Topic: Hey Percy, could you please give us your expertise?

Hi Percy,

Lisa, Lauren, and I were wondering if you could do us and probably a lot of people on here a favor. Could you please list all the chemos that are used for CC and tell us if they are by infusion or pill. Could you then please tell us what each one does or what the difference is between each one. Would you please try to explain in plain english too. We were discussing different ones and are really confused. Thanks for your wisdom and knowledge. I know this is a lot to ask, but I think it will clear up a lot for people and also make them more informed. Thank you so much.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hey Percy, could you please give us your expertise?

Pam, thanks for bring it up and Percy, thank you for posting the list.

Re: Hey Percy, could you please give us your expertise?

Thanks Percy. Now when you have the time, can you explain the difference between each one and why they use some more than others. I know you are not a doctor, but I know you know a lot about this stuff. Thank you so much for your time. You are the best and such a valuable asset to this site!!

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

4 (edited by eli Thu, 23 Feb 2012 22:41:00)

Re: Hey Percy, could you please give us your expertise?

To help Percy, I will post all chemo protocols listed in NCCN Treatment Guidelines.

Unresected And Metastatic Cases

Phase III clinic trial supports this protocol:

   gemcitabine + cisplatin

Phase II clinic trials support the following protocols:

   Combination protocols for patients with good performance status

   gemcitabine + oxaliplatin
   gemcitabine + capecitabine
   capecitabine + cisplatin
   capecitabine + oxaliplatin
   5FU + oxaliplatin
   5FU + cisplatin

   Single agent protocols for patients with poor performance status

   gemcitabine
   capecitabine
   5FU

Resected Cases

There are no Phase III clinical trials to support chemo protocols for resected cases.

Phase II clinic trials support the same protocols as listed above for unresected cases.

=================================

The protocols refer to drugs by their "proper" medical names.
Here are the trade names of the same drugs:

Gemcitabine = Gemzar
Cisplatin = Platinol
Oxaliplatin = Eloxatin
Capecitabine = Xeloda
5FU = Adrucil, Carac, Efudix, Efudex, Fluoroplex

Re: Hey Percy, could you please give us your expertise?

Thanks for your input, Eli!

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

6 (edited by PCL1029 Sat, 25 Feb 2012 15:12:00)

Re: Hey Percy, could you please give us your expertise?

Hi, Pamela

Here is the list  of chemo agents that mostly used for CCA that I can find at this point. most of them are used in combination to get the best results (synergy) out  of the combo that used in the regimen.

Taken by Mouth:(not necessary FDA approval indications  for CCA but doctors can use them out of protocol)
1.Xeloda(oral form of 5FU)-see 5Fu below;diarrhea and hand and foot symptoms are the side effects.

2.erlotinib(Tarceva)---EGFR cell pathway inhibitor(tyrosine kinase inhibitor);
inhibit angiogensis (cut off blood supply to cancer cells and cause them to die);cause cell death by interrupting the reproduction of cancer cells;smoking will decrease the drug effects by 24% which may result in treatment failure.

3.sorafenib.(Nexavar)---Multiple  cancer cell pathways inhibitor; inhibit cell proliferation and angiogenesis(cut of blood supply to cancer)
4. Celecoxib-an antiflammatory agent belongs to the COX2-an enzyme family.but use much less recently.


Taking as Infusion:
1. 5FU.---a chemo agent belongs to the Antimetabolite family that inhibits RNA synthesis and function ; may also  on DNA synthesis but to the less degree. in doing so,cause cancer cell to die.

2.Gemzar---a chemo agent belongs to the Antimetabolite family  that inhibits the DNA synthesis in the cancer cells;induce  tumor cell death (apoptosis);
some study indicated Gemzar is more effective in treating CCA than 5FU,but  both 5FU and Gemzar are  FIRST LINE  chemotherapy  agents of choice  to combine with other chemo agents in CCA regimens;other  study indicated effectiveness of both agents are more or less the same.

