A Beautiful Colorado Day, But…

It’s a beautiful Colorado summer day.  The sky is blue from horizon to horizon.  The temperature is a comfortable 80 or so.  Just had a four and a half day walk to clear my head and enjoy being here.

But, I saw my urological surgeon for a checkup this morning.  The bladder cancer has come back.  I will have to undergo the same procedure that I had one year ago and probably some other treatments after that to try to prevent recurrence.  I was told that there is a 50% chance of recurrence a year ago.  My brother David has also had all of this happen to him just six months ahead of me.  For both of us, there is a high survival rate if it is treated quickly.

In addition, I had a blood test for blood sugars today and the results are already back.  Slightly higher than the maximum range. There will be all kind of diabetes noise from the doctors.  I will have to make sure that they understand that Sandostatin LAR that is injected into my rear end every 28 days for Carcinoid cancer is known to cause a lot of variance in blood sugar level in some patients.  I am thinking of trying just one injection a month meaning 20mg rather than 40 mg a month since my symptoms are very little or non-existent right now.  The only troubling thing is that Sandostatin has now been proven to slow the growth of Carcinoid tumors as well as treat the symptoms.

As of January this year, another drug called Lanreotide (trademark Somatuline) was approved for slowing the growth of Carcinoid cancer and is known to control symptoms in many patients.  I mentioned it to my oncologist a few month ago and it seemed that she had never heard of it and thinks that it is not in my HMOs formulary.  I may need to start a crusade for them to accept that.  It is known to work often for patients who cannot tolerate Sandostatin because it makes them sicker.  Specialists are beginning to switch patients who have experienced atrial fibrillation (like me), varying heart rates (like me) and varying blood sugar levels (like me) because all those can be side effects of Sandostatin. The injections are supposed to be less painful as well.  I wonder how hard I will have to work to get that.

I am co-leader of the Colorado Carcinoid Cancer Support Group (www.cccsg.net). Last week 30 of us had dinner with Dr. Eric Liu, a renowned specialist in carcinoid who just moved to Denver and has started a carcinoid clinic.  There are so few clinics like this and he is already well known… Patients are already planning to come to Denver from all over the country.  I am planning to find a way to get my HMO to refer me to him (and pay) to form a treatment plan.  If surgery is a necessity, I will again find a way to refer to him (and pay) because he is a highly skilled surgeon who has handled only carcinoid patient for years.  He sees more carcinoid patients in a week than the clinic I go to with six oncologists sees in a year.  For my health, if I have to, I will leave the HMO and seek other insurance.  This is difficult because in all ways but the rare disease (even there they are better than many and I feel they care) I have been well cared for and I would lose all those doctors.  Leaving my insurance would be impossible were it not for the Affordable Care Act and Medicare because no insurance would voluntarily cover a someone with a rare and expensive cancer.

I guess we will have to wait and see how all of this works out.

Namaste,

Cy

 

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Lesions and Tumors and Cysts, Oh My!

You may have read that a new lesion was seen on my liver a couple of weeks ago.  Even though I had my first  Dx (diagnosis) 4 years ago, I still have to think twice about what the medical people mean when they say lesion or tumor or cyst.

Four years ago, I had a bad cough.  My PCP (primary care physician) could not determine what it was, even with a chest x-ray.  So he ordered a CT scan.  The next morning I had the CT scan.  That afternoon he called and told me to go to the hospital immediately. Not for my lungs but because the CT scan had showed a large mass in my liver!

I spent about five days in the hospital.  They took a sample from a small spot on my lungs and determined that it was only a virus colony.  They never even treated it and the cough went away.  I was seen by seven doctors and interns.  The thing in my liver was being called a cyst.  It  was just about 6 cm which is almost as big as a tennis ball.  They put a drain into it in a CT scan assisted procedure.  Fluid drained from it for four days.  The fluid was sent to the lab for biopsy.  My understanding is that it was sent back to the lab several times for more tests because every test they did came back negative.  The sixth day I was sent home.  They said that they thought it was a benign cyst.  One doctor asked for more tests.  The day after I went home, he called.  The lab finally had done a test which told them that the cells were consistent with neuroendocrine tumor.  The doctor said “I don’t even know what that is, but it is a cancer.”  The next day I had CT scan assisted needle biopsy.  The biopsy was conclusive for neuroendocrine cancer, specifically carcinoid cancer.

The following definitions are from the Merriam Webster MedlinePlus Medical Dictionary.

