Topic: New to this site

I am new here. This site and all the support and information it offers is fantastic. My mom was just diagnosed in Dec. 2013 with ICC after many tests. She has a large (10cm) mass in her left lobe and two microscopic, as her onc described them, tumors clustered around the larger one. She is being treated at Sloan K by Dr. Lowery (oncologist) and Dr. Jarnigin (surgeon) as part of a clinical trial. They are confident that all can be "easily removed" in time but have opted for neoadjuvant chemo first. Her regimen consists of bi-weekly Gem/Ox cocktails and continuous use of an HAI pump that was implanted a few days before Christmas. She had another MRI last Friday and we should get the results tomorrow to see if there has been any response yet. Her exploratory surgery at time of pump placement confirmed no vascular/lymph invasion and no mets, but the recurrence rates terrify me. I'm curious if anyone else has had luck with an HAI pump for this kind of cancer?

2 (edited by PCL1029 Tue, 11 Feb 2014 14:39:35)

Re: New to this site

Hi, Julie,
As you have already known, HAI pump is a clinical trial for ICCA patients ;it is a method that can directly deliver high dose  of chemotherapy agent at the site of tumor. Less  side effects of chemotherapy agents has been observed in colon cancer study as compare to traditional  intravenous method .

However, you are absolutely correct that recurrence rate for ICCA is>75% even after  liver surgery with R0 (clean margin). that is why we call ICCA as a chronic disease. I am a patient of ICCA for 58 months with 3 resections and 3 RFA (ablation); It is tough,but if you keep learning and watch your mom closely. you will enjoy lots of Christmas to gether in the years to come.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to this site

Thank you for those kind words! Three resections in 5 years is certainly tough. What was your situation like when you were first diagnosed, if you don't mind me asking?

Re: New to this site

Julie....I would like to welcome you to our site as well and would like to point out that we have several postings on the HIA pump.  Thought to include a link:

http://www.cholangiocarcinoma.org/punbb … =577452402

Please know that you can always click on the "poster's" name in order to retrieve his/her additional postings on this site.

Most likely those with personal "liver pump" experience will come forward and share thoughts with you as well.

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: New to this site

Hello Julie -
Welcome to the best family no one really wants to be a part of. We are great resource and a great place to vent, talk or just research information. Sounds like you have a great team working with you.
I don't know anything about the HAI pump. We thankfully haven't had to go that route. However my husband had his resection in June 2013 followed by 6 months of Gem/Ox as adjuvant chemo post-surgery. He tolerated it fairly well as I hope your mother is. The only problem he had was the cold intolerance and a couple of reactions to the Ox towards the end. We are now working toward IMRT sometime in the near future.
Hope everything goes well for both of you and don't forget we are a great resource.

Good Luck,
KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New to this site

Julie,
Welcome to this wonderful group. I also consider ICC a chronic illness as I was diagnosed in 2010 and have had 2 liver resections. Sounds like you have a good medical team and plan.
Peace
Lisa

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

7 (edited by PCL1029 Tue, 11 Feb 2014 19:51:05)

Re: New to this site

Hi,  Julie,

Please check the link below for my medical history.

http://www.cholangiocarcinoma.org/punbb … 800#p76800


God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to this site

Hi Julie,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your mum. But I am glad that you've joined us all here as you are in the best place for support and help and I know that you'll get loads of both from everyone here.

From what you say it sounds like you have a great team with your mum and I know that she will be in good hands at SK. No personal experiences with the HAI pump but this link has a bit of info on it for you.

http://www.mskcc.org/cancer-care/adult/ … /treatment

I hope that your mums treatment goes well with the best possible results and I also hope that she has her surgery in time as well. Please let us know how everything goes for your mum and know that we are all here for you.

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: New to this site

Hi Julie,

Welcome to this site, but also so sorry you had to. When I hear pump, I think of our moderator, Kris J. I know she has a pump implanted and can tell you all about it when she returns from her vacation. I wish you and your Mom all the best.

Hugs,
-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: New to this site

Hi Julie,

Thought I'd add my welcome to the others and sorry you had reason to find us.  Sorry about your Mom, but it sounds like you have a plan in place, which is always comforting.

