1 (edited by PCL1029 Fri, 20 Dec 2013 21:27:30)

Topic: Just of Concern About the Ways to Find Treatment.

Hi, everyone,
Knowing that ourselves or our love ones have Dx of CCA is worse; but trying to do or obtain the same treatment that someone just mentioned on this message board that may fit our situations are of concern if not concur with our oncologists or 2nd opinions.  and the results may be worsen than before.

Please remember, nothing come easy if we do not gain knowledge thru studying  this disease, even so,it dose not guarantee we will find a cure soon.

The following steps that I learned  may be of help if interested.
                            Diagnosis of CCA
Usually start with oncologist, but ask them to refer you for a surgical consult too.
1.  Surgery consult first if possible by   liver surgeon
(A)-----Resectable  ,then surgery and follow with chemoradiation ,adjuvant chemotherapy or Targeted agents treatment ,CT or PET ( oncologist choice).  (B)-----Unresectable , then

2. a. consult with interventional radiologist(IR) --( for RFA, microwave ablation, IRE, chemoembo ,radioembo or cryoablation,) and/or
    b.  consult with oncologist radiologists (radiation as SBRT,IMRT or PDT etc)

3.GI specialist to put in stents if needed to relieve symptoms of jaundice,itching ,ascites etc.

4. Medical oncology consult with an oncologist,both for resectable (usually after 2-3 month of the surgery) and for unresectable CCA for cancer  chemotherapy to extend the life of the patient.
When current treatment plans exhausted ( either too much side effects or  the therapy don't work );  ask oncologist to recommend a clinical trial that may fit your situation the best. Or you can contact the clinical trial coordinator.

5. for planning future treatments, consider a "next-generation sequencing" (NGS) genomic profile which offer by the large teaching hospitals in the States.

6. other palliative  treatment or hospice as advised by medical professionals at the end of the journey.

7. DO not forget "No treatment "is another option too for "quality of life" rather than "quantity of life" in treating this disease.


Since recently , cancers treatment by the top cancer centers are using " Next generation sequencing genomic profile" as the tool to help oncologists to provide a more custom fit and personalized treatment for the specific patient. And more and more  of the clinical trial agents are based on " targeted gene mutation or over expressions". It may be of benefit to get one done as a road map for future Treatment.
Yes, patients can join any clinical trials they are qualified. But if you know or your oncologist know which one is a better trial for you, than you will save time and prolong your quality of life much better.
In short , I hope the above steps and comment helps; and as always,consult your doctor before change any treatment plans.

If you want all the above, the best way is to get a multidisciplinary team approach  consult for CCA, thru Mass General,Mayo Clinic, UCSF, USC, or MD Anderson at Houston, Washington University in St. Louise ,Columbia Presbyterian in New York,others like John Hopkins, Sloan-Kettering , Emory in Atlanta,can do the same if asked.
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: Just of Concern About the Ways to Find Treatment.

Hi Percy,

Brilliant post and loads of great info in there for everyone! Thanks so much for that and I know that it will be of great benefit to many, especially newcomers and their loved ones to all of this. And that is so right what you say about it being hard to obtain same or similar treatment to someone who has posted something that they have had on the boards. Thanks once again for this Percy!

Stay strong, and seeing as it is no doubt getting chilly over your way, stay warm too my friend!

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Just of Concern About the Ways to Find Treatment.

Percy,

You are relentless in your desire to help others while you are dealing with the same horrible disease.  I can't thank you enough for all the info you have passed on to us.

Thank you from the bottom of my heart.


Peace & Love,
Mary

Re: Just of Concern About the Ways to Find Treatment.

I honestly wish I had found this site when we first got our diagnosis rather than weeks later. Three are so many more questions that I would have asked and things I would have followed up. I feel so blessed that we lucked into the treatment that we have because it could have been so much worse. There were so many steps we did without even really knowing what was going on. And for me as a nurse that is horrible to think. I was so overwhelmed that I really shut parts of my brain off.
Thanks Percy for passing that on. It will help others and maybe even me down the road.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Just of Concern About the Ways to Find Treatment.

Thanks, Percy.  I know of one abstract for advanced Cholangiocarcinoma will be presented at The Molecular Markers Symposium in Boston this month.  We will make sure to post it on this site as soon as it become available.
Hugs,
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: Just of Concern About the Ways to Find Treatment.

