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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A little noise tutorial

Today, I finished a small Youtube tutorial on how to make a laser noise in your Digital Audio Workshop (DAW).  This type of sound effect is used in many electronic dance music and techno music creations.

I used the Reaper DAW and the TX15Wx sampler plugin and a simple sine wave.  The TX15Wx is a nice, free VST plugin.  It has plenty of good features.  Samplers are used to simulate real instruments by adding samples of the instrument to the plugin.  In my case, I am making a noise that I want with it.

Tutorial-Laser-sound

Watch this video on YouTube.

It was fun to do and less complicated than one would think.

May we all have the best possible outcomes,

Cy

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Biopsy Results and BCG Immunology Treatment Started

Biopsy results from the lump removal last month

As Dr. Liu predicted, it is not cancer! It is just an angiolipoma. That means a benign tumor composed chiefly of fat cells and containing an unusually large number of blood vessels. Don’t let the word “tumor”  trouble you.  It’s benign; not breast cancer and not neuroendocrine cancer.  Dr. Liu says that I just a lumpy, bumpy guy.

BCG Immunology treatment started

Friday, I had the first of six BCG treatments to try to prevent the bladder cancer from recurring.  BCG is an immunotherapy which means a treatment which will strengthen the patient’s immune system against the disease.  I have read that this therapy can get rid of bladder cancer in 70% of the cases. It hopefully will keep it from recurring.

The treatment for me is to be done every Friday for six weeks.  After that, there will probably be treatments every Friday for three weeks on a quarterly basis for a few quarters.

So what is it? BCG is a live, weakened form of tuberculosis in a saline solution. 50cc of this solution is placed into the urinary bladder via a catheter. I am then sent home with the instruction to hold it for one to two hours. (Not that easy for me!) I have to thoroughly clean myself after each urination and neutralize the toilet with bleach for the first 6 hours. Possible side effects are infection, pain, flu-like symptoms such as fever and feelings of discomfort and tiredness.  These may show up or increase with each weekly treatment.  Of course there is a long list of other possible side effects which are less likely, including BCG (tuberculosis) infection. You can imagine the shock of seeing the nurse who will do the treatment showing up in a hazmat suit!

Having had the first treatment, I can attest to some pain the first couple of days and tiredness and also fever two nights in the middle of the night.  It also seemed to trigger my carcinoid diarrhea this whole time.

Here’s hoping that it works and that the side effects don’t get much worse!

May we all have the best possible outcomes.

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May 2016 Scotland and Iceland

Thursday we returned from a trip to see our son, daughter-in-law and grandson in Scotland and to do a quick tour of Iceland.

Scotland

Ansel and Gran Big
Teaching Ansel to use a ruler.

The weather wasn’t the greatest and I was constantly bothered by sciatica meaning that I could not walk or stand much. However, it was a great pleasure to spend a week with the family, especially the three year old grandson.

He’s great fun! The photo is by his mother, Kat.

Derek and his family live in a house on the sea wall of an old fishing village called Cellardyke, overlooking the North Sea.  Very picturesque.

 

 

 

Iceland

After a week with them, we flew to Iceland. It’s easy to stop over there on the way back to Denver. My wife, Laurie, had found a nice hotel in the Reykjavik town center. Even with my sciatica I could walk to see the sights and eat without much problem.

Geysir Park Iceland
Geysir Park Iceland

We took a tour bus one day and saw a geyser at the Geysir Park and Gullfoss (golden falls) waterfall which is beautiful and powerful.

We also toured a greenhouse which grows vegetables getting heat and power from geothermal heat. We visited a site where the North  American Tectonic Plate rubs against the European/Asian Tectonic Plate. There were very visible rifts and cliffs in the lava there.

GullFoss Iceland
GullFoss – Golden Falls

It also contained the spot of the Icelandic Parliament which was the earliest European parliament.

It was sunny the day we got there. Overcast Reykjavik the next two days. Because Iceland is so far North, it was never totally dark at night time. You can see from the pictures that it was rainy and foggy on our tour.

 

I’m glad we did the stop at Iceland and, of course, to visit Scotland and family there. Hope that my health continues to allow me to travel.

May we all have the best possible outcomes,

Cy

 

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Mass in breast, not cancer!

Neuroendocrine cells are located throughout the body.  Neuroendocrine cancer could be found anywhere in the body.  Through the support groups, I know people who have it in their knees, elbows, bones, intestines, ovaries, liver, mesentery, lung, pancreas, under the skin, etc. So, when I found a lump in my left breast (wasn’t checking, just washing), I immediately went to the doctor.

