1 (edited by PCL1029 Mon, 17 Mar 2014 18:42:00)

Topic: My personal case study & history of cholangiocarcinoma treatment

Hi, everyone,
Let me share my up dated story as of 3/17/2014 and hopefully of  benefit as an ongoing case study in intrahepatic cholangiocarcinoma.

At age of 57, I had acid reflux off an on for a couple years taking Pepcid ,the H2 blocker  Night sweat  may be once every several months ; Lost weight for about 5 lbs over several months during 2009. ,drink 3-5 cups of coffee daily. I am also a chronic hepatitis B carrier since birth.) other than that, no specific symptoms, may be at time feel a bit tired .

Mr. Leung is a 63-year-old male with recurrent cholangiocarcinoma and a history of chronic hepatitis B. His oncologic history is well documented by Jessica Mitchell, CNP, as follows:

1. May 2009, diagnosed intrahepatic cholangiocarcinoma, stage IIB.

2. June 2, 2009, left lobe resection with clear margin and RFA to two metastases in the right lobe. No known residual disease.

3. August 2009, started gemcitabine three out of four weeks and had treatment for 14 months.

4. October 2010, stopped gemcitabine and was followed with scans.

5. April 2011, CT scan showed a new lesion followed by an MRI which showed two lesions.

6. May 10, 2011, chemoembolization with mitomycin C and Adriamycin. This was followed by May 23, 2011, RFA to one of the lesions. The second lesion could not be treated as it was too close to the hepatic vein.

7. October 24, 2011, resection performed of the lesion, but a positive margin because it was touching the hepatic vein.

8. November 24, 2011, through November 2012, given Xeloda over 12 months with overall good tolerance.

9. June 2013, scanning showing recurrence of disease.

10. July 2013 underwent PEI (percutaneous ethanol infusion) to liver metastasis times two.

11. August 2013, KRAS testing showing overexpression of EGFR overexpression. Started on Tarceva, overall had good tolerance, although did experience slight weight loss, thinning of hair, and mild diarrhea.

12. August 2013, underwent cryotherapy to a nodal mass in the right crux of the diaphragm and IVC extending around the celiac trunk.

13. January 2014, increasing CA 19-9. Re-evaluated at Mayo Clinic for possible treatment options including SBRT, TheraSpheres, or additional radiofrequency ablation and chemotherapy. Evaluated by Dr. Nagorney of General Surgery, who did not recommend surgical resection. An MRI of the abdomen demonstrated right hepatic lobe masses under the diaphragm and along the posterior margin of the liver adjacent to the right hepatic vein which is suspicious for residual cholangiocarcinoma.

God bless.


_______________________________________________________________
So far thru my research,there are no effective chemotherapy for recurrence.

RFA, microwave ablation , IRE (irreversible electroporation),TACE (chemoembolization), PEI (percutaneous Ethanol Injection),cryoablation and radioembolization with y90(glass or resin) are non-systemic interventional radiation treatments that can extend my survival time as an  intrahepatic cholangiocarcinoma  patient and the PDT  and IMRT (ie: Cyberknife),,nano knife,SBRT  are treatments for Extrahepatic cholangiocarcinoma  patients.

But none of the above treatment choices is a cure for CCA.

Even Only surgery can provide the only possible cure for CCA and in my case, the CCA COMEs AROUND every 20 month after resection with chemotherapy.this is not a long term cure but a chronic disease that require a lot of decisions to be made after reading and attending a lot of seminars.it is indeed a roll-coaster  ride.
the recurrence is high (50-75%) for CCA.But if you can discover the tumor recurrence earlier (ie: sizes of the lesion or tumor</=3cm and not more than 3-4,even with a few  lymph nodes involvement; IRE, cryoablation, RFA with chemoembolization can extend the life and qualitity of life for those who is not resectable.
Again ,the KEY is EARLY DETECTION by CT ,MRI (both are for structural change of the tumor and if the scan is positive,then follow up with a PET/CT to find out whether the tumor is active

Finally, as  recurrence is very common (50-75%) , try  to view CC as a CHRONIC disease like our Marion said may not be a bad idea, like hypertension or diabetes ,then the negative  psychological  and emotional impact will be much less  for the patients as well as for  the caregivers when we first heard of this  disease and we can devote more positive energy to prepare learning and treating the cholangiocarcinoma at hand.

For understanding about ultrasound ,CT,MRI and PET scan see the link below.

http://www.cholangiocarcinoma.org/punbb … 365#p47365

For systemic chemotherapy individual agent and the regimen,the link below May be of help.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

For intervention radiology option, check out the link below

http://www.sirweb.org/patients/liver-cancer/

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: My personal case study & history of cholangiocarcinoma treatment

Thank you very much for that.