Thanks for this post. My husband was recently diagnosed with ICC and this website has been helpful as we start this journey.

Re: Just of Concern About the Ways to Find Treatment.

HELLO SURFER 1 and welcome to the best little club in the world that no on wishes to join. We are glad that you found us as this IS the best place to be for support and advise and extremely amazing people who really care. Can you tell us some more about your husband like what his diagnosis was, his treatment plan and where he is being treated. Wishing you the best and looking forward to hearing more.

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: Just of Concern About the Ways to Find Treatment.

Surfer.....thanks for joining.  We are pleased to have you on this site and are looking forward to hearing more from you.  Have treatments started for your husband?
Hugs,
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: Just of Concern About the Ways to Find Treatment.

Percy,
Thank you for your brilliant research and information. Yur dedication to helping this CC family is amazing. May God continue to bless you.
Hugs
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: Just of Concern About the Ways to Find Treatment.

Hi,  Lisa,

Thanks for your compliment.
You know I have no choice, I am a patient too and I know how lost I was when I tried to find answers for this awful disease  54 months ago. I found nothing medically speaking that was really telling me what to do,step by step, who to see next and how to handle this roller coaster CCA.  But thanks to this foundation and all of you who are medically interested in this disease, I try to be involved with this disease as much as I can, knowing that the chance of getting a cure or a better tolerated treatment is much closer than 54 months ago. The goal for me as well as for you and others is that ," try to hang around as long as possible so we can be all benefited from the success of the current research clinical trials. "
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: Just of Concern About the Ways to Find Treatment.

Hi, everyone,

The link below shows part of the reason for all of us,the patients,"try to hang around for as long as possible so to be benefited from the fruits of the new era of cancer research."

http://www.ndtv.com/article/world/break … eld-432482

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: Just of Concern About the Ways to Find Treatment.

"knowing that the chance of getting a cure or a better tolerated treatment is much closer than 54 months ago."

"new era of cancer research."

Percy...I think I detect a higher level of optimism about the future.

I somehow feel more hopeful about all the new approaches coming out.  If you feel that way too, that makes me feel even better!

Jason

Re: Just of Concern About the Ways to Find Treatment.

Unfortunately we were not able to staff the below event:
http://www.aacr.org/home/scientists/mee … utics.aspx
however; we will make sure to stay updated on the results.  Amongst others, Dr. Javle and his team will present the below abstract:
Next Generation Sequencing yields promising targets in advanced cholangiocarcinoma (CCA)
Hugs,
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

14 (edited by PCL1029 Tue, 15 Oct 2013 19:03:22)

Re: Just of Concern About the Ways to Find Treatment.

Hi, Jason,
Yes, I think ,as  patients of CCA, we are at cross roads of new discovery in cancer research and development. It all started at 2010 ASCO when they adopted genomic profile as an recommendation and foundation for future cancer research and drug development. Adding to that, the fast and furious development in the immunology as a promising  cancer fighting therapy. And a lot of tyrosine kinase inhibitors,MoAbs and immuno agents have been developed and await for human clinical trials. That is why this year's winners of Nobel prize of medicine and biology are so important because of their contribution to medicine allowed most scientists and researchers to predict, propose,  theorize and  construct protein molecules and other small molecules on computers to treat cancer and other diseases.

Hope is here, Jason ,and our dream will come true much faster than than several years ago when the only option besides surgery and radiology was chemotherapy.But we still need a lot of luck ,or in my case, God's grace,in doing so.
I believe the situation now is very much like  in the 1980s when HIV was regarded as deadly and no cure;but during the 1990s and early parts of the 2000s things turned around from the discovery of the antiviral drugs and the resulting very effective drug combination "cocktail", finally provide the long term solution for HIV and made HIV treatable . I believe the same will apply to our disease .
so hang in there and good news will come.

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: Just of Concern About the Ways to Find Treatment.

Percy, all I can say is "from your mouth to God's ears"! Hope you are feeling ok!

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: Just of Concern About the Ways to Find Treatment.

Hi Percy,

Thinking about you and hoping all is well in California!

-Karen

Re: Just of Concern About the Ways to Find Treatment.

Percy,

Great job with starting to develop a "roadmap". I know we will make this happen.

Carl

Re: Just of Concern About the Ways to Find Treatment.

Percy,
I wish you all the best and I hope those new trials will prove to be successful