Christine,
i have not been active on this board for a very long time.... was having a 'quick look' before trying to get some sleep and saw your message.  back in 2010 i had several lung lesions and had a VATS procedure to remove a section of my left lung that was then biopsied.  turns out that lesion was due to a fungus infection called a MAI infection not a metastasis.  i don't want to give you false hope but until one of those lung spots can be biopsied i don't think that it's 100% certain that it's a cholangio met.

i found my own tumor in dec of 2002 and have had 7 surgeries on my liver.  i have now reached the point where i am no longer considered operable and am waiting to learn where i go from here.  however, i've made it this long by questioning and researching, having excellent docs, and in the past learned a lot from this board.

wishing you the best
barb

2

(80 replies, posted in Introductions!)

olga, i am so sorry for what you and your beloved husband are having to endure.

perhaps my history will give you/your husband some hope.  i had my 5th liver resection this past feb 27th.  i found my own (first one) tumor in dec of 2002.  my first surgery was feb 2003 and i was NOT offered any other treatment at that time.  i researched and then forced 'kaiser' (my then health insurance) to do a pet scan and a tumor marker.  it was then i found out the cancer had returned.  i was offered radio frequency ablation by kaiser.  the doctor that was to do the ablation had never done one herself.  soooo, i paid out of pocket for ??? i think it was 3 more opinions.  one of the docs i saw was dr lenz at norris cancer center in los angeles, ca.  he advised me to not to do the ablation at that time and to see dr, selby.  i was able to change insurances at the end of 2003.  i met with dr. selby after that and he told me that i was operable.  so i had my 2nd liver resection in feb 2004.  i started chemo in apr of '04 and was on chemo until ?? may '08.  i did have a few months off from chemo during that time.  i had my 3rd resection in aug '06, a VATS procedure (lung biopsy showed MAC infection not cancer); 4th liver resection june '12, and my 5th feb 27th 2014. 

it has been a roller coaster but i've experienced a lot of wonderful moments, events.... 

i have intrahepatic cholangio and was initially given 3 to 6 months.  soooo, in spite of the down times i am very, very, glad that i have fought through so much and have lived for those beautiful moments. 

wishing you strength, hope, and the best for this crazy journey.

barb h



i

marco i have NOT posted to this site in a very long time and just 'happened' to 'look' and saw your question.  i have intrahepatic BDC and i have had FOUR liver resections.  the first in feb 2003, 2nd in feb 2004, 3rd in aug 2006, and fourth in june 2012.  during the 2012 surgery the surgeon, dr. singh, discovered SIX tumors via intra-abdominal ultrasound.  he debated about closing me up without proceeding due to so many tumors and would need to remove a lot of my liver.  thank goodness he decided to operate.  four of the tumors were malignant.  by the time of the 4th liver resection, my liver had grown so large that dr. selby excised the tumor via my left side of my abdomen. 

i've had years of chemo and issues as a result of treatment.  BUT i fought so hard as a child to survive horrendous treatment (and many other things  since)  that i do everything i can to live as long as i can.  as you have learned on this site, it is critical to get several opinions.  it can make a huge difference with the doctors who treat you.

wishing you hope, guidance, and the best treatment that should be done for your dad's situation.

hoping for more time,
barb

mark, i feel your fright... i found my own tumor in nov of 2002.  i have intrahepatic cholangio too.  during my first liver surgery, my entire left lobe was removed.  i had a recurrence within a few months. 

i had my 2nd liver surgery in feb 2004.  had another recurrence and a 3rd liver surgery in aug 2006. 

post my 2nd surgery i had more than 4 years of various chemos.  i had a short 'break' from chemo at one point.  my last chemo treatment was in may of 2008... WOW that's shook me a bit just now to realize how long it has been.... 

i had a VATS procedure in feb (?) 2010 - the lesion was benign. 

when i found my tumor, i cried for days.  post my diagnosis and learning how serious this disease is, i cried harder. 

with my first recurrence, i felt it was even more difficult to cope as the research pointed toward a really bad outcome.

however, i had to focus on the task at hand and then my fight with getting my insurance to pay for treatment kept me very busy. 

for me, it took some time to adjust to what i was dealing with and just like everyone else, life's other challenges did not give me a break. 

this site did not exist when i was diagnosed and it is truly a blessing for everyone who has anything to do with this monster.  i hope that this support family will help guide you, ease your pain, and help you through a fight of a life time.

i don't come here often as i am dealing with other family issues, but i will check back on a regular basis for the next week or two in case you have any questions that i might be able to help you with since i am one of the longer survivors.

sending you love and hope,
barb h

hi marion, and a very belated thank you for being at the walk.  hi to lainy too.

