I’m very excited because in two weeks I will be traveling to one of my favorite cities, Chicago, to attend my first American Society of Clinical Oncology (ASCO) (http://www.asco.org/) annual conference. This is an enormous conference, with some 30,000 doctors and researchers attending.

I will be attending as a “patient advocate” representing Fight Colorectal Cancer and the Focus on Research.
ASCO recently whet our appetites by releasing summaries of the 5,000 different research projects that will be presented at the conference. ASCO’s patient advocacy program had a webinar discussing 5 of the most interesting research results. These projects discussed some of the latest ideas in cancer research including finding drugs that are effective against particular cancers not because of the cancer’s location but because of the cancer’s gene mutation. Other work suggests the combining new therapies may be more effective than the drugs would be on their own, including reduced side effects.

Two projects stood out to me. The first was a study using a relatively old drug called Olanzapine (Zyprexa) (Click HERE for details). You may guess from the name that this is an anti-psychotic. It had been noticed that patients taking this drug suffered from weight gain. The researchers wondered if it might therefore help chemo patients suffering from nausea. The answer seems to be yes. However, this was a small study. An interesting question is how whether the researchers will be able to find the large sum of money needed to run a larger trial. The drug went generic in 2011 so it is unlikely a drug company would be willing to spend the money on the trials in order to get the FDA to approve the drug for reducing chemo related nausea. I asked, but the webinar speakers did not know about whether the drug caused hiccups.

The second study did not actually look at a new (or even an old) therapy but rather looked at what oncologists and primary care physicians knew about the long terms side effects (“late effects”) of treatments for colorectal cancer and breast cancer (Click HERE for Details).

These late effects may include neuropathy or even cancer. The answer was that primary care physicians didn’t necessarily know that much about these things. In the webinar there was an interesting discussion about communication between oncologists and primary care physicians and efforts by ASCO and others to improve that communication. A big takeaway for me was that I need to start collecting information from my oncologist so that I can give it to my primary care physician or physicians as they see me over the next 10, 20?, 30??? years.

–
Christopher P. Adams, Ph.D.
https://sites.google.com/site/christopherpadams/

Now patients are reporting that combining MiraLAX®, an over-the-counter laxative, with 2 quarts of Gatorade tastes better and is easier to take than the standard 4-quart Golytely colonoscopy preparation. In a randomized clinical trial , almost 100 percent said they would repeat it again, compared to 1 out of 4 who wouldn’t take GoLYTELY® in the future.

In addition, doctors found no differences in how thoroughly the two preps clean the colon.

Splitting the dose between the night before the colonoscopy and the morning of the procedure did improve colon cleansing. But there was no difference in cleansing between split-dose GoLYTELY and split-dose MiraLAX with Gatorade.

Although the combination of MiraLAX and Gatorade is being used to clean the colon before colonoscopy by community gastroenterologists, there hasn’t been evidence that it was safe and effective. Gastroenterologists at the VA Healthcare System in Long Beach, California and at the University of California Irvine developed a randomized clinical trial to compare the MiraLAX prep with traditional  GoLYTELY.

They also compared bowel cleansing quality between giving all of the dose the night before colonoscopy to splitting the dose between the evening before and the morning of the exam.

Results:

• There was no difference in bowel cleansing between the GoLYTELY and the MiraLAX/Gatorade preps.
• There was a significant difference in bowel cleansing when either prep was given in a split dose. Split doses were better.
• On a questionnaire, patients reported better taste and tolerability for the MiraLAX prep.
• 96.8 percent of patients said they would be willing to repeat the MiraLAX prep compared to 75 percent of the GoLYTELY patients.
• There were no significant changes in electrolytes before and after the prep between MiraLAX and GoLYTELY or in single-dose or split doses.

GoLYTELY is a powdered form of polyethylene glycol (PEG-ES) and electrolytes. It is combined with about a gallon of water to draw fluid into the colon to flush out feces.

MiraLAX is also powdered PEG, but doesn’t contain electrolytes. It needs to be combined with two quarts of Gatorade to replace the electrolytes lost in watery diarrhea during the prep process.

