrine, we get many scans and radiologists typically compare previous scans to the present scan.  In this case, October’s scan was compared to the scan from October last year (2015).

That radiology report about the CT scan came to me in the mail Saturday and I was amazed and very happy to read it!

  • Neuroendocrine cancer – No lesions found in liver (Dr. Liu and I did find a lesion in our meeting and that had not grown, not sure why the radiologist did not) but the previous report had shown 5 or 6 very small lesions. They have shrunk to invisibility!
  • Urinary bladder, kidneys, ureters – all normal.  This is important because I have struggled with urinary bladder cancer recurring for about three years now.
  • Everything else – normal!  Still no sign of the primary tumor.  Wish we knew where that little bugger is!

This is HUGE!!! From six visible lesions to one is unexpected, the monthly Sandostatin LAR injections (and of course my good living, Hah!) must be effective.  Of course caution is in order, this is a radiologist that has never seen my scans before.  Also, even lesions too small to see can start to grow again, in fact, it is said that the primary tumor generates microtumors that seed everywhere else.

But this is an even better CT scan report than I thought at the time of meeting with Dr. Liu.  I am certainly really happy and ready to go forward with hope.

All of you who have our disease: Get copies of your scans and reports about scans and test results.  At least try to read them.  It will teach you things and may have good news.

May we all have the best possible outcomes,

Cy

 

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“My Hero Tonight” a new song

I’ve been distracted with numerous other parts of life. Finally, I have finished another song.  It is intended to be EDM but as usual, I got a little carried away into my own thing.

Try it, you may like it!

“My Hero Tonight”, EDM, November 2016

The song is also on YouTube:

My Hero Tonight

Watch this video on YouTube.

Namaste,

Cy

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Neuroendocrine Cancer Awareness Day 2016

Tomorrow, Thursday, November 10, is Neuroendocrine Cancer Awareness Day.

Cy Zebra
Cy is a Zebra

Yes, I am a zebra.  I have neuroendocrine cancer.

“When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.

In medicine, the term “zebra” is used in reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses.  Doctors learn to expect common conditions.

Unfortunately, many doctors forget that us zebras actually do exist.  The average time to diagnosis for us is about six years!

Keep reading, there are lovely baby pictures below!

The Healing NET is featuring some of our stories here.  I got selected to be one of them!

From Carcinoid Cancer Foundation This is a graphic depiction of many of the symptoms and locations:

symptoms of carcinoid
Possible symptoms and locations of Neuroendocrine Cancer.

An easier to read version is here.

My point is, obviously, be aware of Neuroendocrine Cancer also known as Carcinoid Cancer.

Our lovely granddaughter at 11 weeks!

margot1-2016-11-07 margot3-2016-11-07 Who could resist our Margot?

Namaste,

Cy

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Stability, Carcinoid Cancer 2016-10-27

My specialist Dr. Liu and I were concerned that perhaps my thyroid function was not good. Since Sandostatin injections can impact that and also ten years ago a nodule was noticed on my thyroid and not really followed up since then, I had an ultrasound last week and the “nodule” was still there. That worried me a lot.
There was also the possibility that my Carcinoid disease was progressing which is always a worry for those of us with the disease. I have been having more episodes of chills in the evening and occasionally night sweats.

Dr. Liu believes the “nodule” is cancer but has not changed significantly in ten years and the test for thyroid function are good.  His recommendation is to revisit it in six months.  He told me that conventional wisdom is usually to remove the thyroid but that he doesn’t agree when it is this slow growing.  I am good with that. The less surgery, the better.

With blood tests and with a CT scan, there is no indication that the carcinoid has progressed.  The small tumors in my liver have not changed and blood tests give no indications of change.

Obviously, I am overjoyed.  It has been 3.5 years since my liver surgery and the carcinoid has been pretty stable.

Other good news is that the new GA-68 scanner will be used for patients starting next week!  I will probably get it in the spring to insure that carcinoid tumors have not spread to any other areas of my body.

