1

(21 replies, posted in General Discussion)

So sorry Stella.  I haven't had good news  after any of my treatments so far.
I know how discouraging this is.  I hope & pray you can have some comfort & peace.

2

(7 replies, posted in General Discussion)

All is good with the port a cath.  I remembered the doctor telling me the stitches are inside & covered on the outside with a glue typed substance.  So I took off the bandages & there was definitely a covering of the glue.  Took my shower & all looks good!  I will go have it checked Monday & start the chemo Tuesday. 

My tumor is pressing on my diaphragm & causing a really bad cough.  It hurts when & cough & I also cough when I take a deep breath.  Now my left rib area really hurts when I cough.  My tummy has also gotten pretty big.  Lets hope my chemo shrinks enough  to stop this nasty cough.

3

(7 replies, posted in General Discussion)

I had a port a cath inserted yesterday.  Came home with what to do & it said not I could shower in 24 hours.  But it said nothing about the dressing.  Do I leave it  on?  How long?  of course when you have a procedure on Friday there is no one answering any calls on Saturday.  Any suggestions??

so sorry I haven't updated.  I have read new posts & support all of you & what you are going through!  I sometimes have to not go here as it is hard to hear of so many passings. Also of all the different treatments whether they work of not.
I admire those of you who seem to be able to hang in there so well during chemo & remain active.  I have done that the best I can.  The latest is I got a port a cath put in to begin folfiri.  After Y90, 2 different chemo combos my tumor is now twice the size I began a year ago.  Pretty dismal.  I finally have better insurance & love the surgeon I saw, Dr. Selby at USC & my oncologist at UCI, Dr. Seery.  She is very up on all the latest CC treatments & does lots of research & was also at the conference in San Francisco.
The one thing I was to say to you all is you are right about getting 2nd opinion right away.  I was naive & had lousy insurance & it was almost a year that I saw this 2nd surgeon. He told me he wished he had seen me a year ago.  My CC has doubled in size & no probably is not able to have resection.  He said the only possibility is for the folfiri to shrink.  My oncologist is also submitting me for some trials.  I recently began a place on caring bridge.  If any of you are interested in my journey go to: www.caringbridge.org/visit/patmorse
My best to you all on the roller coaster we are all on.

so sorry I haven't updated.  I have read new posts & support all of you & what you are going through!  I sometimes have to not go here as it is hard to hear of so many passings. Also of all the different treatments whether they work of not.
I admire those of you who seem to be able to hang in there so well during chemo & remain active.  I have done that the best I can.  The latest is I got a port a cath put in to begin folfiri.  After Y90, 2 different chemo combos my tumor is now twice the size I began a year ago.  Pretty dismal.  I finally have better insurance & love the surgeon I saw, Dr. Selby at USC & my oncologist at UCI, Dr. Seery.  She is very up on all the latest CC treatments & does lots of research & was also at the conference in San Francisco.
The one thing I was to say to you all is you are right about getting 2nd opinion right away.  I was naive & had lousy insurance & it was almost a year that I saw this 2nd surgeon. He told me he wished he had seen me a year ago.  My CC has doubled in size & no probably is not able to have resection.  He said the only possibility is for the folfiri to shrink.  My oncologist is also submitting me for some trials.  I recently began a place on caring bridge.  If any of you are interested in my journey go to: www.caringbridge.org/visit/patmorse
My best to you all on the roller coaster we are all on.

Lainy,  I had a meningioma 10 years ago.  I must say it was a lot easier than CC.
I had surgery & they got the whole tumor & had no problems after!  It was benign.  It is the same tumor Elizabeth Taylor!!

My husband was a printer for many years & I worked in the office & then 2 years ago in another printing company!

8

(20 replies, posted in Good News / What's Working)

So happy for you !  How I long to hear those words someday! 
God Bless You!

Is this IRE done in the USA?

10

(7 replies, posted in General Discussion)

I haven't been here for awhile but wanted to wish everyone a very Merry Christmas.  I am so thankful that I am here & able to celebrate!  My oncologist is amazed that I am doing so well.  I have been off chemo for 3 months now & my blood work is good.  My CA-19 has gone up slightly.  I saw another surgeon 2 weeks ago.  Dr.  Selby from USC.  He said there might be a slight chance for surgery.  He wants me to have a PET scan and try & get on a trial.  I am waiting for the authorization to get the PET scan.  Then in January I will be able to see doctors I want as we have changed my insurance to a PPO.  Financially it is going to stretch us but my husband needs to do all he can to 'fix' me!!  I am just so happy to be feeling pretty good right now.  We will continue this battle as long as we can.  CC is so different for everyone.  Some find out they have it and only live for a few months.  Some have lived for years with it.  I am not sure how long I have had it but my diagnosis came 15 months ago.  I know God has a plan & He knows the number of my days more than any doctor & He is the Great Physician. 
God bless you all & bless your holiday however you celebrate it.

11

(12 replies, posted in Good News / What's Working)

What chemo is your mum on?

12

(17 replies, posted in Introductions!)

