Re: New ICC Diagnosis -- Looking for Advice

Good luck today Matt. I hope that all goes well and that you get some good news today.

Best wishes,

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: New ICC Diagnosis -- Looking for Advice

Hi Matt
Best of luck today! Sorry to hear about your long journey - we seem to be right in there with you.
Maybe we will see you at MSKCC today - Dave's second (at least scheduled) pump session is with Dr Kemeny today at 11:15AM but I have come to learn visits there are typically an all day affair!

Re: New ICC Diagnosis -- Looking for Advice

Sandy,
I hope you don't have to wait TOO long! Bring lunch! Lol
Typically, she ran 30 minutes late. Sometimes longer.
All these people at Sloan now! Makes me wish I was still there... No, wait... Never mind! smile. I like my 20 minute commute better.
Good luck to all of you today at Sloan.

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 ICC Diagnosis -- Looking for Advice

Aug 11, 2013
I am now 65 and in "excellent" health (besides ICC).  I hope this info gives you and perhaps others some bit of hope. 

Diagnosed 11/09.  (Caught it before it spread beyond the liver.) 
60% of liver resected, clean margins.  (Dr. Rohan Jeyarajeh, Dallas, TX)
Gem/Cis preventatively.                       (Dr. Vikas Aurora, Grapevine, TX)
8 months remission. 
Reoccurrence to a local lymph node. 
Gem/Cis again                                      (Dr. Vikas Aurora, Grapevine, TX)
Removed the rest by surgery.              (Dr. Jeffrey E. Lee, MD Anderson)
1.5 years remission. 
Reoccurrence to a slightly more distant lymph node. 
Taking (oral) Xeloda now.                     (Dr. Vikas Aurora, Grapevine, TX)
CT next week (mid Aug 2013) after 3 cycles.

Side effects never a big deal to me but I did get/use a dietician specializing in cancer care to give me more tips on preventing side effects)  Recommend.

Cancer hormones can cause depression not to mention the fear of the diagnosis.  So make sure either of you don't become trapped in anxiety, depression, or fear of making a decision.  If so, seek help (e.g. meds, stress mgmt education, mind/balance steps, no secrets.  I even have an upbeat personal trainer come to the home to keep my core strong, energized, good circulation, big smiles)

I'm impressed with your medical saavy and research.  Your wife is lucky to have you in her corner.  My husband (former pharmacist then lawyer) was/is great at that too.  If you ever need/want to talk to someone who can talk to you on that level, feel free to call 214*734*5023.  I haven't posted much here so I don't know if I'll know if you reply on here.  Going to Seattle vacation this week... That's my cell.

Ask me about my doctors!!

Re: New ICC Diagnosis -- Looking for Advice

(continued response to Matt....)

Going to Seattle on vacation from (hot) Dallas.  Call cell 214*734*5023.  My husband can speak on medical level too if you want to talk to him.

Ask me about my doctors!!

Re: New ICC Diagnosis -- Looking for Advice

I can't wait any longer! What's the news??

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 ICC Diagnosis -- Looking for Advice

Hi Chris,
My apologies for the delayed reply.  Life has been a little crazy the past week.  Our appointments at MSKCC went ok, but the news was a little disappointing.  Dr. Fong was not very encouraging about the future prospects for resection due to the advanced stage and lack of response to the first line chemotherapy.  He did not believe the HAI pump is advisable at this time but wants to reasses in a few months after four cycles of folfox.

Thanks to all who have responded for your continued support and encouragment.  Lisa and I have a very positive outlook in spite of recent setbacks and are pressing forward with the new treatment plan with great faith and determination.  I will do my best to keep you updated.

Kind Regards,

-Matt

Re: New ICC Diagnosis -- Looking for Advice

Oh, Matt,
I am sorry you and Lisa didn't get the news you wanted. Unfortunately, you learn quite early that this is much like a roller coaster ride.
I have learned patience is very necessary. Patience waiting for response from chemo, test results, decisions made and changed....it's tough not being in control.
My suggestion? Enjoy as much as life will let you! On the good days, embrace the good. On the bad days (including the wait time) practice patience.
Tell Lisa I wish her great success on folfox.

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 ICC Diagnosis -- Looking for Advice

Matt.....I too am sorry to hear the news however; as you have mentioned the next regimen consisting of FOLFOX may just nip these pesky cells.  Here is to good news coming your way.  Take a deep breath, give yourself a break and then head with gusto into the upcoming chemo cycles.  We are with you - all the way.
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 ICC Diagnosis -- Looking for Advice

Dear Matt and Lisa, I am so sorry about the disappointing news but at least you have a plan and that is extremely important. You both have remarkable attitudes and that helps so much. Remember that attitude is not only everything it is the only thing! Thank you for the update and please keep us posted on Lisa's progress!

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: New ICC Diagnosis -- Looking for Advice

Matt,
Praying that Lisa responds well to FOLFOX. 
My husband (41) was dx with CC in Jan-13 and it's been a roller coaster for sure.  Five rounds of gemcis didn't work on him at all and now he is on FOLFIRI+Tarceva.  Best wishes to the both you and your family.

Blessings,
Susan