I Couldn't Resist!

This made me laugh!

Source:  The New Yorker Magazine

Tumor Markers and Scans

A few weeks ago I had a CT scan plus tests for 5-HIAA  and chromogranin A (CgA).  The CT scan measures the visible tumors and is compared against the prior one to see if there are any changes.  The good news is that my visible tumors as seen by CT scan are stable.  I will be getting an MRI at the end of the month to see my liver tumors better.  I have some small liver tumors but all of the specialists I have seen since diagnosis think I have reasonably low liver involvement.  This will be my first MRI so I guess it will be used as a baseline to see how my liver tumors progress. 

In terms of my tumor markers, these are tests that measure the activity or secretion of hormones by the tumors.  The CgA marker is a general measure of tumor activity.  The 5-HIAA test is a 24 hour urine sample that measures the level of serotonin that the tumors are producing.  In most patients with carcinoid cancer, the levels of CgA and 5-HIAA are elevated. 

Any lab tests (not just tumor markers) are shown with the result that was measured and a range of what is considered normal. This is called called the reference range.  If you have lab tests over time that are from different places with different ranges, one can divide the result by the top of the reference range to see the percentage over or under the range. The CgA table below shows some of my results from this test since my initial diagnosis in August, 2010.   Before I started taking Sandostatin, my result was 1,243 when the top of the range was 50.  My result was 25 times the top of the normal range!  Once I started Sandostatin LAR, the results, while still high relative to the range, were much lower, averaging around 2x the top of the range.  Just after my surgery in September 2013, my CgA level was 43 or half the range; the following test in January 2014 was at the top of the range.  Subsequent tests have been climbing with my most recent test at 3.38 times the top of the range the highest since just prior to my surgery.  From what I understand, CgA is a vague diagnostic marker and having this test elevated in the absence of other symptoms or tumor growth is not enough to take action.  My doctor did not seem too concerned with this CgA reading, despite the fact that it is rising. 

CgA
	Result	Ref Range	% Over/Under Range
8/30/2010	1243	<50	24.86
8/15/2012	585	<225	2.60
2/14/2013	236	<93	2.54
4/5/2013	182		1.96
8/9/2013	295		3.17
10/4/2013	43		0.46
1/15/2014	93		1.00
2/13/2014	89		0.96
3/14/2014	109		1.17
6/5/2014	140		1.51
7/10/2014	138		1.48
10/1/2014	314		3.38

5-Hydroxyindoleacetic acid (5-HIAA), the major metabolite of serotonin, is excreted in the urine.  This test is more highly specific to carcinoid tumors.  Elevated levels of serotonin as measured by 5-HIAA are associated with heart valve problems caused by fibrosis.  Fibrosis is defined as an abnormal condition in which fibrous connective tissue spreads over or replaces normal smooth muscle or other normal organ tissue.  Not too much seems to be understood about the relationship between serotonin and fibrosis and many people who have high levels of serotonin do not get fibrosis. There must be some other hormone or process involved.  Nonetheless, reducing the levels of serotonin, which is a hormone released by carcinoid tumors, is a major goal of most doctors.  Sandostatin LAR is known to inhibit the release of serotonin. 

When I was first diagnosed with carcinoid cancer in 2010, my 5-HIAA was over 4x the high end of the normal range (see table below).  Despite being on Sandostatin LAR for about 2.5 years prior to my surgery in 2013, my 5-HIAA levels remained at that level.  When I had my debulking surgery and about 90% of my tumors removed, my 5-HIAA came way down to near the top of the reference range.  My most recent test shows a  slight increase in 5-HIAA but nowhere near where it was pre-surgery. 

5-HIAA
	Result	Ref Range	% Over/Under Range
9/8/2010	74	<18	4.11
2/15/2013	33	<8	4.13
1/16/2014	7.6	<8	0.95
10/2/2014	8.2	<8	1.03

So what does this all mean?  I’m really have no idea.  I’m glad my serotonin is closer to normal now that I’ve had surgery. But since I was not having any signs of heart valve disease or fibrosis prior to surgery, I’m not sure it really matters.  I’m not too sure what to think about the rising CgA but since my doctor is not worried, I won’t be either. 

Too Young to Die, Too Old to Worry and Why I hope to Die at 75

This past week I saw two articles with the above titles and was intrigued.  “Too Young to Die, Too Old to Worry” was in The New York Times and the “Why I Hope to Die at 75” was in The Atlantic. 

They both had similar themes:

“Once you get older, 80 in the first article, 75 in the second, perhaps one should spend less time on preventative medicine and more time enjoying the more pleasurable things in life.”

“Doubtless, death is a loss. But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived.”

