I just wanted to touch base and say I am working on a new article on – what else – biliary stenting and the complications that come with it. Need to finish some research before I am ready to post so keep an eye out, I will post soon.

I wish everyone a Happy and Healthy New Year in 2011. I have been awed by the tremendous outpouring of support from the blog community, patients and caregivers alike. It is very humbling and I am so glad my posts, articles and links have been a help to so many. Thank you!
Mark

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.

I am very pleased to introduce my guest blogger today:  Christi Disch is the Program Services Manager at MyLifeLine.org Cancer Foundation, based in Denver, CO.

How can I help? How are you feeling? How long is treatment? Can I bring a meal? What do you need? The questions are endless when you are first diagnosed with cancer.

 MyLifeLine.org provides a tool for cancer patients and caregivers to streamline their communication during and beyond the cancer journey so they don’t have to answer the same questions over and over again.  Our mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing.

 Our free, customizable websites include the following features and more…

Patients can easily build their online support community to share information on their terms via one central website. 

• By updating friends once, the patients reserve more energy for healing. See the Connecting Updates page.
• Family and friends appreciate getting the latest information without being intrusive.
• Patients aid their own healing process by expressing what they are feeling and experiencing.
• Patients can keep in touch with pictures of their cancer experiences or fun photos of family and friends.
• Patients know they are loved with caring messages from family and friends.
• Patients can ask for help on the Helping Calendar for meals, transportation, etc.
• Patients can ask for help financially through the Giving Angels Page
• Patients can educate their support network on the type of cancer they have and the treatment  process, through the learning links

Research has shown that strong support networks can improve access to health care (Abstract on formal and informal support networks and National Cancer Institute on communication throughout cancer treatment). Our websites help streamline that communication and also make it easy to ask for help.

 You can watch our video here. If you have any questions about MyLifeLine.org you can email support@mylifeline.org

Well, there is hope on the horizon.  Last week, U.S. Representatives Susan A. Davis (D-San Diego), Robert Andrews (D-NJ) and Joe Courtney (D-CT) introduced legislation to allow those people currently on COBRA to hold on to their health care coverage longer.

The COBRA Health Benefits Extension Act (H.R. 5324) allows those currently enrolled in COBRA to purchase their insurance beyond the standard eligibility period, generally 18 months, until they either find another job offering coverage or become eligible for the an insurance exchange to be created by the new health reform law.

“The extension of coverage will give those currently on COBRA peace of mind that they will have health security,” said Davis.  “Losing a job that has health insurance coverage while treating an illness at the same time is a frightening prospect for so many people and their families.  We need to give people a bridge between coverage.”

“The health care reform bill that became law in March was the first step to providing all Americans access to affordable health insurance, but those struggling without a job simply cannot afford to wait for some provisions to take effect,” said Congressman Andrews. “This legislation ensures that recently unemployed Americans will not lose their health benefits before the new insurance exchanges are up and running. Rather COBRA enrollees can rest a bit easier knowing that the health and wellbeing of their families will not be jeopardized while the changes to our health care system gradually take effect.”

“Weathering unemployment is difficult enough without also having to worry about health care costs or how to pay for a catastrophic injury,” Courtney said. “With long-term health care fixes on the way, it is important to provide a bridge to fuller benefits, and extending COBRA coverage will do just that for many Americans. Erasing the worry of expiring benefits will lift a significant weight from overburdened men and women who can now focus on their futures and their families.” 

Davis, Andrews and Courtney all serve on the House Education and Labor Committee, which has jurisdiction over H.R. 5324. 

COBRA coverage can be extremely valuable to those facing a serious health problem or chronic condition.  The average cost of treating breast cancer rose to nearly $21,000 and prostate cancer to over $41,000 in 2008, according to the National Cancer Institute.  The costs for treating cholangiocarcinoma are even higher in my personal experience:  Every trip to the chemo suite carries with it an insurance billing of approximately $9,000 – $14,000 (depending on drugs used), and that is with plan discounts.  This is a 3 time-a-month occurence for me now.  That of course does not include CT scans, lab work or physician consults.  Out of pocket costs for cholangiocarcinoma patients can easily top $10,000 – $15,000/year even with COBRA insurance coverage. 