3.Cisplatin---1st generation of the platinum family, an alkylating agent affects  cell DNA replications thus causes cancer cell death(apoptosis);may cause kidney impairment and impairs  hearing (ototoxicity);usually use in combination with Gemzar or  5FU to provide the synergic effect of the regimen of GEM/CIS or FOLFOX.
4.Oxaliplatin--- the 3rd. generation of the platinum family;less kidney impairment than cisplatin but more patients experienced peripheral neuropathy
5.Carboplatin--- the 2nd generation for the platinum family;decrease platelet production;much less toxicity on the kidney compare to others in the platinum family; cause less peripheral neuropathy  than oxaliplatin.

6.Avastin(bevacizumab)-a VEGF cell pathway inhibitor--- an angiogensis inhibitor to cut of blood supply to tumor cells.and cause cancer to die.

7.Erbitux(cetuximab)-an EGFR cell pathway inhibitor;blinds to the cancer cells surface receptor of EGFR and block their stimulation;therefore renders the cell pathway useless.

8.Leucovorin(it is not a chemo drug but used  to enhance 5 FU effect)

9.FUDR(Floxurdine)-it is an analog of 5FU,belongs to the Antimetabolite family. Administered via the hepatic artery(pump);hepatic toxicity is high.

10.Epirubicin--- a chemo agent belongs to the Anthracyclines family which is less used nowadays.
11.Adriamycin---a chemo agent belongs to the Anthracycline family;interrupt the DNA and RNA synthesis in cancer cells and cause cell death;used in chemoembo in CCA;major BOX warning by FDA is myocardial toxicity  ;also neutropenia and leukopenia(75%)

12.Irinotecan(Camptosar)-inhibits DNA synthesis in tumor cells by inhibiting an enzyme called topoisomerase1 ;  useful but tough to take.

13.Docetaxel-chemo agent belongs to the Taxane family,interrupt the mitosis of the cancers cells cycle to reproduce and cause tumor death.

14.Mitomycin- a chemo agent belongs to the Alkylating family; inhibit DNA and RNA synthesis and thus cause cancer cell death ;use in chemoembo for CCA and can be combined with 5FU for treating CCA too.

15.Panitumumab(similar to cetuximab ;but difference from them is that this is the first  100% HUMAN  monoclonal antibody direct against EGFR cell pathway;  therefore you may expect less allergic reaction from Panitumumab.

16.paclitaxel-(Taxol) a chemo agent in the Taxane family that  primary inhibits the cell cycle during mitosis;thus the tumor cell cannot duplicated and  die;Taxol should be given before cisplatin if both drugs are used at the same time for maximum benefit of the combo.;also inhibits angiogenesis but is very tough to take.

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: Hey Percy, could you please give us your expertise?

Thanks so much, Percy. You are so awesome. I am sure this will help a lot of people understand chemo better. That was a lot of work on your part and I really appreciate your time. God bless you.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

8 (edited by PCL1029 Fri, 24 Feb 2012 00:17:55)

Re: Hey Percy, could you please give us your expertise?

Hi, Pamela,

"Thanks Percy. Now when you have the time, can you explain the difference between each one and why they use some more than others"

This is a very difficult question to answer.but I hope my revision of the message will provide you some answers; if you need more info.
the best way to answer your questions will be if you can give me specific regimen to work with;like GEMOX or FOLFOX.

5FU and Gemzar are the FIRST line chemo agents to use; it is more or less like building a house;this two drugs are the foundation of the house(or in this case ,the regimens);the platinum family of drugs and others are adding to the 2 FIRST LINE drugs to provide the synergic effects of the regimens and that is why they(the add on drugs) are used less.

Gemzar and 5FU(like Xeloda) can be used alone by itself(mono therapy) too.

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: Hey Percy, could you please give us your expertise?

Percy,

I think you have done such a great job explaining a lot to me. My daughter is on Gem/Cis and 5 FU in a clinical trial. She will be having her 12th round next week. The doctor is thinking he might want to use just Gemzar and 5FU after her MRI and CT scan if tumors are still shrinking. He thinks Cisplatin is really hard on the kidneys to be used longer term. She also has a problem with low platelets and the doctor said that is caused mostly by the Cisplatin. I would just like your opinion on this. Is there a better chemo that I can bring up? I know you are not a doctor, but you research a lot and seem to know your stuff. Thanks again for getting back to me so quickly.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hey Percy, could you please give us your expertise?

