Sunday, April 13, 2014

Adventures with CREON

I am now 7 months past my debulking surgery.  I went back to work in December and my life settled back in a routine.  My diet went back to my more typical “normal” in that I ate healthy, lower fat meals during the week when my day was pretty structured.   But on weekends, I was indulging in restaurant eating with fattier foods. This led to gastrointestinal problems like gas and diarrhea which sometimes extended into Monday or Tuesday. This problem can be caused by having a shorter bowel from surgery or from the Sandostatin LAR that is administered monthly.  In my case, since I didn’t any diarrhea problems prior to surgery, it is probably due to the surgery.  My body is just not absorbing fats properly. 

I tried Digest Gold, an over the counter digestive enzyme supplement, for a few months and I thought it was working a little bit, at least on the gas problem.  I was keeping a journal of my symptoms and found that I was still having diarrhea for about 3 days a week, sometimes more than 5 -10 times a day, almost always on some variation of Friday – Monday.  Last month my doctor prescribed CREON, a prescription digestive enzyme replacement.  CREON is a medication used to treat people who cannot digest food normally because their pancreas does not make enough enzymes such as lipase, protease and amylase.  I started CREON, at a low dose (6,000 lipase units) and I was to take it 3 times a day before meals.  I made the mistake of starting this drug on the day before my birthday. By the third pill I was having extreme gastrointestinal pain. I felt like I was having heartburn from my esophagus to my urethra.  I was also very bloated and constipated.  I ended the day drinking prune juice to get things moving again.  I was still feeling under the weather on my birthday and had to cancel our dinner reservations.  I recovered in time to have a nice dinner at Palma, a little Italian place in the Village later in the week. Though I was feeling better, I was no longer interested in taking this drug.  I asked my fellow carcinoids on ACOR if anyone had side effects from CREON. The general advice was to take it once a day, get used to it and then balance the dosage to alleviate the diarrhea without getting constipated. 
I started taking it once a day during the week, when I eat less fat and twice a day on weekends when my eating is less disciplined and includes more fatty foods.  After 4 weeks this strategy has worked to lessen, not eliminate the diarrhea problem.    Sometimes I forget to take the pill and sometimes I have diarrhea despite not eating fatty foods or taking the pill. I would say that incidence is much lower and I don’t have to spend my weekends close to a bathroom.  So, after a bit of trial and error, this drug seems to be working on one of the digestive issues that has been plaguing me after surgery. I think this is progress!

On a related note, I had never been on prescription drugs before except for occasional antibiotics that don’t have to be renewed.  I am currently taking prescription vitamin D due to a deficiency (lab test 14, range 20 – 50).  I am also taking CREON, both prescriptions that need to be renewed regularly.  I get my prescriptions from Walgreens and they have me on what I would call “robocalls” reminding me to renew or pick up my prescriptions in the next 24 hours or lose the prescription.  More often than not, my voicemail messages are from the drug store…I find this quite annoying. I wish there was a better way to communicate with my pharmacist.

Sunday, March 9, 2014

Musings at 55

Soon I will be turning 55 – It is one of those birthdays ending in “5” or “0” that everyone seems to want to celebrate.  When I was diagnosed with cancer at age 51, I was not sure I would be alive at 55.  While I was commiserating about how unfair it was that I had cancer and might die earlier than anticipated, I was thinking of my pension benefits and that I would not be able to collect them if I did not make it to 55, which is “early retirement age” under most corporate defined benefit pension plans.  A pension benefit, unlike a 401(k) plan, is a promise of a certain amount of money at retirement, usually based on the employee’s salary and years of service.  The benefit is only payable at retirement and if you don’t make it to retirement, no one gets your benefit -  i.e., there is no beneficiary.  I have officially made it to "early retirement" and have requested paperwork to get my benefits out of the plan.  I am allowed to take a “lump sum” which is the present value of the benefits that the company owes me due to my salary and service. The only way I can get these funds without a large tax penalty is to roll the lump sum into an IRA.  You can’t get your funds out of an IRA without penalties until age 59 ½, so I guess that’s my next financial milestone.  I suspect and hope I will be retired before my 59th birthday. It’s weird what you think of when you have cancer!

