Re: Liver Infusion Pump?

After hearing from Karen, I really want to get this pump working. When I go for chemo again on the 22nd, I will be speaking to my main onc about her timetable. I LIKE the 50% shrinkage in 10 months! That's better than I hoped! And if I can hope for 50% shrinkage, that would make my tumor 3x3 by next spring. That might just make it operable. It gives me better hope than the gemox I'm on, as I don't even know if the tumor is getting the gemox. Since making it a closed circuit for the pump to kill it, I don't know if the tumor is actually getting any of the chemo thru systemic chemo. I need to ask about that, too...
My poor onc is going to be busy answering all kinds of questions next Wed.! I have a long list...

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?

You go girl! Ask away, that is your right and don't feel 'weird' about it. It's the domino effect you know. When you ask we ALL learn! Did you ever in your life see a Site where people would just about give anything to have surgery? Something wrong with this picture. 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?

Update for me: I have 2 more systemic GemOx treatments and then having another CT Scan. I just hope and pray that the CT Scan shows some progress so I can have the surgery to close off the tumor again. I want the kind of success Karen had! My CT Scan is the 27th and I meet with the onc on Aug. 3. Then I find out what's next on the agenda.

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.

29 (edited by Jim Wilde Sun, 10 Jul 2011 17:56:52)

Re: Liver Infusion Pump?

Kris, I'm hoping for a good CT for you later this month.  I know you've been through a lot this year and you really deserve a break.  I'll be thinking of you on the 27th.

Oh, and keep asking questions.  Doctors are especially interested if they think you're bright enough to understand the answers, particularly those in teaching hospitals.  I have learned a lot that way about my cardiac condition, and more recently about cc.  When I was hospitalized for observation several years ago in a cardiac unit, I told my cardiologist that I was visited by a group of med students for about 45 minutes.  When I told my cardiologist about the visit, she said "only 45 minutes?"  I think cc is a bit more challenging.

Good luck!

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?

Kris....everything crossed for a fantastic CT results.  I will be thinking of you on the 27th and can't wait to hear the great report.
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?

Yesterday I went for another try at the embolization to get the arteries closed off and the pump working. Then had another pump study to see how things worked out.
Today I heard from my oncologist. There's still a small "fluttery" leak but she thinks I should try using the pump. We are going to start Monday with a lesser amount of the FUDR into the pump and see how I react to it. I'm hoping I don't have systemic chemo so we can get a good reading on how it affects me. I'm a little concerned, since there is still a slight leak, but trust my oncologist knows what she's doing. And I really want to start using the pump after reading how well it works when it works!
Monday I have another CT scan so we have a baseline to start with in regards to the pump. I can't believe we are finally going to start using it!

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 posted on another topic the latest results, but for anyone who is interested in the pump aspect of my treatment, here's the latest.
On Thurs., Aug. 25 I finally had a mostly successful embolization (3rd try). There is still a small "fluttery" leak but Dr. Kemeny waid it should be okay to try the FUDR. So on Monday the 29th we put FUDR into the pump. FINALLY! It is now Thursday and I have no side effects.
My treatment until now has consisted of systemic chemo. Gemzar/Oxaliplatin every 2 weeks. I almost didn't want to try the pump because of how well the Gem/Ox is working. But since I'm carrying the darned thing around I figured why not try it? The tumor was 5.4x4.3cm in June when I finally started chemo. On July 25 I had a CT scan and the tumor had shrunk to 4.4x3.3cm. Unbelievable, considering it has such a good blood supply! (the tumor has taken out 2 hepatic arteries and is surrounding my vena cava, or at least it WAS). Because of the embolization I only had 1 more chemo during the month of August. I had another CT scan on the 29th and the tumor has shrunk to 4.0x2.4cm. And that's with only 1 more chemo in the interim! And there was no mention of the Lymph node this time. Either it is now unremarkable or the radiologist forgot to mention it.
I am blown away by how much the tumor has shrunk, and not sure if I should have changed my treatment to use the pump, but since I have it implanted, I figured let's try it. And this way I don't have the side effects. Day 4 and I feel good. Even finally rode my motorcycle for the first time this year! I am enjoying not having the neuropathy and nausea that I get from the gemzar/oxaliplatin so hoping that switching to the pump is a good thing tumor-shrinking-wise, 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?

Hey CYCLE KRIS, what good news. You are something else. YIPEE! I am so happy for you, especially with numbers (growth) coming down not going up! Keep up the good work, I am not only happy for you I am extrememly proud of you and your positive attitude. This fighting, positive attitude seems prevelant among girls with the name Kris!

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?

Hi Kris,

This is great news indeed! Thank you so much for sharing it with us all. Tumour shrinkage is soo good to hear! It is great also to hear that you are feeling good and don't have any side effects. I know that you will have enjoyed riding your motorbike, keep on riding it!!

Best wishes,

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: Liver Infusion Pump?

Hello Kris!! Keep your faith high!!!  My mother has had CC for almost five years now, i will give you details of her history tomorrow bc right now i am on my cell and its too long to write, but decided to register just to let you know that see was cared for by dr fong!! Excellent physician, best by far! She has had her infusion pump for since the beging, same story as u, tumor too large to be resected, wrapped aroung veins. The pump decreased her tumor size from about the size of a newborns' head to the size of a large egg, these were Dr Fongs actual words to my family and I!! After he first tried to operate he came out and told us that possible she only had four to six months to live with out the pump, and he put it in and here we are five years later!! So hold on strong, i wish u the best, we go to Sloan Kettering every ither monday for her chemo, shes holding on strong but it is sooo dificult at times but u just have to work urself right back up!! God bless u and good luck with the pump!!

