Tag Archives: carcinoid

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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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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