Topic: New to the Site

Hi -
Before even introductions, I must say I am overwhelmed by the amount of knowledge, research, support, love  and passion I have seen on this site for the couple of weeks since I first discovered it.  I realize now how little I know, and how much I still have to question and learn.
I'm Sandy and my partner and the love of my life (25 years and father of our beautiful 23 y/o daughter) was diagnosed in May with CC.  This after a long and painful run around as our primary care physician was convinced this was a parasite - we eventually were laughed out of the office of an Infectious Disease specialist who told us a 9cm tumor on an MRI was clearly not a parasite. A needless battery of tests and then finally the biopsy confirming the CC.  At this point, completely confined to the liver.  Since then we have consulted with several surgeons and oncologists - all said they could not remove the mass because in addition to the large tumor there were also a number of satellite tumors on the other side of the liver.   They recommended systemic chemo - a combination of 2 - all confirming there was no cure and offering slim odds.
Dave is a very fit, strong 61 year old, never sick a day in his life so all this was devastating and hard to process. No jaundice, no weight loss, only some discomfort around the abdominal area where the tumor was pressing.
Then we met Dr. Fong at MSKCC, the most extraordinary man,  who at least gave us hope.  He proposed a combination of surgery and implanting a pump to deliver chemo directly to the liver as our best odds.  Initially he thought he could surgically re-sect the liver but the CatScan taken the day prior to surgery showed for the first time a spot on Dave's lung (endoscopies, colonoscopies, had all been clean).  He felt that with that, the size of the mass and inability to get clean margins, and the extensive spread of the satellite tumors to the other side of the liver, surgery to remove the primary mass was no longer an option.  He would move forward with the surgery to position the pump.
He performed surgery on June 24 - upon going in he discovered some lesions around the liver, halted the surgery and had the lab look at them - they proved to be benign so he moved forward with positioning the pump, and while he was at it, killing off as many of the satellites as he could see.
The recovery has been very very hard.  The hurry up and wait part being the worst, as we were told we would have to wait several weeks before beginning the chemo- all the while knowing the cancers could be growing and spreading with nothing being done to stop them.  We also were told that due to the spot on the lung, we would need to also be doing systemic chemo in addition to the pump to attack the spread.  In addition to discomfort from the surgery, the worst seems to be fevers and constant drenching sweats, inability to sleep,and loss of appetite.
Tomorrow is our first post surgery follow-up with Dr Fong. Immediately after we meet Dr. Kemeny for the first time,the oncologist who will be managing the chemo.  We went in Thursday for another CatScan so I imagine we will also learn the most current status of any other spread.

Re: New to the Site

Dear Sandy, welcome to the BEST little club in the World that no one wants to join. I am so sorry about the findings in Dave but know that you are at one of the top Hospitals for CC at MSKCC and with  one of our favorite Surgeons. If there is anything at all he can do, Dr. Fong will find a way. Please tell the Dr. tomorrow about what has been happening to Dave such as the sweats. As for now the only thing I can really comment on (my Teddy never had chemo), is to try a nutritional drink a couple times a day instead of meals. Let Dave graze on food all day, comfort foods. Teddy loved the vanilla Carnation instant breakfast and I would blend in a banana. I know you cannot even describe the feeling of what has hit you both, but I swear to you that once you get a plan of treatment going your fright will turn to fight. You will be hearing from a lot of our Members as many have also been to MSKCC. Please keep us posted on Dave and use us to rant, ask or advise. Attitude is extremely important on this journey, in fact attitude is everything. Be Strong.

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 the Site

Sandy,
Wow, what a ride you and your partner have been on! This site has been a Godsend to me as I help my sister navigate CC.
You are not alone here and will find lots of information and support here. This disease is tricky and complicated with several types and mutations that respond variably to treatments. Sounds like your partner is in good hands finally, though I know you are holding on and waiting for some good news from tomorrow's scan.
Best to you,
Willow

Willow

Re: New to the Site

Welcome to the site Sandy but I am so sorry that you have a reason to be here.  You and Dave have been through a lot already and I am sure it all seems so overwhelming.  As Lainy already said, you are at one of the best places and with one of our favorite doctors for treating this cancer.  I have not met Dr. Fong personally but through others I've come to have a great respect for both his medical prowess and the connection he appears to make with his patients.

Good luck with your upcoming appointments and please keep us posted.

