Tag Archives: carcinoid

How did this happen?

Today, I turned 70 years old! How on earth did that happen?  Below is a picture of my wife Laurie whom I blame for my continued existence more than anyone else.  But I also depend on my kids, grandkids and all the rest of my large family (11 siblings) and my friends for their love and support. Of course the medical establishment has done much to keep me going, although I had to learn to battle them when I felt they were wrong.

I just spent 11 days in the Netherlands with Laurie, Derek, Kat and Ansel.  It was a great trip during which we could celebrate Ansel’s 4th birthday, Derek’s birthday and my own birthday. We saw the Van Gogh museum in Amsterdam and saw some of the King Day (big holiday) celebrations in Amsterdam. We spent several days in Haarlem as well and had a wonderful tour of the tulip gardens with the tulips at their peak.

Kat had arranged for Airbnb accomodations in both cities and they were very nice.  The very nice flat in Amsterdam was beautiful but was a 4 flight walkup. The old house in Haarlem had some stairs that were difficult but we managed.

The trip was marred only slightly by some problems with my sciatica. Fortunately, my

spine doctor had supplied me with a prescription for methyl prednisolone. I filled that and took it with me to the Netherlands which enabled me to get around most of the time.   The injection’s good effects are not lasting as long as I would have hoped.

Yesterday was the 6th anniversary of my diagnosis but I had no problems with the Neuroendocrine Cancer on this trip.

Laurie, Margot, Charlie - Easter 2017
Laurie, Margot, Charlie – Easter 2017
Eating Ethiopian Food  with Ansel in Amsterdam 2017
Cy and Margot - Easter 2017
Cy and Margot – Easter 2017

As usual with my list of diseases, the day after I got back, Friday, I went to the oncologist’s for my monthly butt dart (Sandostatin injection).  Tuesday I meet with my oncologist to discuss the neuroendocrine cancer and perhaps the Netspot (GA-68) scan.  Next Monday I restart weekly physical therapy for my spine.  The beat goes on.

May we all have the best possible outcomes,
Cy

Digiprove sealCopyright secured by Digiprove © 2017 Cyril Ball

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

Digiprove sealCopyright secured by Digiprove © 2017 Cyril Ball

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

 

Digiprove sealCopyright secured by Digiprove © 2016 Cyril Ball

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

Digiprove sealCopyright secured by Digiprove © 2016 Cyril Ball

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

Digiprove sealCopyright secured by Digiprove © 2016 Cyril Ball

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

Digiprove sealCopyright secured by Digiprove © 2016 Cyril Ball

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.

Digiprove sealCopyright secured by Digiprove © 2016 Cyril Ball

A Week in the Life of a Carcinoid Patient

Since liver surgery a year and a half ago, I do not have weeks like this very often.  Prior to that surgery and during the time that I also had atrial fibrillation (AFIB), there were many weeks filled with doctor visits.  Many patients with carcinoid are constantly at doctor’s offices and clinics and emergency rooms.

Today, Monday, I merely have a dental exam and cleaning.  No big deal.  Most everyone has those.

This week, it is time for my annual octreoscan. For an octreoscan, the patient (me) is injected with a somatostatin analogue (usually octreotide) which has been tagged with a radioactive molecule. If there are tissues in the body which have receptors for somatostatin (a hormone we all have in our bodies), the tissue will pickup the octreotide molecules including the tags.  Then radioactivity detectors called gamma cameras can scan the body and create a picture of the body with dark spots where the radioactivity has accumulated.  Often carcinoid tumors have the somatostatin receptors (sometimes not at all and sometimes only some tumors have them and not others in the same person. Then detection is much more difficult).  You can see example pictures here: https://en.wikipedia.org/wiki/Octreotide_scan.  Carcinoid tumors with receptors will show as darker spots in the pictures. The procedure is that the patient  receives an injection usually thru an IV port in the hand or arm.  4 hours later the patient must lie still with arms over head(uncomfortable) for an hour while the scanners operate.  24 hours after that, the patient must lie in the scanner for 1.5 hours for another scan. Often 24 hours after that, you get another hour or 1.5 scan and sometimes you get another one 24 hours after that. So you will be injected once and scanned up to 4 times in 4 days.

It is a pain.

So my scans and potential scans are scheduled for Tuesday, Wednesday, Thursday and Friday.

On Wednesday, I also have a cystoscopy to see if my bladder cancer has recurred.  This is totally separate from the carcinoid.  Wednesday is my day for a mediation group as well.  At least that will be pleasant.

On Friday, I also have my every 28 day Sandostatin (a long acting version of octreotide (somatostatin)) injections. These are deep muscle injections to both sides of my rear end.  I might have these every 4 weeks for the rest of my life.  The injections have been delayed a few days because they might interfere with the octreoscan.  Because of that delay, the chills that I feel at evening near the end of the injection cycle are more severe and last longer than normal this week. At least for now, I do not have the severe night sweats that I also had before the liver surgery.

An interesting point about the octreoscan is that I will be detectably radioactive for about 30 days.  They give me a form to use in the airport if I need to travel because the airport security will detect the radioactivity and probably not very welcoming.

I promise to blog about the carcinoid cancer and the bladder cancer test results as soon as I have results.

Namaste,

Cy

EDIT: Tuesday Dec 9.  I just returned from the first octreoscan appointment.  They have changed the procedure!  Today I just got the IV port with injections. The first scan is tomorrow.  Now I must fast every morning before the scans so I have rescheduled the scans from 1 PM to 9 AM for the next 3 mornings.  They say this will improve their images.  I sure hope so.

Digiprove sealCopyright secured by Digiprove © 2014 Cyril Ball

New Carcinoid Tumor Marker Results.

I have gotten my blood test markers back for this quarter. Seratonin, chromogranin A and gastrin are all very low. In fact chromogranin A and seratonin are below the normal range! A few months ago, a PA in oncology told me that he had never seen them this low in a patient!  These markers are tests to see if the disease is progressing/changing.  When I was first diagnosed, seratonin was 7 times higher than it should be. Chromogranin A was 3 times too high. Gastrin was 50% too high.

The numbers have been low since 14 months ago when half my liver with a 6.3 cm tumor was removed. Before the surgery the numbers were in the high-normal and sometimes high range and I was feeling ill.  Obviously the tumor was generating a lot of crap into my blood stream! I felt better than I had felt in years just a day after the 5.5 hour surgery. I still feel great although the diarrhea happens occasionally, usually triggered by some food or activity. 

The next thing will be a CT scan which is scheduled every 6 months.

In the meantime, I continue to feel well.  Night sweats and evening chills occur a few times a month as the monthly injections wear off.  The symptomatic diarrhea happens a few times a month, probably triggered by something I eat or do.  I can live with that!

I am fishing a bit more this year. Meditating, going to AA meetings, Working on music and youtube tutorials.  Laurie and I have been to Mesa Verde to see the cliff dwellings again.  All good stuff.  I did not know how bad I felt, how depressed, until after the surgery.

May we all have the best possible outcomes,

Cy

Digiprove sealCopyright secured by Digiprove © 2014 Cyril Ball