Things You Would Like to Know About My Hospital Visit For 2nd Opinion.
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Hi Sharon,
Glad to see that you have joined this site. There is so much useful information here. I hope your mom’s chemo goes well this week. In your note to Percy you mentioned that she would be starting the chemo he had in his post. Were you talking about the gem/cis or the Xeloda? John has his scans tomorrow; then another week before we see the oncologist. He is taking the Xeloda now and seems to get more tired with this. How was the Elvis impersonator? I hope your mom enjoyed the show. Sending hugs and well wishes to you and your mom, PeggyP
Hi Sharon,
I forgot to say as well, I replied to your email tonight that you sent me directly using the email function here on the site. I hope that you got it okay. My reply seemed to go through okay to you and it hasn’t been bounced back to me as unsent or anything like that. Like Marion says, don’t be discouraged, we are all here for you.
Best wishes,
Gavin
Hello Sharon…
we are trying to respond to your mail sent to The Cholangiocarcinoma Foundation however, it seems to not want to deliver to the address given. Additionally I have sent mail via this website. Should this not arrive please go to my ID, left site, scroll down to E-mail, place curser and write a quick note. I will then be able to respond.
Don’t be discouraged…we will make it work.
All my best,
MarionHi Sharon,
Welcome to the site. Sorry that you had to find us all but glad that you’ve joined in with us here, as you’ve come to the best place for support and help. And you will get tons of both from all of us. Perhaps you could start a post under the introductions part of the site and that way many more of the members will see it. Looking forward to hearing more from you. We know how you feel and what you are going through, and we are all here for you.
Best wishes to you and your mum,
Gavin
Dear Sharon, welcome to our awesome family. I am hoping that you will be able to tell us a little more about your Mom and please come visit often, you will not only learn you will feel a sense of security from our many wise members.
Percy;
Thank you for the post regarding second opinion. Although I did not post an introduction, I have contacted many helpful members to help my Mom battle bile duct cancer. She starts chemo this week; the kind you mentioned in your post.
This site is a blessing for me. Thank you and everyone for helping me.Hi Percy,
Thanks for this. Some great points and information in there, and I know that this will be of great help to many people. Thanks again.
Best wishes,
Gavin
Hi, everyone,
Something you would like to know what I have learned as a CCA patient for 2nd opinions. 1/1/2012
1. Choose a hotel that you can walk to the hospital.(within a couple blocks or they can provide rides .)
2. Try to pre- arrange the time of your tests(labs, MRI etc.) as close to each other as possible; especially those tests that need fasting; have a couple hours of rest before you see the specialists so you are not tired and forget the questions you want to asked; or do all the tests on the first day and see the doctors the next day. This way you can maximize the benefits of 2nd opinion consultation.
3. Type your questions on paper and give him a copy so he can answer each one by one; you should also have a copy on hand and if you don’t understand what he/she said. ask them again. Most doctors over 50 years old prefer no recording, so make sure you ask first.
4. For CCA patients ,seeing a GI specialist who specialized in the liver and biliary system–a hepatologist FIRST is the best bet in my judgement even if you do know where to start. He can confirm a correct diagnosis first and refer you to surgical, medical oncology and radiation oncology for 2nd opinions if needed therefore you will not waste your time on other consultations first.
5. You need to bring along a caregiver to help you; this is a MUST even you think you can do it all.
6. At the end, make sure you get all the copies of the tests report and Scan disk for you OWN record; they will mail reports and scan disc, pathology slides back to your hospital and doctor too.
7. Do not get too down or too excited when you hear the results. Have a safe trip home first.
8. Chemo sensitivity report is of no use to medical oncology yet due to lack of PROVEN value-a bit surprise to me from the mouth of an oncology expert I consulted with.
9. mTOR and AKt are among the pathways that look promising in research for CCA patients for new Targeted drugs development at this time.
10. Sorafenib- a multi-pathway targeted agent may be of value for CCA patients.
11. In general, Gem/Cis is on the top of the list to start for CCA patients unless clinical trial are suggested; GEMOX is ok if you can’t tolerate Gem/Cis. Xeloda(capecitabine) by mouth twice daily for up to 6 month for recently resected patients is appropriate. if tumor recur after Xeloda treatment failed; Gem/Cis is the next step.
12. Finally ,if you are only allowed ONE consultation or 2nd opinion; in my opinion, the hepatologist consult is more worthwhile than oncologist consult for 2nd opinion. I think most of the local oncologists doing a good job at choosing the appropriate chemo treatment since the choices are very limited for CCA patients unless clinical trial is on the top of your wishing list.
God bless.
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