  • lesion – an abnormal change in structure of an organ or part due to injury or disease; especially : one that is circumscribed and well defined.
  • tumor – an abnormal benign or malignant new growth of tissue that possesses no physiological function and arises from uncontrolled usually rapid cellular proliferation—see cancer .
  • cyst – a closed sac having a distinct membrane and developing abnormally in a body cavity or structure.
  • benign – of a mild type or character that does not threaten health or life.
  • malignant – tending to produce death or deterioration <malignant malaria>; especially : tending to infiltrate, metastasize, and terminate fatally <malignant tumors>.
  1. I question that a 6 cm (2.4 in) sphere in your liver is benign in any case, but I’m not a doctor.
  2. It appears that both  tumors and cysts can be lesions.
  3. Tumors can be cysts and vice versa.
  4. Lesions, tumors, cysts can all be classified as benign or malignant.

It does not appear to me that the above are used very consistently by the medical profession.

Notice the phrase in the tumor definition “arises from uncontrolled usually rapid cellular proliferation”.  Neuroendocrine cancer growth is uncontrolled without question in my opinion.  But the “rapid cellular proliferation” part trips up many practitioners and their patients. Doctors and patients alike are used to thinking of cancer as fast growing.  Patents are sometimes told that their neuroendocrine cancer is not malignant or even not cancer.  Absolutely not true! Neuroendocine/carcinoid is recognized as a cancer (See the NIH Types of Cancer).  So it is recognized by the National Institute of Health (NIH) as a cancer. It is typically malignant even though slow because it metastasizes readily (according to the NIH carcinoid cancer is about 80% likely to metastasize) and grows much larger sometimes in the metastases.  It is dangerous to the patient’s health also because it can typically generate neurotransmitters uncontrollably.  These things like serotonin, gastrin, insulin and others can cause many health problems and ultimately death.

Well now maybe I will have that straight the next time I think about it.

Namaste,

Cy

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Carcinoid and Scanxiety

A couple of months ago my fellow NET cancer blogger Ronny Allen wrote a blog which he  called No Fear about the fear some people experience before their routine scans checking for more cancer.  We often see this called “scanxiety”  He has no fear before those scans and neither do I.  They keep us healthy by allowing us to know what needs to be addressed.

However, I certainly have found I can get anxious if the results are reported to me late as happened last week.  And I can be downhearted when the results are poor as they were last week.

I think it would be instructive to look at my annual schedule of meetings, tests and treatments relating to carcinoid cancer. This is not an unusual schedule for carcinoid cancer.  Bear in mind that this schedule may be mine for the rest of my life!

  • Every 28 days I go to the clinic to have an injection in each buttock of Sandostatin LAR.  This is deep muscle and a big needle. Sometimes it burns. Sometimes one side or the other hurts for several days.  The drug both reduces symptoms and may inhibit tumor growth.
  • Every three months I have a set of blood tests.  Seratonin, Chromogranin A, gastrin (these three are specifically to try to catch disease progression but may not be reliable. Currently specialists are recommending pancreatin and neurokinin A instead). Also, Comprehensive Metabolic Panel, White Blood Cell Differential, Complete Blood Count with Differential and sometimes others.  At least six vials of blood are drawn.
  • Also every three months I meet with my oncologist or a PA and discuss the above plus any other recent scans and tests and to discuss my symptoms and any problems.
  • Every six months I have a CT scan.  It is a triple phase with contrast scan meaning that I must fast and for two hours before the test I have to drink two bottles of barium sulfate (not good) and during the scan they inject an iodine solution into my arm.
  • Annually we do an octreoscan which is a specialized scan in which I am injected with octreotide bonded with some radio isotope and then scanned by a large machine for an hour or more for at least three days.
  • Annually I also have an echocardiogram to make sure that I am not developing carcinoid heart.  The extra seratonin made by the tumors can cause a heart valve to become fibrous and function poorly.
  • In addition, I have had one or two MRI scans. Because of my new pacemaker, we cannot do that anymore. I have also had other tests like the 24-hour 5HIAA urine collection which is supposed to be better than the seratonin blood test but showed nothing for me.

We have to remember that none of these tests are definitive.  The only proof that you have carcinoid is to biopsy a tumor. The blood tests can be inconclusive or wrong.  The octreoscan requires that your tumors have  type 2 octreotide receptors but not all people or even all tumors within one person have those receptors. Tumors can “hide” from CT scans.

After four years of this, I am used to it and in general do not feel anxious about any of it.  The last blood tests showed nothing new.  However, the CT scan last month was a bit different because a) I have felt just a little worse than I have since the surgery two years ago. b) Statistically the surgery might halt progression for about two years.  So, I actually have been expecting some indication of progression this year.  Of course, the results were reported to me 5 or 6 days later than I normally get them.  They reported that the scan detected a small lesion in my liver.

