One Year on Chemotherapy…

Anniversaries can be bittersweet events.  On one hand a wedding anniversary, for example, can be a celebration of undying love, patience and steadfast devotion that says “Hey we stuck it out, through good times and bad, through temptation and frustration but we persevered – and we made it work.  Here’s to us!”

On the other hand, the anniversary of a loss – whether it be of a loved one, a beloved pet, a career – can be a time when a nearly healed scab gets ripped off to reveal raw, painful emotions which were thought to be finally under control.

I am celebrating an anniversary of sorts myself today:  I have been on some form of chemotherapy for my cancer for one year now.  365 days.  I have mixed emotions about this, but when I weigh it all out, I conclude that I am truly grateful to be able to celebrate this particular anniversary. 

It was a little over 12 months ago when I was diagnosed with a challenging cancer;  I was actually unsure at diagnosis if I would be around to celebrate another birthday.  Thankfully,  I passed that milestone this last week too, and in pretty good shape, all things considered.  For this I am extremely grateful. 

When I reflect back on this past year, I can’t help but observe a few things about my cancer journey that I feel I should share with others in a similar situation, especially those just recently diagnosed.  Maybe someone without cancer can benefit from these pearls as well.

1. Don’t Sweat the Small Stuff.  Really.  I know it may sound like a cliché, but I speak with some authority here.  Most of the stuff we worry about on a daily basis never materialize.  Most problems that we anticipate have a way of sorting themselves out before they ever present themselves to us.  Worrying about a bunch of stuff that you can’t control only serves to stress you out and shorten your life – stress hormones are a bitch on your body.
2. If you don’t already, you’d better learn to appreciate and respect your family.  They are the ones that will be with you through the miserable times, the chemo, the radiation and for some, the humiliation of having someone take care of basic hygiene for you when you’re physically unable to yourself.  Believe me, not many of your work buddies will volunteer to come over and flush your PICC line for you (or worse).  I have seen it first hand in my own family and experienced it myself; Parents, kids, siblings, aunts, uncles and cousins literally coming out of the woodwork and stepping up to the plate to assist. It may not be in the way you always need, but they’re trying and doing what they can.  They’re there for you.  They have a sense of commitment that most others can’t fathom.
3. Along those lines, a cancer diagnosis has a way of revealing who your true friends are.  Close friends who you thought would be there for you and thought actually gave a crap mysteriously become unavailable, stop calling or emailing,  Perhaps they can’t deal with it, perhaps they don’t know what to do, or say – I am not sure the reason.  On the other hand, friends and co-workers who I would have considered mere acquaintances suddenly extend themselves in ways you couldn’t have anticipated and really come through.  Close friends become closer and consistently show love and altruism beyond comprehension  It is truly amazing.
4. Stop to appreciate the simple wonders around you.  As westerners in the dawn of the 21st century, many of us seem to have our priorities all screwed up.  We race around like crazies, trying to multi-task during every waking hour of the day (and sometimes when we’re not awake), feeling very industrious yet not really moving forward.  My suggestion is to take some time to appreciate the beauty and wonder of nature around us (even in a crowded metropolis, a city park can be a wonderful sanctuary).  Technology has certainly made our lives easier in some respects (ease, speed and access to unfettered communication), but it has also isolated us from each other.  If you’re so pre-occupied with being entertained 24 hours a day that you must wear i-pod headphones everywhere you go, you’re really missing out on a lot of potential fascinating interaction with others.  Texting is not a high form of interpersonal communication.  Turn the technology off for a few hours each day and enjoy the wonders around you – you may learn something in the process.
5. Hopefully a cancer diagnosis will not have to be the impetus to do something meaningful for others.  Volunteer, help a neighbor, reach out to a recent grad and give them some advice, see how you can assist someone less fortunate.  I’ve found that by changing my focus on others it has allowed me to tolerate my cancer and the various adverse events that come with both the disease and the treatment much better.  Not an easy thing to do when you tossing your cookies after chemo, but at the very least, it takes your mind off of your own problems and helps to put things in perspective, especially when you’re helping others who have it much worse.  Believe me, there is always someone who has it worse.
6. Finally, try hard not to let your diagnosis control your life.  Easier said then done at times, but trust me when I say if you let your cancer control you and what you do, then you’ve already lost the battle.  You have to fight like hell to beat your cancer.  Be your own advocate, research treatments, push your medical team, make up your mind to control the disease, don’t let it control you. I know it must be tempting to use a cancer diagnosis as an excuse not to do things, to give up, to submit.  If you do, you’ve begun to let the disease control you, instead of controlling the disease.

