Topic: Recently Diagnosed

Hello fellow fighters!
I'm a 45 year old husband and father of 4 (ages 14-9; Fantastic4) and was diagnosed with Stage IV CC this past May. I have mets to liver, gallbladder, and both lungs which also means I'm not a candidate for surgery or radiation. My palliative chemo regimen started with GEMOX and I went through 8 cycles of every other week. I had some clinical progression and had bilateral stents placed in September at which time we also added Tarceva.  Due to neuropathies, BMS, and progression, my oncologist has switched regimen to 5-FU + leucovorin weekly and Tarceva daily.  I will be getting a repeat Pet scan the end of this week or next week.  I've been monitoring the clinical trials offered on clinicaltrials.gov and have really not found anything too exciting as of yet. I have consulted with Penn, Fox Chase, and Jefferson.  Although my prognosis is grim, I have the advantage of a phenomenal wife providing tremendous amounts of love and support, 4 terrific kids, relatively young age with no other comorbidities, and an extremely positive attitude.
Just wanted to introduce myself, give a brief history, and thank everyone for their participation and support.
Thank You!
BJ

Re: Recently Diagnosed

Hello, BJ,

I just joined today too - my diagnosis is happening now.  I'll offer whatever support I can.

Impatient patient.

Re: Recently Diagnosed

Hi Lisa
Sorry you joined this site as well:). Best of luck with your diagnosis and am praying it is localized and resectable for you!

Re: Recently Diagnosed

BJ -
Welcome to the site and the family that we all would prefer not to be a part of. My husband was diagnosed in May with Klatskin's tumor - extra hepatic CC. He was luckily able to have resection but we are still doing chemo.

I love the Fantastic 4. I think reflects a great sense of humor and it is really needed with this disease. We too have 4 kids only 26 to 20 and a 1 year old grandson.

We are here for you and you will find this is a wonderful resource for treatment and a great place to see what new and happening. Also a great place to vent if needed.

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: Recently Diagnosed

Welcome to the site and sorry you had to find us.  Please keep us posted on your treatment and best wishes.

take care,

Susie

Re: Recently Diagnosed

Dear BJ welcome to our extraordinary family but sorry you had to find us. You have done all he right things and one of our Moderators, Kris, goes to Fox Chase and loves it, they have done very well for her. I know we have had a few on here with your type of Diagnosis and I think they have had your Chemo Cocktail and it did help stabilize/shrink the CC. We have even had Stage IV's shrink enough they were able to have surgery. HOPE is the answer, never  give up as long as you have options. After all you are holding 4 Aces in your hands, the ones you call the Fantastic 4 and I am sure they are. Good luck on your PET and please keep us updated on your progress!

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: Recently Diagnosed

Thanks so much for the rapid responses!  I will be sure to update all on my progress and future therapies.

Re: Recently Diagnosed

Hi, BJ,
If  I may, since you are in NJ, try to get a second generation gene sequence done thru Mass General Hospital  GI oncology.
This requires tissue sample from the tumor ,so one way to get it is biopsy.
This "gene sequence " will provide you a road map for " more specific" future treatment options.
It was recommended to me by 2 medical oncology consults.
I am a patient of this ICCA disease for 54 months since diagnosis.
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: Recently Diagnosed

Hi BJ,

Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through. But glad that you've joined in with us all as you are so in the right place for support and help and tons of each will be coming your way. Great to heat that you have an extremely positive attitude as that will certainly help so much. And yes, a loving family will also help with support as well and it certainly sounds like you have that.

If we can help in any way then please just ask and we'll do what we can. We can't promise to have all the answers but we'll do our best to help in any way that we can. We have a great chemo board here on the site with tons of posts there by the members and hopefully that will be of use to you.

Please keep coming back here and keep us updated on how everything goes for you. We are here for you and we care. My fingers are crossed for you with your upcoming PET scan and please let us know how that goes as well.

My best wishes to 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: Recently Diagnosed

Hi BJ,
I, too, will add my welcome to our little club. None of us wants to be here, but it is a wonderful source of hope, support and information. I am at Fox Chase and love my "new" onc! I was being treated at Sloan Kettering for 2 years, and am also inoperable. I was on gem/Ox myself, and it worked great, but the side effects were bad, so we had to stop.
I was not on your current regimen.
Can I ask if you are feeling otherwise healthy? If so, you might want to check into the trial I am on at Fox Chase. Here is the info...

http://www.wjgnet.com/1007-9327/full/v18/i21/2591.htm


Abstract # 2339: Prevalence of MET expression, activating mutations of KRAS and IDH1/2, and ROS1 fusions in cholangiocarcinoma patient tumor samples Exploring the c-MET pathway from a different direction is LY2801653, a small molecule, reversible oral ATP-competitive c-MET inhibitor. In addition to targeting MET, LY2801653 has been shown to inhibit the activity of ROS1 fusion proteins and MNK1 and MNK2, two signaling proteins downstream of KRAS. The study evaluated LY2801653 as a potential treatment of cholangiocarcinoma, a rare cancer that originates in the biliary tract epithelium and has a typically poor prognosis.

The study examined the prevalence of MET overexpression, activating single point mutations of KRAS and IDH1/2, and ROS1 gene fusions in intrahepatic and extrahepatic cholangiocarcinoma tumor tissues obtained from non-Asian (n=40) and Asian (n=60) patients. The majority of cholangiocarcinoma tumors expressed MET with approximately 50 percent of cases having strong staining (IHC score of 2+ or 3+). Overall, 25 percent of analyzed samples were positive for KRAS mutation, and mutations were more frequent in Asian patients. At approximately 60 percent of samples, G12D was the predominant mutation. For IDH1, the frequency of mutation was less than 10 percent overall, with R132C as the predominant mutation. IDH mutations were more frequent in non-Asian patients. There is no apparent correlation of MET expression with either KRAS or IDH1 mutations. IDH2 and ROS1 analyses are ongoing. The data suggest that inhibitors of receptor tyrosine kinases and their signaling pathways--such as LY2801653--may merit clinical evaluation in patients with cholangiocarcinoma.

Good luck, and please keep us posted on your progress.

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: Recently Diagnosed

Hi Kris
Thanks so much for the info.  I am otherwise healthy and now that I haven't been on GEMOX for a few weeks am feeling much better ( also experienced severe SEs).  I am interested in the trial you are in and when I followed your link I got a journal article on adjuvant chemotherapy.  Any chance you can point me to the details of the trial such as enrollment, inclusion/exclusion criteria, etc.?  I'm not having much look with clinicaltrials.gov due to govt shutdown.
Thanks again!
Bj

Re: Recently Diagnosed

BJ, try this...

http://clinicaltrials.gov/show/NCT01285037

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: Recently Diagnosed

Thanks so much Kris!!