This was before Christmas.  We agreed that it should be removed and biopsied, because although NETS in a breast is not dangerous, it could be the better known and more dangerous breast cancer.  Because I was changing insurance, I had to wait until I had new doctors lined up to get this done.

Dr. Liu did it.  It was a simple day surgery without anesthesia, just an injected anesthetic.  I was allowed to drive myself home.

The news is: It is a lipoma (capsule of fat). The doctor will have it biopsied but it is almost certainly a benign lipoma.  This is great news!  I can go on a trip to Scotland and Iceland next week with a light heart.

When we return from Iceland, the immunology treatment (BCG) for my bladder cancer starts immediately.  It will be once a week for six weeks and after that maybe once a quarter for three weeks.  It is not chemo and should not be that challenging.  I will report on the experience.  Someone in the Colorado Carcinoid Cancer Support Group suggested that the treatment might have some good effect on my primary cancer (the neuroendocrine cancer).  I will watch and report on that as well.

I certainly hope to be at the end of cancer adventures for this year.

May we all have the best possible outcomes,

Cy

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Carcinoid Anniversary #5

Woo! Hoo!

Today is the fifth anniversary of my diagnosis with carcinoid cancer (neuroendocrine cancer).  Like almost everyone, I had never heard of it before.  But, it was the word cancer and it was terrifying.  The doctor who called me said “The biopsy says carcinoid tumor and I don’t even know what that is, but it’s cancer. We have scheduled you to see an oncologist.”  It’s really terrifying to know a doctor knows the name of your disease but does not know what it is!

Being a geek, I scoured the internet for information.  In my experience, doctors don’t give you much information unless you ask questions.  You can’t ask questions with no information, so you get very little information from your doctors.  I found a study from 2006 that said carcinoid tumor with distant metastasis (liver in my case) had a 45% chance of 5 year survival.  That was scary.

But, I made it! Five years today.

Now of course, I know that 10 years ago, the injections that I get every month were not used as much and surgery was not recommended as much. Survival rates are getting better.  One reason that I am not at least very sick now is that I heard three experts speak at a meeting more than three years ago and they recommended surgery if possible.  My doctors wanted nothing to do with surgery.  I had to get a second opinion and fight for it but I got it.  I was better immediately and I still feel better than I did before the surgery, three years later.  I do not suffer many symptoms nor very often.  I am weaker and get very tired more often but I’m older also (I’m told).  My heart symptoms may have been caused or exaggerated by the disease or the medication for the disease but it seems under control for now.

That study I found also stated that the average age of carcinoid diagnosis was 64 years old.  I got the diagnosis one day before my 64th birthday!  Funny huh? Not so much.

It’s good to be able to report something good now and then.

Other news

A few weeks ago in Bladder Cancer, Spring Fishing, I reported about my procedure  for my second cancer.  At the time, things were good.  Shortly after that  blog post, I discovered that I had a severe UTI (urinary tract infection). I suspect that it was contracted in the hospital, but cannot know that.  Now four weeks since the bladder cancer procedure, I may be recovered from that or maybe I am almost recovered from that infection.  The doctor is testing to find out.

My NETs specialist has tentatively scheduled May 20 to do a lump removal from my breast to biopsy and make sure that the lump is either benign or carcinoid (which is not dangerous in the breast.  Hopefully I do not also have breast cancer.

Two days after that procedure Laurie and I are scheduled to go visit Scotland (our son and family) and then Iceland for a few days.

Tomorrow (my birthday), I am co-chair of the Colorado Carcinoid Cancer Support Group meeting.  Dr. Liu, our well-known specialist, is planning to come to the meeting so it should be even more interesting than usual.

May we all have the best possible outcomes,

Cy

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Playlist for my “Insane” album is now on Youtube

I have just finished creating a playlist for the “Insane” album that I have for sale.

No fancy videos but the music is all there.  This is mostly older pieces that I have decided to gather into an album and sell. To buy it click the “Go to my store” icon on the right.

Hope you try the playlist here!

Playlist: Insane
Watch this playlist on YouTube

May we all have the best possible outcomes,

Cy

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Bladder Cancer, Spring Fishing

Despite the cancer procedure last week, I decided to go on my annual spring fishing trip with friends.  We have been doing this more than 25 years.  Can’t let a little cancer get in the way of tradition!

The weather was beautiful here in Colorado on the Arkansas River.  The rental house that my buddy found in Salida was great.  We found the fishing to be tough, but we all caught fish.  My fish count was the worst.  That happens sometimes even to me and I had the excuse of recovering from bladder cancer surgery.