I expected it but it upset me.  I find that I can’t be analytical and brave all the time. Now, having time to consider, I know that we will do nothing but wait for the next scan to see if it is still there and if it has grown.  These things grow very slowly plus I have two smallish tumors in my liver already and I probably have a primary tumor in the midgut area which is still not found.  I hope this year to see a real specialist and develop a plan.

Looking at all this, you might see why some people develop scanxiety.  For me, as Ronnie says, these scans will keep us alive! We should celebrate the technology.

My point here is to give everyone a glimpse into the schedule you might have if are diagnosed with carcinoid or neuroendocrine cancer.  My hope is spread awareness of the disease and the very real impact on one’s life even before you consider the symptoms.

Thanks,

Cy

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We call it Progression

About 28 hours after returning home from the hospital having had a pacemaker implant (and feeling good about it; see: A Pacemaker!?!), I got a call from my oncologist’s nurse with the results from a CT scan that I had 11 days before.

A new lesion was seen on my liver.

Damn.  I guess one day of relief is all we get. We can add the new one to the two lesions that we already know about.

I had liver surgery just short of two years ago.  At that time, I wrote that statistics are showing that debulking (removing as much tumor load as possible) seems to lead to two years of no progression in 50% of the patients. So, it appears that I am just an average kind of guy.

What is progression? I cannot find a formal definition for progression in neuroendocrine tumors. Indeed, there are papers lamenting about the need for a formal definition. My take is that there is visible tumor growth and/or worsening of symptoms. Given that, my disease has progressed. Oh boy.  Luckily the symptoms have changed very little or not at all at this point (except maybe the heart rhythm and rate which we just fixed).

What will happen?  It is impossible to tell now.  A specialist surgeon in the carcinoid field is moving to Denver next month.  Dr. Eric Liu is one of about a dozen specialists in the US. He sees more carcinoid cancer patients in a week than the entire clinic I go to sees in a year. His clinic will be about 4 blocks from the clinic that I go to now.  I plan to demand a referral from my HMO insurer.  We will let him look at everything and help us make a plan.

How wonderful that I am co-leader tomorrow of the Colorado Carcinoid Cancer Support Group quarterly meeting.  I have some listeners who will understand how it feels.

Once again, may we all have the best possible outcomes.

Namaste,

Cy

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A Pacemaker!?!

I have had troubles with a lower than average heart rate for years.  It started before my carcinoid diagnosis, but, seemed no trouble – non-threatening.  It has gotten worse in the last couple of years.  My heart rate would drop below 50 bpm, sometimes as low as 35 and stay low for 10 -20 minutes.  My blood pressure seemed to be dropping as well. At such times, my brain felt fuzzy and I could not stand. It occurred at unpredictable times. That could create dangerous situations.

At the mid-winter carcinoid conference, I had the good luck to speak with an oncology assistant professor of UC.  He told me that a connection between that condition and carcinoid cancer is known but “exceedingly rare”.  How lucky for me! Ha!

I had an appointment with an electro-physio-cardiologist last month. In his office, my average heart rate was 52 and they want it to stay 60 bpm or more.  We determined that a pacemaker could help me. Yesterday the implant was done and I am home recuperating today.

The procedure took about an hour and I spent the night in the hospital.  Since the anesthesia was not general anesthesia but very light and intended only to be like sleep, there was little danger of carcinoid crisis.

It may take a few days to get used to but, I should feel more energetic. I will probably be able to ride bikes again safely.  In general, physical activities and changes of altitude and traveling should create fewer problems for me.

How will it affect the carcinoid cancer? I will not be able to have an MRI because they would break the pacemaker.  I have only had one MRI since my carcinoid diagnosis anyway. A good thing is the pacemaker should greatly reduce the problem of carcinoid crisis during surgery and anesthesia.

The pacemaker that I have is built to last 12 years.  It comes with a separate  communication device that hooks to the phone line and then contacts the pacemaker by radio and collects data daily and sends it to a pacemaker center where software can notify my doctors if there appear to be problems with my heart or with the pacemaker.

As of May 29, 2015, the pacemaker is successfully holding my resting pulse at 60 bpm. It does change the pulse rate upward as I move around. It has evened out my pulse  which was often bigeminy (beat.beat..beat.beat) to normal (beat.beat.beat.beat). And I woke today feeling rested and and well.

To me, this is a good decision with little risk.  I will let you know in the future if it works as hoped.

May we all have the best possible outcomes,

Cy

 

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Scotland, Ireland, Carcinoid Syndrome, Pacemaker

What a month!