it was pure joy to meet you marion.   what a beautiful place to have that event take place.  booth (my husband) and i loved being there and meeting others who are joined together in fighting this wicked disease.  everyone that we talked to was warm and caring.  a very special time for us.

on the way home we visited with one of my brothers who was vacationing in montecito with his wife and his mother-in-law.  his father-in-law passed away in feb from pancreatic cancer. 

marion, i hope to get my act together in a week or two and post my survivor story.  we've been consumed by family problems since our return and i am in survival mode.  however, i know how much i appreciated reading other long term survivor stories so i will deliver :-).

thank you again marion and to the board and other volunteers for all you do.

with love,
barb h

lainy, i finally viewed your youtube posting... i am so sorry... hospice those people should not be working in those positions.  as you know there are some good hospices and obviously that one is a farce.   thank you for speaking up.

on lainy.... teddy.... my tears are flowing... booth and i send our love... i ...for some reason... have been having a difficult time trying to read the board messages.  there are so many newbies and so many messages.  i can't catch up :-(  the board is amazing and gives help and hope to so many. 

i just wanted you and teddy to know that we wish you the best as you experience these emotional days, nights of teddy's last chapter. 

take care beautiful lady and please tell teddy we send our love.

love,
barb and booth

7

(4 replies, posted in Insurance)

justine, i fought blue cross and eventually was able to get approval for avastin.  just when i got approved for the next round 'we' decided to stop treatment for awhile.  however, i was helped by the california state department of insurance.  i sent them a huge file of rejection form letters from blue cross and details of my ongoing battle with cholangio.  also, i was able to receive some avastin through 'single point of contact' in that i qualified due to financial parameters.

i enlisted everyone's help that i could think of for my fight.  several nurses at norris cancer center  (where i receive treatment), my oncologist, my husband's work, me making endless phone calls and letter writing and threatening to contact a lawyer.  it was a longgggggggggggg battle and very stressful, but if eventually paid off.  i'm still alive after 7 years. 

due to many other stresses in my life, i do not come here often, but i will try to check back here for the next week or so in case i can be of any assistance.  also here's a phone number for the nonprofit patient advocate foundation
800-532-5274; www.patientadvocate.org.  plus other possibilities are:
www.healthinsuranceinfo.net for guides for each state; www.naic.org is the national assn. of insurance commissioners. 

i also have a bunch of word files with info that might be useful.  if you would like them just post an email address and i will flood you with that stuff.  it's not well edited sooooo, it might be a bit overwhelming to get through.   

wishing you the best,
barb h

oldest daughter, have you asked the doc for zofran for your mother?  that is the one med that has worked for me.  it melts on your tongue so it gets into your system quickly.  you might give it a try. 

sending you loving thoughts as you travel this difficult road.

barb h

9

(19 replies, posted in Introductions!)

Mom'sDaughter,  wow, i can hardly believe my eyes.... dr. selby is one of my surgeons and i have been under dr. lenz's care since 2004.  i had an appointment with lenz just this past thursday and saw selby the last week of october.  the past 2 weeks i've seen several "new" docs due to increasing pain and increasing ca19-9.

ohhhh, on top of that.... i'm from glendale as well.  what a coincidence.

sorry to say, but i don't post here very often... it seems i'm always distracted by other things, but this site is the BEST and this cholangio family is truly amazing. 

good luck to you and to your mom.

barb h

10

(16 replies, posted in General Discussion)

kris,

words..... i don't know ....

my heart goes out to you and your family as you find your way along this latest bend in the cholangio road. 

you are a marvelous person, a wonderful spirited woman who lifts the rest of us from our weariness. 

may the support of your many friends on this board help to carry you through this difficult time.

with love,
barb h

suzanne,
absolutely terrific news!  great to hear!  in aug you had more than 20 tumors show up........... this is as good as it gets.  YAHOO!

lwith love,
barb h

lainy,
boy this is getting more exciting.... the possibility of meeting even more people from this board.  it's been quite a while since i've actually done something for myself and meeting you and the possibility of other cholangio "associates" is truly something for ME.  i'm really looking forward to that day.

thank goodness our motorhome decided to not start today instead of waiting until next week. sooooooo, our little beach get away has been delayed until at least tomorrow.... our motorhome was towed to the "hospital" today and that bill is not cheap.  such is life.  so, i'm hoping we get to leave tomorrow.

lainy, have you heard anymore about teddy's PET?  i take it you are fighting with the insurance.  geez, after i asked you about you having any problems and you said no.  all you need is the barb jinx.  my family has a saying about me... if it wasn't for bad luck, i wouldn't have any luck at all... at least i can laugh about it.