Jason B Samarasena MD and his colleagues concluded,

Split-dosed MiraLAX/Gatorade was an effective, safe, and tolerable option for bowel preparation before colonoscopy in the low-risk patients in this study. MiraLAX/Gatorade appears to be more tolerable than Golytely as a bowel cleansing regimen and was the preferred agent by the patients in this study.

What This Means for Patients

Ask your gastroenterologist about combining MiraLAX with Gatorade as a preparation for colonoscopy.

Splitting the prep in two doses: one the evening before your test and the other half the morning before the exam will improve colon cleansing. A clean colon is critical to an accurate exam.

Source: Samarasena et al, The American Journal of Gastroenterology, advance online publication May 8, 2012.

I’m sure Janet expected something like a wish to visit the Grand Canyon or take that cross-country sleeper train trip I’d always promised myself. What I really wanted to say, the first thing that came to mind: “I want to be strong enough to go upstairs and do a load of laundry.” Inconsequential as it seems, climbing the stairs to do laundry is where my head went when asked about my bucket list.

I never had a formal bucket list; instead, I created long-term goals. Despite all the goal-maker’s advice, mine were never written down, and were flexible, but I did get to most of them. I didn’t make yearly resolutions; I made training goals for my dogs. I set goals to pay off credit cards and become debt-free (and did it). I set a goal to pay off my condo in 10 years (and did it).

When I was in my late 30s, I put myself on course to retire at 55. I missed that one by a year – on purpose. Courtesy of a layoff, I was able to leave corporate life at the end of 2010, a month after I turned 55. So I guess I did retire, even though my official payout date was a year later at 56, when severance ended.

And eight years ago, when I started traveling to New York City for cancer consults and then treatments, I joined Amtrak rewards to earn travel points and make my many train trips pay off. I thought I’d save money on a few free tickets, but since Amtrak rewards don’t expire, I just let the points pile up until I had over 18,000.

In my head, I created the ideal train trip – east to west coast by sleeper train, taking my time to see parts of the U.S. and Canada that I’ve never visited. I would see relatives in the upper penninsula of Michigan, take in the Canadian rockies from a double-decker train car, enjoy a leisurely hop on/hop off trip down the Pacific coast, and then hang a left and cross the desert and Sierras to visit my uncle in Tuscon. I’d angle back up to see the Grand Canyon, and then cut back across the country through St. Louis and Chicago to come back home. I built a couple wish-list routes.

In 2011, I altered my dream train trip a bit, and plotted out a cross-country road trip from Syracuse to Colorado. The English Cocker Spaniel Club of America national specialty was in Denver in April. Self-employed, I had the time. Collecting good checks, I had the money. Driving a two-year-old Jeep, I had a car in great condition for the trip. I’d have to go by car because Amtrak still doesn’t allow dogs, but I could live with that modification. It was the perfect year to go.

Perfect – until my February checkup, when my NYC doc discovered an inoperable recurrence of my stage IV rectal cancer. This time, I had lung tumors and disturbing, painful tumors in my lower spine. My local onc confirmed the bone mets in my spine and additional mets in my hipbones. I was put on a custom weekly chemo regimen with pain control as job #1. No more six week cross-country road trip – I needed the weekly treatments.

“Chemo,” I cursed, “can really mess up a summer vacation.” But realizing that there would always be tomorrow, I gave up the national specialty trip and pushed through chemo from April through November. I felt better, too – not better enough to drive to Colorado, but good enough to travel to NYC three times for more treatments, to continue writing, to go to lunch with my friends, and to earn my dog Madison’s Rally Excellent title. The tumors were shrinking. I could always use those Amtrak rewards another time. I hoped.

Throughout my treatment, I’ve always warned other patients to be prepared. Things can change very fast when you have stage IV colorectal cancer. And I was prepared – I thought – in the important ways like a health care proxy and a will and advanced care statement. I’d signed the papers to donate my body to a local hospital for research. I know that my brothers and sisters know what I want at the end of my life.

What I wasn’t prepared for was the speed of the timeline when it actually hit me.

On  Nov. 20, 2011, I showed Madison at the Salt City dog show circuit, where she placed first three out of four days in Rally Excellent and earned her RE. I delivered Madi to the kennel after her class, went home and packed for a quick trip to NYC. I was supposed to have a one-day radio-frequency ablation procedure on two lung mets. Two weeks later, on Dec. 7, after a collapsed lung, sepsis, and chemo port removal, I came home – wobbly, weak, and needing another week of home-delivered IV antibiotics.