I had to go to the rental and sleep in the afternoon on the first and third day of the trip.  My body was weaker from the recovery and my carcinoid was acting up a bit, I think from the general anesthesia the week before and from the pain pills.  Although the bladder cancer procedure pain was not very bad by the time of the trip, my back pain has also been acting up lately and unfortunately I had a bit of a problem with climbing the steep banks of the Arkansas on the first day of fishing and I had to stick to easier access points for the rest of the trip.

My urinary surgeon called to tell me the biopsy results from the surgery.  He said that the cancer was non-invasive including a “black spot” he had worried about and that the good biopsy meant he would not have to remove my bladder!  I previously knew nothing of a “black spot” or the possibility of bladder removal.  I think they just don’t remember what they have told us or not.  At least the prognosis is good.

We agreed that I would go through the BCG immunology treatment that I discussed in my previous blog.  However, that cannot start until Laurie and I return from our Scotland/Iceland trip in late May.

The first three days in the mountains were mostly sunny with temperature near 70 degrees F. The last morning we fished with temperatures in the high 50s.  In the afternoon, we drove through a snow storm to get home to Denver. Today, the next day, the snow storm is here in Denver and we are expecting about 14 inches of snow.  Colorado is an amazing place!  I feel lucky to be living here.

May you have the best possible outcomes,

Cy

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My second album for sale

Album Cover
Album Cover

I have remixed a number of my songs and created the album that I call “Insane”.

The music genre is mixed; some dance, some rock, some electronica, some just my style!

NOTE: The pricing is pay what you want. If you click a button to buy something, there is a place to edit the price to whatever you want.

I am excited about this obviously. It has taken some bravery on my part to see if people will pay for my music.  There have been some sales of the first album.

The web address is:

http://www.nimbitmusic.com/cyball

May we all have the best possible outcomes,
Cy

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Urinary Bladder Cancer, Carcinoid Cancer, Medical People

The Treatment

Today, Friday April 8, 2016, I had a day surgery to scrape urinary bladder cancer out of my bladder and to place some chemo into the bladder. The chemo was an attempt to keep the cancer from recurring. This was the third time that the scraping procedure has been performed and at least the second time that chemo has been applied. I was released from the hospital a few hours after the procedure which took about an hour. There will be a biopsy of the material removed from me and my surgeon will let me know of the report.  In the previous treatments, I was told that the lesions were “normal” bladder cancer, not carcinoid and that bladder cancer is most usually related to smoking.  The procedure was deemed successful enough that I can go on a four day fly fishing trip in the Colorado mountains on Tuesday the 12th.

The surgeon and I will meet soon and decide whether to commit to a treatment called BCG. This is a type of immunotherapy drug used to prevent tuberculosis (TB), but it’s also an effective treatment for some non-invasive bladder cancers. It’s given directly into the bladder. It’s supposed to prevent bladder cancer from recurring and from becoming invasive. My surgeon says that the treatment lasts about three hours total and is performed once a week for eight weeks and then periodically monthly or quarterly.  I don’t yet have the full schedule that he proposes. The drug is actually composed of dead tuberculosis cells and there is a small chance of contracting tuberculosis.  My brother has had this treatment and it is apparently working for him.

What is the relationship to Neuroendocrine Cancer?

I had general anesthesia and I DID NOT have a carcinoid crisis and DID NOT have to stay the night in an ICU!  Whoopee!!! For those of you unfamiliar with Carcinoid Crisis, you can read these:

I have found over the five years since my diagnosis that I must always make sure that the surgeon and the anesthesiologist be well informed about NETs and carcinoid crisis and that they are prepared to take steps to avoid it or stop it.

The Doctors and Staff

Because I have changed insurance, this procedure was performed in a whole new environment for me. Different surgeon, anesthesiologist, nurses and even hospital.  I did my usual song and dance about the neuroendocrine cancer to the surgeon two months before the procedure and then reminded him a week before the procedure.  When the hospital called me for pre-operative arrangements, I did the song and dance again.  In all those songs I emphasized that the anesthesiologist had to be selected and notified in advance of these concerns. (Hospitals often select anesthesiologists the day they are needed.  Don’t let that happen!)

The surgeon was very supportive from the beginning and accepted a booklet for doctors about NETs.  The anesthesiologist called me at 8:00 pm the day before the surgery and we discussed my medical history.  We also talked about the facts that anesthesiologists are taught about carcinoid crisis in school but may never see a NETs patient in their career. He thought that he had seen one but wasn’t sure.  Both doctors expressed thanks that I had the knowledge and the willingness to insist on refreshing their knowledge of the subject. The nurses also seemed to have refreshed their knowledge on the subject.

