1 (edited by PCL1029 Thu, 27 Jun 2013 14:26:42)

Topic: TO all Moderators on this Board and all my Friends Here

Hi,
thanks for helping out while iWas absent for a couple of weeks.
First, I am fine, as Lainy's. poem quoted below;

                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes.

My cancer has returned and resection at this point is not an option at least for now. So if you or the caretaker hear about this DX. You will like me, at that moment , after hearing such a disappointment answer, my heart sinks almost down on the floor for a while,  I don't know what to do, and hopeless for a moment since I have learnt a lot from this web site and know the odds are not in my favor. So,I ask for a living will and power of attorney for medical directive,oh, and a five wishes to fill out at home. But after a while, when I think about  Lainy's poem. I think, let me get a couple other opinions first, I wrote to University of Maryland for an IRE consult; I drove to a nearby hospital that I have worked for and make an interventional radiologist (IR) consult hoping that they could do something for me.( my new tumor is located near the diaphragm and very close to the only major hepatic vein left, so that is the reason for no resection, last time ( the second resection 18months ago, the IR doc. said no for RFA, ) ; so my hope was not that much better for that procedure can be done this time.
Well to my surprise, she the IR doctor said she can do the RFA this time along with chemoembo and one month later, she may do a sectional radioembo too.i will discuss the use radioembo on me more with her before the procedures since the result is not that great among our members.
BTW , Dr Roberts At Mayo would like me to send the Scan discs to him for a 2nd opinion before their multidisciplinary team. I did not ask for that, I just want to donate my tissue to them just in case resection is possible. He is very kind to personally offer this 2nd opinion  for me, He also asked for my blood sample , so thanks for everyone who involved in this process for me. At least physically I can do something actually may be of benefit down the road to benefit others who will come after me in addition to what I am doing now on this message board.
At the end, what I try to say is ,yes, this cancer is tough, and most of the time this disease will throw a few curve balls at you, it is tough to swallow, but, as long as you try the best you can and appreciate the friendship and love of your family and friends, keep an open mind and a positive outlook of your future,enjoy whatever you can , keep up to date of knowledge about this cancer , do not force yourself to accept what other people tell you,( that is including me, remember ,i am only a patient like you after all.);and follow what the Holy Spirit will guide you if you are a Christian. Seek spiritual comfort what ever your religion is; Then some how ,some where, you will always be with all of us no matter what the outcome 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: TO all Moderators on this Board and all my Friends Here

My Dearest Percy, first when I saw your Post here with all the Capital Letters, it took me a while to get up the nerve to open it! I was sad reading it but then I saw you do have some options and if anything can be done you will find it and do it. I have decided that the time is not here yet for sadness, but for us all to get your cheering section going. I will cheer from the highest building and I will pray from the depths of my heart. Percy, you have helped so many of our family members that I just know you are going to find an answer. And Teddy told me his restaurant is way too busy right now you are just going to have to wait and it may take quite a while. Remember, when the going gets tough, the tough get going. I am also sending you a mountain of love!

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: TO all Moderators on this Board and all my Friends Here

Hi, Lainy,
Thanks for your poem and get well message.
Your poem is the one that reminding me what will be lies ahead and be prepared. You are indispensable .

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: TO all Moderators on this Board and all my Friends Here

Hi Percy,

First of all, let me say that it is great to see you here again! I was worried that something may be wrong as we had not seen you here for a bit and I said that to my mum yesterday. Then I logged into the site first thing this morning and
was very happy to see your name pop up again, and then saw the title of this post and thought that something was up.

Like Lainy I was very sad on reading your post as this is not the news that anyone wants to hear. But I am elated to hear that you have some other options now as well. And it goes without saying that I will be here cheering you on all the way and sending as many positive thoughts as is possible over the pond to you!

Yes this cancer is tough and you know that as well as anyone. But you also show everyone how to fight and seek out treatment and options no matter how many or what type of curve balls are thrown at you. I know that you are a very modest man Percy but the help and advice you have given to so many is invaluable, and I know that you will continue to give advice, help and support to us all for a long time yet!

So your boxing gloves are on and your corner is big. Good, because there are a ton of people in your corner with you! We are all here with you Percy and remember that I am looking forward to sharing a drink with you when we win that Superbowl again!

