pcl1029

Hi,
Wait until the appointment with MD Anderson onFeb.15 or 16 ,to see the result of the cat scan first. Then decide what will be the next step. If the tumor have shrinkage and will permit you to have surgery,then see what the doctor will suggest and go from there.you can e mail me if you want to discuss more.
God bless.

Hi, thanks Gavin.you know I need this info.Among the three prognosis predictive factors,the only one that apply to me is the size factor for my recurrence.
Thanks again,it is nice to know this because I will keep scanning q 3month no matter what the doctors said.
God bless.

Hi,
Good advice especially on the art of oncology —when to continue or stop chemo
And the art of oncology—palliative care.
God bless.

Hi,Sandtdad,
I did receive emails from three others but NOT you during the last 48 hours.
I think you can get the info.by replying my email that I sent to you a few days ago. But if your email still not get confirmed, you can copy and paste here on the web and I can answer them via e mail to you.
Try again today and I will keep an eye on it.
Thanks for your trust.
God bless.

Hi,shar,

5FU/oxilaplatin is tough to take; I presume they do labs before each chemo treatment to see whether your mom can take the chemo or not on that day. If the hemoglobin or the WBC or the platelet counts are low,;the lab should be reviewed by oncologist or the PA first to determine your mom should or should not have the chemo on that that day. Even if so,as a patient you can refuse treatment at any time.
And as the right of the patient;he/she can refuse treatment at “the point of treatment ” too without being charged(What I mean is that if the chemo were made and your mom do not feel up to it and refused,she cannot be charged for the chemo that had already made even cost thousands of dollars to the hospital.( ie: the new drug “Yevoy “cost 50.000 average/dose to the HOSPITAL.,the pt. cost will be much higher)
Here is my answers for your questions.

1.”My question is would the quality of life improve (even if just for a few months) if we stop chemo?
for me ,that is not a difficult question for me to answer;but may be difficult for some people to understand if you do not keeping up and continue to do your research on this subject:
the answer is YES.but the consequence of the overall treatment will be UNKNOWN till scan time.( If I may, i will suggest your mom having scan every 3 month instead of every 6month for disease in the active treatment state,)
2. ” Can you start again once you have stopped? ” that will be determined by your oncologist.

My own opinion is that,for myself as a patient, quality of life is much more important than just laying on the bed and receiving the tender loving care by all those who care about me.
For example I will miss very much of my wife’s tender loving care who prepare each meal perfectly for me 3-4 times a day;pray every nite with me;and my son who always find time to talk to me at nite before going to bed;ask how i am doing during that day;and before going back to his room,he always give me a good hug each nite and say good nite before leaving;and he is a 25 years old christian who works late hours.
The point is as a patient myself, the KEY is try to PREVENT or IMPROVE my disease from getting worse.this is the most important point of seeking treatment,but if the outcome is to the contrary ;then what is the point or purpose of receiving treatment and seeing those who love me so much suffering each day inside but maintaining a uplifting face outside to please me,the patient.Don’t you think the caregivers are not suffering too?
Chemo and targeted agents still is a long way to come for prolonging life(i mean quality of life) and cure.
God bless.

Hi,Debrah

debrah wrote:

PCL1029….heck of a name I hope you are feeling well between treatment plans. I have no problem sharing what info I can REMEMBER..hahaha Currently I am receiving injection OXALPLATIN0.5mg and injection of GEMCITABINE HCL 200 and ? injection FOSAPREPITANT? in my chemo cocktail every other week. Originally I was on xeloda for 12 months and radiation for 6 weeks. Hope this helps…my cc was in my bile duct and discovered basically by accident. I was a very lucky woman to have the surgeon Dr. Roger Jenkins as he is the most brilliant and kindest doctor I have ever met. OK I am babbling, sorry. Thanks for sharing and I pray for courage and healing for all of us patient or caretakers!

I completely missing this message from you at least for >2months. I apologized for this; the reason I notice this message today is because of your lastest message on this board a day or 2 ago and as always, before I reply to anyone whose question is medical or pharmaceutical in nature; rather than others;I will do an automatic review of the entire messages entry by the person . so next time if you see I didnot unswer your specific question ;please email it to me.
In fact,I prefer you to email me like others; doing in this way will protect your privacy in case our discussion going into deeper and more detailsin nature;and for sure I will not missing any of your question if you use the email option.
the following is your most recent message and I will start here instead.

“I am wondering what chemo cocktail will come next. I just had my MRI about 2 weeks ago to see what my lesions from my recurrence of cc were doing….seems after 6 months of oxaliplatin and gemcitabine they continue to grow roll My oncologist is on vacation and all I know is that the team will meet and decide what chemo we should do next. Any ideas what my options are? What has worked for others and side effects etc? I was also wondering if the side effects from my recent chemo (numbness and tingling) in my fingers and feet will ever go away? Although it was said to me that I have 12 to 18 months to live ,6 months ago I don’t believe it for a minute smile I have way to much left to live for… wink Best wishes to all our family and friends here on the cc board. <> deb”

1.your neuropathy may be improve upon discontinuation of oxilaplatin . Within 3-4 month after stopping oxaliplatin in treatment.82% of patients experienced a regression of symptoms.-from clincial pharmacology data.

