Daughter:

Hello and welcome to the site, so sorry you had to find us but glad you did under the circumstances.  Everyone I've experienced on the site is wonderful - very caring and helpful.

I am 48 years old and was diagnosed in July 2009 and started gemcitabine and oxaliplatin.  It worked well and shrunk the primary tumor slightly.  I had to discontinue the oxaliplatin in February 2010 as it will cause peripheral neuropathy in the hands and feet after 4-6 months.  If one doesn't d/c it, the neuropathy can become permanent.  Mine has improved and my oncologists warned me that it may take a year to completely go away.

I am still on gemcitabine and now capecitabine (Xeloda), an oral form of 5-FU.  I have tolerated this well so far.

Tell your mother to hang in there and keep fighting.  I know how tough this battle can be.  Attitude makes a huge difference and makes the journey easier.  Hang in there and lean on others at this site for assistance and support!

Best wishes,
Mark

32Coupe & Lainy - My wife and I are looking forward to hooking up with you when we get back to our hometown of Phoenix, but not over the summer! Too hot!  We have family there and most were recently out to visit us in GA, so it won't be until Sept-Oct that we get back.  Good luck,
Mark

S St.Germain wrote:

Marion,
I just reviewed our 2009 policy and there was no maximum limit, however the 2010 policy put a maximum of one million dollars. This is probably something new that the insurance companies came up with to cut costs, however it will greatly impact most people on this site if it is the new standard.

Steve & Nancy St.Germain

Steve -
Welcome to the discussion boards, sorry you have to meet all of these great people under such circumstances.  Here is a quote from the WHite House Q&A on Health Reform:

"Beginning in September 2010, insurers will be prohibited from placing lifetime limits on what they will pay for your medical care, and they can only apply restricted annual benefit limits. Insurers will no longer be able to arbitrarily cancel your insurance policy when you get sick, except in cases of fraud".

See this link - hopefully will set your mind at ease with CIGNA. 

http://www.whitehouse.gov/health-care-m … -means-you

Are you out west? I know CIGNA is big in CA, AZ...I went to AHS in PHX with a Steve St. Germain.

Hello all -Have had a request for any information on a support group in Orange County, CA...anyone familiar with one, and if so who is the best person to contact?

Thanks!

Mark

5

(10 replies, posted in General Discussion)

Haven't had the need for a Tatoo yet, but if I do I am going to get one that says "Nuke me here" with an arrow! :-)

Kris - I am with you brother!  We campaigned hard to get pre-existing conditions elimination as part of the health care reform bill, and it went into effect for children this year but for adults it does not go into effect until 2014...in the meantime, the states or Fed Govt are setting up high-risk patient insurnace pools but it is not happening as fast as it could. 

I happen to live in a Southern State where the local politicians are fighting this...yes, they're about as backwards as you can get!!!!

Take care,

Mark

Hello all in the U.S. - a new bill was introduced in Congress by Representatives Davis (Dem-San Diego, CA), Courtney (Dem-CT) and Andrews (Dem-NJ) that would allow people currently on COBRA to extend their benefits past the 18 month time period.  The bill is called The COBRA Health Benefits Extension Act (H.R. 5324).  Write or email or call your Congressional Representative and two U.S. Senators and show your support of this bill.  It would not cost taxpayers anything as costs are borne by patients on COBRA only.  Here is a link to identify your Congressional Reps and Senators if you're unsure who they are:

http://www.usa.gov/Contact/Elected.shtml

I have posted an extensive article on my blog/website as well as include suggested verbiage for an email to your Rep/Senator so won't go into detail here but refer anyone interested to my blog at: http://cholangiocarcinoma.wordpress.com/

This is sorely needed during these hard economic times; COBRA can be a lifesaver for anyone out of work who is going through cancer treatment.

Hope Congress can act soon on this important piece of legislation!

Dear missingwayne:  Haven't been on the discussion board in a while, so sorry this reply is coming to you so late.  For insurance issues and hospital bills, contact the folks at Patient Advocate Foundation (http://www.patientadvocate.org) - they may be able to assit you in setting up payment plans, etc.  Have all relevant billing and insurance information ready.  Good luck!

9

(6 replies, posted in General Discussion)

Rick -

I am into month 8 for chemo, most of which was GEMOX and Tarceva and now just gemcitabine and Tarceva, dropped the oxaliplatin after 6.5 months.  Fatigue was the worst SE after peripheral neuropathy and cold sensitivity. 

