1 (edited by JeffG Sun, 28 Sep 2008 12:43:18)

Topic: Introductions

I would like to clarify  that this section was set up for new members to introduce themselves.  If we continue to do this roll call we will miss a new member who may be wanting some of our help or suggestions. " There is no way to monitor this".  I would surely hate to miss someone.  Until we can discuss with Rick and see if a roll call specific section can be opened, we probally should refrain from further roll calling.  If you click on "USERS" above it will give you infor on who is a member and new member. Then if you click on their name it will give further information that a new member wishes to be known.  Also the date above your name tells when you registered and became a member.  Although this is a great Idea /icebreaker we should hold off until a specific "Roll  Call" Section " can be possibally developed.  I thank you for your consideration and understanding.  If I could stay awake 24/7 and watch for new members who need and want some help keep from being lost, I would but I can't.  I remove my roll call infor as it is already provider by clicking my name and all post

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Introductions

My husband just turned 70 on October 3. We got the diagnosis on October 13 and since then we have been trying to find out about this  terrible disease, the  prognosis and treatments.  Though I've been told that Don's tumor is too large to resect and that a transplant is not an option for him, I can't help feeling that I should be doing more to find another doctor/team/hospital that would give us a more optimistic prognosis.  We have seen three oncologists, a specialist in liver surgery and a very respected oncologist who specializes in cholangiocarcinoma. All have told us that the only thing we can do is manage this disease, probably only for about a year to 18 mos.  When I tell family and friends where we are being treated they are horrified that we haven't gone straight to one of the big name cancer centers, where, they are sure that we will find a miracle cure.  This, of course, taps into my own doubts about my ability to find the right doctor and the best team, etc.  I want to take him for a second opinion to someplace like Memorial Sloan Kettering, if only to silence everyone. I am I seeing this clearly?

Re: Introductions

Hello Lynn and welcome to the best little club in the world where no one wants to really be a member. The only thing we know for sure about CC is that we know nothing. I believe you should keep going for answers until you are absolutely satisfied in your own mind, not everyone else's. Somehow us caretakers seem to make the right decisions and we just go with our gut feeling on this. When my husband Teddy was diagnosed we were out of town, it was an emergency and we just lucked out on all counts. You will see people on this board who were told they have 3 months and its now 2 years later. Read all you can, this site is excellent for information, and also look through some of our past posts. The people here are so wonderful so feel free to  throw out any questions you have and you will get answers. No one can tell someone else what to do as each case is different but there is a ton of guidance here. Please keep us posted.

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.

4 (edited by marions Sat, 08 Nov 2008 13:49:07)

Re: Introductions

Lynn

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

5 (edited by JeffG Sat, 08 Nov 2008 14:25:47)

Re: Introductions

Hi Lynn...  Sorry to hear about your husband.  Don't second guess yourself or feel guilty about the sitiuation.  Other than my initial resection 9 years and 7months ago, I have gone to local cancer centers close to home.  I could have chose to go to all the major centers and and by now been flat broke, house repossed or morgated to the hilt.  I 've compared the treatment I'm recieving at my local cancer center with that of major centers many times just to make sure they are on track with the same protocal, of  which you'll find that they are, in most if not all cases they are.   Everyone on this site has always suggested getting second and third opinions, personally, a good surgeon is who ultimately makes the call if you are looking soley for surgery. Also Oncologist and Radioncologist who know their stuff knows the score as well if your looking at other alternative treatments. You say you have been to a surgeon who specializes in livers.  If you want to get one more opinion from a surgeon for peace of mind that is your choice.  Is his tumor confined to one lobe or metastic else where?  That make a difference without a doubt.  I don't ever say give up faith or hope, But I always look at reality as well.  I'm in the situation right now about getting another opinion from a surgeon who specializes in removing tumors from my spinal area.  This opinion is not to find a miracle cure but possibally buy me more time on this good ole earth.  I've done my research and with this type chemo, I almost already know the answers I'll get at my consult.  The trauma of the surgery may jeopardize the quality and quanity in my case.  He could say nothing he can do or leave it up to me.  So, I've yacked away Lynn, but the choice is yours.  Memorial,Sloan Kettering , MD Anderson, Mayo, all good choices.  There is a list of others above in the menu area under Newly Diagnosed or Cholangiocarcinoma.  Is your husband healthy other wise?  That can make a difference as well.  I wish there was a clear cut answer Lynn but there isn't.  If you would like to share more about his situation, type of tumor or tumors  and locations and size, I would give my personal opinion, or others. Most important is what does your husband want to do?  I wish you both the best outcome possible and look forward to hearing more from you.  Maybe we can add a little more infor to help make your guys choice a little bit easier, although it never is an easier choice. who knows?

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)