Jason

Re: My personal case study & history of cholangiocarcinoma treatment

Thanks for writing your story out. You have a very easy to read way of writing and provide us with so much important information. So keep on keeping on.

Cathy

4 (edited by marions Sat, 29 Jun 2013 00:35:04)

Re: My personal case study & history of cholangiocarcinoma treatment

Percy....First and foremost - Happy Birthday to you.   Sure wish you had mentioned this at our advocacy dinner in Chicago.  We could have belted out the Birthday song and watch you blow out the candles.  ASCO generally is prior to your special day, but that should not hold us back from celebrating early.  We also missed out on a great dessert!!!!  Well, next year we have some making up to do.
I also want to thank you for all you have done for the foundation, for the members and non-members visiting our site and for those searching out your advice personally.  You are a kind, caring and thoughtful person in every way.  (I observed you tending to another advocate and making sure that she safely returns to her hotel.)
The above information and your prior postings have allowed us a greater understanding of this disease, the available treatment options and the possible decisions some will have to make. 
I have great hope that the interventions chosen by you will be successful and that you will pass the median life expectancy by a long shot.
Hugs to you,
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: My personal case study & history of cholangiocarcinoma treatment

Hi Percy,

Many many thanks indeed for that. I know that it will be of great help and use to a ton of people so thank you once again for posting all of that. And I too want to wish you a belated happy birthday as well! Next year I hope to be there at ASCO with you all and I so look forward to belting out happy birthday to you!! My singing voice is terrible though so I am warning you in advance!!

I can't add to what Marion has said but I just want to echo everything that she has said. You are a star Percy and you are much loved by us all. And of course, I thank you so much for everything that you do for us all.

Big hug for you,

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: My personal case study & history of cholangiocarcinoma treatment

Hi Percy and a belated HAPPY Birthday from me as well! I hope Gavin can come in next ASCO as he will come out here after ASCO. If he can't sing for us maybe he can RAP??

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.

7 (edited by PCL1029 Sat, 29 Jun 2013 12:59:11)

Re: My personal case study & history of cholangiocarcinoma treatment

Hi, Marion,
Thanks for the kind words.BTW, where are the pictures from ASCO 2013.I think Barbara and others deserve to see how nice they work at the booth.

Marion,the way it looks is l will try out most if not all the TX options for ICCA.

Resections,chemotherapy,targeted therapy(not yet)chemoembolization,PEI, RFA,and possibly radioembolization and IRE. the only thing left if all the above is not working is the TIL treatment thru NIH,but it must be a active tumor inside me in order for them to get tissue specimen for growing the lymphocyte  for  for the procedure.

I am still debating about the use of radioembo,even after today's consult with the interventional radiologist. I show her the data done by 2000miler of the 12 patients on this web site who had radioembo and the result. She kindly said to me. Most of them were required large dose for their conditions due to size of the tumor ; or the combined tumor burden of small tumors in the liver . and that is why the outcome for that data is not showing the better result as other published articles .But  Percy, you are  healthy and the radioembo treatment area for you is only  one area about 2.5cmx2.5cm, much smaller than most of the patients who will use radioembolization.And there is only about 6% (below 20% is consider safe to use radioembo.) lung shunt for you for the possible development of radiation pneumonitis.
So, I feel more comfortable on using radioembo,but I am still waiting for other 2nd. opinion to come in and I will email to both the interventional radiologists(my local one and Fred Moeslen in Univ.of Maryland and let them talk to each other as suggested  by my local radiologist Dr. Carvillo. She is very kind to offer this option so she will make sure that I can have the best treatment option for me. Well ,it surely pays off for working in the medical field for the networking advantage. And I am sure Only God's grace can provide such abundant consultation opportunities for me as well as the chances to go to all the medical conferences that provided to me  by this foundation to learn about this disease.But at the end it is still up to His decision for how long  of my journey on earth will be.
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: My personal case study & history of cholangiocarcinoma treatment

Happy birthday Percy!

I really cannot add much to what Marion already wrote except that you are a blessing to this site and so many people benefit from your insights and willingness to talk so openly about your own experience.

Best of luck with whatever treatment you choose.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: My personal case study & history of cholangiocarcinoma treatment

Happy Birthday Percy!
You are such a blessing to so many. Thank you for sharing your story. Your the only other person I know that has had two resections so I feel like we have a common thread.
Bless you
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: My personal case study & history of cholangiocarcinoma treatment

Hi, everyone,

I have decided and will use sectional radioembo for the tumor  bed /clips areas(2.5x2.6cm of no defined solid tumor appearance); and will use RFA on the  tumor(1.5cmx1.6cm with solid tumor  enhanced ring appearance) near the hepatic vein which make my case unresectable at this time.
If the PEI will not work  at the lymph node after repeated injections, then I may seed help from either IRE or surgery to remove it. This is the one area that I worry the most at this time.
BTW, Thanks for the happy birthday cheerful congrats; But my actual birthday is Oct.29 as the numbers of my sign in ID" PCL1029" indicated. It may be some how ,some where ,I give the wrong impression of such. Any way ,cheer to you all too. I am very fortunate to have friends like you.
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: My personal case study & history of cholangiocarcinoma treatment

Hi Percy,

Many thanks for letting us know about this. I will of course be keeping everything crossed for you throughout your treatment here and I so hope that it all goes very well indeed. And you know that all of us are in your corner with you as well and I'll even get my cheerleaders outfit on too!! And I hope that you are keeping cool in that heatwave that you are having in the US.

