37 year old male diagnosed with stage 4 CC – welcoming any advice
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Jason,
Gem/Ox will eventually cause neuropathy. Make sure you have warm socks, gloves, possibly a scarf handy. Your onc should tell you this, but… Don’t drink cold beverages until your throat can handle it. For me it was about 4 days. Good thing I don’t mind room temp liquids! And you will possibly have nausea. My second round I felt nauseous. I used the meds to control it but fought it for a couple of days. By the 4th treatment, I just let it go. 4 hours after treatment, I felt so much better after! And didn’t have to fight it for days!
It is much easier on the other organs than cisplatin. Sloan Kettering uses it before cisplatin now.
I also have Dr. Fong at Sloan, and he is wonderful! I wish I had been able to see how well the resection went, but I was inoperable for the first year. Then he thought he could try it… But before my surgery, it spread so surgery was out.
There are a number of clinical trials that you might be able to participate in, too.Jason,
Have you heard of Dr Kato at Ny Presbyterian? He does surgeries that no one else would attempt. I’d contact him for another opinion. Holly22a on this board is seeing him and is very impressed from what I gather. There is also a great onc at NYP named Abby Siegel, who we saw for a second opinion.You are in my prayers…my husband was dx a year ago, and Dr Fong at sloan operated on him. (margins weren’t clean and he had nodal mets–BUT…he’s doing great at the moment, so we’re just enjoying each and every day!!)
Audrey aka betzeegirl
I googled Kato just now and here’s his contact info:
Dr. Tomoaki Kato
622 W 168th St # 105 New York, NY 10032
(212) 305-5101Jason,
I see the real experts have come through as I knew they would, to share their experiences and give you some good advice. The more information you have, the better armed you are to fight.
In the past 5 years I have seen a lot of improvement in both research, knowledge and treatment of this disease.
It sounds like you are moving in the right direction and already have a treatment plan in place. I agree with you and the others that another opinion can’t hurt and if necessary maybe even a few more. Go with your gut. You’ll know when it’s right and you’ll also know when it’s not.
Good luck on your journey. I am hoping things will go well for you. Keep us updated as to how things are progressing. We all care and are here to help you in any way we can.
Love & Hugs,
DarlaJason,
Welcome to the site, but I am so very sorry you had reason to find it. I am a CC survivor of 3.5 years. This site was an incredible support for me and the best advice is to always seek another opinion. It can never hurt. I got 4 opinions at different points in my treatment and I’ve never regretted traveling to get peace of mind.
Please keep us posted on your progress. We do care.
Hugs,
-Randi-And several became operable after being told they were not. Sometimes chemo is why tumors shrank/died enough to allow resection . Sometimes lymph nodes will react to chemo differently than the “main” tumors. Also, there are many mutations of CC, so some get their tumor biopsy samples sent out to find out which mutation it is and this can sometimes be used to eliminate specific chemo agents they know DON’T work on that specific mutation. Ok, too much info overload!
Jason,
Im on here almost daily to get info, support and ideas for my sister (who is too afraid to read these blogs for fear of scary stories). it is reassuring to see many many members managing to live very full, wonderful lives even with this horrible disease. it seems to be episodic for many who view and treat it like a chronic condition and get aggressive when it “acts up” but then have long periods of calm/stability or better! read Tiffany’s story! and Cathy’s! No one tx seems to fit all. It certainly can’t hurt to send all your records to different CC specialists in be US, even while you start chemo. If they decided to do rad or surgery for example, they would have you stop the chemo for a couple weeks till its out of your system and then proceed. That’s what they did w my sister (who also has a young son)…. She did gem/Cis then Y-90 radioembolization and now on Xeloda (a pill form of chemo). She is also stage 4 and was diag almost a year ago. She is doing ok but fatigues easily and had trouble keeping platelet counts at a healthy level while on gem-Cis. Anyway, sounds like you are in good hands but definitely send your complete records off for more opinions!