kris.... us knee scrapers are always glad to meet another one.  i have fallen down many times when my husband and i were running.  he'd still be talking and realize i was no longer next to him.  he would look back and see me face down in the dirt.  i thought that now that i am only walking, i could stay upright, but nooooooooo. 

i'm with hans.. i think you need the picks on your shoes, ice hurts... been there, done that. 

love, barb h

yikes kris..... it's now the day after your birthday. 

put another candle on your birthday cake,
i didn't bake a birthday cake
put another candle on your birthday cake,
you're another year old today
hooray or however you spell that

i LOVE you sense of humor..... your writing ..... brightens my day

thank you for being "sassy" lassie

a big hug to you with love,
barb h

lainy, i saw a colo/rectal surgeon thurs (i think it was thurs) who was pretty certain that my bowels aren't the problem.  i was so anxiety ridden waiting for him (more than a hour past appointment time) that i was ready to leave.  thank God he turned out to be a very nice man.  he confirmed my feelings about my concern over my increasing tumor marker and prolonged increase pain.  he said he would be worried to.  he might order an mri of my bowels just to rule out any other possibilities.  so, i am NOT going to try to taper my pain meds at this time.

i have an appointment with a thoracic surgeon the 1st week of dec.  i'll see pain management before then and get another tumor marker plus i see my oncologist before then as well.  not to mention i'll get to see you too. :-)

oh kris, if you read this... then you are updated on my pain battle....  however, it means i still don't have any answers as to the increasing pain problem.  i hope you are feeling better, darn disease.  i was happy to read that you got a little vacation.

my husband and i are off to be beach for 3 nights in our motorhome & i'm going to try to ride my bike a few miles while i'm there.   here's hoping i don't crash (that one of my trade marks)... graceful i am NOT.

much love to all,
barb h

lainy, i haven't been "on" since the 2nd of nov soooooooooo i'm way behind.  however, yesterday i "ran" across a "pull-out" from a cure magazine and it is a guide to rare cancers.  in it was mentioned GIST.  it said that many GIST patients' tumors have a mutation in a KIT gene and that Gleevec blocks the effects of the mutant protein that causes the cancer to grow.  it said that tumor response rates up to 85% when Gleevec was given.  Gleevec also deceases the change of recurrence when given after surgery to remove the tumor.  there are a couple of websites you might be interested in

www.gistalliance.com/magazine and www.rare-cancer.org/forum (for many rare cancers). 

also the national organizaton for rare disorders www.rarediseases.org or call 800-999-6673. 

there's the NIH's office of rare diseases research at
www.rarediseases.info.nih.gov or call 888-205-2311. 

there's also www.curetoday.com/toolbox for more resources

maybe some of this will be of help to you

my apologies for not being around, but as usual our soap opera continues here and i just run out of energy to keep up..... insurance battle, etc.

i'll be back later or sometime this weekend as i'm seeing a colorectal surgeon tomorrow to get his opinion about my increasing pain along with my ca19-9 going up at 20 points each time.  teddy has me beat, i'm at 114.

i saw my liver surgeon last week and i was stunned by his opinion this time... he wants me to taper off all pain meds but had nothing to say about my increasing tumor marker and my lungs lighting up on the pet scan.  :-(

love,
bh

16

(17 replies, posted in General Discussion)

kris,

is there anything you can do to speed things up for your scan?  if you complain a lot would that help?  what's the deal with the doctor?  is there another doc that's as qualified as the one who's playing hide and seek with you?  i hope you are able to get some action soon.

thank you kris for your support and for telling me about jeff's lung treatment.  i managed to get an appointment with my surgeon (from 2004) for the 30th.  i've had some lung issues for years; however, i keep getting new clusters and with my marker continuing to rise... more than doubled in 7 months... i'm thinking it's probably the beast.

i'll let you know what the surgeon says and i hope, hope, hope you get a scan NOW.

barb h

i already posted this at another place on the board.... but thought i should have posted it here.  it's a link to an article in the latest issue of aarp that is about insurance claims being rejected.  one of the people in the article appears to have cholangiocarinoma and she lives in phoenix, az.  here's the link

http://www.aarpmagazine.org/money/healt … _game.html

barb h

18

(17 replies, posted in General Discussion)

kris i got the results of my pet scan.  nothing showed up in my liver or the areas where i'm having so much pain (just like you). 

there are more problems in my lungs and my tumor marker went up some more.  but.....i was certain, due to the pain i'm having, that the pet would show lesions in my liver, abdomen, etc.  i know this isn't a guarantee, but at least we know that you can have pain and it doesn't appear to be caused by the cancer..... wellllllllll, as far as accuracy in scans go. 

barb h

don't know if this will be of much help but here's a link to info about scar tissue.  i found it to be very informative as i'm experiencing a lot of pain since my last surgery.

