Topic: My Wife, Patty, unresectable Klatskin tumor. Trying IP-6

My name is Ted and My Wife, Patty, had surgery to attempt removal of Klatskin tumor with out success.  She is turning down F5-U.  Although there is a trial  using Davanat in conjuction with F5-U,.starting here at Tampa General Hospital. She is still considering it.  We have already started her on IP-6 but not sure of dosage.  We would appreciate hearing from anyone that has had success with IP-6 and what dosage is being used.  Our prayers are with you all that are going through what we are experiencing right now.   
Ted

Re: My Wife, Patty, unresectable Klatskin tumor. Trying IP-6

Hello Ted,
   My husband had an unsuccessful surgery to remove a klatskin tumor in July '06. He took Xeloda for 5 weeks and had radiation treatments followed by brachytherapy with great success. His tumor shrunk to the point that they can no longer see it on cat scans or MRI. Klatskins are supposedly slow growing and slow to metastasis so I would consider the chemo or other options. I don't know anything about IP-6 but I would explore all options. Best wishes!  Mary

Re: My Wife, Patty, unresectable Klatskin tumor. Trying IP-6

ted.... I have tried IP-6 with inostol for a period of 3 months about 2 years ago.  It really did nothing for me.  I have also had Gemzar{gemcitibine) with 5 FU and it held things stable and slow for awhile.  New regimen of Oxaliplatin and xoleda feels as thuogh it is doing me some good. Tumor marker dropped 40% after two treatments. Just completed third cycle and will be having CT to see if it coincides with tumor marker results next Friday.  Others have had this treatment and had real good results for longer period of times.  Wish you and your wife the best.
Jeff G.

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

Re: My Wife, Patty, unresectable Klatskin tumor. Trying IP-6

Ted -

Did Patty every join the DAVANAT Trial at Tampa Gen?  My dad has GBC - recurrance after resection.  Never had chemo.  Not doing well right now - CA 19-9 is 578.  We have a meeting next week to see if my dad qualifies for the trial.  He's getting very tired and weaker daily so I am praying that they can do something.

Please let me know if Patty is participating in the trial and if she has had any succes.

Anyone else who may have experience with DAVANAT please let me know.

Thank you.

Kelly

Re: My Wife, Patty, unresectable Klatskin tumor. Trying IP-6

Kelly,
No, Patty did not participate in the Davanat trial.  She opted to not have any chemo or radiation.  She has been on heavy doses of IP-6 and  AHCC plus several other  alternative treatments.  She is feeling well most of the time.  She does experience the "unexplained " fever about once or twice a month that lasts for three or four days and then  goes away.   Her CA 19-9 has just recently elevated from 550 to 2475.  We are just taking it one day at a time.  Patty's quality of life is good.   Patty and I  pray for the best for your dad.
Ted

Re: My Wife, Patty, unresectable Klatskin tumor. Trying IP-6

My mother has not started chemo, still waiting for MD Anderson, but I will share the wonderful success stories with chemo and radiation therapy.  We were just not to happy with being told that chemo would be the only method to keep her comfortable.  It sounds like success is a possibility.  My mom was preparing for MD Anderson-Houston where she was accepted to be tested and (to us) final determination that surgery was not an option but she got Cholangitis so we had to postpone.  Maybe we should just proceed with chemotherapy.  Anyone out there heard anything about the Gallup Cancer Center in Gallup, NM?

Re: My Wife, Patty, unresectable Klatskin tumor. Trying IP-6

Ted -

Thanks for the reply.  Glad to hear that Patty's quality of life is good.  We're trying to get my dad to that point right now.  Thanks for your prayers - you and Patty are in ours as well. 

Regards,

Kelly