Best wishes,
-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.

5 (edited by PCL1029 Sun, 14 Jul 2013 10:23:45)

Re: New to the Site

Hi,
Dr. Fong is a good surgeon specialized in larproscopy( robotic liver surgery)) , according to the fellow I talked to who is working with him.
He also one of the most experienced doctor to prescribe the FUDR pump to deliver the 5FU analog drug directly to the cancer site. The only problem is at times, it may leak at the site of incision. So check and clean the site daily.

One question, is it the primary tumor in the lung is different than cholangiocarcinoma , if not why they don't want just use RFA or microwave to burn it off.? Get a 2nd opinion of interventional radiologist and talk about.

So far, what is your husband age. 61 just like me  I am 63? And when is the date you discover you husband have CC. WHen did .Dr Fong start the 5fu pump and for how long now ( June 24till when,till now? But do have any chemotherapy before that?If they change would they aim at the lung CA or still focus on CCA as the primary cancer for treatment. If they use GEM/CIS orGEMOX  OR FOLINOX then mostly is still treating the CCA as the primary.
Get your husband to drink more protein shake, soy milk to increase to protein and therefore the albumin ,so less chance for ascites.
Keep a positive attitude, always seek 2nd or third opinion on surgery after chemotherapy for a there month periodic to see the resection will be ther, also on interventional radiologist( this is the fastest moving field to help us at this point) and chemotherapy, don' t just say yes, ask why. GEM/CIS have kidney side effects ;GEMOXhas neuropathy,other targeted therapy, TARCEVA, Sorafenib have their problem too. As and compare. It is your husband's life , hie is not a guinapig.
My fiend, what I say may not be of any value since I am ,like your husband, is a patient for thesis disease for 52months, and I am no doctor.

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 the Site

Sandy.....welcome to our site.  I hope for our Kris00J to chime in, as she has first-hand experience with the liver pump. In fact, Kris had been treated by Dr. Fong and Dr. Kemeny, but is currently on a Phase I clinical trial.   Here are some of her postings:
http://www.cholangiocarcinoma.org/punbb … 928#p71928
http://www.cholangiocarcinoma.org/punbb … 712#p60712

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 the Site

Sandy,
Welcome to this beautiful family of loving supporters. I have heard great things about Dr. Fong. I am 49 and was diagnosed with ICC in 2010. I have had two liver resections, several different chemos and radiation. My last scan was clean and my tumor markers were normal for the first time. Hope is so important.
If you would like to talk please feel free to call me and ask me anything.
Lisa Craine
330-903-6868

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 the Site

Thanks to all of you who have responded.  I am overwhelmed by the kindness, support and willingness to share your own learnings.  I am humbled by how much you have all been through, the pain and disappointments you have put up with, but most of all the appreciation of the wins, and the fights, and I know there will be many.  We are ready for battle - with a vengeance.
Please forgive me if I use wrong terminology as I am still learning. But please keep the information flowing so I can be as knowledgeable of any/all options as I need to be.
And please keep us in your hearts and prayers.

Re: New to the Site

Hi,

http://www.cholangiocarcinoma.org/punbb … 198#p57198

http://www.cholangiocarcinoma.org/punbb … 365#p47365

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 the Site

Thanks PCL1029 and all who responded with information and links - it was invaluable.

SO - yesterday we had our first surgical post-op follow up with Dr. Fong.  He seemed pleased with how Dave looked but was insistent he load up on the calories - he recommended french fries and virgin Pina Coladas and Dave has been eating like a kid ever since!   He did inform us that the tumor on the right side of the liver had gone from 9cm when he first saw it to 12.2cm and called Dr Kemeny to advise she begin the chemo to the pump ASAP.  So we met with Dr Kemeny - and she administered the first dose to the liver immediately - she will alternate 2 weeks of pump chemo, then 2 weeks saline.  During the saline weeks, she will begin the Systemic chemo to address the nodes and the spot they discovered on the lung.
They prescribed Celebrex and Zantac - even though he spiked his daily 6PM 101.9 fever immediately upon our return from MSKCC, he hasn't had fever since beginning the drugs- today his appetite was back with a vengeance, he was animated, happy, never spike a fever the entire day and had the first really good day he has had in the 2 months since the original diagnosis.
FINALLY - after the "hurry up and wait" we feel like we are doing something to go after the tumors in his liver and prevent additional spread.
I can't tell you how happy we all are and how great it feels to have my husband back at least without the fevers, chills and constant pain. 
I have no idea what comes next but we are out to win it and take no prisoners!!

