Re: My personal case study & history of cholangiocarcinoma treatment

Marion,
We could never forget about you. The offer is open for you also. We talked about getting together when you came to Boston - but as you said it was a quick, busy trip. Next time.....
Happy 4th of July everyone. Hugs from NH,
Barbara

Re: My personal case study & history of cholangiocarcinoma treatment

I know Randi, very strange but they are sooo expensive here! You get the frozen ones quite cheaply but I guess that they would not be as good as the fresh ones and to be honest, I'd rather wait and try a really good fresh one!

Percy, that sounds good to me!! I watch Deadliest Catch on Discovery and see what these guys go through to catch the king crabs and they look very tasty! That sounds like a plan my friend then Soldier Field as well, you KNOW I'd love that!! 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

There is something to be said for the Maine Lobster; it is soooo delicious.  No, Percy, I did not visit the place you had mentioned; but will do so next time (whenever that may be.)  My husband's surgery took place in Boston.  During his later hospital stays I snuck him out, drove to a tiny fishing village where the pots were steaming with fresh lobsters and we ate to our hearts content.   It was a funky place, but the lobster was delicious; a well deserved treat for my husband.  We returned to his room with a big smile on the face. Oh, these wonderful memories!
Hugs to all,
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, everyone,
I have just updated my journey above,will provide more info when my energy level return.
Gettin old , getting tougher each time for such simple procedure.but I get rid of the CCA ,Ihope this time.
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. We miss you but it is more important to rest and get your energy level back up. Sending you many prayers and thinking about you often.

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

Percy....please rest up.
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

Thank you Percy! Now go put your feet up, have a cuppa or a cold drink and get some rest!!

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,
Get some rest. You are in my thoughts and prayers.
Hugs,
Barbara

Re: My personal case study & history of cholangiocarcinoma treatment

Percy,
Hang tough!  We are thinking positive thoughts and cheering fot you!

Jeeyoung

Re: My personal case study & history of cholangiocarcinoma treatment

Take care of yourself Percy!

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,
Thanks everyone' concern..
I feel my energy come back a little bit after 4 days  of fatigue and sleeping.
Lack of appetite is the reason, I think. Other than that, no pain,no N/V.
It was a simple 4 hour RFA and biopsy, but I am not the Percy that I was 52 months ago, the disease has taken a toll on me even I am tumor free at this time. But I still consider it is God's Grace that  I will be still around to try one other procedures and report to our members on this board as a patient's own experiences.
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, everyone,

I also update my story above.
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,

I continue to read your updates and hope things are going better for you. You've had a tough road to travel yet you do it with a desire to help others who find themselves traveling similar roads. What courage that takes.

Hoping you get the rest you need to continue your recovery.
Carl

Re: My personal case study & history of cholangiocarcinoma treatment

Hi Carl, may I intrude for a minute. Beautiful post you sent Percy and I would  like to add, whatever Percy does he does it with grace and dignity!

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

Hi,Carl and Lainy,
Thank you both for your compliment.i donot deserve such kind words.
In my mind, I always know unless God's grace still graciously upon me each time for my recurrence , I will not be here today. In short, I am his instrument to explore this disease, to fine ways thru me and others to increase the awareness and uptodate knowledge for those who need of such info.
Yes, the journey is tough both physically and emotionally .
Again thanks for the kind words.
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,

Really glad to hear that you are feeling a bit better after these 4 days and I so hope that this continues for you. And I hope that your appetite continues to improve as I know how much you love your food and cooking! Thank you Percy for everything. And you so do deserve the compliments and nice words from everyone. You are an inspiration to us all.

Stay strong,

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,
I agree with everyone. You have been so helpful and inspirational to us with your posts and research. I, too, am glad you are feeling better, and I hope your appetite continues to improve.
Prayers that this treatment is another blow against cancer.
Hugs,

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: My personal case study & history of cholangiocarcinoma treatment

Hi, everyone,

I have revised my case study and medical history as above  after I saw my oncologist yesterday; so now the treatments are mostly done within the last 45 days ( from the Dx of 3rd recurrence ; consutations of each available arms of the treatment triangle of surgery, interventional radiology and oncology and finished all the required treatments like RFA, chemoembo, PEI  and oncology  to start Tarceva daily. I hope the adjuvant targeted therapy will work miracle and will again chart a new course on my search for a better treatment for this disease.

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,

I've read your updated case study and medical history up to date.  First of all, thank you so much for sharing in such detailed personal yet profoundly helpful information for others.  I have nothing but utmost respect for you with your knowledge, proactive attitude and fighting spirit.  Although I have much limited knowledge with this terrible disease due to very short personal experience with it, I am learning more and more each day from reading posts like yours on this site.  Best of luck with your second and third opinion on the future treatment to beat this beast!

Best regards,

Jeeyoung

Re: My personal case study & history of cholangiocarcinoma treatment

Hi Percy,

Many thanks for your update and thanks as well for your advice about looking at the labs reports and discussing them with oncs with regards to chemo's and targeted therapies, that will be of great help to others. You know that my fingers are crossed for the Tarceva and everything else to work for you and I hope that the treatment goes smoothly as well. You are going to majorly kick some CC butt here my friend!

Stay strong, and cool!

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, you are an invaluable man and I just want to wish you well on the new venture with Tarceva. If a miracle from science can work for the miracle of a human, then it's going to be you. Someone has to bring CC to it's knees, why not you? You know you have the world cheering for you!

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

My sister has a klatkens tumor which is about 6 cm. she will be heading to St.Louis to meet with a Dr.Chapman to have a possible resection using   Neoadjuvant  chemoradiation. Has any one has any experience with treatment or Dr. Chapman?

48 (edited by Lainy Sat, 27 Jul 2013 23:29:58)

Re: My personal case study & history of cholangiocarcinoma treatment

Dear Daisy, if you go to the User Search Engine and type in     JATHY1125
you will get posts from Kathy who had a Transplant at Barnes Jewish Hospital in STL and she cannot rave enough about Dr. Chapman. Your Sister is in excellent hands. I think if you post a new topic under General Discussion you may get more responses as your post could get lost on this other longer thread. When is the big meeting? Wishing your Sister the very best and please keep us updated on her progress as we truly care.

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

Thank you I just posted own the general board...Thank you

Re: My personal case study & history of cholangiocarcinoma treatment

Hi Percy,

Great to see you again and many thanks for your latest update. You so know that we are all cheering you on and hoping that the PEI works well. And of course, keeping everything crossed for your scan results too!

Stay strong,

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.