Re: Liver Infusion Pump?

Cindy: As Lainy said, anxiety is a part of our lives. I KNOW my tumor has shrunk, but that doesn't help the anxiety level as I sit here and wait for my scan. Because I don't know how much more it's shrunk yet... And I've been a wreck this week as I think about meeting with my surgeon on Monday. The not knowing what is going to happen is very stressful, and my backache is through the roof the past few days, probably in part because of the stress (I'm sure mostly because of the chemo). I can't wait to get thru Monday and know what the next step in my fight is going to be.
Even though I stress about this, I try to stay positive. I was told to use visualization by a friend of mine. So I have this happy craggy old troll that picks off pieces of my tumor and eats it. BTW, he showed up: I was trying to do pacman. The first time, he stopped eating. He was happy, but full. And my scan showed the tumor had shrunk. He came back a few times to eat and always stopped with some tumor left. The next scan showed the tumor had shrunk more. The other day he ran out of stuff to eat. I'm PRAYING that means the tumor is gone. Think positive!! If you think negative you get negative.
So from now until Friday here's your homework: picture your tumor in a white light, or pray, or visualize the tumor shrinking however you want. But think positive! You can stress, but don't let bad thoughts stay in your mind. Push them out with the good news you've read on this site.
Once you get good news it gets easier. I had a rough time trying to stay positive from April until July when nothing seemed to go right. But I kept trying to stay positive. And when things finally turned around, it was easier!
I will keep you in my prayers that your scan on Friday goes great and you are one of the ones that has unbelievably good results with the pump!
Kris

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: Liver Infusion Pump?

Thanks Kris!  I have always thought of Pacman eating the tumors too!  Chomp, chomp, chomp . . . . .  As of this moment, my CT scan scheduled for Friday afternoon might have to be rescheduled.  My insurance requires precertification for all scans.  I have checked twice, and no one from the oncologist's office has phoned for the precertification.  I am trying my best to keep on top of the situation, but for some reason, no one seems to be picking up the phone to follow-up on it, but me.  Needless to say, I am not very happy at the moment.  Will you get the results of your scan on Monday?

Re: Liver Infusion Pump?

Yes, I'll be meeting with my onc first and then the surgeon. I'm sure both will tell me something about the scan. But the surgeon will be pretty thorough. I like him: he spends as much time as I need with me. Good luck with the docs office and precerts. I had trouble with it at first, too...

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: Liver Infusion Pump?

Kris, good luck with the upcoming meetings.  This cc crap ain't for sissies!  I'm really excited about the effectiveness of the infusion pump in reducing lesion size.  I'm hoping surgery is in your short term future.  If you wouldn't mind, I may want to email you soon to discuss the infusion therapy.  I have a friend who may need to borrow your craggy old troll!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Liver Infusion Pump?

Dear Kris and Cindy,

I will be keeping you both in my prayers and I hope that your scans will be good ones.  Stay strong and positive and know that many good wishes are coming your way.  PeggyP

Re: Liver Infusion Pump?

Jim: Be my guest, but until I know further, your friend can't borrow my troll. They will have to get their own!! I am actually sitting waiting to see the onc and then the surgeon and hopefully I hear the words I've been hoping and dreading to hear... surgery... I may have other options and I hope to post later today in the good news section! Really stressing right now...
Kris

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: Liver Infusion Pump?

Here's the update from the onc and surgeon: the tumor is slightly larger... less than .5cm. AND IT'S DYING. The CT scan showed much of the mass didn't take the contrast material well, which means it's DYING!!! Maybe I need to sic my troll on it to just attack it with the hammer!
Unfortunately my liver enzymes are up so we have to rest the pump. But with everything that's been going on the past few weeks I'm not surprised they are up. I've been taking oxycodone and tylenol for the severe back aches. Which, it turns out, are from arthritis and a slightly herniated disk. I'll take it over spreading any day!
The surgeon says everything looks good but the tumor is still wrapped too much around the vena cava for surgery yet. We will meet again in Jan.

Cindy: I hope you got your scan on Friday and have good news this week!

Kris

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: Liver Infusion Pump?

Again a big YIPPEE for you, Kris. I posted on your other post today so will leave this space for others! smile:)

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: Liver Infusion Pump?

Kris, maybe your troll has a brother or a cousin?  He's sounds like the kind of mean SOB cancer needs as an opponent.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Liver Infusion Pump?

Hey Kris!  Glad to finally hear from you.   Congratulations on the news that the tumor is dying!  I did not have the scan last Friday, I cancelled it at the last minute.  The Dr. had ordered a scan of the chest, abdomen and pelvic area.  My insurance would not "okay" the chest scan.  I couldn't get a hold of anyone at my Dr's office to see if the abdomen & pelvic scan would give him what him needed.  So, to play it safe, I had it cancelled.  My Dr. will have to appeal to the insurance co. for the chest scan.  I have my FUDR scheduled for this Friday morning, so I'm sure this will be discussed.  Keep fighting Kris, and give your troll that hammer!

Re: Liver Infusion Pump?

I'm sorry to hear your insurance is being troublesome. I have Aetna, and although I never thought I'd say this, they have been pretty great. I still have lots of medical bills to pay, but I have an advocate at Aetna who calls me and keeps abreast of what I'm going thru. I don't even check ahead of time for scans, etc. anymore. But they are covered, so I'm not going to complain.
I hope your insurance co. eases up on the necessary evils you have to go thru on this journey. Keep hammering away and hopefully you'll get it cleared up with them... you need these tests to see how things are progressing. Tell them it's much cheaper than hospital stays! Maybe that will work.
Kris

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: Liver Infusion Pump?