“At older ages, we desire to not to simply pursue life, but happiness, and that medicine is important, but it’s not the only means to this happiness.” 

“Americans seem to be obsessed with exercising, doing mental puzzles, consuming various juice and protein concoctions, sticking to strict diets, and popping vitamins and supplements, all in a valiant effort to cheat death and prolong life as long as possible. I think this manic desperation to endlessly extend life is misguided and potentially destructive. For many reasons, 75 is a pretty good age to aim to stop.”

“Since 1960, increases in longevity have been achieved mainly by extending the lives of people over 60. Rather than saving more young people, we are stretching out old age. Over the past 50 years, health care hasn’t slowed the aging process so much as it has slowed the dying process. And, the contemporary dying process has been elongated.”

Both articles focus on how after certain ages, the benefits of prevention are not worth the hassles of testing, surgeries and medications. 

I agree with the basic premises of these articles and can only hope to be alive at 75 or 80.  The links to the articles are below:

http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

http://www.nytimes.com/2014/09/21/opinion/sunday/too-young-to-die-too-old-to-worry.html

Long Time No Update

It’s been a while since I last updated my blog.  I guess there is not too much going on in my cancer life – everything is reasonably stable.  I am scheduled for scans, 5-HIAA and other tests in early October and I’m hoping I’m still stable.  Last month I marked the 4 year anniversary of my diagnosis.   This coming week marks the one year anniversary of my de-bulking surgery.  A few days ago, this blog reached its 100,000^th pageview!  These are some serious milestones.

I am feeling less stressed out since my retirement a few months ago.  I thought that stopping work would help my bowel issues tremendously but it has only helped incrementally.  I still need to be near a restroom and every day is an adventure as to bowel frequency, consistency and color.  I do have some days where I only have one  bowel movement and this makes me reminisce about my pre-surgery days.  

My second NETest showed an increase from  in my score from 3 to 4.  The range of scores is 1-8 and 1-4 is considered low or “residual disease”.  I still have one test to go in a few months and I hope it remains in the same range.

I am doing a better job on eating appropriately now that I am not working.  I don’t digest fat very well so I take CREON, a pancreatic enzyme 3x a day.  My doctor told me that I should eat more soluble fiber and take metamucil or benefiber daily.   Soluble fiber attracts water and forms a gel, which slows down digestion and can help stop diarrhea. Sources of soluble fiber include oatmeal, oat cereal, lentils, apples, oranges, pears, oat bran, strawberries, nuts, flaxseeds, beans, dried peas, blueberries, psyllium, cucumbers, celery, and carrots.  Since I have been eating more soluble fiber, my bowel movements have improved but are still not “normal”.  I have also been eating 4 smaller meals a day and trying to eat softer foods.  

Some of the foods that work for me are below:

• eggs (scrambled, soft/hard boiled, omelettes, deviled or egg salad-with light mayonnaise)
• roasted turkey or grilled/rotisserie chicken
• any grilled, baked or broiled fish
• tuna fish sandwiches made with light mayonnaise - sometimes with reduced fat cheese for a tuna melt
• soups that are not cream based - I try to make my own soups rather than eating canned.
• creamy peanut butter and jelly/marshmallow fluff/fig butter (pick one) sandwiches
• crackers with laughing cow light or other low-fat cheese
• fat free feta cheese in my omelette or on my (small) salad
• greek yogurt

I stay away from celery, corn, nuts, seeds and popcorn. I don't intentionally put these into anything I eat. When I make a salad, I chop it up into small pieces and chew thoroughly.  I’m sure that eating better and more frequently plus the reduction of stress in my life has helped with the slight improvement in symptoms.  I’ve also not had another full bowel obstruction since my emergency room visit in April.  I did have a “bowel kink” or perhaps a partial obstruction in July but it cleared before I needed to see a doctor or go to the ER. 

Finally, I read an interesting article in “The New Yorker” titled “The Transformation  Is it possible to control cancer without killing it?”  It’s about the new treatments that are being tested and used now. The intent is not to cure cancer, but to keep patients alive with a higher quality of life for longer.  The link is below:

http://www.newyorker.com/magazine/2014/09/15/transformation-3

My Husband, Owen McGivern, is Raising Funds for Neuroendocrine Cancer Research

On Sunday, September 21, my husband Owen will be raising funds to support the neuroendocrine tumor program (NET) at Dana Farber Cancer Institute. As one of more than 8,500 anticipated participants, he’s pledged to raise funds that will be used to support critical cancer research and innovative care for this rare cancer at Dana-Farber Cancer Institute. I'm writing to you today to ask for your support.