Well that’s my sermon for today!  Ha Ha.  Some of my regular followers probably wonder what’s gotten into me, since most of my posts tend to be resource or issue oriented advocacy posts, and not your typical blog fare.  I promise to be more diligent in posting research and resources in the near future; I’ve been busy living.  In the meantime, Happy Anniversary to me.  I’ve got a life to live.

Clinical Trials Webinar: Capecitabine, Gemcitabine, & Radiation Therapy in Treating Patients With Cholangiocarcinoma

 

The Cholangiocarcinoma Foundation is generously sponsoring a free Webinar this Tuesday, March 23, 2010 at 11:30am – 12:30 pm EDT.

As part of our ongoing Spotlight on Clinical Trials series, The Cholangiocarcinoma Foundation invites you to join them for the upcoming web-based seminar featuring the active cholangiocarcinoma clinical trial entitled, “Capecitabine, Gemcitabine, and Radiation Therapy in Treating Patients With Cholangiocarcinoma of the Gallbladder or Bile Duct.” Principal Investigator Dr. Edgar Ben-Josef of the University of Michigan will lead the discussion of this clinical trial. A question and answer session will follow Dr. Ben-Josef’s remarks.

Click here to register.

This clinical trial was developed by the Southwest Oncology Group, and is a multi-center phase II clinical trial studying how well giving capecitabine together with gemcitabine followed by capecitabine and radiation therapy works in treating patients with cancer of the gallbladder or bile duct. In this trial, participants receive oral capecitabine every 12 hours on days 1-14, and gemcitabine hydrochloride IV over 30 minutes on days 1 and 8. Treatment repeats every 21 days for 4 courses in the absence of disease progression or unacceptable toxicity. After the 12 week cycle concludes, participants begin receiving oral capecitabine every 12 hours on days 1-7, and undergo concurrent three-dimensional or intensity-modulated radiotherapy on days 1-5. Treatment repeats weekly for 5-6 weeks in the absence of disease progression or unacceptable toxicity.

All you need is an internet connection to join this Web-based seminar.  Once registered, you will receive an email with a link specific to you and instructions on how to join the Webinar on Tuesday.

PICC or PORT Line for Chemo?

“To PICC or PORT, that is the question:” With apologies to the Bard of Avon, my topic today is to discuss some of the differences between a PICC line and a PORT for chemotherapy. 

A PICC is a Peripherally Inserted Central Catheter.  It is essentially an intravenous (IV) line that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines such as Central Lines or Ports as it terminates into a large vessel near the heart (the superior vena cava). However, unlike other central lines, its point of insertion is from the periphery of the body and usually a vein in the upper arm is the most common insertion point.

Unlike a standard IV line which is inserted in an arm or hand vein and terminates after only a few centimeters, A PICC line is usually inserted in the arm using ultrasound to guide the specially trained nurse or technician who is doing the insertion.  PICC lines differ from peripheral IV access but are similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access, such as chemotherapy, prolonged antibiotic treatment or TPN nutrition.  

Nutrition, Cancer and Chemotherapy

My guest blogger today is  Ms. Tiffany Barrett, a Clinical Dietitian at the Winship Cancer Institute of Emory University in Atlanta, GA.  Ms. Barrett writes about the importance of maintaining weight and adequate  protein intake while undergoing chemotherapy.

