Re: My personal case study & history of cholangiocarcinoma treatment

Hi,Gavin,

Thanks for your concern, be sure to say hi to your mom for me.
In the next few weeks, i will spend more time on FDA related issues.
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

Dear Percy.
I just saw this thread this evening.  Although I read the original entry previously, I re-read it from the beginning through to the most recent updates.
I  apologize for bothering you with nonsense regarding the TCM/CAM topic while you are going through such a trying time.  I might suppose you would say it is a distraction, but I want to apologize none the less.  You post so many entries, I never noticed this thread.  It is hard to keep up with you smile
A few points I would like to make:
- Yes, kind sir, you DO deserve such kind words.  I cannot imagine where I would be without your diligence in researching this disease process.  Learning the information you have shared makes me look far more intelligent than I really am!  (I even wow'ed the nurses today at the office, giving credit to you even though they don't know who you are.)
- Indeed, you are an instrument of God, a fine tuned instrument at that.  And for that I am deeply grateful.
Please take care of yourself.  Although I haven't met you, I have a deep respect for you and the work you do that benefits this site.  Although there are only three Cholangio patients in our oncology practice, I made copies of the brochure to be made available to anyone at the practice that would be interested...just in case.  This site is a God send, and a wealth of information and support.
Take Care and Be Well, Renée
(Sorry to be so word-y!)

53 (edited by PCL1029 Mon, 19 Aug 2013 19:11:58)

Re: My personal case study & history of cholangiocarcinoma treatment

Hi, Renee,

There is no need to apologize . It is my desire to answer issues that I know and skip the others that I do not know or the issues are better served by other members of this board.
Thanks for your compliment, as you have already known, I am only an instrument of God ,whatever he wants me to do or not to do is in His hands. I sound ,but indeed I have no control over the matter, including my disease. I just follow His instructions.
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 as always, Percy. Your account is fascinating and helps all of us navigating in our own little ships through these same shoals. I am so impressed at how well you advocate for yourself and how dispassionate you sound though I know it can be terrifying because I live it too. Thank you for all your postings, articles and helpful comments. You are a treasure.

Re: My personal case study & history of cholangiocarcinoma treatment

Many thanks for that Percy.

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

Thanks Percy!!! seems like I will ask my wife do have more scan than what the Dr. ask her to do... the Dr. arranged her to do Pets every half year only, and blood test and marker every 3months from now on..

Re: My personal case study & history of cholangiocarcinoma treatment

Hi, everyone,

If interested,I have just updated my medical history(the underlined sentences).

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

Where is your medical history update? Is everything going ok with you?

Willow

Re: My personal case study & history of cholangiocarcinoma treatment

Hi, everyone,

It is the first message under this topic. just in case here is the link.

http://www.cholangiocarcinoma.org/punbb … p?id=10240

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 indeed for updating your medical history. Hope you're managing to stay warm as well right now as no doubt things are getting rather chilly over your way!

Stay strong, and warm!

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, everyone,

I developed stomach pain,back muscle pain and therefore cannot sleep at night for more than a month after my last trip to Mayo clinics for RFA treatment.2/7/2014.
I do not think the RFA help either.I will have another appointment with Mayo in late April .
The recent PET scan shown disease progress and therefore the furure does not looks bright. I will have another PET in 4 weeks. I refuse GEM/cis or other IV chemotherapy or targeted treatment but I will accept the oral form of TKI.
Sorry not to inform all of you earlier.

All in all, I will choose quality of life over quantity of life,especially after last month's stomach pain,back muscle pain and sleepless nights;it is no fun at all.
I need hospice info, when can I start,what to expect,what kind of services that I can have? please inform.
Also info about setting up estate trust or anyone you can recommend for me ?
What else do I miss so far? please give your ideas. thanks

God bless all of you.