Stay strong my friend, and cool too!

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: My personal case study & history of cholangiocarcinoma treatment

Percy,

Best of luck with the upcoming treatments!  And thank you so much for sharing your journey in such detail, your strength is inspiring.

You have my best wishes, and I hope you will have a speedy recovery from the procedures.

Julie

Re: My personal case study & history of cholangiocarcinoma treatment

Percy,

Sending you positive thoughts and the best outcome possible for your upcoming treatments.  Thank you being so helpful to everyone on this board by sharing your own experience.  I hope you know what a gift that is...

Please keep us posted on your progress.. you are in my thoughts.

Jeeyoung

Re: My personal case study & history of cholangiocarcinoma treatment

Percy,

Thanks for keeping us updated and wishing you the best with your treatment!

Take care,

Susie

Re: My personal case study & history of cholangiocarcinoma treatment

Dear Percy,
I wish we had celebrated it at ASCO - even if it is in October - Celebrations are great and good people like you deserve to be celebrated.
I am very sad to hear the news of your cancer returning. I wish you all the luck in the world in your treatments and I will keep you in my thoughts and prayers. I know that you are an amazing and very spiritual man and this will help you through. Through all the conventions we have attended together, we have had many laughs and great conversations. I have learned so much from you. I am still enjoying the "herb soup" you recommended to me.
If there is anything I can do for you, please email me and let me know. Until we meet again - you will be in my thoughts and prayers.
Hugs,
Barbara

Re: My personal case study & history of cholangiocarcinoma treatment

Hi, Barbara,

Thanks for such kind words,I enjoyed those days when I had the chance to meet you and talk to you in such a way that we can both enjoy the contents as well as the speculations that may have happened in our conversations. We care about our own situations as well as others who are on this discussion board.
I am still waiting for the chance to have that 5 pound lobster specially prepared by you or your son in Boston soon.
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: My personal case study & history of cholangiocarcinoma treatment

Percy,

That day will come, my friend, and we will be happy to show you some great New England hospitality.
Hugs,
Barbara

Re: My personal case study & history of cholangiocarcinoma treatment

Are you kidding?  Lobster?  As you may know, I just returned from Boston, presenting at DIA titled: Optimizing Trial Feasibility by Leveraging Electronic Health Record Data and Engaging Investigators and Patient Advocacy Groups.
Flew in, presented the next day, and returned to California right after.  But, I took the oppoortunity to eat lobster twice.  So please, don't forget about me when it comes to eating lobster.  Heck, please don't forget about me, period.
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: My personal case study & history of cholangiocarcinoma treatment

Hope your presentation went well Marion. And how could we forget about you!    Eating lobster twice, sounds like a good trip then! I take it that lobster is tasty then?

Hugs,

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: My personal case study & history of cholangiocarcinoma treatment

Hi,Gavin and Marion,

Both of you make me more hungry now for the  lobster.
Marion, have your tried to eat at the oldest restaurant in American  at Boston called the UNION? located in downtown Boston? yummy yummy...
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: My personal case study & history of cholangiocarcinoma treatment

Marion, Lobster, one of my favorites. I could never forget about you but now I will probably associate you with lobster? Ha, Ha. I remember going to a Bar there that was the smallest Bar in the World. I believe it was 5' x 8'. Hear it was not there anymore. Oh and it was first trip to Fielines (sp) basement. OMG What a riot. Women actually fighting for Sale clothes. Glad you are back safe and sound and I am sure your speech wowed them!

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: My personal case study & history of cholangiocarcinoma treatment

Go get yourself a lobster Percy! And have one for me as well. Never tasted it before but I'm guessing they are mighty tasty, and mighty expensive too! Go enjoy Percy!! smile

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: My personal case study & history of cholangiocarcinoma treatment

Gavin!  No lobster, ever?  How can that be?

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: My personal case study & history of cholangiocarcinoma treatment

Hi, Gavin,
If you come to ASCO next year ,I will personally see to it that you will have lobster and king crab . No joke, then I will swing by the soldier field and take a couple pictures for you at the BEARS home court. Then we will go to Lainy's retreat and eat the lake trout for picnic.
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: My personal case study & history of cholangiocarcinoma treatment

Wow, count me in!!

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.