I had my birthday early in the month.  Made to 68 years old.

Laurie and I spent the last two weeks in Scotland and Ireland.  It was a good trip.  About 7 days in Cellardyke near St. Andrews being with Derek, Kat and Ansel.  Great to be with family and of course enjoying the 2 year old grandson. Stayed in a different bed and breakfast most of the time. It turned out to be good.  Spent a day in Glasgow, then on to Dublin!  Four days there walking and touring.  It’s a good city.

Unfortunately, the Carcinoid Syndrome caught me there with the normal issues of diarrhea, low blood pressure and heart rate. It seems to happen every time I travel now.  Fortunately, even though I had to sit out a little of the touring, it was fairly controllable and I was able to enjoy Dublin and just being there with Laurie.

Tomorrow, my semi-yearly CT scan for carcinoid.  I hope there are still no changes visible. It would be nice if we found my still unlocated primary tumor.

Next week, May 27, I am scheduled to get a pacemaker.  The doctor told me that my average heart rate during a test last month was only 52 bpm and we know that it falls sometimes as low as 35 bpm.  It is not certain, but it could be due to the carcinoid. An oncology teacher told me the connection is known to occur, but is “exceedingly rare”!  I get all the luck! The cardiologist says that I will feel better immediately.  It will only be an overnight in the hospital.

Be sure that I will post as this progresses,

Cy

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Midwinter Neuroendocrine Conference 2015

Saturday February 9, 2015, I attended the NCCEA Midwinter Neuroendocrine Conference.   NCCEA is the the Neuroendocrine Carcinoid Cancer Education Association which was formed in 2012 to support the Colorado Carcinoid Cancer Support Group (CCCSG) and the Run for Hope 5K  As a 501(c)3 tax exempt non-profit organization it allows NCCEA to raise funds to provide educational programs for Neuroendocrine Carcinoid Cancer individuals to help them in the fight to overcome cancer.  The conference was held in a wonderful venue called the Wildlife Experience  Museum which is part of University of Colorado South Denver.

Jeanne Lambert (carcinoid diagnosed 2004) introduced our moderator. Jeanne and her husband John have been the force behind our conferences  and the Run for Hope and the NCCEA.  They have announced that they are moving out of those jobs.  The Run for Hope has been handed over to a more generic cancer organization and it looks like we will get very little funding from it.  See below for an announcement about our midwinter conferences.  Jeanne & John Lambert, we will miss your activity in our behalf greatly.  Thanks, and we hope to see you at our next regular meeting.

Jeanne also announced that our coordinator for CCCSG, Lesley Compton is moving to Texas.  Lesley is the person who recruited me into CCCSG and has worked on it with Jeanne since it started in about 2007.  Lesley Compton, we will miss you very much. Good Luck in your move.  Lela Selby and Cy Ball (myself) will be co-chairs of the group starting immediately. I am excited about this opportunity and hope that Lela and I can adequately fill Lesley’s shoes.

Our moderator was Dr. Tom Purcell, MD, PhD. Associate Professor, Division of Medical Oncology, University of Colorado. Dr. Purcell is also the Associate Director for Clinical Services of the University of Colorado Cancer Center and Executive Medical Director of Oncology Services at University of Colorado Hospital. He also happens to have been my consultant on treatment of my carcinoid cancer which led to my liver surgery.  Yeah, Dr. Tom.

Dr. Purcell gave a short talk emphasizing the importance of exercise for cancer patients and a surprising point that even though Carcinoid is rare by number diagnosed each year, it is the second most prevalent gastrointestinal cancer because we live longer! The number of patients is still orders of magnitude smaller than the most prevalent gastrointestinal cancer so many cancer doctors and centers never or rarely see it.

Dr. Purcell also gave us the big news that University of Colorado Cancer Center will take over sponsoring/organizing our midwinter conference! The next conference is planned for February 6, 2016.

Speakers

I am not going to try to describe each talk. They were all wonderful! The videos of the talks and pdfs of the powerpoints are here (CCCSG) and I encourage everyone interested in Carcinoid to watch them and/or look at the powerpoints.  I will name each speaker and the main new things that I learned.  Please remember that I have heard a number of speakers and read a lot about carcinoid before this conference.