God Bless you Wordman!  It is amazing that God gives you His strength to still be able to continue being a pastor!  I don't know if you knew of Pastor Chuck Smith but he had the same strength & gave his last sermon 3 days before he went to be with the Lord!

I also had the y 90.  Same as Lauren with the pressure on the groin where they insert the instrument for the spheres.  Other than that I only had some fatigue & a little nausea.  Nothing serious.

Your story is much like mine Mary.  I know how you feel & how hard it is to hear that nothing has been working!  I feel good though.  Have not had any CC symptoms so far except for a little pain where the tumor is & some tummy issues. But feeling better since I am on a chemo break.  I am trying to get some referrals but only have an HMO & keep getting denied.  I can only take one day at a time & make the best of each day.  Also having faith in God who is the Great Physician! 
Blessings to you!
Pattimelt

Dr. Imagawa was the surgeon I saw at UCI.  I was not able to have surgery but he referred me to Dr. Kuo the radiologist who did my SBRT.  My tumor did not shrink so Dr. Imagawa sent me back to my regular oncologist for chemo.  I had 2 rounds of Gem/Cis but my platelets went way too low so then 2 rounds of Oxa/Zeloda.  Unfortunately none of the chemo shrunk my tumor.  I am now trying to get a referral to Dr. Selby at USC who has done surgeries that Dr. Imagawa would not do.  I have been denied by my insurance to see him.  It is very frustrating.  Dr. Imagawa is very straightforward & lets you know exactly where you stand.  Your questions are all good questions for him.  Hopefully he will be able to perform surgery for you!  Blessings to you. 
Pattimelt

16

(2 replies, posted in Insurance)

Thanks KrisV.  I am appealing the denial to see a surgeon at USC.

17

(2 replies, posted in Insurance)

I have had a medicare HMO supplement & have had trouble getting referrals to see doctors who have treated cholangiocarcinoma's.  My oncologist is not proactive about it & the surgeon I saw at UCI determined that surgery was not an option for me.  I tried to get a second opinion at USC but was denied by my insurance.  We do not have the means to pay out of pocket for the expensive consultations either.  We are trying to decide if we can afford to pay a larger monthly amount to put my on a PPO medicare supplement with Athem Blue Cross.  Do any of you have any advice about this??  We need to know before Dec. 1st.

I didn't lose any hair with Gem/Cis but I only had 3 rounds of it.  Then with Oxa/Xeloda did not lose any hair either.  Also only 2 rounds of it.

The coffee enema thing is from the Gershon (sp?) institute.  You also have to drink 13 green drinks a day & to go to the clinic would cost $4000 a week!!  There is a documentary you can watch online.  It is interesting but I couldn't do the coffee thing or the 13 drinks!

I just realized I posted this in the wrong place.  Should have been in the Alternative place!!  Oh well!!  When I asked the surgeon how I got this he said, "You must have pissed off a witch"!!  Ouch! 
Thanks for your input.  I agree with you all!

I have had so many 'friends'!!  tell me I should try this or that diet.  Dr. Oz had someone on the other day said if you take 1 tsp. of wasabi a day it will cure  cancer!!  Been told by another friend to go to 'know the cause' online and watch.  This guy claims all cancer is caused by fungus so go on the diet to eliminate all foods with fungus!  Then cannibus is supposed to cure cancer.  I get overwhelmed & don't know what to say to them.  Does anyone here know anyone who has been cured by any alternative methods!!  I am trying to eat as healthy as I can.

Dear LadyLinden,
I am 67 & was diagnosed a year ago with the exact same Stage IV, inoperable intrahepatic bile duct cancer.  I 1st went to see a surgeon who determined it was inoperable then he sent me to see the radiology oncologist at UCI.  I had 2 SIRT treatments of radioembolization.  They did not shrink my tumor.  I then went on 2 rounds of Gem/Cis with no bad side effects except my blood count went way down & my tumor marker #s increased.  Then went on Oxaliplatin/Xeloda with worse side effects.  I had horrible sores on my legs.  Then had an MRI showing my tumor had grown.  So none of the treatments have worked for me.  I am now on a chemo break.  My oncologist said even if I had more chemo it would only give me 3 - 4 months than with no treatment.  I feel great.  No symptoms at all from the cancer.  Just fatigue.  My oncologist said why not take a few months off chemo & enjoy feeling good!  I will see her every month to check blood & then another MRI to see how the tumor looks.  It is a little scary not having any treatment.  I am trying to see another surgeon for 2nd opinion. 
This disease is crazy.  Seems like everyone reacts differently to treatments.  I believe with all my heart that God is the Great Physician and will lead me to the right decisions regarding further treatment options.  I am not sorry I tried chemo & if it had worked I would probably still be on it. 
God bless you!

23

(22 replies, posted in General Discussion)

Just got a call that I was denied the authorization to see Dr. Selby at USC. sad  They are referring me to a Dr. Charles Chandler at UCLA.  Has anyone seen him?

24

(22 replies, posted in General Discussion)

Good news!  We got the authorization to see Dr. Selby at USC. I have to get all y records to them now.  That should be a huge task.

25

(22 replies, posted in General Discussion)

We are waiting for authorization from my insurance for the USC referral.