Pam:
I was on Gem/Ox and had to stop the oxaliplatin because of side effects. So I got Gemzar only the last few times. My onc says Gemzar is really hard on the blood counts especially the platelets. My numbers, although in the normal range, are still on the low side so until my surgery is completed she will not give me Gemzar. I don't know about Cisplatin, but it might do the same thing.

Thanks Percy for all the information. I will definitely be bringing a printout of this to my onc for after the resection. I don't think she is willing to do FUDR thru my pump anymore since I kept getting sick during the time period we were actually using it. She isn't willing to take the chance that it wasn't the FUDR. And I don't know if she will put anything else thru the pump. I still have to find out a lot about "after". I might have to find another protocol. This will help me a lot.

Kris

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: Hey Percy, could you please give us your expertise?

Kris,

I read your CaringBridge and it does seem like you had a lot of problems with your chemo. I hope the resection will fix things once and for all!! Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hey Percy, could you please give us your expertise?

Maybe ask about erlotinib? I take it, and Dr. Javle thinks its helping me. Its very easy....just 1 pill a day. Side effects are very little (face rash).

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Hey Percy, could you please give us your expertise?

Pamela,

Is Lauren's tumor accessible for a biopsy?

If it is, ask your oncologist about Chemo Sensitivity and Resistance Assays testing. Cell Culture Drug Resistance Testing is another name for the same test.

If your ONC is open to this idea, you will need to locate a lab that offers this test (hospitals don't do it). The lab will tell you the size of the biopsy sample they need. If the hospital cannot extract the required amount of tissue, chemo sensitivity testing is not feasible.

A short summary of how the test works:

When a patient has an infection, doctors often send a sample of infected blood or tissue to a lab where they can grow the bacteria and see which antibiotics are most effective (called Bacterial Culture and Sensitivity Testing). Chemosensitivity testing is an attempt to do something similar for cancer; fresh samples of the patient's tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. It is highly desirable to know what drugs are effective against your particular cancer cells before highly-toxic agents are systemically administered to your body.

...

Chemosensitivity testing might help you find the best option, or save you from fruitless additional treatment. Another situation where chemosensitivity testing might make particularly good sense is in rare cancers where there may not be enough experience or previous ideas of which drugs might be most effective.

You can read more details here:
http://csn.cancer.org/node/145884

Re: Hey Percy, could you please give us your expertise?

Eli...I have not heard anything positive about chemo sensitivity tests for CC patients.  Do you have personal experience?
Hugs and love,
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

15 (edited by eli Fri, 24 Feb 2012 20:01:06)

Re: Hey Percy, could you please give us your expertise?

Marion, no personal experience. This is just an idea for Pamela to discuss with Lauren's oncologist.

On the flip side:

Have you heard anything negative about chemo sensitivity testing for CC patients?

Re: Hey Percy, could you please give us your expertise?

Hi Eli,

I doubt I would be able to get Lauren to have another liver biopsy. She said it was the most painful thing she ever went through and swears she will never have another one. Thanks for your thoughts.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hey Percy, could you please give us your expertise?

Eli.... For other cancers, the unique molecular “blueprint” has been identified; that is not the case for Cholangiocarcinoma. Also, CC has not been researched enough to identify specific "markers." We only have a few drugs identified (via clinical trials) to provide a probability of response.  And, we work with these drugs.
Hugs and love,
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: Hey Percy, could you please give us your expertise?

Hi Percy
Thank you for all the work you did to explain all the chemo drugs. I found it very interesting that so many are paired together and my oncologist has only given me one at a time and they have not been effective. I wil be bringing this up with him.  Thank you again
Lisa

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: Hey Percy, could you please give us your expertise?

Wow, lots of info.  Thanks, Percy

Take care!

