Topic: next CT scan on Wed.

Hi all:
It's been a while since I posted about my journey. I have a CT scan on Wed. to see how the Xeloda is working on the tumor. I think I'm more scanxious about this one, because Xeloda is not approved for CC treatments and nobody really knows how well it will work.
I just need it to have worked a little bit to shrink the rumor enough that I can schedule the resection AGAIN! And this time I BETTER not get sick! And I'm calling my surgeon tomorrow to let him know I'm having the scan, in case Dr. Kemeny forgets to pass along the information! smile  They supposedly meet on Thursdays, so I'm looking forward to them talking and getting back to me with the decision they make. (I bet I hear from Dr. Fong first!!!)
My troll has been busy showing up in my dreams and munching, so I'm taking that as a good sign.
The middle of June will be the earliest I can schedule for, since chemo has to be done 3 weeks prior to the resection. And that puts me at my birthday. Now, do I push it off until after my birthday or do I spend my birthday either on the table or in the hospital room?? I know it's a silly thing to think of, but... what I really want is to have a chocolate martini for my birthday!!! Maybe I can have just one..... smile

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: next CT scan on Wed.

Kris,

I am hoping and praying so much you will be able to have your resection as soon as possible.  I also hope the Xeloda has worked.  I think you deserve a chocolate martini whenever your heart desires!! Take care my friend.

Love you,

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: next CT scan on Wed.

Kris, I am  wishing for all the best and all the way you want it. Guess I would opt for a chocolate Martini on your Birthday but make it a "virgin" chocolate Martini. I know, not much fun.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: next CT scan on Wed.

Kris,
I am praying for you, and I can't wait to hear the reschedule date. I am excited for you. Noticed your are in PA.  I know you probably posted where you are being treated already. I am new to the site. Can you share with me please and also what Chemo you were on.

Friday my husband and I are going to Dana Farber in Boston and Tuesday we are going to see what John Hopkins has to say as well.  We are believing God for a creative miracle.

Praying for you and the rest of my CC family.

EDH

With God all things are possible. Believe!

Re: next CT scan on Wed.

Hi Kris,

Thanks for letting us know about your scans and tons of positive thoughts are coming your way from over here! Everything will be crossed for you, fingers, toes and eyes too! And a chocolate martini, never heard of that before but it's got chocolate in it so it must be good!!!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: next CT scan on Wed.

EDH: Why aren't you going to Sloan Kettering or NY Pres.?? They are both in Manhattan and are among the best for cc.
My surgeon is Dr. Fong and my onc is Dr. Kemeny at Sloan Kettering.
There are others on this site that sing Dr. Kato's praises from NY Pres.


As far as chemos go, we all react differently unfortunately. Some of us get great results fro certain chemo, and others have no reaction. And vice versa.

I started on Gemzar and Oxaliplatin. I could only handle oxy for about 5 cycles. June thru Oct. I can't quite remember how many. Immediate side effects were extreme nausea which I let take hold. After about an hour I was fine. If I fought it I felt like I wanted to get sick for 3 days. The long lasting side effect for me was neuropathy which still hasn't gone away completely.
I have a liver infusion pump as I only have 1 tumor (hopefully that is still the case: last scan had a question). So we used the pump finally for 3 rounds of FUDR which is nasty stuff. But going directly thru to the tumor I didn't feel the effects. My liver did tho and I had some problems after 3 rounds.
So after a bunch of rounds of Gemzar, 4 or 5 rounds of oxy, and 3 rounds of FUDR my tumor had shrunk wonderfully and we were going to resect. I had an embolization to "grow" the right side of the liver by blocking off the left side and ended up with pneumonia. Resection cancelled. Tumor liked whatever happened, and ended up too large for resection again. Plus scan showed lymph node involvement and a questionable area. So back on chemo. This time Gemzar and Xeloda. I'm on my 4th cycle of Xeloda. Biggest side effect is burning hands and feet. No blisters, so I'll bear with it.
This scan will hopefully show smaller tumor so we can resect. Dr. Fong will take 2/3 of the liver and the lymph nodes out and will do oblation on cells around my vena cava that he can't remove. Hopefully he gets it all and I can get on with getting on.

Sorry for the long summary for those of you who know it.

But EDH: Please think about closer to home. Both MSK and NYP are teaching/research hospitals with good cc docs. And it has to be easier to get there than Boston! Have you checked with them yet? Dr. Fong has office hours on Mondays. I love him. There are so many good surgeons at MSK that I would feel comfortable with any of them. And they do research. I have already signed all the papers for my cells to be used for research after pathalogy is thru with them. Anything to help find a cure!!!!!

And Gavin: It's chocolate flavored vodka, so I really can't have one. Maybe at Christmas if my resection is soon??? Maybe they'll let me have JUST ONE drink??? smile   Or maybe if I'm not on chemo I won't even tell them! Ssshhhhhh!!!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: next CT scan on Wed.