Here’s how you can act to show your support of this important legislation:  Contact your U.S. Congressperson and two U.S. Senators and let them know that as a voting constituent, you support this important piece of legislation and expect them to support it as well.  It doesn’t carry any cost to the taxpayer as the costs of the premiums are paid by the insured who have elected COBRA coverage with a small fee paid by employers.  Here is a link to a site that will help you to identify your U.S. Congressional Representatives and U.S. Senators if you’re unsure who they are: http://www.usa.gov/Contact/Elected.shtml

Here is sample verbiage that you can use in a letter or email to your Congressional Representatives and Senators:

Dear Representative/Senator_____:

I am writing you to ask your support of an important piece of legislation that will offer protection to millions of unemployed Americans.  The COBRA Health Benefits Extension Act (H.R. 5324) allows those currently enrolled in COBRA to purchase their insurance beyond the standard eligibility period,  until they either find another job offering coverage or become eligible for the an insurance exchange to be created by the new health reform law.

This bill would not create a burden on taxpayers as the costs would be born by the insured.  It would offer a safety net for those unemployed or self-employed and their families currently relying on COBRA benefits. 

Thank you for supporting this bill.

Respectfully yours,

(name, address, city)

I was very fortunate to attend the 101st Annual meeting of the American Association for Cancer Research in Washington, D.C. last week. 

There were lots of promising compounds beginning pre-clinical testing by several companies that may someday have an application in treating bile duct cancers.  Unfortunately, there were not many presentations on current clinical research with Cholangiocarcinoma.  One poster presentation by a group of researchers in Japan showed evidence that a particular type of liver cell called a Hepatic Stellate cell, which has been known to cause fibrosis in chronic liver conditions, may play a key role in the formation of cholangiocarcinomas, and thus may direct future therapy development.  I have summarized the study below.

In the meantime, I am looking forward to attending the CanLiv Hepatobiliary conference in May and ASCO in June, where there are numerous clinical trails that will be discussed.  More on those later.

Poster title: Hepatic stellate cells promote progression of cholangiocarcinoma in vitro and in vivo

Authors: Hirohisa Okabe, Toru Beppu, Hiromitsu Hayashi, Takatoshi Ishiko, Toshiro Masuda, Ryu Otao, Masayuki Watanabe, Hiroshi Takamori, Hideo Baba. Kumamoto University, Kumamoto, Japan

Summary: The study was designed to identify if hepatic stellate (HS) cells, which have previously been shown to have as pivotal role in fibrogenesis (defn: Formation of fibrous scar tissue) in the liver, exist in the cancer stroma and architecture of intrahepatic cholangiocarcinoma (CCA) cells and what the interaction of these cells are in vitro (in the laboratory) and in vivo (in a living organism).  HS cells are found in the sinuses between liver parenchymal spaces and exist in normal liver tissue in a quiescent state and only become activated when there is damage to the liver, as in cirrhosis or fibrosis.  It is thought that HS cells play a pivotal role in storing vitamin A when quiescent, but then release collagen scar tissue when they are activated in periods of disease. The authors examined proteins secreted by the co-culture of HS cells and CCA cells in culture medium and in mice in multiple combinations.

This results of this study indicated that HS cells have an important role in accelerating cholangiocarcinoma growth progression. Several proteins including Interleukin1 (IL1β), which is a potent proinflammatory cytokine, induced by co-culture model may be therapeutic targets for chemotherapy which focus tumor-stromal interaction in cholangiocarcinoma.

Most hospitals – even local and regional medical centers which are not affiliated with teaching centers – have at least one or two cancer support groups.  These are for the more prevalent cancers like lung, breast, colon or prostate.  Few hospitals have support groups for liver cancers and fewer still for cholangiocarcinoma.  So what is a cholangiocarcinoma patient or family member to do?

Well, there are several options.  First, you can try to join a general Cancer group if one exists.  If it is a larger Regional Hospital, they may have a GI Cancer or Liver Cancer Group for all types of liver CA (Hepatocellular Cancer, Cholangio, etc.) or a PanCan group for Pancreatic Cancer;  While not the same, many of the chemotherapy regimens and surgical techniques used in treating Pancreatic Cancer are similar to those employed in treating cholangiocarcinoma, so there are some similarities there.

An alternative option is to form your own Support Group.  This may sound like a daunting task but it is really do-able and just takes some leg-work on your part.  Let me address a few FAQs to start with:

What exactly is a Support Group?   A Support Group is a small gathering of patients and caregivers who share common experience with this disease; People who truly understand what you’re going through and can relate.  A support group is a judgment-free forum to discuss disease-related issues with peers.  Anything is open for discussion and humor is necessary to deal with some of the serious aspects of this disease.  A support group is an opportunity to “vent” feelings.  It’s also an opportunity to make new friends who share the same disease.  No one knows better what you’re going through than fellow patients and caregivers!  Be prepared to hear different points of view about the disease, cancer in general, how to deal with it, the role (or not) of religion.  Be tolerant of other’s views and try to understand that they are dealing with this in their own way that is right for them.