Susie

20 (edited by eli Fri, 24 Feb 2012 22:17:23)

Re: Hey Percy, could you please give us your expertise?

Marion,

Chemo-sensitivity / Chemo-resistance testing does *not* use tumor markers. At all.

Here's how the test works:

1. the lab receives *fresh* tumor sample from surgery or biopsy.

2. the lab grows live cancer cells in a tube.

3. the oncologist tells the lab which chemo combinations to test.

4. the lab applies the requested chemo cocktails to *live* cancer cell cultures.

5. the lab measures the response of *live* cancer cells.

As you can see, they don't need to know molecular blueprint of the tumor. It's an experiment in the dish. By observing the response of live cancer cells, they can tell the oncologist...

Chemo protocol A worked well
Chemo protocol B was ineffective

They don't need to explain why protocol A worked or why protocol B failed.

That's the sales pitch.  I don't know how well these tests work in practice.

Re: Hey Percy, could you please give us your expertise?

Eli,

Do you know if that test was covered by insurance or how much it was?

Susie

Re: Hey Percy, could you please give us your expertise?

Eli....retrieving tumor tissue from those people ineligible for a resection is complicated and in many instances prohibitive.  Considering that only 20 percent of CC patients are eligible for a resection, the other 80 percent then have to rely on blood testing, which I believe does not make good sense.  It does not tell much because; it compares likelihood of response in comparison to the rest of the population. 
We only have a few drugs available, evoking varying responses within the patient group.  So, we work with what we have and we continue to see fantastic results for many.
It all leads backs to the issue of needing accelerated research for this disease.

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

23 (edited by eli Sat, 25 Feb 2012 01:13:03)

Re: Hey Percy, could you please give us your expertise?

Susie:

I don't know much about insurance coverage in the US (remember, I'm in Canada).

Chemosensitivity / Chemoresistance test that I described is called ChemoFit. You can read more about it here:

http://act-inc.net/index.php?cID=94

On the right hand side, there is a link to Reimbursement Information.  The cost is $2500.

24 (edited by eli Sat, 25 Feb 2012 01:56:52)

Re: Hey Percy, could you please give us your expertise?

Marion:

CS/CR test cannot rely on blood testing. It requires a fresh tumor sample.

I agree with you that, for most CC patients, it's hard to take advantage of chemo-sensitivity testing. Patients undergoing resection are very unlikely to have the information about the test. If and when they learn about the test, their resected tumor is no longer fresh, so it can't be tested. Patients not eligible for resection face the difficulty of obtaining biopsy that meets testing requirements.

That said, a small minority of CC patients might be able to undergo the test.

You are right we only have a few protocols to choose from. But, we do have a choice...

gemcitabine + cisplatin
gemcitabine + oxaliplatin
5FU or capecitabine + cisplatin
5FU or capecitabine + oxaliplatin

... and a few others, less common ones. Today, there is no way to tell which protocol is the best for the given patient.

My wife is doing Gem/Cis chemo. Is it the best protocol for her? We don't know. Is it possible that Gem/Ox would be a better choice? Or 5FU/Cisplatin? Yes, it's possible. We have no way to find out.

CS/CR testing promises to change that. The sales pitch is extremely appealing. Can they deliver on their promise? I don't know.

Re: Hey Percy, could you please give us your expertise?

eli....most of what I see is dated back to 2009; only one is dated in 2003.  I would like to see something on hepatobiliary cancer or, colon cancer, or pancreatic cancer, and I would like to see something more current.

I agree in that we really don't know what will work best for each individual. Gem/Cis has become (I don't believe that it has officially been declared yet) the standard treatment for CC.  Endpoint: increased life expectancy.  This study clearly demonstrated that those patients receiving Gemzar plus Cisplatin faired significantly better than those receiving Gemzar only.  It also was the largest study ever conducted on CC patients - multinational - close to 3000 patients - the majority of patients were of Asian descent.

So, dear Eli, we need to continue and put our trust in the current treatment options.  We stay vigilant, informed, and most of all, we need to keep up the hope that it will work for us.   

Hugs and love,
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