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

Oh Percy, it is so hard to write this to you! First of all if you tell your ONC he will set up an interview for you with Hospice who will come see you at your home. You can usually start anytime up to a year. To start with because of your discomfort you might want a hospital bed as they really are more comfortable. Also get a lambs sheet for under your back as it adds to the comfort. Then, as things move along you just add anything you want like a walker, wheel chair, commode and I even ordered Oxygen for T toward the end as it seemed to relax him. They will also order all your Meds.
As for an estate attorney, a lawyer I had referred me to one. You might ask some of the Doctors at the Hospital if they know of someone reputable and most of it can be taken care of by mail, at least I did. Or if you would be having a simple estate the office stores like Office Max have sets of them and then it just needs to be notarized.
I am glad this post is over as it is the hardest post I have ever done and for now that says it all. I wrote this pulling on your strength, Percy!

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

Oh, Percy, such a hard post to read. I am so sorry for what you are dealing with. I hate this disease! I understand your wanting quality of life as opposed to quantity of life.
I am sorry I cannot help with your questions. I just want you to know I'm sending lots of love, prayers and strength to you.

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

Percy....first and foremost I wish for the oral tyrosine kinase inhibitor (TKI) to be effective. Not sure whether a treatment such as this this would qualify you for Hospice or whether palliative care would be more appropriate. 
The rest pertains to everyone with an illness or not:
1. a living will - names someone to make decisions when you are not able to do so at end of life
2. health care power of attorney - names someone to make healthcare decisions when you are not able to do so.
The above legal instruments can be handled without legal counsel however; it should be notarized.
Given that you want to protect your assets you would want to consult with a Trust Attorney. 
A trust is a legal arrangement in which you name someone or more than one person to manage the assets placed in the trust. Trusts can range from simple to complex depending on their purpose. Assets include real estate, cash, bonds, stocks, etc. 
With a heavy heart,
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

Dear Percy,

This makes me so sad.  I can't help you out as we didn't deal with any of this since Jim died so quickly.  Everything went so fast we had no time to think of or worry about any of that.  Never even had time to get hospice involved.  I do agree with your choice of quality over quantity at this point.

Sounds like you have already gotten some good advice and I am sure there will be more forth coming.

You have been such a rock and wealth of information to all on this site and anything that we can do to help and support you, we are here for you, too.

My thoughts and prayers are with you and I wish you strength, comfort & peace.

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: My personal case study & history of cholangiocarcinoma treatment

Hi Percy,

I am very sorry to hear this turn.  Constant stomach and back pain sounds awful, and lack of sleep for a month must be terrible.  I hope you find some relief soon.  Being miserable for that amount of time changes your perspective. 

Given all you have endured, I completely understand the decision to focus on quality of life.  I have no experience with hospice, so I can't really help there.  One thing I have given a lot of thought to is what would I want to do if Andrea fails the more standard treatment regimes.  I am sure you have pondered this much more than I have, but I want to write it anyway in case it is even a little helpful.  Here is my rough plan:

1. Add losartan to a previous working chemotherapy.  Based on my understanding coagulation sometimes helps cancer cells develop a tolerance for chemo.  As a blood pressure medicine, Losartan combats this tolerance.  In the specific research I saw, Losartan + 5FU was much better than 5FU alone treating a pancreatic cell line.

http://www.nature.com/ncomms/2013/13100 … s3516.html

I am not sure if you would consider more Xeloda (and I can't tell if it went from working to not working for you).  If Andrea were tolerating Xeloda, I would try and add Losartan since it seems to me it has upside with very little downside.

2.  Immune response trials - I was encouraged by the lecture Dr. Ferrone gave at the stakeholders meeting.  I did not realize that cholangio triggered a relatively strong immune response.  This leads me to favor immune based trials if available.  The NIH TIL trial is out due to age, but Dr. Ferrone mentioned MGH was soon to be opening a new trial based on their research.  I have no idea how long "soon" is, but perhaps there is a way to find out if this is imminent or not?  If so, that would be a trial I would strongly consider.

3.  Genetic marker trial - You said you had TP53 and CDKN2A/B.  Dr. Javle mentioned a couple of trials.  Are there any trials that might target these mutations but maintain a good quality of life?  Perhaps you could start and stop if you react badly?

I really hope you are able to treat your symptoms and feel better soon.  Due to stomach pain, Andrea was only able to tolerate tiny amounts of food/liquid for 3 weeks during her IMRT radiation.  With those types of symptoms nothing matters but feeling better.