My mother had her first heart attack at age 55.  That’s another thing that I think about when turning 55.  My brother turned 55 a few years ago and he was thinking about that too.  He has not had a heart attack, thank goodness!  My mother died at age 63 from a second heart attack.  My father also died (age 69) from heart disease.  Before I was diagnosed with cancer, I always thought I would die of heart disease because it runs in my family. I still might.
My parents’ shorter than average longevity makes me think that perhaps I should do something more meaningful with my life.  I am thinking of retiring but I might be a little bored and frankly, I’m concerned about doing all spending and no accumulation anymore.  I wish I had a better sense of my longevity picture. 

Today I saw the article below on another blog I read called “The Big Picture”.  The article is called “What you Learn When You’re 60”.  I’ve shortened the list from the original blogpost.  I could definitely relate to most of these at my tender young age of 55.  Maybe I’m mature for my age.

by Bob Lefsetz

Death is not distant, it’s inevitable, and ever-closer.
No one knows anything. Confidence is a front. Everybody is insecure.

We’re all lonely looking to be connected.

You’ll regret choices earlier in your life, but you’ll accept them.

You’ll want the decade back when you were lost and drifting.
You’re never going to recover from some physical ills, aches and pains are part of the process of dying, and that’s what you’re doing, every day.

Your parents said television was the idiot box, and you feel guilty every time you watch for hours, but you’re addicted.
Being good-looking is overrated. Sure, it opens some doors, but it stunts you in other ways. Character is built by challenges, if you avoid them, you’re at a loss.

Having friends is better than having money.
If you were never on the path to riches, you will never be rich.

Doors are closing every day. If there’s something you want to do, start now.

Acceptance is no easier than it was when you were five, but it’s necessary in order to soldier on.
You really want to be involved with someone your own age, because no matter how attractive a younger person might be, they do not get the references.

People let you down.
Everybody is out for themselves. They make decisions accordingly. Don’t take it personally.

Some people were dead at thirty. It’s a full time job trying to stay alive.

Most of what you learned in school you’ve already forgotten.
If you’re working for the man, it’s just a matter of time before you lose your job.

People are dying to tell you their story. Ask them questions. They’ll tell you everything.
You’ll become more comfortable in your own skin.

You’ll be happier.
You’ll stop doing things you don’t want to do. Actually, this happens not long after you move out of your parents’ house.

You’ll stop being fascinated by that which consumed you previously. Sports may become meaningless.
You won’t know who the people they’re talking about in “People” and the rest of the gossip rags are, and you won’t care.

You’ll realize no one leaves their mark, except for a few people who didn’t know they were doing so, so it’s a futile pursuit.
Wrinkles only bother those who have them. Beauty changes when we get older. We’re looking for a glint in the eye, a sense of satisfaction and adventure.

If you’re up for anything, we’re attracted to you.
No one can keep a secret.

There are truly rich people and chances are you’re not one of them. Unless you’ve got a friend, you’ll rarely get the best seat, you’ll rarely get preferential treatment. You don’t want to see yourself as one of the unwashed masses, but you are.
You don’t want to be President.

Life is topsy-turvy, just because someone’s successful today, that does not mean they will be so tomorrow.
Even the best and the brightest have kids who screw up.

People oftentimes don’t want to hear the truth, you’ll have trouble getting ahead if you don’t know when to hold your tongue.
Everybody gets cancer, if you ain’t got it, your time is coming.

You think you want to live forever, but you don’t, because none of your friends will be around to share it with.
There are two types of people, those who want to retire and those who don’t.

There are two types of people, those who prepared for retirement and those who didn’t, and some have to continue to work when they don’t want to.
Your health may not allow you to continue to work, even if you want to.

It’s fun learning what the people you grew up with are up to, but you really don’t want to hang with any of them that you weren’t hanging with before the Internet.
People don’t change. Certainly not unless they want to. So expect the person who bugged you in school to still bug you as an adult. And know that chances are you can never ever get back together with your ex because what caused the breakup back then still exists.

Marriage is hard.
Divorce is even harder.

Sometimes life is better with a new partner, but sometimes it’s not.
People who want to make you feel inadequate feel inadequate themselves.

Not everybody grows up, some are still bullies.
The biggest rebel in school is complacent as an adult.

Some of your best friends will retreat to religion.
You’ll laugh at those trying to look younger, or follow their lead down the path of inadequacy.

You’ll see the passing of your parents as a precursor to your own demise. Once they’re gone, you’re next.
You’ll love making references to old movies and songs.

Unless you have children, the Top Forty will become meaningless.
You’ll be stunned that the biggest TV shows and stars of yore will become forgotten as time goes by.

