Topic: Thank you

I just wanted to say to everyone on this sight and those that started this foundation THANKS SO MUCH!!!  I learn so much from all of you.  This sight really is a library of knowledge on this awful cancer.  So glad I can always log in and get the information that I need. Thanks so much!

Anna

Anna

Re: Thank you

Anna you are so very welcome. It's bittersweet as we wish we didn't have to have this site but then we would never have met all of you extraordinary people!

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: Thank you

Anna-so interesting  that you just posted this because I just met with a lung specialist about my spot and he must have said half dozens time "this cancer is so rare there is no data to compare anything".
Thank you all for putting what little information there is out there. I know it seems that we have a lot  more CC family out there , but do you realize this the only CC chat site and we all know each others name. I guess we should be thankful we are "small"
Lots of prayers for our CC family-Cathy

4 (edited by PCL1029 Sun, 12 Feb 2012 13:43:41)

Re: Thank you

Hi, everyone .

The most important motivation for me volunteering for this web site
is ,among others, to try to make a point to all of u, the patients as well as caregivers, should have PREPARE an ACTION PLAN for the COURSE AHEAD of this disease development .
Whether  you are looking for  encouragement as I first did, or research for knowledge to help to fight for this cancer.

Especially when the patient's condition is stable and mobile;
AT that  point ,you can go around  the country or the world to seek better treatment or  get 2nd and third opinion; to seek DIFFERENT SPECIALIST opinions.
1.  see the hepatologist-liver specialist first to get a complete picture of the disease state ; ask him/her questions you have about stents;plastic or metal;coated or not coated is better; at what point do i know to need to change stents base on the sludge thickness ; any other suggestions for me to manage the stents and my liver better. Is the current treatment adequate? other medical or surgical method  that you can suggest that can help or improve the control the bile flow with or without the stent;ask what is the prognosis on your current condition ;can he suggest some medications for better treatment of the bile flow and targeted agents for the recurrence of the CCA.that may happen in the future. why it is so easy for recurrence; you may read a lot about the above information from the internet and here ; but it is not as the same  as when you hear from the hepatologist for your liver.
Finally, ask the names of doctors (GI specialist, oncologist & interventional radiologist and hospital that he/she can RECOMMEND  to you at your local area or within 50-100 miles radius.  based on his/her opinions ,then

2.  go to see medical oncology to see whether the current is the optimum treatment and ask for additional chemo treatment plans just in case for future use.(get  the names at least  for 3-4  with and without targeted agents. and write it down for future reference with your local oncologist);
ask them  also  TO RECOMMEND NAMES OF ONCOLOGISTs HE CAN refer you to  IN YOUR LOCAL AREAS.

3.Since radiology for cancer treatment is developing faster and more precise in its treatment target  ; it is also important to see a radiation oncologist for possible radiation treatment plans by interventional means ;ask to suggest a couple names of the radiation treatment plans that may be useful  for your condition ;(and write them down for future use.);ASK   TO RECOMMEND  NAMES  of radiologist AND PLACES he/she knows best in your area for each procedure for future reference.

4. If you,the patient, decided palliative care is the best. then try to find out alternative treatment plans and facility to extend the quality of life to the best that you can without regrets. life is a journey and will be continued at a different place after all.
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: Thank you

Great post Percy, I am sure it will be VERY helpful

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: Thank you

Thanks ,Lainy.
sometimes I think life is interesting;up and down;twist and turns.
sometimes I think life is pre-programmed and with a purpose;
and sometimes I think I can do nothing at all when my energy is not there.
Strange,isn"t it? any poems to cure   this kind of mental problems,my poet.
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: Thank you

Percy: Here you go:
                                      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.
                       Today is the first day of the rest of your life!             By Aaron Hoopes

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: Thank you

Thanks to all of you!!!

Anna