All the best Percy,

Jason

Re: My personal case study & history of cholangiocarcinoma treatment

Percy,

I am so sorry to read this post from you and to hear what you are going through. Like the others, I too am reading this with a very heavy heart. I too so agree with what you are saying regarding quality of life over quantity and my dad chose that as well from the start.

Getting the pain under control is of the utmost importance I would argue and if that can be done then hopefully you will be able to get some sleep. From my dad's experiences I know it is so horrible not getting any sleep at nights at all. When he was in hospice care he had the hospital bed and that helped a lot, plus under that he had a water filled mattress that would move as he did and he said it gave him a lot of support and comfort. He would get pain shots in his chest when he wanted and that dealt with the pain that he would get very well. He was also getting his meds through a syringe driver and that helped a lot as well. They would change the meds over a 24 hour cycle and i know he benefited from that.

You know if I can help in any way what so ever I will. Thinking of you right now 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: My personal case study & history of cholangiocarcinoma treatment

Hi Percy,

I'm so sorry to read such a sad post.  You, who do so much for all of us.  I understand choosing quality over quantity of life.  I am getting to that point and it's not an easy decision for me.  I want to live but not like this.

You have been so helpful to us, getting us information to help us with our issues with this horrible disease.

I can only wish you the best and keep you in my prayers.  You do so much for everyone.  I hope the the oral TKI helps and gives you quality of life.

Best wishes and prayers to you.

Love, Peace & Prayers coming your way!
Mary

Re: My personal case study & history of cholangiocarcinoma treatment

Dear Percy, I am so sad to read your post and how sick you have been. You give so much of yourself to all of us.  I so wish that you can get some treatment soon.Don't worry about us, just get better! I will pray for you.Would a transplant be an option for you? We just got the letterthat my husband is listed on the tp lit. It really is his only option since his liver is just not working well enough. We have to try this it is his only chance and e feel good about it.

Re: My personal case study & history of cholangiocarcinoma treatment

Hi, everyone,

Thanks for your concern

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 too am sorry to hear how painful this past month has been for you. I hope you find some relief. I applaud you for writing such a difficult post. The decisions you are facing are truly challenging. You have always found ways to guide others as they were going through their difficult periods. I know everyone you've touched would do all they can in your time of need.

I agree with the hospice information provided above and would add please make sure you are very comfortable with the hospice nurse. If not, request someone else. The nurse plays a huge role in your comfort.


Please know we are thinking of you and will be praying for you.

Best wishes,
Carl and Lynn

Re: My personal case study & history of cholangiocarcinoma treatment

Dearest Percy,
I am so sad to read that you have been in pain and getting no sleep. I pray that God gives you some rest and relief from your pain. You are such a dedicated advocate for CC and your research and help is wonderful. Thank you for always answering my questions and taking the time to explain them in terms I can understand.
Sending continued prayers of healing and peace.
Love
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

Percy,
I just logged on and am sad to hear you have been suffering since your last RFA.  Don't have anything to add about hospice or legal issues to what's been mentioned already. I just want you to know my heart is with you. I pray that you will find proper medications for pain relief so you can get some sleep. This seems like an important and immediate goal.
A huge hug,
Willow

Willow

Re: My personal case study & history of cholangiocarcinoma treatment

Dear Percy,

I just wanted to say how sorry I am that this disease has progressed in this way for you.  I admire your bravery and choosing quality of life.  You have given so much of your vast knowledge and support to those in need here.

X

Clare

In the stars now . . . .

Re: My personal case study & history of cholangiocarcinoma treatment

Dear Percy,

It is with deep sadness and a very heavy heart that I respond to your post. I am sitting here thinking about the many conversations we had at numerous ASCO and DDW conventions - one that really stands out in my mind is the long breakfast conversation at DDW a year and a half ago. I still make the soup you told me about - they are getting to know me very well at the Asian market.
I hope that you are able to get some relief for the pain and are then able to get some rest. You have been an inspiration to me and many others. Your dedication and support to so many is truly amazing. I will keep you in my prayers, my friend.
Sending healing thoughts and hugs from New Hampshire,
Barbara