My back is still a painful problem.  I have degenerative disk, arthritis and DISH (Diffuse idiopathic skeletal hyperostosis – tendons hardening to calcium).  I have tried a chiropractor and it’s no help. Hopefully today’s CT scan will give my PCP some clues.  I have been attending hot yoga classes for the last eight weeks and that gives me some relief for a day or so, but the pain can still be pretty bad.  I think we will be looking at injections in the spine soon.

No news about solutions to the urinary bladder cancer problem as of yet.

 

Namaste,

Cy

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Bladder cancer procedure- 2016-09-13

Urinary Bladder Procedure

I had another day surgery today for urinary bladder cancer and just returned home.  For the fourth time, cancer had to be scraped from the inside of my urinary bladder.  After the tumor was removed a type of chemo (mitomycin C) was left in my bladder. Although the procedure itself was about an hour long, Laurie and I spent from 9:30am until about 4:00pm in the hospital. I have to wear a Foley catheter for two days and then remove it.

The original anesthesiologist assigned to me was delayed in another surgery, I was assigned another one.  He decided to use the same procedures that were used during this procedure in April.  He thanked me for giving him a chance to study a disease he had only heard of in school but never seen (neuroendocrine cancer). I made sure that the octreotide was there and ready when I was wheeled to the operation room. In fact, we had to wait for the pharmacy to deliver it, even though the originally assigned anesthesiologist had ordered it.  The doctor told me that the pharmacist had to look up recommendations and dosages because they had not used it before.  At the pre-operation meeting a week ago,  I had given the doctors copies of Dr. Woltering’s protocol, Dr. O’dorisio’s protocol and Dr. Pommier’s protocol.

In any case, all went well.

The larger problem is that this bladder cancer has recurred several times now.  This summer, I was given the BCG immunology treatment for six weeks.  That is supposed to be 70% effective in preventing bladder cancer recurrence.  Obviously, it did not work.  My doctor is searching for other solutions.  He says that there is some evidence (that means not proven with acceptable studies) that interferon added to the BCG can help.  He is unsure of it and also insurance would probably not cover it. I will probably re-do the BCG treatment in any case.  My doctor has also checked for any drug studies that I could enroll in.  So far, three studies have turned me down because I also have neuroendocrine cancer.

We will have to keep searching.  I really do not want to have this procedure every six months until my bladder walls are so thin they have to remove my bladder.

Other news

A. I have been seeing a chiropractor for five weeks now, twice a week because I have severe back pain.  Two problems plague me:

  1.  Degenerative Disk Disease Basically, damaged or worn out disks between the vertabrae.  I am the oldest of 12 children and at least 4 of us have this problem.
  2. Diffuse idiopathic skeletal hyperostosis (DISH) Essentially the tendons in the spine start turning to bone.  This and the degenerative disks above were first seen because I have so many full body CT scans and a bone scan checking my neuroendocrine cancer.  They do not know the causes and there is no cure. It is not uncommon but usually found in very old patients.  Darn it! I am not that old yet. Lucky me.

So far the chiropractic treatment has managed to move the pain around but not reduce it much although  I do have a few good days which is good. My PCP also prescribed a treatment of prednisone for me. The drug got rid of sudden shooting pains I had, but the rest was not changed.

I have also been trying hot yoga for it, for stretching and increasing flexibility.  After an hour of that, I am usually more comfortable for 12 to 36 hours.  I’ll keep that up.

B. Next week, I get to see my NETs specialist, Dr. Eric Liu. We’ll decide on my next scans, blood tests, etc. And, I will talk about a little bit of increase in symptoms.  Which would be more frequent pain in abdomen, more frequent diarrhea, more fatigue. Of course, I’ll get my monthly Sandostatin injection (or jab as the British say which is appropriate for this.)

C. Finally the good stuff.  We love, love, love our new little granddaughter Margot.  She is very different from our grandsons.  All is well, very healthy with her and her mom.

Margot - her first day
New born, already lifting her head!

May we all have the best possible outcomes,

Cy

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