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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
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!
WillowThanks 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!!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.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
330-903-6868Sandy…..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/viewtopic.php?pid=71928#p71928
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=60712#p60712Hugs,
MarionHi,
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.
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-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,
WillowDear 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.
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.
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