Re: Liver Infusion Pump?

Dear Massiel....thank you ...thank you for popping in on us. What incredible, wonderful news you are sharing with us.  Congratulations on the wonderful results your Mom is having.   We are anxious to hear about anything you can share with us.  A physician from Sloan had informed me that there was an ongoing clinical trial with this pump and that so far things appear to look very promising. Again, thank you for chiming in and please, continue to inform us.
All my best wishes to your Mom for continued success and many thanks in advance for your contribution to this site.
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?

Dear Massiel, welcome to our wonderful family where you will find the most courageous and caring people in the world. I love waking up in the morning to such excellent news and it is so helpful for our members to hear these success stories. I so agree with you that sometimes our strength waivers but it does pop up again after a short break. Looking forward to hearing more about your Mom.

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?

Hi Massiel,

Welcome to the site. And thank you so much for sharing your mum's CC story with us all. That is an incredible and very exciting story that you have to share and I so look forward to hearing more about your mum. And i know that there are so many people here that will also look forward to hearing more from you as well.

My best wishes to you and your mum,

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: Liver Infusion Pump?

dr kris,

my husband had the hepatic arterial infusion pump and he really had no problems with it.   it did eliminate the "satelllite" tumors he had. God bless you. I hope you are doing well..

Re: Liver Infusion Pump?

Dr. Fong called me on Friday and wants to see me in about 4 weeks. I have to schedule a scan thru Dr. Kemeny and then he wants to discuss my options. Surgery, or freezing/burning the tumor. I just hope the news continues to be good and we can move forward.
The timeline when Dr. Fong first discussed the pump with me was about a year. I have only had  1 treatment thru the pump. And 4 months of systemic chemo. So my journey has been relatively short compared to many others. And I know that, but it's still been a long, scary road.
Massiel: I am at Sloan Kettering right now. Maybe one of these weeks we will meet up. I will be back in 4 weeks. I "get" to go to another oncologist about an hour from my home on alternate weeks because we are now using the pump. And NYC takes me over 3 hours commute time to get here.
And carolynle: thank you for the hopeful news. So far, I think chemo has eliminated the cancer in the lymph nodes. I just hope the direct to the tumor makes it disappear completely!
I am getting occasional "twingy" pain at the tumor site, and my one oncologist says it's probably scar tissue since the tumor has shrunk to 1/2 it's mass. I sure hope that's what the pain is from. And if so, I hope the pain continues until the tumor is gone.
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 Maria, I believe as we grow older we get these nodules on our insides! I, my husband, my girlfriend and my daughter who is 49 all have had the stupid nodules.  My daughter was just diagnosed with them on her kidneys as well. No problems. I have had the lung nodules at least 10 yeares but of course they keep checking them yearly just to be careful. Maybe we could call them noduletts as it doesn't sound as ominous!

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....Good luck and fingers are crossed for your visit with Dr. Fong.  You are doing great.
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?

I thought I would jump in here and let you know that I received my liver infusion pump on August 8, 2011 at the Indiana University Simon Cancer Center.  Dr. Michael House was my surgeon.  Everything is going smoothly, and to date, I have received 2 treatments with no side effects.  My oncologist, Dr. Paul Helft is talking about doing a scan in 3 - 4 weeks.  I don't see many on here with the liver infusion pump, but the ones I do read seem to be achieving success!  I am hoping and praying for the same! 

Cindy

44 (edited by marions Wed, 12 Oct 2011 12:14:10)

Re: Liver Infusion Pump?

Cindy...thanks for jumping in. You are right.  Few of our members are treated with the hepatic pump and I would love to know why that is so.
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?

Kris, glad to hear the pump has been effective for you and also for the Gem/Ox working.  Nice to have hope that surgery or other techniques are being discussed also.  Months back that was just a hope.

Wishing you the best.

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?

Cindy: I hope you have good results with the pump, too. It was a long road to get mine working, and I have not had any scans since we got on track.
I will find out on the 26th how much more the tumor has shrunk.
I will be waiting to hear the good news from you! Maybe if we keep getting good news with the pump, it will start being used more frequently.
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?

Kris:  I will be thinking about this Wednesday as you go for your scan!  I am going for a CT scan this Friday the 28th!  I am a nervous wreck and not looking forward to it as I am worried about the possibility of receiving bad news.  Is this normal?  This will be my first scan since receiving the liver infusion pump, and I have had 2 treatments of the FUDR.
Cindy

Re: Liver Infusion Pump?

Kris: Can't wait to hear how much you have shrunk!!! smile:)

Cindy:  Scan result are always "scanxiety" time and it is perfectly normal. We are all proud owners here of new normals! Wishing to hear good news from you as well.

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 and Kris....A physician from Sloan mentioned to have seen some great results with the Hep. pump.  This news should help some with the upcoming scan jitters. Of course you know that many fingers are crossed for both of you.
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?

Thanks everyone!  My husband and I were just talking about this discussion board at dinner tonight, and some of the positive, upbeat posts we have read!