2. after reviewing your history;I think your have extrahepatic CCA unless it is originated in the bile ducts in the liver.(I regard what you mean from” the bile duct “when you mentioned about your CCA was referring to either the common bile duct or the right or left branch bile ducts that enters the liver.)
if this is the case and depending WHAT you mean and WHO said to you “you only have 12 to18 month to live AFTER 4 years of successful treatment.”
There are still a lot of options besides chemo. Talk to your oncology radiologist like your had mentioned before, Dr. Garren or their team for options if yours is extrahepatic CCA;if yours is intrahepatic CCA ask them also.
I believe the radiation oncology will be the one technology that will prolong and increase the quality of life of the CCA patients and FASTER in time in treatment terms to let us continue our earthly journey as compare to targeted therapy and the chemo. and the side effects are comparable to chemo and targeted agents.
3. there are always options on the chemo frontier and clinical trials are plenty outside the traditional regimens; the problem is whether you would like to be one of the brave soul who wants to try them on one by one and have the untold side effects until it happens.
In my opinion about targeted therapy,it will work well in the first part of the treatment,but drug resistance will catch pretty fast too; so it is more or less like playing musical chairs until the options runs out; not to mention that fatique is the major side effect in addition to others.

Last but not least, the above is only my current view point on CCA and can change at any time if i find new info. on this subjects as well as talking to other experts in this field. I will keep all of you inform.
As you may know already, I am not a doctor,I am only a patient of CCA for 32months and went thru more than 2 resections in just 3 months even though I had the best available environment to help myself( I can say this without any doubt) ; What I am saying is that(I save my own life or a lot of trouble down the road if I was not keeping up of what happened to me even after the best care that I can have.) ,

In short,trust yourself more than anyone else;keeping up your knowledge on CCA;trust yourself instinct rather than putting your trust on something or someone you were familiar with long time ago. It is your life and not the other way around.Ask questions about the procedure,the protocol and the outlook the doctors give to you. explore other alternatives; FOUR years is a lot of time for other effective treatments to come out in addition to chemo and targeted therapy.
I always encourage CCA patients not to stand still and keep searching for new treatment plans and hope for the best. and your are the lucky few that can survive this long on CCA.
please email me if you want to discuss more about your case(for protection of your privacy as well as sensitive and personal detail discussion that it may come up..)
God bless.

Hi, Lisa,

Sorry I missed your entire 2 messages.otherwise I would have said something by now.
please using email thru this web sites by clicking my name on the left top corner, and you can send me the email thru the forum.
It is very tough to have surgery within the 3 month recovery period and to have another surgery,I had been there ,so I knew how your body feels unless you are very young and strong.
Unless you are up to the 3rd resection and you have no choice other than that/(that means the location of the tumor is so close to the vital organ or blood vessels,there are other ways to treat your type of canner without opening you up each time.)
Where do you reside? in the States? and may I ask how old you are. I know you have intrahepatic cholangio CA.
The challenge of SURVIVING with a good qualtity of life for us(the CCA patients) is a long and winding road ;try to think of it as a chronic disease my be helpful in terms of emotional and psycoloical approach .
Because I donot know about your medical history, if you want further info. please using the email option I mentioned above.
God bless.

Hi,Jtoro,
I hope you meant you take Vicodin tablet 5/500 or Vicodin ES,3-4tablet total per day,if you need stronger strength,switch to Norco 5 or Norco 10 because Norco contain less acetaminophen per tablet but equal in content of hydrocodone,the main narcotic ingredient for pain.
Back to the discussion, both reports indicated STABLE disease for the multiple low density liver lesions and omental carcinomatosis ,with the latest report of suggestin some of,but Not all of the low density liver lesions and omental carcinomatosis MILDLY or SLIGHTLY increased in size.

In my opinion,I will suggest to accept D.r Lenz” the 3 drug combo” for another cycle as Dr. Lens original decided, I think he was right on that.
as I also indicated in the last message, you need to rediscuss your concern with dr. Lenz if you are not 100% sure. You donot want to upset the doctor,most of them ,especially those who are of the highest regards may get offended by information patient get from the internet even the research infomation were done by their respected peers on the same field. It is totally depending on the personality of the doctor,some are open minded,some are not.Remember I am only a patient and not a doctor. And my suggestion cannot match the experience of Dr .Lenz for sure.
5FU/oxaliplatin may works too, but as always,you have to try it first to know whether it works or not. Again, as whenI first answered your message,I said,
“This is a difficult decision”,indeed it is.
As a Christian,during the course of my treatment,as you may know,I read a lot in addition to my understanding of my disease, therefore I have more choices to choose From. In such events,I always let the Holy Spirit guide me through, it sounds I am so undecided and needs Devine intervention and I am stupid,but as patient myself,I know ,for most of us, we cannot do much to help ourselves because of our health and time is not on our side, therefore the thinking process of the existence of us on this earth are always on the backs of our mind no matter what suggestion otherwise.our worry are very different than our caregivers ,our fear are in a very unstable situation ,our so call reasonable expectation become unreasonable ,and that is why ,especially me because of my knowledge of this disease may be actually a hindrance for me, I pray a lot ,I need the Holy Spirit to guide me. A study on the use of alternative or complimentary medicine(CAM) indicated patients who have higher education level ,most of them will seek CAM as treatment also. why, because as patients we are really think that ,the more we know,the best chance we can have,but sometimes it may not work that way .that is why I need the Grace of the Lord for guidance,until now His Grace is more than I could ask for.
If you are not a Christian,please forgive me for my venting.you know,sometimes tough and stupid man like me still need to talk out loud to relief the emotional burden even on the surface , I always present my best front to all those who know me.
If you are a Christian,Just leave all your problems to our Lord,Jesus Christ, on earth as in heaven, he will give his best for us. And for the others who think I am too religious and lost my marbles at this moment, my answer is NO. I just know that human limitations cannot provide the timely and urgent treatments that we need now for us,the patient.
God bless.