pamela

Hi Lynn,

I just wanted to tell you that George is very lucky to have such a caring, sweet wife that will do anything for him. I am sorry he had a rough night and hope after his rest today that he is feeling better. Take care and try to get some rest yourself.

Love, -Pam

This is info about my daughter, Lauren. I asked her the questions and she answered them in her own words.

Age: 26
Gender: Female
Age when diagnosed: 25
Diagnosis and Stage: Advanced Intrahepatic Cholangiocarcinoma
Initial CA19.9: 125
Lymph nodes involved? Questionable. Swollen but did not light up on PET
History of cancer? No
Resectable? No
Had surgery (with details if applicable)? No
Liver transplant? No
Hospital: University of Michigan Comprehensive Cancer Center
Oncologist: Dr. Mark Zalupski
In remission (currently or was)? No
Survived since diagnosis (years/months/weeks): 1 yr. Diagnosed 8/29/2011
Chemo 1: Gem/Cis and 5-FU once every 2 weeks
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: Going up to almost 400
Side effects Chemo 1: Fatigue, body aches, hair loss.
Chemo 2: Gemzar and 5-FU
Length (and/or number of treatments) of chemo 2: 2 months
CA19.9 trend during Chemo 2:
Side effects Chemo 2: Fatigue and body aches, not near as bad as with Cisplatin. Was taken off Cisplatin to avoid kidney damage.
Chemo 3: Xeloda and Oxaliplatin
Length (and/or number of treatments) of chemo 3: 4 months
CA19.9 trend during Chemo 3: Going down to mid 200s.
Side effects Chemo 3: Nausea, red, peeling soles of feet, body aches, fatigue, neuropathy. Had allergic reaction to Oxaliplatin on the 6th infusion. Only on Xeloda right now and will probably switch chemo after scan in Dec.
Advice for chemo: For the day of chemo, bring a lot to do, eat what you want, and be prepared for a long day.
Cyber knife? No
Radiation? No
CA19.9 trend during radiation:
Chemoembolization? No
Radioembolization? Yes, Y-90 Theraspheres in May 2012.
Experimental treatments? No
Any other conventional treatments? No
Alternative treatment? No
Use of supplements? No
Special diet? No
Complications during treatments? Allergic reaction to Oxaliplatin Oct. 2012.
What worked for nausea (best)? Compazine
Biggest regret: Not going to the doctor sooner.
Best advice given to me: From my social worker at U of M. I am allowed and entitled to be angry about being young and having cancer.
Best tip/idea/recommendation: Take Compazine with Xeloda instead of waiting to feel nauseous. Try not to waste your life sleeping in your bed all day. If you can, get out and enjoy your life!
What would you have done differently? When my hair started falling out, I would shave my head now instead of holding on to the sparse amount I had left. Looks terrible in pictures!
Current status: Taking Xeloda and CT scan on Dec. 4, 2012
Comments: I thought I would still be getting lots of attention, visitors, and gifts. Sad to say, most people forgot about me and only care about themselves. I now know I can only count on my family, my boyfriend, and a few close friends. You sure do find out who your true friends are.

Hi Laura,

I am sorry you had to find this site, but also happy you did find us! I have no experience with drains. Sorry. I just wanted to let you know that there are many people here that are eager to help in any way they can. My daughter has CC and is not able to have surgery yet. She does have a liver surgeon that is a member of this site. I can give you his e-mail if you would like to contact him. He may be able to help you or point you in the direction of someone close to you. Wishing you all the best. Please come back and visit often.

-Pam

Hi bluebird,

I hope Jack’s stents help with his bilirubin and he is able to have his radioembolization soon. All the best to both of you. Please let us know how he is doing.

-Pam

Hi notdoneyet,

In my daughter, Lauren’s case, her Oncologist looks more at how she is feeling and what her scans show. CA19-9 is just another tool he uses. Your son feels good and had shrinkage with scans. That is a great thing. I don’t know why your son’s test was so high, but look how much it has come down!! Lauren’s fluctuate up and down. The reason we watch, but don’t worry too much about this test is that it was 126 when she started out over a year ago and it has gone into the 300’s and is now in the 200’s. Her tumors are smaller now. They were the largest when she was first diagnosed. She feels better now and that is what matters most to us. Another friend on this site has CA19-9’s in the 20’s and just had two more tumors discovered. Does that make sense? I think this test is great for one thing, and that is for causing stress and worry! I hope your son continues to feel well and surgery becomes an option.

-Pam

Hi Kristin,

I am really sorry to hear about your Dad. I understand how you are feeling and it is the worst. My 26 year old daughter has this cancer. Our whole family was absolutely devastated when she was diagnosed Aug. 2011. Your life changes in an instant and you want so desperately for it to go back to how it used to be. You kind of walk around in shock and wonder why the rest of the world keeps going on as usual.

I can tell you that once a plan of attack took place and Lauren started chemo, we felt better. We never asked how much time she had left. We don’t know what stage she is because she didn’t want to know. Her oncologist just said she had advanced cancer. Nobody knows for certain how much time a person has left.

I went through a difficult time after Lauren had a scan that wasn’t very good and I went to see my doctor who is wonderful. He put me on antidepressants and I feel so much better. It took awhile to find the right medication for me, but it was worth it. I am not promoting taking medication. I am stating that it helped me.

Lauren became angry after about a year of dealing with all this. She has spoken to a social worker that told her that she was perfectly normal with her feelings. She is doing so much better with just talking to this person. My daughter is so amazing. She has handled all of this with such strength and grace. She never complains and tries to be so independent and strong.

I think it is very important to keep a positive attitude, never give up hope, and live each day to the fullest.

My heart goes out to you and your family. Don’t ever apologize for expressing your feelings. We are all in this together and are here to help. Please keep us updated on your Dad.

Love, -Pam

Hi Kathy,

My daughter has had Gem/Cis and 5-FU with good shrinkage. Her doctor then switched her to just Gemzar and 5-FU. I think she had better shrinkage with the Cisplatin, but it is a rough chemo that is hard to take for long periods of time and can cause kidney problems.. She then had Xeloda and Oxaliplatin, but had an allergic reaction to Oxaliplatin on the 6th infusion. So now she is just on Xeloda. Her Oncologist is thinking of putting her back on Gemzar after her scan. I think any chemo has a better chance of causing tumor shrinkage than no chemo at all. I think a positive attitude helps as well. I am hoping your Dad continues to do well.

-Pam