Sincerely, WillowJASON, 2ND AND 3RD OPINIONS NEVER HURT, we are huge believers in that. Those kind of opinions have changed many Members minds and with very good results. The ONCs do not mind as they are well aware what they are dealing with. I would definately go with at least a 2nd opinion. Also you really need to go to a Hospital that has a ton of experience with CC. I would want another ONC looking at my records and that way I will never look back with any regrets. I will know that I checked it all out, and like my husband would say, “Now we know what’s wrong…let’s fix it!”
This is really incredible to hear your stories and responses. Amazing, I feel a little LESS lonely now. You guys are the best.
Just an update as of today:
I saw Dr. Ahmed Zakari – Medical Director of Gastrointestinal Oncology at Florida Hospital. I felt comfortable with his introduction, he demonstrated his knowledge of Cholangiocarcinoma at great length. From what he can read from the radiology report, he thinks I have hilar cholangiocarcinoma (HCC), also known as a Klatskin tumor. So far radiologist can only found nodules in my stomach lining and the “blockage” in upper common bile duct, no where else (I will get the official results from MD Anderson).
Dr. Zakari is recommending that I go with “gemcitabine and oxaliplatin (GEMOX),” instead of the standard chemo treatment “gemcitabine/cisplatin.” GEMOX will be easier on my kidney since I only have one. I start chemo either next Tuesday or Wednesday.
After reading thru your replies, I think I will continue to see that specialist next Friday for 2nd opinion, it can’t hurt, right?
Jason, sorry u had to find us this way. Everyone here is wonderful. My husband was diagnosed with stage 4 cc in August of 2009. He was a candidate for surgery. He had a recurrence of his cc in June of 2012. He’s still fighting. He too was on the same cocktail of chemo as you. It worked really well. He’s now on xeloda and gemzar. He leads a normal life, works and his normal activities. Some days he’s get tired but he’s a fighter.
We have 2 kids also, a little older than yours but our kids I believe is what keeps him fighting.
Be stronger than the cc. Prayers being sent your way for you and your family.
You found a great place to come for support.Hugs,
MicheleJason,
Sorry you have to be here. It sucks, plain and simple.
I went for a second opinion and stayed with them for 2 years. After 2 years, I started to feel my onc didn’t really care about me… Just statistics, etc. so I went for a 3rd opinion 2 years into this fight. I am now being treated by a new onc, closer to home, and feeling this is where I am supposed to be.
Don’t ever hesitate to get another opinion if you don’t like what you hear, or feel your onc is not listening to you…it’s your life, after all.
Many prayers for you…Hi Jason! I wanted to welcome you to this site and let you know I am very sorry to hear about your diagnosis. My daughter, Lauren, has CC and was diagnosed at the age of 25. She is now 27 and about to go for her 2nd surgery of a two part resection. She was inoperable at the beginning but sometimes thing change. We were lucky to know we were at the right place and had the right doctors. But, if you are not sure of what to do, then definitely go for a 2nd opinion, if for nothing else but peace of mind. It seems almost everyone starts out on Gem/Cis and goes from there. It hurts my heart to see someone new with CC, especially so young and with small children. If you would like to know anything specific about Lauren’s care, feel free to ask. We are an open book. I wish you much success in finding the place that makes you feel comfortable and well taken care of.
Hugs,
-PamJason….Obtaining second or third professional opinions are warranted. Hence, I would contact other centers with a high volume of CC patients. Most likely you will be asked to forward CT, MRI, etc. doctor’s reports, blood test. Gathering this information will take some time therefore; you would want to get on it immediately. From what I have seen, Jason, peritoneal invasion “excludes” resection however; you would want to have this confirmed by another specialist. And, additional treatments may be recommended to you. Please reach out to this great community for help, suggestions and support. We are in this together.
Hugs,
MarionI just want to say hello Jason and welcome to the site although I am sorry that you have been given the news that you have CC.
This site is the most credible one I have come across and the support, advice and information is truly remarkable. There is always someone that can answer a question or say just the right thing to make it all seem just a little more bearable.
There is so much information to take in and emotions to deal with – you are doing so well Jason. Use the board to its full potential and ask away.
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