http://ce.nurse.com/ce573/CoursePage

hoping that your mom improves.

barb h

20

(17 replies, posted in General Discussion)

hey kris, i've been having increasing pain problems for ???? months.... in the surgical area and then it spreads around to the middle of my back.  plus, i'm now getting significant pain on my left side.  i have learned that my pancreas is atrophied and i do have dilated bile ducts in my liver.  sooooooooooo,   i finally was able to get a pet scan today and will get the results on monday.   who knows, perhaps i'll find out something.  i just tired of the darn pain and tired of increasing the oxycontin .... gone from 10mg 3x every day to 30mg 3x every day.  makes me very tired.

however, this blasted disease is darn near impossible to track as every time i've had a surgery there's always more tumors than what appeared on the scan. 

i'm still kicking... against all odds......... hope prevails.

oh yes, about your hair........... i vote for being wild.... that is if you can handle hans' reaction :-)  at the very least you could try on many wigs and inquire as to dyeing them if you should chose to do so and you could get really creative.  later, if you decided you don't like any of them you don't have to wear them.  you are in the driver's seat and i say try to have some fun in a situation that you did not expect.   you could video the episode and make it entertaining.... life gives you lemons you make lemonade.

barb h

Melonhead and Ron Smith,

i found a little bit of info that might help to explain your battle with edema aka swelling.   perhaps it will be a bit of help.

wishing you both relief,
barb h

http://www.caring.com/questions/diureti … ver-cancer
My father, who has throat cancer that has spread to his liver, has severe swelling in his feet. The doctor isn't encouraging about using diuretics, but I'd like to try. Is there a reason not to?


Answer by Andrew Putnam
Andrew Putnam, M.D. is the director of the Palliative Care Program at Lombardi Comprehensive Cancer Center and Georgetown University.
You can always ask your doctor for a diuretic and see if it works. There's no serious danger, but it may not do your father much good, and there are some potential side effects.

Diuretics work well for most kinds of fluid retention because they cause the kidneys to excrete more fluid. But if the cause of the edema is lack of liver function, as appears to be the case with your father, then it's more complicated than other types of fluid retention. When the liver isn't functioning well, it isn't making adequate proteins. Proteins help balance body fluids by sucking fluid out of the tissues and back into the blood serum. In your father's case, what's needed is more protein to reduce the swelling in the tissues. Unfortunately, eating more protein won't help because when you eat animal protein, the body has to break it down into amino acids and then rebuild those into human protein -- and it's this protein-building process that isn't working.

A diuretic medication will remove fluid from the veins and arteries and cause it to be excreted by the kidneys, so it

Besty,

sorry you are having a tough time.  as far as your food intake goes, it's been 3 years since my 3rd surgery and i still take "creon 10" (a prescription) 3 times a day with meals.  it does help with digestion.

you might try to find a registered dietitian who specializes in oncology.  if you can't find someone via the hospital where you were treated, you might be able to get some help via the American Dietetic Association.

good luck Besty, hope you find some relief soon,
barb h

23

(17 replies, posted in In Remembrance)

hi patty, i'm glad you got a kick out of my comments about my "match making" and the "flaws" that husband needs to work on.  judy (the volunteer) is truly an amazing person. 

for everyone who has suffered the tremendous loss of a beloved spouse, i offer my heartfelt sympathy.  i hear your pain through your words.........  the greater the love, the greater the loss... i hope that somehow, someway, your pain lessens as time passes. 

with the greatest respect
barb h

darla,

thank you for your kindness.

my husband is scheduled for "nerve sparing" surgery this coming tuesday.  he has an excellent surgeon and we are hoping that the cancer (although it's a high grade per his gleason score) has not spread.

take care,
barb h

hey heather,

i'm a bit of a realist in that i always want to know what i am up against... perhaps so that i can try to be as prepared as possible and try to not leave any stone unturned.  perhaps this is due to so many unheavals in my life ... before cholangio.   here's a link that might help give you some info.

http://emedicine.medscape.com/article/277393-overview

obviously, and thank goodness, there are exceptions to everything and i feel we must keep hope alive.

i found my own tumor in nov/dec 2002; 1st surgery feb 03; 2nd surgery feb 04; 3rd surgery aug 06;  more than 4 years of various chemos/treatments.  not currently on treatment ... but holding ok but battling pain.  husband dx with prostate cancer this week; brother with prostate cancer; another brother died from bladder cancer in jan this year; our 7 year old grandson dx with bipolar while in our care a couple of months ago; his single mother just announced (this past sunday) she is pregnant with yet another child......... these are some of the reasons i do not post here very often.  having said that i do retain hope

wishing you the best,
barb h