I never made it to my family’s various Christmas parties. My pain level, which had escalated in the hospital, was at several percocets a day by Jan. 6 when the first of two attempts at a new port was placed. I did six weeks of chemo, two with an open port incision. I drove myself to my chemo appointments, but cancelled most other outings. I felt like crap, although the pain was getting more controllable.

Then, the CT at my January 23 checkup in NYC showed that my right kidney – the only kidney I have that’s truly functional – was seriously compromised. The scan was so scary that my onc wanted to immediately admit me to Memorial Sloan Kettering (MSKCC) to have a kidney stent placed. I managed to get her to let me consult with my MSKCC urologist uptown, who reassured me that while I needed to watch it, the kidney issues could resolve on their own and I wasn’t in immediate danger. Instead of a hospital admission, I took the  3:45 train home to Syracuse, with a list of things to watch and report.

New port attempt #2 was February 21. After the second port was placed, I finally started feeling like my old self. I was finally able to walk every day, went back to having impromptu lunches with friends, and put the final details on my annual lobbying trip to Washington, D.C. with Fight Colorectal Cancer. On March 5, I flew to the capital, saw lots of old friends and made some new ones, conferenced and lobbied for three days. I started to feel sick the morning I flew home.

On March 15, I was too weak for my scheduled chemo treatment. My onc’s nurse practitioner and a consulting onc admitted me to the hospital with a potentially blocked kidney. March 16, a local urologist and nephrologist placed a nephrostomy tube to unblock it. March 22 I drove myself home, again very weak and mostly inactive, but absolutely desperate to be out of that hospital.

My chemo (Erbitux and 5FU) was really only controlling the pain from my bone mets, and keeping a light check on some of the lung tumors. On March 28, my local oncologist and I agreed that I was too weak and my working, but stented, right kidney at too much risk to try to continue chemo.

I was done.

I asked if it was time to consult with hospice, and both Kathy, the NP, and Jeff, my onc, agreed. Meantime, we decided that pain control was job #1 again – and I moved from active treatment to best supportive (palliative) care.

I have active disease in my lungs, spine and hips and in a soft tissue tumor external to my spine. And I was stopping treatment – with active disease.

Two weeks ago, I recognized I was too weak (and too medicated) to drive to a doctor’s appointment, and cancelled it. For the last three weeks, for all practical purposes I’ve been what most performance scores consider bedridden. I can get up to use the washroom, clean up. I can get myself something to eat if it doesn’t take too long to make it –  I have a 15 minute limit before I need to lay down again. Sometimes if the pain is running high and the pain meds haven’t kicked in yet, I can’t make 15 minutes.

Looking back, it took less than a month – March 15 to April 6, when I cancelled that first doctor’s appointment – for me to morph from full-time functional adult who could drive herself around to full-time cancer patient who is mostly bedridden.

There is no more room in the bucket for big dreams like cross-country train trips. I feel a pang watching tv shows set in NYC, knowing that I’ll likely never visit my favorite city again. It aches to see puppies and kittens and know I’ll never own another one. I’ve never tasted foie gras, or truffles, or uni. I never got to visit the Food Network. I’ll never meet my friend Shawn in person or visit her in Seville, Spain.

And perhaps the hardest thing – I ran out health and activity before I ran out of treatment options. My body quit on me before my brain has. I’m not strong enough to meet even the compassionate release criteria for the newest drug for colorectal cancer. My ECOG activity score is around a 4. My kidney function is too impaired. In the greatest cancer race, hanging on until the next new thing becomes available, I didn’t quite make it to the finish line after eight years of trying.

Simple things are my goals now – and simple things are what I miss most. I miss spontaneous restaurant lunches with my friends. I miss being able to shop for fresh food every other day. I miss being strong enough to walk outside. I miss my dog, Madison, who I sent back to Virginia to be with her co-owner because I’m no longer healthy enough to care for her.

