Topic: New member of the CC club here

Hi everyone.  I am a 46-y/o female who had a 4 cm intrahepatic Klatskin tumor in my bile duct and 2/3rds of my liver removed 2 months ago.  Frankly I'm still in shock about this cancer diagnosis...I've been healthy all my life until now.

16 lymph nodes were also removed during surgery; out of those only one directly connected to the tumor was canceous.

Regardless of this cancerous node, my current doc wants to prescribe both chemo (8 cycles) and targeted radiation over a 6-month period ASAP.  In doing research on the web about these therapies it seems docs treat post-surgery CC patients differently; some just prescribe radiation but some want to do both RT and chemo.  I wonder what others in my "unlucky" boat have done with success, which to me means attaining remission status?

Also, I've lost 30 pounds throughout this medical journey (looking like a cancer patient!) but the doc still insists on starting the therapies NOW.  I fear that I won't be able to eat while on chemo and will basically waste away.  Oh, I have to work full-time too, which enters into the dynamic.

Any advice on effective therapies (or things to beware of) anyone can provide is most appreciated.  I am praying for everyone on this website,  too.  God bless.

Re: New member of the CC club here

Dear Retsinelg first I want to congratulate you on being a CC survivor and I know it sounds weird but we love the word surgery. I can't help on the chemo as my husband never had it after his Whipple but I know others will be along to help you. Just know that you have come to the best little club in the world that no one wishes to join. May I ask where you are being treated? If you find you have trouble eating there are some great Nutrition drinks out there and instead of eating big meals you are better off 'grazing' all day. I also know someone will be along to explain to you about benefits while working or not. Wishing you the best and please let us know how you progress with the chemo or anything else for that matter!

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 member of the CC club here

Hi Lainy,  glad to hear your soothing words.  My treatment is at Stanford University and must say my surgeon did a fantastic job with me.

Your advice about eating is appreciated...never been a grazer person but will likely have to start.

Currently I'm seeking the insurance approval to get a second opinion from a nearby doctor at another hospital, and will keep everyone posted.

Carpe Diem!

Anne

Re: New member of the CC club here

Good work Anne, glad or should I say bittersweet to have you here! You ARE doing all the right things and Stanford is a very good hospital!

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 member of the CC club here

Anne...welcome.  Congratulations on the successful resection and your overall wellbeing. 
Although, adjuvant therapy (post resection) is a highly debated topic amongst experts however; the majority of physicians recommend it.  The below link allows for an impressive overview of this disease, treatment options including, adjuvant therapy.
http://gut.bmj.com/content/51/suppl_6/vi1.full
I am sure that others will share their thoughts with you, Anne. 
So glad that you have found us.
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 member of the CC club here

My husband is the CC patient and his has spread to lungs and lymph nodes
so he is not a surgery candidate ever.

He is 44, also always healthy until this.

He has now been doing the Gem/Cis chemo regime for 6 1/2 months....
I wanted to tell you that HIS side effects have been VERY minimal.

He is tired for the day or two afterward, but has kept his full time
job during all of this and been, for the most part, fine.

There are a few others that post here currently on the same chemo
with the same minimal side effects.  Hopefully they will chime in.

He is going to be doing Y90 radiation soon, so I have no input on
that yet.

best wishes to you.
Dorien

Re: New member of the CC club here

Dear Anne - Welcome to the family....not that any one really wants to be a part of it but I have always been glad they are here. My husband just turned 50 and was diagnosed in May with Klastkin's tumor. He had surgery in June and about 60% of his liver was taken and the used part of the small bowel to replace his bile ducts. Once he was all healed (and out of the hospital....we have had multiple stays for blood infections) he has started chemo. He is most likely not a candidate for any radiation since he had radiation treatment already for a previous cancer but we are going chemo....so far he has had three rounds of gemcitabine and oxaliplatin with no real side effects. He had gotten nauseated once and has a little fatigue on Day 2 and 3 but other wise it good.
My biggest suggestion is take the medications that they give you for nausea as instructed. We were given meds that he was required to take for two days then optional meds.....he had taken all the meds and not had an issues.
I agree too that eating smaller more frequent meals will help, concentrate of proteins and easily digestible foods.....softer foods.
Chemo will change your taste so some foods may not be palatable any longer but other may be more.
If you are struggling, have the ONC make a referral to dietician or see if the cancer center has one, they can make a difference.

Good Luck and keep us posted.

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.