I found fatigue the worst day 2-3 after infusion, but you'll find others on this site have had a variety of experiences with fatigue.  And yes, sometimes it seemed to hit me more than others and that's when it really stunk.  It was like it came in waves. 
I did find that even a little exercise helped me to combat the fatigue, I'm talking as little as 10 minutes on the treadmill and some free weights when it was at it's worst, thankfully I can do more now.  Often this would exhaust me but I think in the end it helped my body to combat the fatigue.  Watch what you're eating too - our diets tend to change and some foods can weigh you down more than others.  I found myself craving lean protein and fish more which helped me avoid "food comas" after meals.

Try your best not to dwell on it...if you find yourself sleeping all day you may want to talk to your physician as it is sometimes hard to discern fatigue from depression.  God knows we've all got enough reason to be depressed going through this!

Getting out of the house and taking walks, just getting outside is very helpful to me personally. If you have a four-legged friend, take them for a walk as a reason to get out.

Hang in there, the fatigue will come and go in waves.  Listen to what others suggest on this site, there is a plethora of experience here! Good luck Buddy,

Mark S.

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(0 replies, posted in General Discussion)

Hello CCA Community:

I hope that this is not too far out for this discussion thread, but I believe it has relevance to many who reference this site.  In addition to being a Cholangio patient, I am a volunteer for The National Patient Advocate Foundation (NPAF), 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 is holding Advocacy Days at State Capitols around the country over the next several months.  We just finished ours in Georgia Wednesday and it was a huge success.  We were able to meet with 11 state legislators and the Governor to express our concern over potential cuts to Medicaid Reimbursement.  Georgia Medicaid projected to experience a shortfall of $608 million dollar in fiscal year 2011.

Our message is a simple one: Medicaid provides a vital safety net to Americans who can

11

(13 replies, posted in Blogs)

Julia -

It is odd that at a microscopic level it is very pretty.  I am so glad it has brought you some tiny bit of comfort and joy.  You too are truly a "glass half full" type of person! Thanks for responding!
Mark

Lalupes wrote:

I hope the same for you, too, Mark.  I look forward to reading more.

I've saved your "histology" profile pic to my phone.  I found it oddly soothing to realise how something so tough to live with can be so incredibly beautiful, depending on how you look at it.  My sister was browsing my photos & came across the pic - I was concerned at first as to whether to tell her what it was, but I did ... & she said exactly the same!!  Your pic has soothed us both - thank you.

Julia :-D

12

(13 replies, posted in Blogs)

Hey all -

Many thanks to you for your support and comments, esp Lalupes, Katieloumatt & Darla for their recent comments.  I confess I am a bit behind in posting  to my blog and have committed to do so this weekend...have been busy with work and participating in some advocacy days at our state capitol. 

I really appreciate the support though and am happy to see so many new followers on my FB page.  Hope everyone has a great Holiday Weekend!

- Mark

13

(11 replies, posted in Introductions!)

Hello Kate and Welcome!  I too am relatively new to this site and have been amazed at the wonderful and kind words of support and stories of tremendous courage in the face of insurmountable odds in fighting this cancer that abound on this site.

I am so sorry to hear about your Mother.  My wife lost her mother to non-small cell lung cancer in 2008 and yet it still seems so recent...I can relate how tough it is to lose someone close to you like that.

I was diagnosed with cholangiocarcinoma in July 2009 and am now into my 7th month of chemo.  Tumor is unresectable but stable right now and I am looking at some alternative therapies.  It often feels like I have a time-bomb in my abdomen and some days it is dormant and other days I swear it is ticking away!  So I've learned to take it one day at a time and try to funnel my energy into positive activities that help others like me, which in turn provide a great deal of satisfaction and catharsis to me as well.

Stacie mentioned your desire to set up a support group down under and I think that is so great of you!  We have one starting up at Emory Univ in Atlanta, Georgia and our first meeting is next month; we'll keep you posted how it goes.  I am working with some of the other volunteers to set up guidelines and protocol so that people like you do not have to reinvent the wheel every time they want to start a support group.  I'll keep you posted.

Kind Regards,
Mark S

I am forwarding on some great information from the Patient Advocate Foundation (PAF) regarding the launch of a new National Underinsured Resource Directory.

In the spirit of full and open disclosure, I must state that in addition to currently battling my own CCA cancer, I am a volunteer State Policy Liaison as well as a paid consultant for the National Patient Advocate Foundation (NPAF), the sister organization to PAF.
------------------------------------------------------------------------------------------------------------------------
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. The link is: http://www.patientadvocate.org/help4u.php

15

(28 replies, posted in Announcements)

Rick - What have you gotten yourself into????  I finally joined FB so anyone on the site feel free to reach out and just leave a message that you're with this site as I am still learning everyone's names.  Will be recommending the site to my growing list of friends, so better start thinking about what you're going to wear Rick!
Mark

16

(4 replies, posted in General Discussion)

Hey all - The pill you're referring to is called Marinol (dronabinol) - it is essentially delta-9-tetrahydrocannabinol or THC.  It is made by Solvay Pharmaceuticals, which recently became a wholly owned subsidiary of Abbott Laboratories.  Solvay acquired Marinol in 1999 when it purchased Unimed Pharmaceuticals of Deerpark, IL.