It’s sobering to realize that if I want to sort through my files, someone has to move the cabinet closer to my daybed because I can neither move it nor carry the loose files back and forth. It’s overwhelming to realize that if I want to open my daybed, I need help. It’s frustrating to have to ask someone else to do laundry because I can’t safely climb the stairs to get it done. Knowing that I may never be independently mobile again – that’s what I miss the most in this phase of non-treatment. More strength and mobility – that’s what’s on my bucket list these days.

That and, well, I decided that at the very least, I could take care of a little desktop aquarium and a betta. Petsmart is delivering the aquarium, filter, gravel and betta food tomorrow. A friend has already agreed to pick out my new fish…and maybe my sister and brother-in-law will take the tank when the time comes. Until then, it’s a small goal that I can reach, one that will remind me every day of brightness, and color, and movement – even when I can’t always accomplish those things.

Our guest blogger, Pat Steer is a stage IV rectal cancer patient who was diagnosed in 2004. She stopped active treatment on March 28, and is focused on living the time she has left as well as she can. You can read her blog Life Out Loud: Surviving Cancer and Living Life.

Dr. Indran Krishnan and Georgia Governor Nathan Deal

Indran Krishnan, MD, FRCP (London), FRCP(C), FACP, FACG is fighting colorectal cancer on many fronts. As a gastroenterologist, he personally screens people every week. As an associate professor at Emory University, he trains the next generation of physicians. As an advocate, he serves on Fight Colorectal Cancer’s Board of Directors, and was a founding member of the Georgia Colon Cancer Coalition. In the first 4 months of 2012, Indran stepped up his efforts by:

• Meeting with Georgia Governor Nathan Deal and members of the Georgia legislature to introduce them to Fight Colorectal Cancer and spread the word about screening;
• Attending this year’s Call-on Congress, our annual advocacy training and lobby day;

• Participating in a CVS Caremark webinar to speak about colorectal cancer awareness and the role of pharmacists as advocates for early detection and prevention of colorectal cancer;
• Providing the keynote speech at a “Closing Out March, Colorectal Cancer Awareness Month” ceremony sponsored by Given Imaging; and
• Answering questions about screening via Talk About Health. We thought you might enjoy reading Indran’s responses:

1. At the time of colon cancer screening what questions should a patient ask a physician?
2. Would you share what colon cancer screening is and what it entails?
3. How is it determined if someone is at high risk for colon cancer?
4. If my primary care physician suspects colon cancer, what are the next steps?
5. Is there any link between IBS (irritable bowel syndrome) and colon cancer?
6. Are there any new promising treatments or medications for men with IBS (irritable bowel syndrome)?
7. How do you decide what colon cancer screening option should be used for a particular patient?
8. If polyps are found during a colonoscopy, should I be worried? What are the next steps?

The first four sites where colorectal cancer patients can get regorafenib are now open.  Bayer Healthcare expects to open additional sites in the next two or three weeks.

Colorectal cancer patients whose cancer has gotten worse on all standard treatments can now be considered for the Regorafenib Extended Access program.

Bayer Healthcare has applied for FDA approval of regorafenib to treat colorectal cancer, but until it is actually approved and on the market, the expanded access program is the only way patients who might benefit can receive it.

Last fall, early results from the randomized Phase 3 CORRECT clinical trial showed colorectal cancer patients who received regorafenib lived longer than a similar group who got a placebo.

Results of the CORRECT trial were discussed at the 2012 GI Cancers Symposium in January.  Axel Grothey, MD and his team concluded,

Statistically significant benefit in overall survival and progression-free survival was observed for regorafenib over placebo in patients with metastatic colorectal cancer who have failed all approved standard therapies. No new or unexpected safety signal was found.

Patients in the expanded access program will get regorafenib pills every day for three weeks, followed by a week’s rest before repeating the treatment cycle.

The first sites are now open in:

• Sumter, SC
• Charleston, SC
• Jefferson City, MO
• Aventura, FL

For additional information email clinical-trials-contact@bayerhealthcare.com

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Recently the FDA evaluated 26 cases of children’s accidents that involved the patches including 10 deaths and 12 hospitalizations. Sixteen children were under two years of age.