Kris thanks
Would love to talk off line. Is that possible?

With God all things are possible. Believe!

Re: next CT scan on Wed.

Hi Kris,

Chocolate vodka, ooooohhhh....... I seem to remember having a few of them many many years ago when flavoured vodka's became all popular!!! Indeed, even some of the bars here introduced flavoured vodka stands inside of their bars and clubs! If you have one at Christmas then your secret is safe with me!!!

Hugs,

Gavin

PS - How about some chocolate milk, ice cream and crushed ice? Shaken and not stirred as 007 would say! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: next CT scan on Wed.

We have seen two Doctors there, an oncologist who says we should hold the course of treatment that my husband is on and a surgeon who say my husband is not a candidate because he has a very large mass on the right liver and two small ones on the left. His condition is stable on cisplatium/Gemzarand. We want to improve.  We have asked about a transplant and have been told they are few and that my husband probably would not qualify. 

We are at a loss for what to do next hence our out reach to Dana and John Hopkins    We also met with a local interventional radiologist who did a map procedure for Y90. My husbands shunts are too long 21. Standard is 20.  He recommended bland embolization, but my husband got so sick from the mapping because the Dr. Had to seal off an artery to the stomach. And that caused my husband tremendous pain and a 3 day hospital stay.

I just don't know what to do next. We would like to work with someone who specializes in CC oncology. I don't know if I will be successful I. Getting my husband to return to MMSK.  He was a bit put off. 

We need a creative miracle.  Thanks for listening.
If anyone has suggestions, we are open.

With God all things are possible. Believe!

Re: next CT scan on Wed.

I'll send you a private email if I can. If not, my email is kjacobson8@yahoo.com.
My suggestion would be to send your disks to Dr. Kato at NY Presbyterian. He is a miracle worker. He does ex vivo procedures. He literally puts his patients on life support and takes the liver out and cuts and pastes it back together before putting it back in.
Jim Wilde and Kim Cirucci have both been to him.
I know a number of others have contacted him.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: next CT scan on Wed.

Okay, CT scan is done. Now for the hard part. Waiting!
If I don't hear from Dr. Kemeny by noon tomorrow I am going to call her office to see what the story is. Supposedly the oncs and the surgeons meet on Thursdays but Dr. Fong and Dr. Kemeny never seem to talk about me unless I remind them to.
I called Dr. Fong's office on Monday to let him know I was having the CT scan. Fingers crossed and prayers going up that he calls with a smile in his voice! I want to hear the word "shrinkage"!! And "resection"!! Both with no negative words in the same sentence!
You know how much I want to post in the Good News section. Hope you see me there tomorrow.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: next CT scan on Wed.

Kris, I am crossing everything I own tonight for you to hear shrinkage/resection!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: next CT scan on Wed.

Kris,

Here's sending all of the good thoughts and prayers I have and hoping you scan results are all you hope!

Hugs
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: next CT scan on Wed.

Praying for the Good News section to have a post from kris00j tomorrow!!

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: next CT scan on Wed.

Kris! I'm hoping you hear the word "resection" from Dr. Fong too! We saw him this past Monday. We really love him. He was very encouraging. I went ahead and hooked us up with hepatobiliary oncologist Dr. Abou Alfa, and Fong seeming to be happy about that. Also, at the recommendation of Percy Leung (moderator on this board), I suggested that we get a radiation oncologist as well and he recommended Kathryn Goodman. I was sort of surprised that *I* had to be proactive with all this, but I've learned that's what needs to be done! (I'm empathizing with your needing to remind your Drs to chat with each other!)

Re: next CT scan on Wed.

Be proactive! You have to be! Even the best doctors drop the ball on some patients.
I don't know Dr. Alfa. But I've heard of Katheryn Goodman. I don't know why since radiation is not an option for me. Is Dr. Alfa at MSKCC? If so, maybe we'll be there at the same time. My next appt. on the 5th floor is next Wed. I want to switch back to Mondays ASAP tho, because it's easier if I have to meet with Dr. Fong also. Then I only make 1 trip.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: next CT scan on Wed.

Kris and betzeegirl... Dr. Abou-Alfa has vast experience with bile duct cancer.  You may read up:
http://www.mskcc.org/cancer-care/interv … -abou-alfa

Additionally, you may look at a presentation by Dr. Abou-Alfa on our site: 
http://www.cholangiocarcinoma.org/media.htm

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: next CT scan on Wed.

Praying for good news Kris.  I will be checking the "Good News" section for your good news!

Cindy

Re: next CT scan on Wed.

Nothing for the good news section yet. All I know is there is "nothing emergent" in the scan and Dr. Kemeny does not discuss scans over the phone. I reiterated with the nurse that I want her to talk to Dr. Fong so I know how they both feel about the scan. I guess I get to wait until Wednesday...UGH!!!!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.