No Change, No Progression

I just got a message from Oncology that my octreoscan indicates “no change, no progression”.  Also Urology reports that my bladder cancer has not recurred.  WOOOO! HOOOO!

Also, they noted that the two metastases in my liver are still there.  No surprise, but at least there are no new ones. These are the best results that I can expect.

Urology is having me do a CT scan on wednesday just to make sure there is no cancer in my kidneys.  This is apparently different from my regular CT scans for carcinoid.  Will let you know of results.

This regular testing and treatment is part of the life of a cancer patient.  I currently scheduled for:

  • Sandostatin LAR Injections every 28 days.
  • 3 to 6 blood tests every 3 months.
  • CT scan every 6 months.
  • Bladder cystoscopy at 6 months
  • Octreoscan every year.

Waiting for test results so often can be a worry.  One always suspects things are not good.  In fact, I find that even though I have generally felt healthy, every small symptom can lead me to believe that things are getting worse.  However, on the flip side, we need all these test to make sure things are not getting significantly worse and requiring action.

I’m glad the medical profession is watching me.

Namaste,

Cy

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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.

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Worldwide NET Cancer Awareness Day

Net Cancer Day
Worldwide NET Cancer Awareness Day

 

“If you don’t suspect it, you can’t detect it.”

 

November 10 is Worldwide NET Cancer Awareness Day.

 

NET means Neuroendocrine Tumor which is a cancer that usually grows slowly and generates endocrine substances like seratonin, chromagranin A, gastrin, insulin and others. These substances are natural to your body but become poisonous to your body in large amount causing many different symptoms, illnesses and even death. This is a rare disease. Only about 130,000 people in the US have been diagnosed. Because the symptoms are diverse, it is often mis-diagnosed or not diagnosed at all. Doctors are taught not to diagnose for rare diseases. The classic teaching is: “If you hear hoof beats, don’t think zebras.” Because of this, we call ourselves zebras.

Learn more about NETs here: http://netcancerday.org/

I have Carcinoid Tumor which is a type of NET. It was discovered by accident in my liver during a CT scan of my lungs for a different possible problem. The primary tumor is somewhere in my gut but the doctors have not been able to find it. The primaries can be very small and multiple. It has metastasized to my liver which means it is incurable. I have had half my liver removed with a very large (tennis ball size) tumor in it. This blog has many entries about my struggle with the disease.  To read more, start here: Carcinoid Cancer – My Story

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Good news about bladder cancer, and related stuff!

Last week and this week the news (and my attitude) has gotten better.

Last week I got news that the latest CT scan showed that my carcinoid tumor was stable (still there, not growing, not shrinking).

Last week the Foley catheter was removed.  What a relief!  The two weeks wearing that was more unremittingly uncomfortable than any two weeks after surgery and other medical procedures that I have ever experienced.

After the Foley was removed, I did have to self-catheterize four times a day until yesterday.  Not pleasant but much better than the Foley. Yesterday, I was allowed to stop because it just was not needed.

Today, I was checked for bladder cancer and none was found.  I will be checked again in three months.  Because of my success with the catheters and no bladder cancer, we will not do prostate surgery at this time.  Wow! Yeah!  I have had more dates with the surgeon’s knife than I care for.  I could wait a long time for another surgery and not miss it.  I will have to keep a catheter kit with me in case of problems again but that is no problem.

May we all have the best possible outcomes,

Cy

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CT Scan shows Carcinoid Tumor is stable

I wrote last month that the blood tests showed very low marker values.  Today I got the news that the CT Scan I had last week shows that the carcinoid tumor is stable.

This is very good news.

Hopefully I can now deal with the prostate issue.  Surgery is not scheduled yet but I hope to have it this month so that I will be healed enough to take our scheduled trip to Scotland (grandbaby!) next month.  This week, I get trained to self-catheterize.  Growing old is not for the faint of heart.

Namaste,

Cy

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Again?

This is not about cancer but it is about other health issues old men have.

On last Friday, August 22, I was fishing with a friend in the Colorado mountains and had severe abdominal pain. Went to the Emergency Room in Frisco.  I had been unable to urinate much for more than a day.   They catheretized me and told me to see my regular doctor on Monday to have the catheter removed.  They thought that it was an infection and gave me antibiotics.

On Monday, I saw my doc and he removed the catheter and tested that I could urinate.  All seemed well.  But, Tuesday morning I was again in a hospital ER in the worst pain I’ve ever had (hard to believe given my history).   Again my bladder was full and I couldn’t urinate.  Again, a catheter was inserted and I was told I had to keep it in until I talk to my urologist.  By late afternoon I had talked to urologist and was told that it my prostate.  I have had BPH (Benign Prostate Hyperplasia) better known as an enlarged prostate for over 20 years. Most men have it at least mildly by the time they are 80.  I’m just lucky, I guess.  It has been treated with drugs successfully…  No longer.  I have run out of drug options.  My options are either surgery or wear a catheter for the rest of my life.  A catheter is uncomfortable at times (perhaps more for men than women).  I’m told you never really get used to it.  There can be negative effects from surgery (no surprise there).

I will go for surgery. It will not happen until at least mid-September because of doctor’s schedule and I am not dying or in extreme pain for now.

Unfortunately, I am forced to cancel next week’s fishing and camping with best friends in Wyoming.  It’s too isolated and too rough for me with this problem.  I have told the doctor that I want to be healed enough to go on a planned trip to Scotland in October to see grandson, son and daughter-in-law.

Buddhists talk a lot about impermanence.  All of existence will change and is always changing.  Suffering is not just pain.  Suffering is clinging or attachment to things that will change and will cause us pain.  None of us can avoid pain.  We can avoid suffering by not clinging to the conditions of existence that will/must go away.  My body is teaching impermanence.  Aging is an obvious instance of impermanence.  Can I minimize the mental/emotional suffering of this?  Maybe I will be able to tell you in the future.

Namaste (I bow to the divine in you),

Cy

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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

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