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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A Week in the Life of a Carcinoid Patient was last modified: December 9th, 2014 by cy

11 thoughts on “A Week in the Life of a Carcinoid Patient

  1. Hey Cy
    Well, I guess there is some good news coming your way and for a change, the dentist visit isn’t so bad! I have also gone through Octreoscans which are expensive, but are effective in diagnosing any unwanted hormones!
    It’s been two years since my surgery which so far, has proven to be successful. Two months ago, I was diagnosed with Type 2 Diabetes but they are controlling it with medications and my menu’s have taken a totally different direction……so hard to live by during the holidays, but I feel blessed and I’ll deal with this.
    I wish you the best and follow your emails! This is only a step back for you and you are taking so many steps forward to a successful recovery!
    Hope you have a wonderful holiday season!

    1. Hey Linda,
      The injections are every 28 days.
      The octreoscan is yearly.
      I have blood tests every 2 months.
      A CT scan every 6 months.

      A guy has to do something to keep busy once retired.

      Cy

  2. Good Evening Cy,

    I just read your post and I wish you good luck. I am curious if you have ever considered having the Gallium-68 scan.

    I had an octreoscan in early 2013 and subsequently saw Dr. Liu in June 2013 for a complete workup and to schedule surgery to remove the carcinoid tumor that was displayed on the octreoscan, which is on the mesentery of my small intestine.

    I returned in August for the surgery but prior to the surgery I had the Gallium-68 scan. When Dr. Liu finished his surgeries that afternoon we met him at his office and reviewed the GA-68 scan together. When he opened the DVD and displayed the results there was silence in the office. All of us recognized immediately that my challenge was far more significant than we would have ever known from all of the many tests I had prior to that day.

    Yes, there is a tumor on the mesentery of my small intestine but it is also in my spleen which is greatly enlarged, it is in my liver, my spleen, many lymph nodes and there are over 100 metastases in my skeleton from my feet to my cranium. Needless to say, my surgery was cancelled and I continue to try to slow down my disease.

    I would encourage you to consider a GA-68 scan and the NIH in Maryland is doing the tests as well as many Universities. Thanks to Dr. Liu, it is now possible to get the test done in many locations in the USA.

    I have your email address and I will send you a comparison of the octreoscan to the GA-68 scan which Dr. Liu uses in some of his presentations. The patient is me.

    I wish you continued success in your battle.

    Peter Blake

    1. Thanks Peter,
      I do think about the GA-68 scan from time to time.
      Since my liver surgery included much exploration, I have not felt a great need.
      I would like to see the comparison of octreoscan vs. GA-68.
      I saw Dr. Liu speak last year. He is impressive.

      Have the best possible outcome, Peter.

      Cy

  3. Cy- Wishing you and your family a Merry Christmas! Hoping and praying for the best possible outcomes for you. I’m now on Sandostatin 30mg lar every 2 weeks with the occasional sweat and usual uncomfortable digestion. So far Sandostatin lar has not worked to slow the growth of my liver tumours. And also I’ve found out my ferritin level is 0. It’s like filling the gas tank with a thimble of gas. So now I’m on iron replacement therapy. Starting chemotherapy in January , it will be affinitor or sutent. I have islet cell neuroendocrine cancer of the liver , secondary to the pancreas. Any thoughts about these drugs? Princess Margaret Hospital in Toronto is getting PRRT in the next 9 to 12 months. I need a Gallium 68 test to see if my tumours have the right receptors. They are hard to detect when ,although I have it through my liver, they are less than a cm. I have one that is 1 cm and they plan to do
    a biopsy. Feeling tired but ok. Slowly bringing all my Christmas stuff out. Keeping up the routine and working,God willing. Wishing the best to you and yours. \
    Take care Shelley

    1. The Happy Holidays to you, shelley orr.
      The only drug that I am familiar with is Sandostatin LAR. It helped me a great deal but I had to go to 40 mg every 3 weeks until my liver surgery. If octreoscans work for you then you have the right receptors as well. Remember though that sometimes not all tumors have receptors even in the same person!
      Feeling tired is a side effect of NETs and of most other cancers. Hopefully the right treatment will shrink or kill many of the tumors and you will feel better. I know that after half my liver was removed with the largest tumor and my gall bladder, I felt better than I had felt in several years. One and a half years later I still feel pretty good.

      Namaste,
      Cy

  4. Hey Cy,

    Hope it went well (both the O-scan and the butt dart, and cystoscopy)! Please let us know results… I have a good friend with bladder cancer. He hasn’t said what “stage” but I’m guessing he’s at IV since it is incurable. Sigh. Hope all is well and that you have a very Merry Christmas!

    1. Hi Sharon, Thanks for asking. I hope you are well.
      All went well.
      No bladder cancer detected but he scheduled me for a CT scan next week just to check kidneys.
      Well blog about everything when I have the octreoscan and CT scan result.

      Namaste,
      Cy

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