Stay strong 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: TO all Moderators on this Board and all my Friends Here

Dear Percy,

I am sorry to read your news but the opinions, support and desire to treat you is a positive thing.  They say 'what goes around comes around' and all that you have done for others in the battle against CC is about to come back to you tenfold.

Clare

In the stars now . . . .

Re: TO all Moderators on this Board and all my Friends Here

Percy,

I too was a little nervous opening up your post and when I read the beginning I was sad.  But your attitude, your persistence, your faith all shine through. You are an inspiration to those on this site who are going through similar things.  Your navigation of the medical system, even when you are frozen by sadness and fear, is admirable.

Glad to have you back.  You continue to fight the good fight and I will keep you in my thoughts and prayers.

Hugs,
-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.

7 (edited by Darla Wed, 26 Jun 2013 08:59:27)

Re: TO all Moderators on this Board and all my Friends Here

Dear Percy,

Thinking of you and hoping for the best for you as always, whatever that may be.  Your great attitude will help you through this.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: TO all Moderators on this Board and all my Friends Here

Percy,
I, too, am sending all my prayers and hope your way. You are my hero... Always championing for the cure and helping so many find their way through diagnoses. I have found many of your posts to be invaluable. And I know you will persevere until you find the right course of action again. Unfortunately, you have to do this again.
And I agree with Lainy: Teddy's restaurant is just too busy to fit you in for a good long time. You are still needed down here to show us how to be a responsible patient.
Good luck with your appointments. May you receive hopeful, positive news.
Many 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: TO all Moderators on this Board and all my Friends Here

Percy,

From the first time I came to these discussion boards three months ago until now, I've observed how much you do to help others. You are truly an inspiration to be able to work through your own challenges while being there for so many others.

I wish you the best as you go through your next round of treatment. Please know there will be many of us thinking of you and wishing you great success.

Carl

Re: TO all Moderators on this Board and all my Friends Here

Dear Percy,

You are truly an inspiration to all of us.  Sending you utmost respect, regards and hope for your challenges.  Stay strong!

We will be cheering you on from everywhere.

Jeeyoung

Re: TO all Moderators on this Board and all my Friends Here

Percy,
You have been such a wonderful source of information and support to everyone on this board and I am so glad I finally got to meet you in person.  I know this is discouraging but I am confident that this is just one more challenge that you will overcome.  Take care and keep up the good fight!  Linda

Re: TO all Moderators on this Board and all my Friends Here

God bless you, Percy and just know that we are rooting for you. I know you will never give up on looking for different options to try. I will be praying hard for you.

Love,
-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: TO all Moderators on this Board and all my Friends Here

Percy,
I too echo all the loving and supportive comments so many have posted above. You are not alone. God bless you. Willow

Willow

Re: TO all Moderators on this Board and all my Friends Here

Percy,

You are in my thoughts. 

Isaiah 33:2

O LORD, be gracious to us; we long for you. Be our strength every morning, our salvation in time of distress.


-Karen

Re: TO all Moderators on this Board and all my Friends Here

Dear Percy,

I just wish to personally repeat what everyone has said. It takes a special and strong character to help so many other people facing the same challenge you are facing.

I am sad to hear this news but please continue fighting this disease like you have always done; with strength and courage.

Your words and comments have often given me courage and I hope we can do the same to you.

Teresa

16 (edited by PCL1029 Wed, 03 Jul 2013 18:45:22)