Why form a Support Group?   While on-line discussion boards and chat rooms are very helpful, meeting face to face with others in a like situation can’t be replicated on-line.  I cannot stress this enough – the personal interaction is much more robust.  Support groups allow patients and/or caregivers to vent with others who truly understand what they are going through; No one can truly walk in your shoes but other patients and caregivers dealing with similar clinical situations can come close to understanding your journey.  The presence of a social worker is also very helpful in asking relevant questions and helping the group to stay on task, in the event someone ventures off to left field on a tangent. 

Who will help me establish the group?    So the first thing you’ll want to do is to enlist the aid of one of the social workers who works with your oncology team.  If your not familiar with who that is, be sure and ask your physician or advanced practitioner (RNP or PA) and they can refer you.  If this is the case, I would let the physician know what you want to do and enlist their support, then ask the physician or RNP/PA to introduce you to the social worker.  It doesn’t hurt to have the clinicians in your corner when approaching the social worker. Most major centers have a social worker or counselor assigned to cover patients for multiple physicians. Let them know you will help to coordinate this.  This is key in enlisting their assistance as chances are, they are moderating several other groups & are already very busy – so your offer to help will be welcomed.  Be prepared to help with getting the word out and doing some of the leg work to prepare for the meeting.  You’ll be taking some of these routine tasks off the plate of the social worker, but don’t worry – you can handle it!

Where do I have our Support Group Meeting?    Most hospitals and teaching institutions have conference rooms for use by groups.  These rooms may have to be reserved weeks or even months in advance and may only be reserved by a staff member, so you’ll need some assistance from the social worker or physician’s staff here.  In the event that you wish to have the meeting after normal daytime business hours, you’ll want to make sure that the building the conference room is in is open to the public without key access after regular business hours.  You should also ask if the building and parking area or garage is well-lit and has security if the meetings will be held at night.  If no conference room is available, alternatives are local restaurants or coffee shops which have a private room.  I stress the importance of using a private room as support group meetings can sometimes be emotional events and it is better for participants if there is a degree of privacy offered by a separate room than meeting in the open area of a restaurant.

How often do we hold a Support Group meeting?  Holding a meeting once a month is usually frequent enough.  The social worker will probably be running other support groups (lung, breast, colon) so be cognizant of their schedule, especially if it is after business hours.  They have a life too and don’t want to spend every night after work running a group no matter how noble the cause. Once you get a few meetings going, members can always meet up more frequently for coffee, etc. if they desire outside the normal meeting time.

How do I let others know about the Support Group Meeting?  If working with a social worker, they will probably have to make the initial contact to patients (HIPAA) but you can assist by drafting email verbiage for the social worker to use – again not a big deal but it takes something off of their plate.  Ask the social worker if they can recommend contacts at other centers for you to notify;  Most centers “share” patients for the less common or “orphan disease” support groups.  Cholangio patients definitely fit this description.  Also – other centers will welcome the support.  If you do send out emails to patients, send to yourself and “Blind CC” the others for privacy reasons.

Some general group considerations:  Here are some important considerations courtesy of Geret N. Giles, Ph.D., Pleasant Grove, UT:

Commit to the confidentiality of the group.  In order for significant work to be done in a support group, members must have confidence that what they share will be respected and not discussed outside of the group.

Help the group start and end on time.  Group members have placed other commitments and obligations aside to participate in the group and their time is valuable.

Remember that everyone in the group deserves compassion and respect.  All group members have certain rights in the group:

1. Right to speak/remain silent
2. Right to speak without interruption (including side conversations)
3. Right to ask a question/refuse to answer
4. Right to protection when absent from the group

Listen first, speak second.  There’s a reason why we have two ears and only one mouth.

Give others the opportunity to speak.  Each group member must monitor themselves to avoid monopolizing the group’s time.

Speak for yourself.  Each group member must speak in a way that takes ownership of what they think and feel and allow for the possibility that they may be the only one who thinks or feels that way—and that’s OK.

Share experiences and feelings rather than advice.  The power of the group comes from members sharing their experiences and feelings as fellow travelers on life’s path rather than as experts who know more than everyone else.

