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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Future House Sound

Today I released my first music in the Future House genre.  It has been fun to learn and produce.

I have had to learn a lot just to put this together.  My skills with the DAW (digital audio workshop) software Reaper have been growing steadily.

Here is the YouTube link:

House of Music

Watch this video on YouTube.

Here is soundcloud

If you are using Firefox browser, the soundcloud player does not work!  I am trying to get solutions to this.  Click the link below to listen to the music.

Listen to: House of Music

 

I hope you enjoy it.

Namaste,

Cy

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Great News and Not So Great

Wonderful News!

On Monday August 22, I became a grandfather for the third time.  This time the child was a girl.  We are very excited and ready to spoil this girl to pieces like any good grandparent.

Margot 01
Margot – Granddaughter
Margot & Erin 01
New born Margot and proud mom Erin.
Margot & Family 01
Margot, Tex, Erin, big bro Charlie

 

 

 

 

 

 

 

 

 

Mom and baby are well. They will probably be sent home Thursday. Much joy!

The pictures are by Dad Matt and Grandmom Debbie.

 

 

 

 

 

Not so good.

I saw my urinary surgeon this morning and the bladder cancer. The cancer has recurred in only 4 months and while I was undergoing the BCG immunology treatment! My doctor calls it a nuisance cancer., not life threatening if treated.  But, it means that I have to train yet another anesthesiologist on the protocols for anesthesia with a NETs patient. (I almost died with carcinoid crisis under anesthesia five years ago and I don’t want to repeat that.)

The cancer has to be removed again (4th time). My surgeon is looking for alternatives or add-ons to the BCG treatment.  He is also looking for promising studies that I could join.

It may be nerves or some other physical issues but I have had the feeling that my NETs may be progressing a bit.  A small increase in abdominal problems and pains is noticeable.  I should see my specialist next month.

Life works this way.  Never all good, not really all bad.

May we all have the best possible outcomes,

Cy

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Immunology Treatment, Sciatica, News

Time for updates on old business and some news.

Immunology treatment

Last month, in BCG Immunology Treatment Started, I posted about the BCG Immunology treatment that I was undergoing for urinary bladder cancer.  Ten days ago it was finished for now. Although the side effects were minimal compared to other things that I have undergone, it was great to be done with it.
I have an appointment for a cystoscopy in about six weeks.  They put a camera in your bladder to look at it!  Not pleasant, but it will show whether there are any signs of the cancer.  I am told that I may have to have another three weeks of treatment in about three months.

Sciatica

In my post May 2016 Scotland and Iceland, I mentioned that I was having a great deal of trouble with sciatica.  This is because I have what is known as “degenerative disk disease” in my lower back. The sciatica pain is caused by the vertibrae pinching the sciatic nerve and inflaming it.  There  has been pain and tightness in my back, both sides gluteous, hamstring and calves.  It can be difficult to walk, stand and negotiate stairs.  I had a real fear of falling sometimes.
Three and a half years ago, I had a milder version of this. My PCP put me on a three week treatment taking Prednisone tablets. It worked well and lasted for over two years.
I suggested this to my current doctor and he agreed.  However, my urinary surgeon said that it would interfere with the imunology treatment.  So, with doctor’s instructions, I have been taking far too much ibuprofen and it has started causing stomach issues.
I started taking the Prednisone three days ago! Hoorah!  It’s working well.  My back and legs are better than they have been in three months and getting better. Hopefully, the improvement will last a long while.

There are lots of cautions and problems with Prednisone.  Be careful.

  • Many people cannot tolerate it.
  • Side effects can be major. See: Prednisone Side Effects.
  • For almost everyone it should only be taken for a few weeks including a taper off. I have five days two tablets; five days one tablet; five days half tablet; five days quarter tablet; for a total of twenty days.

Neuroendocrine Cancer News

I feel lucky to report that I am having almost no problems associated with neuroendocrine cancer at this time.

My friends at The Healing Net Foundation publish a blog by my specialist Dr. Eric Liu and other very interesting things.

  • First, they publish a very good information pamphlet for medical professionals.  When you realize that your doctor knows little or nothing or wrong things about your NETs, see if they will read it: NET Primer: Informational Brochure . It’s also pretty readable for us patients.
  • This is an exciting new blog entry from Dr. Liu:
    REASONS FOR HOPE–New in NETs
  • An article on research in Sweden hoping to develop a virus to attack NETs!
    Swedish Oncolytic Virus

That’s quite enough! I should write more, shorter posts.

May we all have the best possible outcomes,
Cy

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