You’ll be more interested in the news, and more interested in politics.
You’ll think it was better when you were young.

Even though you are closer to death, you won’t want to be young again. You had so many questions, you were so angst-ridden, you were searching. As the cliche goes, youth is wasted on the young.
The key to longevity is letting go of the past.

You’ll look back at one specific time in your life when you were happiest, and you’ll discover the people who shared the experience agree with you.
You’ll recognize hype for what it is. And become disillusioned by it and advertising.

You’ll realize every generation has a teen phenom, a boy band that captures girls’ hearts that fades away.
Being famous is overrated, you treasure your anonymity.

Life is for the living, so live it up!

Monday, February 24, 2014


Nancy Teixiera, a registered nurse and carcinoid patient, spoke to the New York Noids Support Group yesterday.  She is representing Wren Labs which is working with Clifton Life Sciences. Wren has developed a genetic marker specific to neuroendocrine tumors.  The test measures tumor activity at a cellular level. The NETest is a novel blood-based molecular diagnostic that provides highly sensitive and specific information with respect to tumor status and therapeutic efficacy. The test is unique in that it uses 51 neuroendocrine tumor- specific gene transcripts developed by Wren scientists. The NETest has been developed and validated in over 600 NET patients and can identify the presence and activity of NET cells circulating prior to the formation of metastatic tumor.  The idea is to have the test performed on a periodic basis and see if there is a trend.  The blood test is scaled on a 0 – 8 basis with the levels as follows:

Level 1-4:  low activity

Level 5-6:  medium activity
Level 7-8:  high activity

This NETest can pick up tumor activity unlike Chromogranin A and Pancreastatin which monitor secretion. The question that came up in the group was: What should one do with the information if the trend is upward?  If that were the case, one could work with their doctor to consider modifying current therapy. Examples could include, increasing the dose of Sandostatin, finding the tumor(s) and removing it or some other systemic therapy such as chemotherapy or Peptide Receptor Radionuclide Therapy (PRRT).  This test is individualized and therefore so is each patient’s management plan.

In order for patients and physicians to appreciate the benefit of trending values, the company has offered to give this blood test for free 3 times over a course of 9 months to each NET patient in the group.  This way, each patient would have a baseline to measure their tumor activity.  They have applied for a Current Procedural Terminology (CPT) code and anticipate having this in place by May, 2014. The procedure could then be covered by insurance before the 9 months of free testing is done.  Wren Labs is bringing this test to the attention of patients prior or simultaneously to informing doctors of it.  Nancy has been visiting support groups around the country to inform patients of the test, as well as having discussions with NETs specialists at various national conferences. 

I think the challenge is to get doctors to understand and utilize the test.  Just like anything, if the test shows high tumor activity and there is no good way of finding the tumors or correcting the problem, then what is the benefit of having this information?  This could cause anxiety for patients, which seemed to be a concern to some of the patients in the group.   A few of those in the group suggested that we all go together to Branford, CT, where Wren Labs is located to get the test done together.  It would be like a Noids field trip! 
I’m inclined to go ahead and get the blood test.  It is a very low risk procedure in that I don’t need to take any medications or get scanned and it could help others with this disease in the future.  We’ll see what happens. 

If anyone else would like to get the NETest, you can contact Nancy Teixeira at


Sunday, February 16, 2014

A Bump in the Recovery Road

I am now nearly 5 months post-surgery and things have been going reasonably well.  I am back to work but don’t have nearly the stamina I had pre-surgery.  After 5 days of working, I am very tired.  In the past month, I’ve had 2 incidences of severe abdominal pain.  It starts feeling like I was kicked in the stomach, then goes into severe pain with what feels like contractions or spasms.  The first time it happened, it was on a Friday night and I took a tramadol (pain killer). That helped me to sleep and I felt fine in the morning.  The second time was on Super Bowl Sunday and no, I was not eating tons of fatty foods and drinking beer!  It started the same way with the kicked in the stomach feeling, then went to contractions.  I did not take a tramadol until after the Super Bowl ended because I was trying to watch it.  I did take the tramadol around 10:30 pm but that time it did not help me get to sleep.  At about 3:00 am, I was vomiting and still in severe pain.  The next morning I went in to see my primary care physician and he said that I might have had my bowel kink and then unkink – that can cause this type of pain.  He said he did not think that I was having an obstruction at that time and if I were, I would be quite bloated.  I started to feel better later in the day on Monday.  I messaged my oncologist and she said that the nurse practitioner would talk to me about it when I came in on Thursday February 13th

