Re: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Percy,

Thank you *very much* for sharing this page.  I want to discuss biomarkers test with our oncologist.  It will be very helpful to have this page in front of us.

BTW, if you want to share more images from your report, try imgur.com.  It's easier to use than Google Documents.

1. go to imgur.com
2. click Computer button to add the images. Image names will appear under Start Upload button. Do not click Start Upload just yet.  Add all images first.
3. select the checkbox to group the images into an album
4. select album layout
5. start upload
6. copy album URL and post it here

http://i.imgur.com/ErG9y.jpg

Again, thank you very much for sharing this info.  I appreciate your help.

Wishing you the best,
Eli

27 (edited by PCL1029 Mon, 19 Dec 2011 11:19:04)

Re: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Hi,eli
this is for you, the biomarkers are  much more specific for CCA than the general one testing I used yesterday for testing purposes.

Remember,eli, I am old and I am not a software computer genius like you.it takes more time for me to upload or download  one page of something than to read a research study. SEE, you can help out in so many ways to benefit all of us and this is a good example ;It means I can copy info. of charts and tables and post on this board for all the patients and caregivers to help to explain things better.
In deed we need help in so many ways if other professionals willing to do so when they visit our wed sites and contribute whatever special skills they have. I know some of the nurses and a lot caring individuals are helping out a lot already on this web site. and besides we have you , a poet,a researcher in UK and a patient advocate  in US too.what a great bunch of people to work with .

Thanks again.Eli and good luck and give me feedback after you talk to your oncologist about biomarkers for your wife. it will be of benefits to me and other patients.
God bless.

https://docs.google.com/open?id=0B9UTQL … EwZDVhZDk0

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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Just thinking......in order to save space on this site, we might also want to consider placing links to specific articles rather than writing it out in full.

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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Percy, you made  me laugh this morning! Calling yourself old! If you are old I am really an antique!!!!!!!!!! Hope you are feeling well, dear friend.

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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Hi, Lainy,

I am fine, Lainy,thanks for asking.
Well how about mature instead.
Without your sense of humor to entertain and made the users on this board feel  at easy;  I  SINCERELY think that people will  not read all my boring messages even though it may be of value to them.
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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Percy, you are far from boring, I read between the lines and I see a kind and caring man! Stay good!

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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Two thumbs up on your comments Lainy and Percy.  You are precious to us all.

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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Percy,

Thank you again for sharing your biomarkers report. If it takes you too long to upload the pages, let me help. I will contact you via forum email.

We saw our oncologist today, but I didn't get a chance to discuss biomarkers report. He was extremely busy and hopelessly late.

I can tell you what our surgeon told us about tumor testing. We saw him last week and I asked his opinion. He said that, before we order the report, we need to have a clear idea about
(a) what questions we want to answer, and
(b) how exactly the report can answer them.

He said it's better NOT to have information, than to have information that we don't know what to do with. This is irrespective of how much the report costs.

This is a very broad comment that applies to all kinds of medical tests.  I think it's a very important consideration. When I look at "Target Now", I'm not certain what questions it can answer for us.

Best wishes!
Eli

Re: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Marion,

Re: your comment about forum space

The images that I posted in this thread are stored on a 3rd-party server (imgur.com).  When forum members view a thread with images, the images come directly from the 3rd-party server to the members' computers. They don't consume any space or bandwidth on CC.org.

Long text articles posted in the forum are a different matter. They are stored on CC.org server.

Re: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Hi,Eli,
Your surgeon is right, that is why I did not do it until now.
But I have to know in case the questions comes up on this message board. especially now ASCO view targeted therapy as the priority of future treatment plans in the next 10 years. That means most if not all drug companies will devote more time,money and resources to targeted drug research.Without knowing exactly what the bio markers means and how it may be used, I cannot be of help to those who wants to know more ,like you.
The field of bio marker testing is not standardized yet;for example ,I read that MD ANDERSON bio marker standard is different than the lab I used,mine is more sensitive because they can used up to 20% of cell sample than the 1%MD Anderson used.(I read the data from one of the reports I got.)
But I cannot prove that.
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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Hello Percy.  Thank you for your usual prompt response.  And my apologies for my delayed reply.  It has been of a busy bunch of days.
Rather than continue to hijack Sandie's thread, I thought to jump onto this one, keeping the continuity of the conversation.

To review:
PCL1029  20 July 2013
“If I may, Sandie, I had my 3rd recurrence in June,2013. It was about 20 months after my 2nd resection on Oct. 2011. Therefore  we are a kind of similar in the tumor growth rate for intrahepatic cholangiocarcinoma(CCA).
Since I do not know about the medical systems in France, but if you can have a biopsy of the tumor to do a " next-generation sequencing genomic profile ", it may be of value in current and future treatment. The idea was suggested to me in my 2nd consultation from MD Anderson for oncology consult .
This CCA really a disease of its own; most other cancers, after the removal of the tumor will enjoy a much longer disease free period,even primary liver cancer .
I know how it feels when CCA come back to say hi to me. But I know and prepare it will be back anyway because of the odds are high for intrahepatic CCA.”

rvb  21 July 2013
“Percy, did I read correctly that you had a "next-generation sequencing genomic profile", did it make a difference in treatment approach?  Has anyone else had it done, and what was the outcome?