Maintaining adequate nutrition is an important part of your cancer treatment.  Eating a variety of foods will help you obtain the proper amount of calories and protein.  Getting enough protein is important to the healing process as your body uses protein to rebuild tissue.  Protein requirements are often higher in cancer patients because of the change in protein metabolism.  Without adequate protein the breakdown of lean body mass is increased from the demands of the tumor and treatment.  Loss of lean body mass can lead to inability to heal, decreased strength, weakened immune system, loss in independence and decreased quality of life.  And even if you are overweight, losing weight is not healthy or recommended during treatment.

 Try eating every 2-3 hours meals of protein and calorie dense foods.  Excellent protein sources include fish, poultry, eggs, dairy, legumes and soy.  There are several commercial oral supplements on the market to help provide higher calories and protein.  Add protein to foods by mixing protein powder or powdered milk to beverages, casseroles, soups, mashed potatoes or hot cereals.  Make your own smoothie or milkshake by adding whey protein isolate or egg protein powder.  These protein supplements can be found at most drug stores and nutrition stores.  To add variety and increased nutrition mix, blend with fresh or frozen fruits.  Good snack choices include peanut butter, nuts, dried fruit, cheese, yogurt and protein bars.  Think of food as the fuel necessary to get you through treatment.

Tiffany Barrett MS, RD, CSO, LD 

Clinical Dietitian

Winship Cancer Institute of Emory University

Tarceva® (erlotinib) Skin Rash

Authors Note: Different classes of drugs that show anti-Epidermal Growth Factor (EGFR) activity are being used to treat cholangiocarcinoma (CCA).  There are several drugs that show this effect, including Erbitux^® (cetuximab), Iressa^® (gefitinib) and Tarceva^® (erlotinib).  Tarceva is the drug I am currently taking and thus the focus of this post.     

The Tyrosine Kinase inhibitor erlotinib (trade name: Tarceva^®, manufactured by: OSI Pharmaceuticals, Distributed by Genentech) has shown anti-Epidermal Growth Factor (EGFR) activity and is being used for cholangiocarcinoma (CCA) patients (1,2).  Pancreatic tumors, colorectal tumors, non small cell lung cancer, and tumors of the biliary tract such as CCA often show over expression of EGFR (2,3,4).  Alterations in the function of EGFR lead to cell growth, invasion, angiogenesis, and metastases. Over expression has also been associated with a poorer prognosis (5,6).    

The convenience of a daily oral chemotherapy regimen

Clinical Trials & Cholangiocarcinoma

Today I had the privilege of joining a Webinar sponsored by the Cholangiocarcinoma Foundation.  First, kudos to these good folks for sponsoring Jack Welch, M.D., Ph.D. of the National Cancer Institute’s Division of Cancer Treatment and Diagnosis.  Dr. Welch gave an informative lecture on the ABC’s of Clinical Trials. 

I won’t go into all of the details discussed, but some statistics Dr. Welch cited caught my attention:  There are approximately 5,000 new cases of biliary tract cancer diagnosed in the U.S. per year.  Contrast this to the 146,00 new cases of Colon Cancer per year or the 219,000 cases of lung cancer and you can easily see why there are not as many clinical trials on biliary cancers like cholangiocarcinoma (CCA).   More disturbing is the fact that only approximately 3% of U.S. Adult cancer patients participate in clinical trials.  Compare this to 90% of children diagnosed with leukemia participating in clinical trials.

However, this is not a reason to lose hope!  Despite the relative rarity of CCA and the fact that it has typically carried with it a poor prognosis, new treatments have

Cold Sensitivity & Chemotherapy

Snow Day!

 

Well, after getting three inches of snow yesterday in the Atlanta, GA area, it seems appropriate to speak about cold sensitivity while undergoing chemotherapy.  Many of the agents used to treat cholangiocarcinoma (as well as other cancers) are well known to result in cold sensitivity.  This is the result of peripheral neuropathy, which is damage to sensory nerves, most commonly in the hands and feet.  Some chemotherapeutic agents damage the axon part of the nerve cells, which interferes with signalling.  This causes numbness and tingling in the fingers and toes and can also result in cold sensitivity.