Marinol has two indications: It is indicated for the treatment of anorexia associated with weight loss in patients with AIDS and nausea and vomiting associated with cancer chemotherapy in patients who have failed to respond adequately to conventional antiemetic treatments. 

It is usually a second or third line antiemetic and used when the 5HT3 antagonists like Zofran, Kytril or Anzimet fail to achieve effect.  One of the side benefits of the drug is an increase in appetite, which is why it is popular in patients suffering from cachexia.

While Solvay/Abbott is not actively promoting the product to physicians, it is still being manufactured and available, often by special order at the pharmacy.  The good news is that it is now a class III product and does not require special prescription writing limitations.

Here's a link to the product website:

http://www.abbottgrowth-us.com/products … 2-0,00.htm

Hope that helps!

Hello y'all:

After some light arm twisting and cajoling, the good folks at Emory University

18

(12 replies, posted in Chemotherapy)

Kathy -
I had a PICC line as it was the fastest way for my team to get me lined up for chemo on a Friday afternoon.  PICC lines are usually inserted in arm and can be inserted by a nurse like an IV, whereas (in general terms) a PORT is implanted in an O/P surgery setting by a surgeon. 

I had my PICC for 4+ months and was doing chemo 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 someone flush it with heparin solution every night and change the dressing at least once a week, more if heavy exercise.  Because of its location, you can't do this yourself (unless you have an extra arm and hand).  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.  It is under the skin and a physician usually inserts it as the insertion point is close to the top of the lung, so it's a little more involved.  Pain after incision was minimal and anesthesia was light (twilight sleep).  The chemo infusion insertion is with a special needle and you hardly feel anything.  Everyone I have talked to has commented they were so happy to get a port - and they can last for years if necessary.
Hope this helps!  Best of luck with the Port.
Mark

slester -

Glad to hear your side effects of chemo are minimal.  I too am new to the site although have been on Gemzar for 7 months.  Don't worry about the staging right now, it just helps the doctors to decide on which treatment to employ.  Keep the fighting spirit and we'll all hope and pray for tumor shrinkage.  Warmest Regards from North Atlanta area!
- Mark

Thank you all for the warm welcome and support.  These boards are full of so many stories of individuals fighting this cancer and all have a common thread...unbridled, amazing courage in the face of incredible odds.  Keep fighting!  We will beat this cancer!!!!!

Hello - My name is Mark, I'm 48 y/o and was diagnosed with a peripheral intrahepatic cholangio in July of 2009.  I had no clinical symptoms; my Alk Phos was elevated and this which prompted some additional labs and imaging studies.  Confirmed by needle biopsy after CT & MRI showed a 6.5cm lesion.  The tumor abuts a portion of the left branch of the portal vein, which would have to be preserved in a resection.  Surgery would require complete resection of the right lobe and preservation of the left lobe, but since the tumor was pressing against the branch of the portal vein that fed the left lobe, it was deemed unresectable for the time being.

I have been on GEMOX (Gemcitabine [Gemzar

22

(13 replies, posted in Blogs)

Kristin -

Thanks so much for the feedback, I truly appreciate it.  I will copy my post -Marion suggested I do this too.  I will ad some more bio information and get it on the Introductions board soon. 

I see you're in Berea, KY...I have kin in Ashland where my father is from! Small world.

Thanks again and all the best to you!

Mark

Hello - My name is Mark and I am 48 y/o and was diagnosed with a peripheral intrahepatic CCA in July of last year.  I have been undergoing chemo for last 7 months (GEMOX, Tarceva) and recently started a blog to discuss issues surrounding the diagnosis, treatment and recovery from CCA.  I also want to provide some resources to CCA patients and their caregivers.  I want to thank Marion S. for inviting me to join the discussion here at cholangiocarcinoma.org and post a link to my blog.  Marion and I share the same passion for the need for advocacy on behalf of CCA patients!  My blog is not intended to compete in any way with the wonderful work of the Cholangiocarcinoma Foundation;  My hope is that we will augment each other's efforts in generating more awareness and focus on this disease which will result in more research and management, and eventually a cure!!!  My blog site is:

http://cholangiocarcinoma.wordpress.com