Re: New to the Site

Sandy,
That's great news..it definitely feels better when a plan of action is in place and your husband feels better simultaneously. Like alainey says "fright turns to fight" once you're in treatment.
Keep up the great attitude!
Willow

Willow

Re: New to the Site

Hi Sandy,

Thanks for the update on how things are going for your husband. Yes that feeling of starting to fight back once treatment has started is a good one is it not! And I hope that the chemo goes well with the best possible results of course. Please keep us updated on everything and know that we are here for you. And, I hope that your husband enjoys taking Dr Fong's advice on loading up with the calories!

Best wishes to you both,

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 the Site

Forgot to say as well, loving hearing that fighting attitude from you as well! Keep that up also as that will certainly help you both throughout!

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 the Site

Sandy....amazing how quickly things changed for the better.  I am thrilled to read your postings.  Wishing for continued success heading your way and for your husband enjoying the return of his appetite.
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 the Site

Dear Sandy, good, good news! Congratulations on your new kid! Love your attitudes and the fight in you. You are now entitled to a pair of Pink Boxing Gloves studded with Diamonds and Hubby gets Black Leather studded with silver. Please keep us posted as we all truly care!

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 the Site

Hi All
Just checking in and thanks as always for the support, the love, caring and fight!
It's been a quiet week - Dave began the pump chemo Monday.  The Celebrex  (not being covered by Insurance still fighting with them but not going down that rathole here) the Oncologist prescribed really seems to have turned him around though the last 2 days he has zero appetite.  I'm sure the constant 100 degree temperature we have been experiencing even during the nights isn't helping.  Dr. Fong's suggestion of virgin Pina Coladas though still seem to be saving the day!!
I do have a question - probably premature as we are just starting our chemo journey- about Clinical trials.  I would like to at least think they are potentially options worth investigating.  I imagine they are specific to the extent of the CC, spread, size etc.  Where would I start if I wanted to research to see if any would apply to us?
Thanks in advance for any advice.  Have a wonderful and an unforgettable weekend!

Re: New to the Site

Hi,

http://www.cholangiocarcinoma.org/clinicaltrials.htm

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 the Site

And this:http://clinicaltrials.gov/ct2/info/understand
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 the Site

Help! 

For me, CC is easier than computers (but just because I'm really lucky).  Any help you can give me would be deeply appreciated with any or all of the following:

1. I am Jeff Gold, CCActive123 and posted something today I can sometimes find.  Where is it and how do I get there?
2. Willow responded to me.  How do I respond to her? 
3. How do I check for responses to my posting so I can be timely? 
4. Is there one place to see my postings and the responses to them?  I am so lost. 

Ilya in Canada helped me a while back.  Sorry to be so stupid; I guess I was cut out for Extreme Luck instead with my CC story. 

Could you reply to my email address below as I'm too daft to find what response you might make?  Arrggh. 

5. Where would I find such a response? 

Jeff Gold
Jeff@JGYoga.com

Re: New to the Site

Jeff....not sure that you will find this however; I will try to e-mail instructions to you within the next few days.  Others may do the same.
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 the Site

Sandy....I also wanted to mention that we have a running feed on clinical trials:
http://www.cholangiocarcinoma.org/clinicaltrials.htm

You need to scroll to the bottom.  Don't hesitate to ask if you have additional questions - we are here to help.
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 the Site

Jeff,

To answer your points.

1) http://www.cholangiocarcinoma.org/punbb … p?id=10338

2) Just log into the site as you do, follow the link and just respond in the text box below Willow's answer to your post.

For 3 and 4 you could follow this link -

http://www.cholangiocarcinoma.org/punbb … er_id=8956

Click on the topic headline under the dates of the posts and answer that way.

5) If this person replied to you via email then that answer will not show up on the site here. Can you check your spelling of Ilya please, I searched for a poster of that name and couldn't find one.

Hope the above is of help to you.

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: New to the Site

Gavin....not sure that Jeff can find your response.  Would you mind e-mailing it to him?
Thanks and 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 the Site

Good point Marion, I never thought of that!! I'll go email Jeff now.

Hugs back at you,

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 the Site

Hi Gavin and Jeff, the person you are looking for is Ilias.

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.