Logistical Considerations:

Signage.  Ask if the center allows you to post signage up in advance of the meeting.  If it does, make 8.5” X 11” notices of meeting details and post them in areas where patients congregate.  Be sure and check with the social worker in advance as you may have to have an official stamp on the signs so the custodial workers do not remove them prematurely.  Areas to consider posting are:

• Labs
• Infusion centers
• Waiting areas 
• Hallways & elevators

Ask the clinic nurses to post in the exam rooms used by the GE Oncologists.  Don’t worry about getting too fancy – you want people to be able to easily read the notice in a hurry.  Give the basics – What the group is, how often they meet, what time and where.

Food.  Depending on when the meeting is to be held, you may want to ask if you can bring food to the meeting.  Donuts or bagels, fresh fruit and coffee, bottled water and soda are a nice touch.  The Social Work team may have a budget for this and can provide.  If not, be willing to pitch in if food is important.  I feel that it’s okay once you start a group and learn the dynamics to ask others to pitch in to help defray costs.  Perhaps you can get different sponsors for each meeting like the American Cancer Society chapter or local restaurants, coffee shops.  Think outside the box on this one!  NOTE: Keep in mind that warm or very odoriferous foods may have a negative effect on patients undergoing chemo, so be aware of that before bringing a hot steaming bowl of tomato bisque or Limburger sandwiches! And obviously don’t forget napkins, cups, utensils, sugar, sugar substitute, creamer, etc.

Location.  I recommend you check out conference room or location ahead of time.  I can’t stress this enough – it avoids any unpleasant surprises at the meeting itself.  Are the any special considerations about the room like location, is it typically too cold or too hot? Are there enough chairs?  If you were to need more, who would you contact to get them?  Also include directions in your email and on notices – don’t assume everyone knows their way around the center as they may be coming from other facilities, so the more specific the better.   Don’t forget to include directions on where to park.

Getting the word out.  So if you’re not sure of the other cancer centers in your area, use Google to search for other facilities in the area and you’ll find contact information for the oncology department.  Often centers will have contact information for other support groups posted on-line and this may be a good place to start.  I have found that Email followed up by a phone call is best way to contact other centers.  Don’t forget to reach out to other groups that can help get the word out: American Cancer Society local chapters, Cancer Coalitions, Liver Cancer groups, Cholangiocarcinoma Foundation, local cancer discussion boards and relevant blog sites and if you are comfortable with sharing the information you can post notices on social media networks like Facebook, MySpace, Twitter, etc.

I hope that this has been helpful.  If you haven’t got a local support group in your area you should now have enough to start your own.  I welcome your feedback and suggestions, especially if I have left anything out.  Also – if you do end up setting up a Support Group in your area, please share your experience with me and my readers.  I will eventually post a separate page on the website listing support groups.

Good luck!

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.

Patient Advocate Foundation Launches National Underinsured Resource Directory

NPAF’s sister organization, Patient Advocate Foundation, has recently launched a ground-breaking new online tool called the National Underinsured Resource Directory  which is intended to help underinsured individuals and families locate important resources and seek alternative coverage options or methods to cover their healthcare needs.
 
The National Underinsured Resource Directory is available through an online interactive tutorial program, and a written publication that supports the program.  The comprehensive online tool will help underinsured Americans faced with high out-of-pocket costs locate valuable resources and action steps to provide financial relief.
 
“We are pleased to provide this valuable tool to the millions of Americans facing problems securing critical medical care services due to their inadequate health insurance benefits,” said Nancy Davenport-Ennis, Founder and CEO of PAF.  “Patients across the country will be able to gather information from the Q&A and action steps we have put together, improving their access to the quality care they need and deserve.”
 
NPAF and PAF encourage you to utilize the National Underinsured Resource Directory if you are underinsured and struggling to meet out-of-pocket obligations.  In addition, please share information about this valuable resource with your family and friends who may find it beneficial.
 
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life-threatening, chronic or debilitating diseases.  NPAF and PAF were founded on the principle that health care is a basic human need and shared social responsibility.  If you are a patient in need, for more information visit http://www.patientadvocate.org/ or call PAF toll-free at 1-800-532-5274.

Note: In the spirit of full and open disclosure, I must state that in addition to currently battling my own cancer, I am a volunteer State Policy Liaison with the National Patient Advocate Foundation (NPAF),  the sister organization to PAF. 
NPAF is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.  NPAF translates the experience of millions of patients who have been helped by our companion, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.

