pcl1029

Hi,Randy,
“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.”

The best case scenario is you will live to the average of 78 years old for a man.
The worst case scenario is what the doctor had said to you 18-20months.
No body,including me,a patient of ICC for 35 months now,will know for sure what the prognosis will be.(incurable or inoperable are two relative terms of uncertainty;it does not mean as a definitely unchangeable outcome .)
There is always hope out there.
Since you are on the chemotherapy,your ICC symptoms are mostly related to the side effects of the chemo agent that you received;but it may or may not happen to you or it may happen to you in different degree. Tireness, anemia,neutropenia, etc. just to name a few.
If you really want to know,please read my discussion message about my-sister-in-law’s case under” the remembrance forum”. at the end of the message ,I listed her entire CCA journey of 15 months from the beginning to the end.
My friend, you are only 54. if the chemo agents works and your 2 lymph nodes disappear first,radioemoblization may give you enough mileage to enjoy life till the cure coming to you. In short, to have a positive attitude is ,in my opinion,the best medicine to prepare for this long and winding ICCA journey. good luck and
God bless.

Hi,
the Gemzar dose comes to 750mg/m2 but the duration of administration is >70 min. so basically you will have the same dose as before since the volume of distribution of Gemzar is a 2 compartment model. I will not worry about it since you are also on 2 other meds too.
God bless.

Hi,

The duration or dose does not affect overall clearance by the kidney.
However the clearance of Gemzar is 31 % slower for women than men.
For women,the half-life of the drug ranged from 50 min. for short infusions time(ie:30 min-1.2hr)) to 371 min for longer infusion.(ie: 1.2-5hr). Therefore the longer duration of administration of 75min. compare to the shorter 30 min.is really not that much difference except the Gemzar may be stay in your body a little bit longer than before. In such case ,I will drink more fluids to flush out the Gemzar out of my body .
What is your body surface area? It seems the dose of gemzar is on the low side,but the Xeloda dose is on the 1000mg/m2 regular dose strength schedule.
God bless.

Hi,
there are no standard protocol .normally is 6 cycles and scan for progress of the treatment and determine the next step to go forward or change to another treatment for the cycles that is recommended for that new chemotherapy, Kris is right on her assessment about the treatment plans for CCA. In short, they are trying what they think is good for the patient at that point of time (the time of appointment). I still don’t think chemotherapy is the way for finding the cure fast enough for most of us who suffer for CCA.
Most of the chemo regimens is for 6-8cycles and scan for results ;as you can see on this web site there is not uncommon to be on Gem/CIS more than 6 cycles.;not to mention Gemox ; Gemzar or 5FU monotherapy which the manufacturers indicated ” till disease progress or side effects intolerable.” as the criteria to stop the use of the drugs. that means if the drug works , the therapy can be used for life.(what kind of quality of life is that?).

My suggestion is that you are always prepare psychologically the CCA will be back,(>65%);do not expect otherwise. so if this is what you believe and agree; then “to stop the treatment and wait “may not be the best option; but I also know patient are tired of chemotherapy(I know, I am on Gemzar,the easy one for 14 month and I hated it.)
So the logical choice here will be just have the Xeloda 2 or 3 tablets twice a day,but make sure you talk to the oncologists first and he agree,he is the doctor and i am only a patient .I think in that way ,the patient still have chemotherapy to control the CCA but can avoid the harsh side effects of oxaliplatin or cisplatin . The patient will have both sides of world -less and tolerable side effecte and stil have chemotherapy to keep the CCA under control.
Yes, there are side effects on Xeloda,but I think if your want both the worlds(good and bad); Taking Xeloda by mouth is my choice under you circumstances.
God bless.

Hi,
I am just a patient .like your mother. ,I am almost 63. I had the good fortune of have 2 resections in two years. I mean it- it is God’s grace that allow me to have the chance of surgery if you are familiar with this disease. so, I think i can qualify to give you some advice.

1. the surgery is long 4-8 hours in general.
2. both times I spent 5 days in the hospital.
3. No pain,not even an aspirin;Just post-op antibiotics to prevent infection.
4. Start to be up and walk around in the hallway the next day.and keep doing it so the nursing staff notice your progress.
5. I talk to the nurse and doctors when they make their rounds the 2nd day.
6. I sit up and eat a “regular diet” right away the next night;but most patients will start a” liquid diet” the first couple days.(it depends on your mom’s surgery,if it is a Whipple procedure and not just a resection,it may take longer.)
7. I do feel tire most of time,I just close my eyes to rest and plan for my next step if I did not go to sleep.;never watch anything on TV.
8. One of the most important thing is using the “breathing machine”, to try to help you breathing better after surgery. the more practices the better and the earlier you can get out of the hospital and avoid pneumonia .
8. Make sure they give you DVT prophylaxis like Lovenox subcutanuously injection daily and the use of the machine that help your leg’s blood circulation to prevent blood clot.
9.. I do not think she need a nurse to look after your mother if there is no complication during and after surgery(ie: pneumonia or develop DVT.)
and she can be on her feet to walk out the hospital instead of using the oversize wheeler chair.(but each person is different, you have to make your decision base on your mother’s overall heath condition after discharge from John Hopkins— the #1 hospital in the past 25 years in the States for providing the best quality of health care by an institution in general.)
good luck and
God bless.

Hi,
I am a chronic Hep. B carrier since birth.
Acyclovir and entecavir are both classified as antiviral agent and are similar in the main chemical structure but different in the side chain; the mechanism of action are similar using phosphorylation. but if you look closely on entecavir-it has a black box warning of lactic acidosis and severe hepatomegaly with steatosis. This warning is far worst than the side effects listed for Acyclovir.
The point I want to make is that hepatoxicity is minor for Acyclovir compare to similar antiviral agent like entecavir. (ie: liver function test increased by 1-2% and <1% for hyperbilirubinemia and hepatitis listed for acyclovir.)
I hope the above explanation helps you in your decision making process.
God bless

Hi,
Good luck on what you do for your mother.
Just a side note: for those who ask why people cannot get DCA as a drug(pharmaceutical grade) in the U.S. and have to go to Canada to get it.
The reason is simple. DCA is not approved by FDA as a drug in the States.
God bless.