At my appointment, the nurse practitioner explained that this type of pain can come from a bowel surgery.  She said it could have been a “kinked bowel” or partial obstruction but did not know for sure.  She said that if it happens again, I should get to a radiology facility and get a KUB which stands for kidney, ureter, bladder.  A KUB is an x-ray of the chest and lower abdomen and is used to detect bowel obstructions.  I didn’t get the impression that even if they knew exactly what the problem was, that there was a good solution for it.  Nonetheless, I’ll ask my primary care physician how I might get a KUB quickly, should I need one.  I would prefer not to go to the emergency room because the wait would be long and who knows what else they would do besides a KUB.  Anyway, this really threw me off as I have had a pretty painless recuperation until now.  I’ve already used two sick days for abdominal issues and at this rate I’ll be out of days well before year-end.  I’m hoping this doesn’t happen again but I don’t know what I can do to avoid it or mitigate the pain since I don’t know exactly what is going on.  Some other patients have suggested taking fish oil or drinking coke syrup when it starts to hurt.  I asked the nurse practitioner about this and she said that she had not heard that these things work but there is no harm it trying it if I want to. 

Because of these abdominal issues and the fact that I was not eating much for a day or two after each event, I lost another 2+ pounds this month.  I was hoping to get my weight stabilized to I could figure out what size I will be but now my “new” clothes are getting a bit loose on me.  Oh well, that is a minor issue relative to the pain.  I’m hoping that this is not going to be a recurring problem.   

Saturday, February 1, 2014

We Are Giving Ourselves Cancer

In yesterday’s New York Times, there was an editorial with the title above. The subject was the extensive use of CT scans and how we are “silently irradiating ourselves to death”.  The Op-Ed was written by two doctors at San Francisco Medical Center.  It generated a lot of comments, most of which were directed at the lack of clinical evidence regarding their theory. Nonetheless, this subject is near and dear to my heart as a cancer patient who undergoes a CT scan at least every 6 months.  Since my diagnosis in August 2010, I have had 8 CT scans!  My concern is that the radiation from CT scans can cause cancer.  My question is: What if you already have cancer?  I’m trying to understand the risk of missing something by not doing regular CT scans versus the risk of getting another type of cancer from all the radiation.  I’ve spoken with my oncologist about the frequency of my CT scans since I have been concerned about this for a while.  She said that if there were no cancer, we would not be doing CT scans but since I do have cancer, the CT scans are appropriate to monitor for changes.  I really do not know how to evaluate my risks; i.e., is the risk of radiation from the CT scan higher or lower than the risk of not catching cancer progression in time if we spaced the CTs farther apart?  Would an ultrasound or MRI be a better way to measure progression?  My doctor says an MRI would be better for liver tumors but not for other abdominal lesions.  Perhaps less frequent CT scans would be an appropriate approach?

The link to the NYT editorial is below:

One of the ACOR list members posted an X-ray risk calculator that can give one an idea of their exposure to radiation and their additional cancer risk.  You can access the calculator at  I have no idea how credible this source is in evaluating radiation risk but it at least gives me a “radiology risk budget” and helps me to quantify the risk.   I put in my CT scans, 68-GA PET, mammograms and other radiological tests but not my dental x-rays and the small bowel x-ray series and came up with the results below.  My additional cancer risk from the tests I’ve already had is 1 in 84 or a 98.8% chance of having no effect from this exposure.  Again, I have no idea how accurate this calculator is but given this information, and my current stage 4 cancer diagnosis, I’d say it’s ok to keep doing CT’s. Perhaps the NYT editorial was overly alarmist?  Am I overthinking this whole subject?  I’d be interested in what others think about these risks.

Beth's Current X-Ray Risk Report
# of Exams
Dose (mSv)
Additional Cancer Risk
DEXA Scan (Bone Density)
Chest, Abdomen and Pelvis CT
Chest, Abdomen and Pelvis CT
Whole Body PET
Neck CT
Chest, Abdomen and Pelvis CT
Chest, Abdomen and Pelvis CT
Mammogram (unilateral)(every other year)

An Additional Cancer Risk of 1.188779% is equal to 1 in 84 chances.
Or said another way, a 98.811221% chance of having no effect of the above studies.