pattimelt
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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!Just got a call that I was denied the authorization to see Dr. Selby at USC.
They are referring me to a Dr. Charles Chandler at UCLA. Has anyone seen him?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.
Thanks everyone! For those who asked I 1st had 2 radioembolization treatments. No shrinkage from them. Then went to Gem/Cis which did not shrink it plus made my bloodcount go way down. Then tried Oxaliplatin/Xeloda. No shrinkage & horrible side effects with sores all over my legs. The next chemo would be Oxaliplatin/folfox. We will see how my blood is in a month before considering going back on another chemo. I feel very vulnerable of course being off chemo but am trying some alternatives in the meantime. Hopefully the referral to see the USC doctor will be authorized. The other dilemma we have is finances. We just simply don’t have money for out of pocket expenses. It would cost us 4 – 6 thousand to have more testing done for trials. Woe is me!
Surfer1, I was referred to see Dr. Imagawa at UCI but he said my cc is inoperable & I then saw Dr. Kuo the radiation oncologist & had 2 SIRT radiation treatments. I then had 2 rounds of Gem/Cis chemotherapy & then 2 rounds of Oxilaplatin/xeloda chemo rounds. Seems like I am on 2 of everything. Unfortunately none of then have shrunk my tumor. Now I will be having another MRI to see if the last chemo did anythings. I also saw Dr. Serry at UCI who tried to get me into a trial but I did not qualify for that. I have great respect for all the doctors I have seen at UCI but so far not much good news for me. I feel good right now. I have had no symptoms of cc so far! No jaundice, itching or grey bowels!
I hope you will be able to have surgery which is the best way to go.My ‘living’ list is very short. Be with family & friends as much as possible. Enjoy the simple things in life. Share the love of God with everyone. I had lots of ‘dreams’ on a bucket list but financially they aren’t possible. I also spend time looking at old pictures & reading old letters & writing poems. I cherish the memories!
I was in the hospital with diverticulitis and they saw a ‘shadow’ on my liver when they did the CT scan. When I got out of hospital my gastroentologist sent me for another scan which showed the tumor. then had the biopsy which diagnosed me with CC. I am stage IV. Never have had any symptoms! No jaundice or gray bowels. I had a PET scan and their is not cancer anywhere else. I haven’t had to have stents. I never wanted chemo but went ahead & did it because I seemed to have no other choice if I wanted my tumor to shrink. The gem/cis was not too bad. I was tired & nauseated but the anti nausea drugs helped that. But this last chemo combo Oxaliplatin/xeloda was awful. I don’t want to go back on it. I am a strong believer in God & feel like He will give me peace about what to do next. Right now I am glad to be on a little chemo vacation!
I saw Noreen Fraser on the Huckabee show tonight talking about a CDK inhibitor that has shrunk her tumor. She said it has not had any side effects! It isn’t chemo. Her story is pretty exciting. noreenfraserfoundation.org
Ladylinden, it seems like everyone on here reacts differently to treatments. My CC was found by accident a year ago. I have never had any symptoms from it. I felt fine until I started treatment. 1st I had radioembolization twice. Them did gem/cis for 2 rounds. These did not shrink the tumor so started oxaliplatin/xeloda for 2 rounds. I have been really sick on this. Now we are waiting for my next MRI to see if it had any affects on the tumor. I still have no symptoms from the cancer. My oncologist said she may put me on ‘chemo vacation’ and keep a close eye on the tumor. My oncologist said it isn’t fast growing. I have to decide at some point what will be best for me.
Good news! My CT scan came back normal. No blood clotting or anything on my lungs. Still coughing though!! Might be acid reflux cough. I won’t be back on chemo for a couple weeks. My oncologist wants to do an MRI to see if the oxaliplatin/xeloda has worked on the tumor. I am happy to get a chemo break. These 2 rounds have been pretty bad. I had terrible nausea & the rash all over my legs & arms plus the burning & throbbing on the bottoms of my feet. And fatigue that isn’t relieved by taking a nap. So I will still keep swimming!
My dear friend & I always tell each other to Just Keep Swimming & I wrote this poem last week. Thought I would post it here for you Cathy and everyone else who needs to JKS!
JUST KEEP SWIMMING
Jesus is my floatation device
When I face the deep blue sea
It looks so deep, dark & wide
He says, ‘just keep swimming’ with Me.When I’m on the sea with my floaties on
I am safe and secure in His arms
I could float on the sea forever
I can ‘just keep swimming’ with no alarms.Sometimes I think I can take them off
I will try to make it on my own
All of a sudden I feel like I’m sinking
I can’t ‘just keep swimming’ alone.It seems like I would know by now
How easy it would be to go down
Just because of my stubborn pride
I want to ‘just keep swimming’ around.The good news is I can just reach out
And put them right back on
They are always right by my side
I can ‘just keep swimming’ til dawn.You may ask why I need this ‘crutch’
Why do I have this shortcoming?
Didn’t Dorie stay with Nemo?
Telling him to ‘just keep swimming‘There will be storms ahead
The waves will carry me
But if I keep my floaties on
I can ‘just keep swimming’ with glee!So I will keep my floaties on
My Jesus will swim with me
He gives me peace in the deep
I will ‘just keep swimming’ on this sea.Pat Morse
9/25/2013WE only have a supplemental medicare HMO. With our financial setbacks even before I was diagnosed we ‘bottom line’ don’t have anything in retirement or emergency funds of any kind. Very scary. We have to take each day as it comes. I am getting disability insurance which has helped pay the big co-pay for the xeloda.