I did have my CT scan today and then had a follow-up with my oncologist.  Unfortunately, I did not receive the news that I had hoped to hear.  There is no change in the tumors, plus he saw some new growth.  But, we are not giving up, and we have come up with yet a new plan of attack.  According to my son, "third time is a charm".  We are going to continue with the FUDR, plus I will receive a Xeloda pill and Irinotecan through my chest port.  We will start this new regimine when I go back in 2 weeks.  So, this will give my oncologist time to start fighting with the insurance company for aproval.  Meanwhile, I will continue to fight even harder!

Cindy

Re: Liver Infusion Pump?

Cindy, we won't dwell on negative and intead say great! We have a new plan. As long as there are plans there  is lots of hope. And your son is right, 3rd time is a charm, he also sounds like a charm! You know you will have your cheer leading section here already cheering for you! Sending you my best.

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: Liver Infusion Pump?

Cindy: It took the third time for lots of stuff to finally go right for me, so I agree: THIRD TIME IS A CHARM!! I wish you all the best with the new regimen.
Kris

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: Liver Infusion Pump?

Cindi...no growth in existing tumor is great.  The new, little tumors will receive a blasting with the upcoming treatment. And, you are all charged for the third round.
All my best wishes,
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: Liver Infusion Pump?

Thank you so much everyone!  I am so glad we have each other to "talk" to!  I feel so much better already!

Re: Liver Infusion Pump?

Here's a new 3/4 update on my journey. Monday I had chemo (Gemzar only). I spent Tues., Wed., and Thurs. fighting a lowgrade fever. Gemzar usually doesn't get me that quickly, but I wasn't concerned. Thurs. I started feeling lousy, like I just wasnt with it. Around 3am I took my temp again and it was 102.9, but I wasn't moving (I didn't feel capable of driving if I needed to). So I took some Tylenol and went back to sleep, hoping the fever would break. Of course, it didn't. Friday I called Dr. Kemeny and her office said to get to my "local" oncologist for blood work. My local onc is still an hour away. I called them and jumped in the car, where my fever was now 103.8 at Princeton. They did the cultures and sent me to the hospital. So now I'm alone, in a hospital an hour away from my home and don't even have my phone charger! UGH!
Did I mention scared?
Here's the update so far. I have pneumonia with no symptoms.
I also have an infection. They say it's presumably around the pump site. All I know is that the one doc here says if the pump is infected it will be useless.... for those who have been following my journey you know I've had a surgery and 3 embolizations to get the pump to work and now I'm afraid it's gonna be bad news again!
The hopeful news is there is no fluid found around the pump. So why does it hurt? Has anyone who has this had pain in particular places? Like maybe where  it's stitched into the abdomen??? That's what I'm hoping for.  (Oh, by the way, the pneumonia is directly above the pump.)
Then I can worry about where the infection is.
This is so frustrating.
Kris

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: Liver Infusion Pump?

Dear Kris,

I am sorry to say I am pretty new to all this stuff so I can't answer your questions. I'm sure one of the more experienced members will have some answers for you soon. I wanted to let you know that you are never alone. We are all here for you. I am so sorry you had to drive yourself to the doctor.
I will pray that everything works out for you. I feel a little helpless, but I am offering support and letting you know I care. Take care and good luck.

Love, -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: Liver Infusion Pump?

Oh Kris

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: Liver Infusion Pump?

KRIS! &*%$##@*^&&%%$$#@@@@!!!!!!!!!!!!!!!!!!  Ok, I got that off my chest. I am still back at the fact you drove!! When Teddy hit 102 or 103 he could hardly stand up! Gee wiz, Kid, enough already. I am hoping and wishing for everything to be an easy 'clear up'. If you can't use the phone just keep posting us and that will keep you busy. Crossing everything I own for a great outcome!

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: Liver Infusion Pump?

What I forgot to say is a friend of mine stopped at my house so as of today I am cell phone and computer happy. I didn't even have my trusty laptop. Or my calendar. Or my hair brush, or..... Now I have lots of stuff.
Lainy I know I shouldn't have driven but they gave me an hour to get an hour away on a Friday morning. I don't know anyone who is available at the snap of a finger that is within 5 minutes of my house.
Slap accepted. I love my Princeton onc but I think after this I am going to have to look for one much closer. One that is willing to learn what to do with the pump, provided is is still usable.

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: Liver Infusion Pump?

Hi Kris!  I have been thinking about you and wondering how you have been doing.  I am so sorry to hear this, and wish there was something I could do for you.  My pump has not caused me any pain or discomfort.  Is this Oncologist going to contact your other oncologist and/or surgeon for a consultation on this?  Every night I say prayer for everyone that has CC.  Tonight I will say an extra prayer for you!
Sending you sunny thoughts from Indiana!

Cindy

Re: Liver Infusion Pump?

OMGOSH. KRIS, &*%$##@*^&&%%$$#@@@@!!!!!!!!!!!!!!!!!!  That was not a slap, I was swearing because of what happened to you. I do think though that your idea is great to look for someone closer. Someone who would talk with the Princeton ONC. Hoep you are feeling better already!

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: Liver Infusion Pump?

Just checking in to see if Kris had any update to share with us.

Cindy

Re: Liver Infusion Pump?

Hello Kris, sorry to hear of all your troubles  . You sound like a battler, God bless you   Do you live near Phila ?