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.  PICCs can also be used to draw blood samples.  PICC insertions are less invasive, have decreased complication risk associated with them, and can remain in place for chemotherapy use for up to 6 months, perhaps longer if properly cared for.  After the nurse or technician inserts the PICC, they may order a chest x-ray to confirm ideal placement. The entire procedure can be done in a patient’s room or a clinic exam room. 

The PICC may have single or multiple lumens.  A lumen is simply an access port with its own line that terminates in a junction prior to the point of insertion in the arm – think of a straw that has more than one mouth end prior to forming into a single tube before entering a milkshake!  Whether a patient has one or more lumens depends on how many intravenous therapies are needed.  The other feature of a PICC is that it needs to be flushed constantly with small amounts of heparin in order to keep the line from clotting.  The disadvantage here is that because of its placement on the arm, someone else has to be taught how to do this for the patient (unless you’ve got three functioning arms) as it is impossible to do oneself.  PICC Lines must be covered when showering and you really can’t go swimming with one in place.  I used Saran Wrap and cloth first aid tape to keep mine covered when showering.  I have heard others used Press N’ Seal or some variation of plastic wrap to keep theirs dry.

A Port (or Portacath®) is a type of central line that, like a PICC, has an intravenous line that terminates into a major vessel near the heart.  Unlike a PICC line though a PORT has a small reservoir which is under the skin and which is accessed by a special needle when a patient has to receive chemotherapy, TPN, blood products or have frequent blood tests.  The PORT reservoir is completely contained under the skin once implanted and therefore does not require flushing with heparin as often as a PICC line does.  A PORT has to be implanted by a physician under local anesthesia.  Also, one of the big advantages of a PORT is that once the incision heals, the patient can shower or swim without having to cover the PORT like they would with a PICC; nothing remains visible on the outside of the body.  Another advantage is that a PORT can stay in place for several years, whereas the realistic lifespan of a PICC line is usually 4-6 months. 

An alternative to a PORT is a Central line that is inserted in the chest and extends into a major vessel.  In this respect it is very similar to a PICC, except that the end of the line and lumen are on the outside of the chest, instead of on the outside of the arm.

I personally had a PICC line inserted first as it was the fastest way for my team to get me lined up for chemo late on a Friday afternoon;  The PICC, as you recall, can be inserted by a trained nurse.  I had my PICC for 4+ months and was having chemotherapy every 2 weeks.  I opted to have the port put in last December as it really offers much more freedom; for example, with the PICC I had to have a family member flush it with heparin solution every night and change the dressing at least once a week, more if I undertook heavy exercise.  I would also have to cover my arm in Saran Wrap as you cannot get a PICC insertion wet when showering.  PICCs limit your independence somewhat but if therapy is planned for a short time they will work well. 

When I had my PORT inserted, once the incision site healed after a few days I was able to shower and swim and the chemo nurse flushes it once every two weeks  when I was in for chemotherapy.  Pain after incision was minimal and anesthesia was an outpatient twilight sleep – Propofol (e.g., Diprivan®) or Midazolam (e.g., Versed®).  The chemo infusion insertion is with a special needle and I hardly feel anything, although if the thought of a needle piercing the skin makes you squirm the nurse can numb the area with a topical anesthetic first.  Every patient that I have talked to has commented they were so happy to get a port as it offered up much more flexibility and freedom than a PICC line.

The following web site has some excellent illustrations of the different types of central lines and PORTs described above:

http://www.cancerhelp.org.uk/about-cancer/treatment/chemotherapy/having/iv-chemotherapy#picc

New Atlanta, Georgia CCA Support Group

I realize that this is specific to those living or having treatment in the Atlanta, Georgia area but wanted to help get the word out about a new support group that will be meeting at Emory University Hospital in Atlanta on the third Friday of each month beginning in April.         

It is open to cholangiocarcinoma patients and their family/caregivers and will be moderated by a member of the Emory University Social Work Team.  Support groups are a great way for patients and caregivers alike to get together and talk about issues they face in fighting the disease, dealing with treatment and coping in general.        

Here are the details:        

What:   Cholangiocarcinoma Patient & Caregiver Support Group        

Where: Emory University Winship Cancer Center, Room C3018      

The Winship Cancer Center is located at 1365-C Clifton Road NE, Atlanta, GA 30322. Click here for directions: http://www.mapquest.com/mq/7-IGP9Xkevn*uyHkksF738        

When:   Third Friday of Each Month (Starting April 16th) from 12:00noon to 1:30pm        

Contact: Leave me a comment or email me if you need further information.