Take care,
-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: New to this site

Thank you everyone! Good news today, after one round of chemo the tumor shrunk by 1cm.

Re: New to this site

Dr. Jarnagin did my resection in 2011, he is good, all business, but good. great team around him as well, Kathy is also great. let me know if you have any questions. i have to go to Sloan this Monday and will be an inpatient for 3-4 days. if you are there, stop by to say hi!!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: New to this site

Thanks Derin! We were just in NYC today getting treatment. Next week is an off week. Best of luck with your procedure!

Julie

Re: New to this site

hello, I am so appreciative of this site.  At 73 yrs old,  18 mos. ago, one day I was merrily going my way and about the next, I was in surgery.  I had 1/3 of liver removed.  I am thankful it was caught early enough to be able to enjoy life - differently.   All drs., family, most of all me, decided it was best not to try any type of treatment.  So far, it has been fairly easy but in the last month or too I noticed I am very, very fatigued.   What is most frustrating is my lab work if "perfect"..  I just dont understand this - I can hardly do anything for more than 5 mins. before resting about 20 mins.    I live alone but have my son and his family nearby.       thanks for any help.

Re: New to this site

Sally, my Teddy's LABS were good but his ONC put him on Vitamin B12 injections once a month. They really made a difference. You and I are about the same age. Hope you find something to help you have more energy.

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: New to this site

Hi everyone, looking for some input...the results of my mom's first MRI after one round of pump chemo show mixed results. The huge tumor shrunk by more than 10%! BUT she now has multiple small satellites that were not there last time. I'm freaking out now and don't know what to think?!

Re: New to this site

Julie...the physicians will be ready to answer your question.  Based on what we have seen on this site, systemic chemotherapy may be switched to a different agent(s.) or administration of current GEM/OX may be considered for another cycle and your Mom will be rescanned thereafter.  Julie, had radiation treatments been ruled out?
Hang in there, you are on the famous cc roller coaster ride.  Please keep us informed.
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: New to this site

Sally....I too would like to welcome you to our site.  Sally, who is your current physician?  I would make an appointment with the surgeon, as he/she may want to order a scan.  Please do not ignore the feeling of tiredness; you need answers and those can only be provided by the physician.
Please keep us posted.
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: New to this site

Thanks Marion. I will definitely ask next week about radiation. For some reason they felt the HAI pump was the best way to get started due to the size of the primary. Her onc did not mention switching drugs yet after reviewing the MRI. I don't know why but they are thinking these smaller lesions may have been there all along and gone undetected in previous scans, and are calling them "stable" so far. They are also waiting for results of the test that will show what chemo drugs work best based on her biopsy...not sure what that test is called.

Re: New to this site

Hi Julie I too wanted to extend a warm hello and welcome you to the site.  I don't have any info regarding the pump either and my experience is only with the chemo regimen gem/cis.  I have heard other stories similar in finding satellite lesions that were not shown on previous scans and then did appear.  I noticed in your first post it looked like docs felt she could be a candidate for surgery in the future and I wish you all the best on the CC journey and that her current treatments continue to shrink those suckers!
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: New to this site

Thanks Porter! I certainly hope so! She is also getting gem/ox combo and having a tough time with side effects even though we were told there would not be many. Did you have any issues with the gem/cis?

Re: New to this site

Hi Julie, I fortunately did not have many issues with the chemo.  I started last August.  I would say around starting mid November it did seem to appear that I would not bounce back as quick after chemo and i was taking more days to rest as my biggest issue was fatigue.  Around this same time I started to play the number game and occasionally my counts would be too low for treatment.  Other than that I tolerated it pretty well.  Good luck.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: New to this site

Julie....most likely the genetic test will provide answers to possible mutations which then may respond to targeted agents.
It is likely that the "newly" appeared nodules avoided detection due to the 1cm plate thickness of the scan itself. It is for that reason that the true extent of the disease becomes visible only to the surgeon during the operation.  And, it is for that very same reason that many surgeries are aborted. 
Tons of good wishes are heading your way.
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