Problems included curious children finding patches in the trash or stored within their reach. In addition, loose patches transferred the potent narcotic medicine to children who were being held or carried. Even used patches can still contain significant amounts of fentanyl, enough to seriously hurt a child.

Before using either the brand name Duragesic® or generic fentanyl transdermal system patches, read the FDA approved Medication Guide.

Safety includes

• Storing fentanyl patches where children cannot reach them, including in locked cabinets or behind child-safe latches.
• Making sure patches are firmly attached. Patches can be covered with special Bioclusive™ or Tegaderm™ see-through adhesive dressings for extra security, but don’t use any other bandage or tape. Check the patch often to make sure it is still securely in place.
• Disposing of fentanyl patches properly. Fold the sticky sides together and flush down the toilet. Do not put in the trash.

Early signs of fentanyl exposure may be hard to notice in children. If there is any reason to suspect an infant or child has come into contact with fentanyl, get emergency help right away.

Image courtesy of the FDA.

While no illness has yet been associated with eating the salads, a random sample collected by the State of New York found contamination with Salmonella.

The recalled packages have a UPC code of 71430 01057 and Product Codes 0577N089112A and 0577N089112B.

Consumers should check the codes and the use-by date and throw out any suspicious salads. Retailers are being told to check shelves for any remaining Dole Seven Lettuce salads and remove them.

If you have questions, you can call the Dole Food Company Consumer Response Center at (800) 356-3111, which is open 8:00 am to 3:00 pm (PDT) Monday – Friday.

People with cancer or who are on chemotherapy should be especially careful to avoid foods that may carry bacteria. They have less healthy immune systems and can become seriously ill from Salmonella infections.  Young children and the elderly are also at risk for severe, sometimes life-threatening infections.

More information about Salmonella from the Centers for Disease Control.

Symptoms of salmonella infection include diarrhea, vomiting, and abdominal cramps that develop 12 to 72 hours after eating something contaminated by the bacteria. Most healthy adults recover without treatment, but severe cases may require a trip to the hospital and antibiotics.

Nearly 1000 racially and ethnically diverse patients in urban primary care practices were randomly assigned to get colorectal cancer screening via:

• Fecal occult blood testing (FOBT)
• Colonoscopy, or
• Their choice of either FOBT or colonoscopy.

Overall, 58 percent were screened within the next year. 

• 67 percent of those offered an FOBT home test finished screening.
• 38 percent of those who got a colonoscopy recommendation actually had the exam.
• 69 percent of patients who had a choice were screened.

Non-whites were more likely to complete FOBT, while whites accepted colonoscopy more often. Latinos and Asians were more likely to complete screening than African Americans

John M. Inadomi, MD and his team concluded,

The common practice of universally recommending colonoscopy may reduce adherence to CRC screening, especially among racial/ethnic minorities. Significant variation in overall and strategy-specific adherence exists between racial/ethnic groups; however, this may be a proxy for health beliefs and/or language. These results suggest that patient preferences should be considered when making CRC screening recommendations.

SOURCE: Inadomi et al, Archives of Internal Medicine, Volume 172, Number 7, April 9, 2012.

No sooner than 10 years, the American Gastroenterological Association recommends as part of the Choosing Wisely campaign.

The AGA’s list of Five Things Physicians and Patients Should Question includes:

1. Use the lowest possible effective dose of acid reducing medicines to treat gastroesophageal reflux disease (GERD).
2. After a negative, quality colonoscopy, don’t repeat colorectal cancer screening by any method for 10 years.
3. After removing 1 or 2 small (less than 1 centimeter) adenomatous polyps without signs of cellular change (dysplasia), don’t repeat the colonoscopy for at least 5 years.
4. After two endoscopies without dysplasia, people with Barrett’s esophagus shouldn’t have another upper endoscopy for at least 3 years.
5. Patients with abdominal pain shouldn’t have a repeat CT scan unless there are major changes in symptoms or clinical findings.

AGA’s list is based on current published recommendations for the time between colonoscopy and endoscopy in people with low risks for cancer.

The Choosing Wisely campaign wants doctors and patients to talk together about tests and treatments that are supported by evidence, don’t duplicate other tests or procedures, are free from harm, and are truly necessary.

Ask your doctor, “Do I really need this test?” and “Do I need it now?”