All in, this was a very positive experience (given that it was a cancer procedure!)

May we all have the best possible outcomes,

Cy

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“Carcinoid” music video released today.

I got a great signal boost from The Carcinoid Cancer Foundation yesterday! The COO @CarcinoidNETs on Twitter tweeted about my new YouTube videos and she posted on the Carcinoid Cancer Foundation (CCF) Facebook page about my music and blog as well!

This is tremendous exposure for me and I am now trying to return the favor by posting a music video of my piece “Carcinoid”.  This music was composed in 2011 about 3 months after I was diagnosed with carcinoid cancer, during the time that I was quite ill from a treatment called chemoembolization or TACE (transarterial chemoembolization).  That treatment was supposed to be outpatient but I went into Carcinoid Crisis and spent the night in the Intensive Care Unit!  I was told that there would be “flu-like” symptoms for 3 weeks but mine lasted 4 weeks and for a week there was a fair amount of pain in my liver.  After the illness my symptoms from the cancer disappeared and my liver tumor shrank.  Unfortunately, after six months, the tumors grew back and the symptoms came back actually worse than ever.

The music is an echo of my emotional and physical illness from the cancer diagnosis and the treatment.

Carcinoid

Watch this video on YouTube.

 

This music is a free download at my store.

May we all have the best possible outcomes,
Cy

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YouTube Videos Loaded 2016-02-22

I have created some videos for YouTube to support my music store.  I am told that YouTube is the second largest search engine.  That means that more people will have the chance to see the videos and click on the link to the store.

Click here for my YouTube Channel.

These are simple videos which emphasize the music. I have also created a playlist for the album:

Playlist: Chillin It
Watch this playlist on YouTube

Since yesterday, I have received a few views and a couple of likes and a comment.

Since opening the store last week, there are a couple of sales and a few fans signed up.

Certainly not “going viral” but it’s a start.

Namaste,
Cy

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My music store is open!

I have decided to try to sell my music instead of give it away. The new store contains the first album that I have created from existing tracks. All have been freshly mixed/mastered.

Below is the profile and first product.  You can click the “Store” menu item at the top to see the store.

NOTE: The pricing is pay what you want. If you click a button to buy something, there is a place to edit the price to whatever you want.

I am excited about this obviously. It has taken some bravery on my part to see if people will pay for my music. The web address is:

http://www.nimbitmusic.com/cyball

I will be adding another album soon.

May we all have the best possible outcomes,
Cy

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Mid Winter Neuroendocrine Conference 2016

Saturday February 6, the University of Colorado will host our Mid Winter Neuroendocrine Cancer Conference.
The agenda and a link to registration are posted on the Colorado Carcinoid Cancer Support Group website:
http://cccsg.net/

This is the first year that the University of Colorado Cancer Center has hosted and arranged this and we are excited to attend it.

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Scotland, Carcinoid, etc. January 2016

We returned yesterday from Scotland. We took grandparent Christmas to the Derek, Kat and Ansel there. It was fun.

The weather was not as bad as it could have been.  Temperatures between 31 F and 40 F.  Some days of drizzle. The Scottish word ‘dreich’ describes wet, cold, overcast; we had some of that, but, no wind and storm from the North Sea.  We were fine, if a little cold, walking around the town.

This was the second trip to Anstruther that we stayed at a bed & breakfast called the ‘Lahloo Bed & Breakfast’.  It is named after an old clipper ship.  We enjoy the proprietors, the rooms, and the breakfasts. Its location is perfect, just a few blocks from our son’s house and a short block to the picturesque harbor.  If you would like to know more about it go to www.lahloobandb.co.uk.

As usual, I experienced the carcinoid syndrome for about half the trip, but it was controlled pretty well by drugs.  It did not prevent me from being able to confidently take long walks and bus rides.

Now that we are back in Denver, I will schedule the bladder procedure to remove bladder cancer.  My new urinary cancer specialist says we should probably also plan on the biologic treatments.

Also, within the next couple of months I will be scheduled for scans to assess the progression of the carcinoid cancer. A CT scan and the new (to the U.S.) GA-68 scan are in my future.  The GA-68 scan produces much better pictures of the location of the neuroendocrine cancer tumors than the octreoscans that I have had annually in the past.  When matched with the CT scan, the doctor may be able to more exactly locate the tumors in my body.  I probably will also schedule a minor, day surgery to remove two lumps from my breast to determine if they are NETs or breast cancer or just benign lumps.

You can be sure that I will write about that stuff as it happens and results are known.

May we all have the best possible outcomes,
Cy

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