1

(42 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

6

(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

8

(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

kris, ditto the above.  you go girl :-)

love,
barb h

10

(8 replies, posted in Members' Cafe)

lainy, lainy, lainy  -  happy Chanukah to you  and i know you have plenty of lights at your home :-)

geez, how long does it take to get an approval?  i feel really bad for you and teddy.  i just had an mri on monday, a pet/ct on wednesday, and a colonoscopy yesterday (still fighting the darn pain).  blue x, my so called insurance, sent me another one of their infamous form letters stating in capital letters and bold print that the pet scan "is a certification of medical necessity only and is not a guarantee that benefits will be paid."  we shall see if i have to appeal this one to the state.  on top of that, my treatment center is having billing problems (they are changing to a new system), so i get doubled billed and sometimes more than that. 

i'm pulling for you girl, please tell teddy hi for us.

with love,
barb h

11

(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

lainy,

was it medicare that paid for the previous pet scans or was it your other insurance? 

you can appeal to the az state board.  i appealed to the ca board when i was fighting with blue cross and was able to get help for approving avastin. 

also, there was that article in the aarp nov/dec issue that lists "ways" to "make insurers pay."

medicare's help line   800-medicare;
patient advocate foundation   800-532-5274  patientadvocate.org

good luck lainy,
barb h

13

(5 replies, posted in Members' Cafe)

lainy, lainy, lainy..........
thank you so much for inviting us to stop by your home to meet you and teddy.  you are gorgeous .... as in WOW!  we are still talking about how beautiful you are.   to top that is your inner beauty.  what a combination.  teddy is pretty darn cute too.

we LOVED meeting you and teddy and had a wonderful visit.  as you said, the time just flew by.  i'm hoping that we will get other opportunities to see you again.

much 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

wow lainy, maybe somehow i/we can figure something out.  as it is, my daughter, sandi, had already made plans with some friends in tucson so we (my husband booth, my middle daughter sherri & me) will see them sometime later that day.

we plan to start driving back home sometime on saturday as i prefer not to do it all in one day.

lainy if you would email me at barbara_hartley@hotmail.com i'll give you my cell phone #.   

you are going to be really busy with so much company.  i honestly don't know how you are going to do that lainy.... considering all you and teddy are going through.  i hope to goodness you are NOT doing all the cooking. 

it's a bit of an emotional issue that i'm not baking pies and stuffing a turkey, but with all the pain battles and the pain meds.... i can't push myself that hard.  plus, i know that little jaedon really really would love to see us.

also.... i saw a colo-rectal surgeon today so i need to find the correct place to post that info.  i'll try to do that tomorrow.... i'm really tired.

much love,
barb h

19

(16 replies, posted in Thought for the Day)

marions, that reminded me of a "funny" story that happened to me years ago.  it has to do with carrot pulp and it was supposed to be a cure of sorts for wounds.  welllllllll, i had injured my leg when i went running through my house to get something (in the dark right after i had rearranged the furniture) and hit an unmovable coffee table at full speed.  sooooooooo, my new zealand friend informed me that carrot pulp was just the fix i needed.  so, i applied some to my leg and put some tape over it.  the next day i left for a church retreat in the local mountains. 

i managed to get blood poisoning (got some ink from a ditto machine into a paper cut on my finger) and was taken to a hospital   the er doc asked if i had any other wounds and if they were slow to heal  (looking for diabetes i think).  that's when it hit me that i still had carrot pulp taped to my leg.  when the doc saw the carrot pulp .... i thought he was going to call for the guys in the white coats.  he proceeded to fire a lot of questions at me as to just what kind of church i was involved with.  i don't think he believed me when i told him that it had nothing to do with the church. 

next the church members questioned me, then people where i worked.... i decided that i wound not try that "treatment" a second time. 

i can't remember if the carrot pulp helped at all and but whatever was done to treat the blood poisoning did help. 

love,
barb h

lainy, i'm interested.  i live in southern california so it's a strong possibility....   actually, as of today, it appears my husband, one of my daughters, and i will be driving to casa grande during the thanksgiving week/week end.  as usual for us, the trip is a bit jumbled as to time/hours/etc. but we are really looking forward to spending time with our youngest grandchild jaedon.

oh yes, i did email aarp in an attempt to pass on info about this website to the female you and i had discussed a few  weeeks ago.  if i should "hear" anything i'll let you know.  i hope that she will look "us" up and post here.  i have no guarantee that aarp will contact her with the info i provided. 

much love,
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

22

(22 replies, posted in Members' Cafe)

lainy i was married to a liar and a cheat, but i only made it 7 years.  he is silician.... uh oh.  looks like you got the good one  :-)

my grandson is back with his mom...  he was doing pretty good, but he's acting out again...

thank you lainy for your support and thank you julia for the return hug.  you two are always there for everyone.... i'm hit and miss with this board...  it's going on 1 a.m. so i'd better hit the snore shelf.

love to you both,
barb h

23

(22 replies, posted in Members' Cafe)

dearest marion,

there are no words to express our thanks for then endless work you and your staff do for this "board."  it is truly a work of love and i hope you don't burn out. 

we have been graced by your big heart and the excellence of your research.  when i was first diagnosed, the john hopkins board had a few people posting.  it was all there was and it helped, but this site is extraordinary. 

thank you a gazillion times to the entire "crew."

with love and respect,
barb h

24

(22 replies, posted in Members' Cafe)

lainy, about that stress.....  plus there's more on the web site. 

http://www.webmd.com/balance/stress-man … -of-stress

sooo, you are trying to say that wonder woman might have a minor crack in her armor?  just teasing.  i have times when i feel like you.  after years of incest, then kidnapped, then a single parent when my children were 2, 4, and 6.   

post my cancer diagnosis, my oldest went through an emotional divorce, middle daughter had a stalker, my youngest (who we believe to be bipolar) was sent to jail and her son jaedon (who was almost 6 at the time) went to live with his so called father.  last dec. we took jaedon full time and he was diagnosed with bipolar while he was with us.  as much as we love him, he is very very difficult to handle and care for.  during that time, one of my brothers died from bladder cancer, i had a central line infection..... since then, jaedon's single mom has gotten pregnant (she's not married .... ), another brother was diagnosed with prostate cancer, and then my husband had prostate cancer surgery, my middle daughter has been going through a depression, my pain issues, battling blue x, and ........there's more but everyone is sick of my soap opera life.  i'm not complaining, it's just how it is... what the heck can i do?  plus, bless my husband but he is the world's biggest hypochondriac, i'm not kidding.  but i do get tired........ and i carry so much guilt for not being able to care for everyone and now i'm getting to where i just want to be left alone.    sorry.......wonder woman..... i'm on your side.

much love to you,
barb h

lainy, thanks for the info on your insurance.  like you, i think you have been fortunate to not have to fight for coverage... but i do wonder if some of it is because neither of you have had chemo.  although, i'm battling my insurance over pain meds too...........   i'm just glad for you and teddy.

now about that theresa person.........  if i get my head screwed on soon (don't hold your breath) :-) i'll try to see about sending a short note to aarp.  perhaps they might be of some help.  too bad the article didn't say where theresa was getting her treatments.

much love to you and your sweet daughter for working so hard.

barb h