Owen will be on the Caring for Carcinoid/Walking with Jane and Anne Team, http://www.jimmyfundwalk.org/faf/search/searchTeamPart.asp?ievent=1086390&team=5839056, participating as a virtual walker.  Harry Proudfoot is the team leader.  He can be reached at walkingwithjane@gmail.com

Please feel free to join the team if you would like to walk at this event or join as a virtual walker to raise funds for research and cures.  If you join the team, you will get a team t-shirt.  The design is shown below. 

Front of Team T-Shirt

Back of Team T-Shirt

Please join Owen in the fight against cancer by considering a contribution of $26.20 or more toward his fundraising efforts.

It's easy to have an impact on this important and universal cause. You can:
- Make a gift online: Visit the Walk website at www.JimmyFundWalk.org and click "Give." Search for Owen's name and follow the instructions on his fundraising page to make a gift online, or go to Owen's fundraising page at http://www.jimmyfundwalk.org/2014/owen_mcgivern.

- Send in a check: Write a check payable to "Jimmy Fund Walk" and send it to Walking with Jane, PO Box 9721, Fall River, MA 02723.  Please put Owen McGivern, in the memo section of the check. 

Thank you in advance for your generosity!

Beth and Owen McGivern

Lynn M. Guidici

My friend and fellow carcinoid patient, Lynn Guidici, died last Friday.  She was 59.  I met Lynn in 2012 through the ACOR message board. We both lived in the New York area and had seen some of the same doctors.  Lynn was the first carcinoid patient that I met in person.  She was diagnosed in 2006 and I was a relative “newbie” in 2012.  Nonetheless, we were in similar situations in thinking about debulking surgery, what our next step should be and if we really trusted our doctors.  We met over coffee and hit it off immediately, talking and laughing about life, cancer, doctors and poop.  We talked and met up regularly to catch up on things.  She had a debulking surgery in early 2013 and I went next in September.  She never fully recovered from the surgery and continued to struggle with eating and weight loss issues.  She went on to have a liver embolization and remained in declining health.  I continued to see her, going to Westchester where she lived so she would not have to travel into the city. I last saw her a few weeks ago at her home and knew that this would be my last visit. 

Lynn was a warm and caring person who was so proud of her daughter Anabel, who just graduated from high school and will be attending college in the fall. Perhaps going away to college will help her deal with the death of her mother. Lynn's husband Bill survives her as well.

I feel quite upset, even though it was clear that Lynn was doing poorly.  Knowing someone who has the same disease is an amazing experience because they have the same hopes, fears and symptoms, making them closer to you than most other people.  Seeing Lynn die brings my own mortality up front and personal which is very scary as well. 

Rest in peace Lynn, you were a great friend and confidante.  

How to Tell Someone She is Dying

There is an interesting article with the above title in “The New Yorker” about doctor-patient relationships. It concerns how to get a patient who is in denial or uncomfortable with a certain treatment, in this case chemotherapy, to consider the alternatives.  As a cancer patient, I want to feel in control of my options. Not being a medical expert, I don’t know the pros and cons of different treatments.  I need to rely on my doctors to give me their opinion on what I should do but also the rationale for that course of action.  This was not always the way patients were treated. The article states in part:

“As recently as the nineteen-seventies, medical decision-making in the United States was largely a doctor-knows-best endeavor. Physicians dictated clinical care without feeling compelled to tell patients about their treatment alternatives. Frequently, in fact, they did not even inform patients of their diagnoses.

Medical practice has since undergone a paradigm shift. Physicians now recognize that patients not only have both the right to information but also the right to refuse medical care. Yet doctors are rarely taught how to partner effectively with patients in making important medical decisions. There is a need for a balance between helping patients make wise choices and respecting their rights to refuse medical interventions.

This raises a fundamental question about the doctor-patient relationship: Is modern medical practice all about 'patient knows best’?  Or do physicians still need, on occasion, to cajole their patients into doing the right thing?

Most well-trained physicians believe that it would be a dereliction of their duties to act merely as information providers, standing aside while patients make bad decisions. Experience provides them with an important perspective to guide treatment decisions. Yet a purely medical perspective can cause physicians to lose themselves in details and lose sight of the more human element of patient care such as whether the chemotherapy that shrank the tumor would improve the patient’s quality of life.”

Only a patient can determine the balance they prefer between the quantity and quality of life they want.  As cancer treatment becomes more advanced, options can become less clear in their ability to produce a high quality life.  I would hope that my doctor would understand my preferences and give me the best option to keep my quality of life - even if that means no treatment or palliative care instead of intensive medical therapies that would cause harm.

The link to the article is below:

http://www.newyorker.com/online/blogs/elements/2014/07/cancer-chats.html