51 (edited by PCL1029 Mon, 09 Dec 2013 12:15:26)

Re: New to the Site

Hi, Sandy,

If the time line was correct, that is from June 24 started to use FUDR pump and alternate with GEMOX and get 70% reduction on the Oct follow-up CT scan; that was a good progress in just 3 mnoths.
Then from Oct to about 3 weeks ago (middle of Nov.);In about just a month's time,development like you described,--"She was beyond shocked to have found a second NEW tumor of good size in the liver and a lesion on the bone on his lowest left rib.  She prescribed a PET Scan next week, and an appointment with a Radiologist December 18th to begin Radiation treatment." It looks like the oncologist pretty much thought that the chemotherapy will no longer works, and depends of the PET scan result, they will use radiation like IMRT or SBRT for continuing treatment. If so, can you also ask them to provide a 2nd opinion on interventional radiologist (IR) for consult for chemoembo or radioembo possibilities.
Please  mention to your oncologist if possible for her to prescribe targeted therapy agents like Tarceva or sorafenib .even though the tumor is unresectable.
Ask or insist the oncologist to  recommend you for a clinical trial in your area . NCCN actually encourage patients to go through clinical trial for unresectable cholangiocarcinoma.
I know  there are a few at Mass general and Sloan-kettering .
If your husband still have night sweat, tell the doctor too.

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: New to the Site

Just wanted to add my two cents: I would consider molecular profiling (if not done already). 
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: New to the Site

I know Sloan Kettering has a trial involving gem/Ox adding another ingredient. It might be a choice. I wish I could remember the new agent they added. And whether it's working.

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: New to the Site

Thank you Lainy and Chris - as always - for bringing me back from despair, and putting a smile on my face.
Thanks also  PCL and Marion for weighing in.  Your support, experience and insight are invaluable.
So based on the feedback we went over today to see Doctor Fong - we would have seen him immediately upon hearing the latest developments but today was his first day back after a week of conferences.
He was actually very pleased with the liver - back in July when we started Chemo he said that ALL the blood vessels were constricted and Dave could well not have made it to August.  Now they were all open,and the original tumor was down in size again, this time to 8 cm.  He was not particularly concerned with the second tumor in the liver - all the original satellites he burned off during Dave's surgery no longer appeared.  He felt strongly that the FUDR was still the most effective way to treat this that they had found - also he was thrilled all the Markers were normal.
Of course he was less happy with the bone lesion - he said this would not be a killer, but rather a quality of life issue  (rather than a longevity of life) as it had the possibility of causing a significant amount of pain.  He said he was glad there was only one, he could easily have seen a number appear and that one alone was a very decent sign.  He set us up to see a Thoracic Surgeon tomorrow to evaluate whether it made sense to remove the rib in order to do away with the pain - his biggest concern was that having surgery would mean stopping Chemo and that was probably not a good option at this point.  He was more inclined to see what Dr. Yamada would say regarding Radiation options. 
I asked about Clinical Trials - he said that would at some point be an eventuality, but really was a last resort and something we would explore only when the Chemo stopped working.  He felt strongly we were pursuing the best Chemo combination out there, one that had demonstrated the greatest success.  Same for Molecular Profiling at this stage.
Overall, feeling a lot more positive and less helpless than before meeting with him.   Felt we left with a game plan and a much better understanding.  I think Dave also felt a lot more hopeful.  All in all, a good day!

Re: New to the Site

Sandy.... There is lot's of good news expressed in your posting - I am happy for you and Dave. Bone metastases have been reported on frequently.  Most respond favorably to radiation treatments and I wish for Dave to be equally as fortunate.
Keep up the good work.
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: New to the Site

Hi,
Just to let people know also, I believe Dr.. Fong is among the only few doctors to continue using the FUDR pump.

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: New to the Site

I think you are right. Sloan Kettering is one of the few places still using it. While it works great toward killing cc, colon, etc. tumors, the chemo is tough on the body, as is the surgery.

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.