Re: TO all Moderators on this Board and all my Friends Here

Hi,

Thanks for everyone's prayer ,hugs and concern.
I had chemoembolization done yesterday to two of the areas involved;  I went home after a short stay at the post-op unit for 4 hours. I kept myself awake during the entire procedure( approx. 2hours) to learn how it is done and how I feel.(Benadryl IV and a low dose of Fentanyl injection was all I had) .Using CT scan to monitor and guide the catheter.The catheter( or wire) went in from the artery at the groin area. , fishing thru the hepatic arteries;using coiled stents to block off the area that did not need to be treated; and then they injected the adriamycin and mitomycin C into the affected area,-the tumor (1.5cm) and the nearby surgical bed area that had the tumor removed 18 months ago. The entire procedure was then done. They closed the groin artery with metal clips after applying pressure to the site for a while to stop bleeding. The interventional radiologist rechecked the injected areas  with nuclear scan to make sure the chemotherapy agents delivered to the sites  correctly. I went home the same day and ate a big dinner without any side effects(nausea,abdominal pain etc.) A prescription of Levaquin 500mg dailyx5days was filled and is resting at home until next procedure which is using ethanol to treat the only lymph node left a week later.
One thing I have concern is the 2 months period required  of stop taking capecitabine   contraindication before patient can have radioembolization.
I hope it is a relative contraindication and not an absolute one. I believe it is due to 5FU is a radiation sensitizing agent and thus will add additional liver toxicity when normal dose will be used. I will talk to the doctor to see what will she say about this.

7/2/2013 added: I talked to the interventional radiologist about the Xeloda precautions; she told  me that precaution is related to the integrity of the arteries (both the femoral and hepatic): in my case ,mine is fine when they performed the chemoembo,therefore my doctor knew and said I do not need to  stop the Xeloda when I will do my radioembo, a couple weeks down the road.(BTW I have decided to cancel and use RFA instead.)
BUT please remember,everyone is different and you should always ask your radiologist or oncologist first if you will do radioembo in the future for the Xeloda precaution.
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: TO all Moderators on this Board and all my Friends Here

best wishes to you in your journey !

Re: TO all Moderators on this Board and all my Friends Here

Dear Percy, I hope you can feel all of us pulling for you and if good wishes could cure, you sure would not need to be here now! Glad to hear you had a big dinner, that's a good sign all went well.

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: TO all Moderators on this Board and all my Friends Here

Percy....so glad to know that things went well for you.  You know that a tidal wave of hope for a total response it heading your way and thank you for always thinking of others by sharing the experience in detail.
Hugs and super big 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: TO all Moderators on this Board and all my Friends Here

Hi Percy,

Many thanks for letting us know about your chemoembolization and it sounds like it went well And I am very happy indeed to hear that it went so smoothly and that you are back home with your family now. Great that you enjoyed a large meal and I take that as a very good sign too. I hope it was that fish dish that you so love! I've got everything crossed here for you and a ton of positive thoughts are heading their way to you in the windy city!

Stay strong my friend and a big hug coming for you as well,

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: TO all Moderators on this Board and all my Friends Here

Percy,

All my best wishes to you for a speedy recovery from this and the upcoming procedures.  You've been an invaluable advocate for so many of us here, not to mention all the incredibly useful advice you've provided.  I hope this too shall pass, I am wishing you the very best!

Julie

Re: TO all Moderators on this Board and all my Friends Here

Percy,
Sending prayers for your healing. I am sad this cancer is such a tough one but you have such a great attitude and are so persistent.
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: TO all Moderators on this Board and all my Friends Here

Dear Percy,

I am very saddened to hear that your cancer returned. You are an inspiration and a hero for all of us on the board. You helped so many while facing your own challenges. I personally learned so much from you. I wish you the best with your treatments. I know you will leave no stone unturned looking for the best course of action.

Stay strong, my friend. You will be in my thoughts.

Hugs,
Eli

Re: TO all Moderators on this Board and all my Friends Here

Percy,
You are so brave, I would have passed out during the procedure. Thank you for being such a cancer hero!
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: TO all Moderators on this Board and all my Friends Here

Dear Percy

I don't get on these discussion boards as much as I would like, but I know something of your 'journey' through Gavin, and also know you are always very quick and generous with your helpful advice for others ...

You are such a 'warrior for the cause' (to quote Lainy's wonderful expression!), so I was truly sad to see that you are having to face such tough obstacles yet again.  It speaks volumes about your character to read that you made yourself stay awake during your chemoembolization procedure so you would know what was involved.  Astounding ...

From the posts here, it is obvious that you have many, many powerful positive thoughts coming your way - please know that they are coming to you from here in the UK, too!

I admire your incredible attitude, Percy.  May your God keep you safe ...

Helen xx

(From AMMF, the UK Cholangiocarcinoma Charity)