J. Philip Boudreaux, MD FACS – Oeschner Medical Center (LSU). Changing Paradigms in Gastrointestinal Neuroendocrine Tumors.  Dr. Boudreaux is a very well known part of the NOLA dream team that treats NETS.
His talk was about the surgical techniques used on carcinoid.
New to me was the description of the IRE (Irreversible Electroporation), also known as NanoKnife.  This is similar to Radio Frequency Ablation that uses microwaves to “cook” tumors but it uses very high voltage electricity and theoretically causes less collateral damage. Also new to me, MIBG scans which are similar to octreoscans which I have had except that they do not depend on the tumors having octreotide receptors to capture the radioisotope. Instead, the MIBG is absorbed by the cell (if it is MIBG hungry).  Although the tumors are not always hungry for this, it is might be an alternative for patients whose tumors do not have octreotide receptors.  Also, Oeschner will get GA-68 scan and PRRT treatment this year.

Leigh Anne Burns, Registered Dietitan at LSU Health Sciences Center, Greater New Orleans area. Nutrition Management for Patients Living with Neuroendocrine Tumors.  Leigh Anne is well known as the nutrition expert for carcinoid patients on the NOLA dream team.
The new item for me here was that the constipation which alternates with diarrhea for patients like me is usually caused by the removal of the gall bladder.

Christopher Lieu, MD – Assistant Professior, Division of Medical Oncology, University of Colorado School of Medicine. The Past, Present, and Future of NET Treatments.
I liked this talk very much, but as an overview, I had seen most before. Main new thing CT scans for carcinoid tumors should always triple phase. Mine have not always been. In conversation during a break, I asked Dr. Lieu about my bradycardia (from time to time my heart rate slows to as low as 35 bpm). He said that this connection (heart rate/carcinoid) is known but very rare. Maybe I won the lottery again?

Dr. Jeanette Durham, MD MBA – Professor, Radiology-Interventional, University of Colorado Hospital (UCH).  Regional Therapy for Metastatic Neuroendocrine Tumors.
New to me: embolization should be used as a treatment after surgery not before (they surprised that mine was in the reverse order). Many doctors (including Dr. Durham) believe that the addition of chemo to embolization is not useful. They perform bland embolization (TAE – Transcatheter Arterial Embolization). I had chemoembolism (TACE – Transcatheter Arterial Chemoembolization).

Dr. Rodney F. Pommier, MD – Surgical Oncology, Oregon Health & Sciences. New Frontiers in Surgery for Neuroendocrine Tumors. Dr. Pommier is a very well known surgeon and researcher and speaker in NETS.
New and amazing things. Dr. Pommier performs the “discovery” or search for intestinal tumors with minimally invasive laparoscopy. If the tumors are found (about a 90% success rate), he will attempt the resection laparoscopically and only open up the patient if necessary.
Dr. Pommier now removes carcinoid tumors from the liver without removing large parts of the liver. He has discovered that he can simply make a cut into the liver to the tumor and “pop” it out (his words). This is unheard of and impossible with any other type of cancer. I know of two other surgeons who have done it but I do not know if they continue to do it. Half my liver was removed with a tennis ball sized tumor in it. The surgery would have been less dangerous if Dr. Pommier’s technique was known.
Dr. Pommier wrote an important paper on the octreotide protocol to prevent carcinoid crisis during surgery. My surgeons and anesthesiologists have used that paper at my insistence to develop a protocol for me. Dr. Pommier has further studied it and now believes that octreotide is not useful to prevent carcinoid crisis. I would caution everyone to stay with the protocols at least until his paper is published and tested by the other experts in the field. As far as I know, all other specialists in the field believe in using those protocols.
Lastly, Dr. Pommier is performing a study which seems to indicate that people with carcinoid syndrome are cognitively impaired (memory at least). His study also indicates that, if the syndrome is stopped by medication or surgery, the impairment goes away. This could be huge. The carcinoid support groups are filled with complaints of memory problems among us (me too). The study is still in progress and not near publication.

As you can see, just my take away from the conference was a lot of valuable info.  I really, really encourage all with interest in this disease to watch the videos here: Colorado Carcinoid Cancer Support Group.

Other News

My quarterly blood tests are done and they still show stable, no progression.

 

Namaste,

Cy

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Binaural Beats

A few weeks ago a friend of mine posted this on facebook: how-to-get-high-without-drugs.

It’s not a hippie/druggy thing.  It’s about a beat you hear when you have two different but closely related sounds, one in each ear.  The effect is said to be calming, relaxing and meditative.  It is called binaural beat.

I studied on this, found a number of references on the internet (even software to experiment here) and decided to remix my ambient piece “chillin it” with a background or pad made of a binaural beat.  This is the result but according to the literature you have to listen to it for 15 or 20 minutes to experience the effect:

Binaural Chillin It; 2015-Jan-01, ambient and binaural beat experiment.  Download

Happy New Year,

Cy

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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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