(12 replies, posted in General Discussion)

Question, How do you put a self description at the bottom of the page as I see others have?


(12 replies, posted in General Discussion)

All-star   Can you tell me your story if you're willing. It is so frustrating to have this disease and not really feel too bad about it physically except for eating as you mentioned. I have lost 25 lbs and have been able to maintain it lately.  Are you on treatment and if so what is it.  I have had my diagnosis since 2/22/12 and was told 18-20 months. Praying and hoping for a miracle. I'm 54  but you are so young. I am so sorry. I pray your youth and strength will aid you in your fight for life.
I am new to these discussions so I hope I am not crossing the line with my questions.  God bless you. I have a deep faith in God and what he can do to help us.  My wife Cyndi and I have raised 8 children and we have 100's of friends, family and church people praying for a miracle.  We would love to add you to our prayers if you want.  Prayer is a real force and God himself commands us to pray, so this is our hope. Thank you for your reply.   Take care......

I have a 5cm tumor in my right lobe with two marble sized lesions elsewhere in my liver & two swollen lymph nodes.  I was diagnosed with ICC due to a stomach ache I had for four months.  Two days before my chemo treatment began my stomach ache stopped and I now have no symptoms whatsoever. I am now on my first round of treatment with Gemzar/Oxaliplatin. 

My questions are what are typical ICC symptoms and how do they usually progress. Please be detailed. My prognoses is incurable and inoperable. So I need to know what to plan for down the road. Worst case scenario. The Doctor gave my 18-20 months. Again please be detailed.

My high doses are gemcitabine 1000mg/m2 (1st day) and Oxaliplatin 210 mg/m2  biweekly. (2nd day)

My low dose Onco wants to give me a weekly treatment of 100gm/m2 gemcitabine and 40mg/m2 of cisplatin.

my calculations show a biweekly comparison of 1/5 for gemcitabine and 4/5 for oxaliplatin vs cisplatin.

Am I being under treated with the low dose of gemcitabine?

Anyone have any links to research for low dose ICC chemotherapy???

My new ONCO wants to exchange the oxaliplatin for cisplatin. He says it has fewer side effects. Medically I do not have a great prognosis so I want at least maintain a life while I go through this.  With the end being the same I am going to pray for the miracle I need and to not be a burden on everyone by using the chemo with the worst side effects.
In the event I survive for a while longer I can have a body that works to a better degree than oxaliplatin is currently giving me.
I also understand that oxaliplatin side effects get worse    as the doses go on. Is this true?

My first biweekly infusion was on March 26 & 27. Gemzar on Monday and Oxaliplatin on Tuesday.  The oxaliplatin side effects are evident with nueropathy and a very achy stomach. No nausea though. I have lost 5 lbs in the last 10 days. I was at 185, now 180. I used to be at 205.

I know I need to force myself to eat, Ok I can do that. More protein, sure.

My question is from the 100's of people on this board is there an opinion on Low dose weekly infusion vs.  high dose biweekly infusion. My newer ONCO is saying research shows the body tolerates the more frequent but lower doses much better than the High dose, with similar long term tumor growth.

Whats are the opinions from those on this board?

I am currently in the middle of deciding between using an Onco who prescribes a low dose infusion on a weekly basis, and my current Onco who treated me last week for the first time. My side effects are substantial. Before Chemo I had an appetite and little or no discomfort. Now 9 days later Ive had my socks knocked off. I have some neuropathy from the Oxa, My stomach aches all the time unless I do not eat. Eating is a burden and I have very little energy except to do minor house chores.

I was told that low dose would ease the side effects substantially.

I started on Gem/oxa last week and now I am always dead tired with very little digestion happening.  I can eat tiny meals but I have little appetite. Is it the chemo or is it the 5cm liver tumor? I have no nausea but I just can't eat much. I feel like the chemo is eating for me. I always have a stomach ache. before chemo I was feeling normal with no ache. now I am always aching.  CHEMO? 

WHatever I eat, it tastes terrible. Not complaining its just a fact.  My taste buds are gone I think. Im on a biweekly treatment with 5 days until my next one. I need to get some energy somehow somewhere before my next treatment starts.

Thank you for your responses already, My wife and I are totally amazed at how quickly so many have replied.  WOW!

To answer a question or two from above:

I am 54 years old, 185 lbs, 6'1" tall and can walk at least 6 miles a day. I guess that means I am in fairly good shape.  I have never drank, smoked or done drugs.
My only symptoms so far are a dull ache in the upper right abdomen and I can't eat much at one meal. So I get to eat 6 small meals a day smile

My ONC says I have 18-20 months if I do Chemo.

I have a lot to live for. I have eight children, six married and soon to have 8 grandchildren, so I am motivated to fight this CC dragon.
I am new to this site so any referencing to specific topics on this discussion board you could give me to stay positive would be helpful.

Again thanks a million for your responses.....

I have intrahepatic CC stage lV with two cancerous lymph nodes and several small lesions with one large tumor at 5cm in the right lobe.

We are being told to use chemotherapy because there are no other options for my cancer. We have sought two opinions, (Fred Hutchinson & Stanford university) They agree on the chemo treatment.  From what I have read it seems that chemo has little or no better survival rate than non chemo.  I'd like to hear from those who have experience with this decision process. I'm not afraid of chemo but I find it interesting that the statistics do not show a benefit, or am I looking at the wrong literature.

I start chemo this week.