PCL1029  21 July 2013
“The following is the exact quoted from the consult from MD Anderson:
...To make some suggestions, if not done I would recommend genetic sequencing for additional genes .....
I also got another oncology consult from university of Chicago, the direct quote
is as follows:
---I would also send the tumor tissue away for full sequencing if it has not already been done, just to see if there are any hints as to how to best treat your tumor....
What i think is that they try to leave no stones unturned for future treatments since targeted agents are famous for developing resistance early.
I am EGFR positive, so they recommend Tarceva for me if all the tumor were removed completely by RFA and PEI.
BTW, if TIL from NIH is not for you, you may consider clinical trial of PD-1 and the like (PDL-1).(immunotherapy agents).”

rvb:  If I am understanding correctly, the testing offered a more directed approach to your treatment?  So it was successful as it appears to me, and good news for you.  I will bring this information to my Nurse Practitioner on Monday's appointment for her response.  As mentioned previously, I am not looking forward to FOLFIRI.  All options are on the table.
I did some quick research on the PD-1 and there appears to be a trial by Merck in Philadelphia.  Side effects will have to be evaluated, of course.  I am feeling pretty good for the state of the disease, and I would preferred not to feel too much worse.

Again, I will pose the question:  has anyone else had the testing?  If so, what was the outcome...was it worth doing?

Again, thank you Percy for your help and information.  Have a pleasant week, Renee

Re: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Hi,

"rvb:  If I am understanding correctly, the testing offered a more directed approach to your treatment?  So it was successful as it appears to me, and good news for you.  I will bring this information to my Nurse Practitioner on Monday's appointment for her response.  As mentioned previously, I am not looking forward to FOLFIRI.  All options are on the table.
I did some quick research on the PD-1 and there appears to be a trial by Merck in Philadelphia.  Side effects will have to be evaluated, of course.  I am feeling pretty good for the state of the disease, and I would preferred not to feel too much worse."

Yes, it offers a more personalized treatment ,more specific response to each individual CCA patient.
The problem is not all the oncologist will treat your CCA using gene sequencing,only those in large cancer center or university will do it. So your nursing practitioner may not FULLY understand the underlined FUTURE value of "the next-generation gene sequence" . So be prepare for that.
But compare to just one year ago, to me, there is definitely more oncologists order the test.
For me ,since my CCA already recurred 3times, I viewed the " the next- generation gene sequencing" will be a future road map for my chemotherapy treatment as well as I always keep an eye on interventional radiology and immunotherapy.
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: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Hi RVB~

I did have my tumor cells genetically tested by Foundation Medicine.  Of 236 gene mutations tested, they only found IDH2 to be positive, often the case in cholangio.  The criticism of this test is that even when mutations are found, the targeted agents have not yet been discovered most of the time.  There are some studies pertaining to IDH2 that may lead to pertinent drugs in the nearish future, however.

BTW, I completed four rounds of FOLFIRI after seven months of Gem/Oxi, following a recurrence, and the most recent treatment was pretty tough.  I had some stomach-back cramping and low grade fevers, but not much trouble with diarrhea. Scans show that the lesions have grown, so a new plan will be discussed tomw, which may include MEK inhibitor trials or Tarceva-Avastin, or who knows what else.

Best of luck,
Regina

Re: The Use of Biomarkers-A Chemo Sensitivity Report For Cholangiocarcinom

Hello Regina, thank you for your response!
Since my most recent entry on this thread, I have started the FOLFIRI at a 25% dose reduction as my onc knows Quality v Quantity is my goal.  I started my 2nd treatment yesterday and am on the pump until tomorrow.  So far, I have not had the horrible experience I anticipated...phew.  But it is still early in the game.  I shouldn't be due for my next PET/CT until October, but will watch my CA19-9 for any further increases.  I am one of those that can rely on the CA19-9 as an indicator of success or failure of treatment.

I am applying to NIH for their GI TILS trial, and because of my onc's resistance to the trial to the point that I had to do something as my markers were rising, with the start of the FOLFIRI, it has to fail before they can put me on the trial...that is if I qualify in the first place.  So my plan is to stay on the FOLFIRI for 4 cycles and take 1 cycle off before we go away to Bermuda for 2 weeks.  That would give me the 28 day chemo wash out necessary to start the trial.  And also gives the week before we leave to get the biopsy I would need for the trial, or I would want anyway to check for the genetic sequencing.  Sounds like a good plan to me, but "man plans, God laughs", so who knows.

The reason I need another biopsy is that it had been sent out so many times for evaluation, there is not enough tissue remaingin to evaluate.  And with all that slicing and dicing, no one thought to check for genetic sequencing?  But thanks to all of the information on this site, I know what needs to be done this time.

Does anyone know of success with FOLFIRI?  It does not look to be very promising.  On the bright side, however, that lack of success would get me on to a trial quicker...if I qualify.

BTW, what happened with your MD Appt yesterday?  Any new plans in your future?  I they come up with something that can help.  Do keep us in the loop.

Take Care, Renée