Topic: no ressection for us...what now, nothing ??? no hope but healthy

Today we were turned down for the possible ressection at U of Wa.  Dang it, seems it was a last resort, and gave us some hope for a spell.  Now what?  No also to TACE procedure.  And chemo of course did not work.  Large tumor on liver has some friends now. After the stent in the bile duct, he is healthy or more so, but what are the options now?  There doesnt seem to be any, even with the scads of research I have been doing. He can enjoy life right now being fairly healthy and active, but lacks hope.  No treatment does that!  Any ideas?   robyn

Re: no ressection for us...what now, nothing ??? no hope but healthy

Robyn,
   I'm very sorry to hear of your husband's diagnosis.  I am not familiar with treatment of such large tumors, but maybe can give a little general information.
My wife was diagnosed Jan.1, 2006 with CC plus a tumor in the liver about 7 Cm.
She was on Gemzar plus Oxaliplatin for 10 months, and the tumor shrank to only 2.3 Cm 6 months after treatment started and was about the same 2 months later.  She was being considered for resection of both it and the bile duct tumor, when suddenly the tumor began growing again very fast up to 8.5 Cm in Feb. 2007, ending chance of resection.  I mention this only because this particular chemo combination worked very well for her with virtually no side effects during that time, although most people have a bad time with the oxaliplatin.
   The next consideration was ChemoEmboliztion, and I noticed several postings about it under "Experiences".  I don't know the maximum size tumor that can be treated with this method, but it didn't work for my wife because the doctors could not find any arteries feeding the tumor to inject the chemo into!
   The tumor is now up to over 10 Cm, another Chemo was tried starting in June (Taxol and Carboplatin), but it beat her to the ground, caused considerable pain, and she had to be hospitalized on Sunday the 15th with infection due to extremely low white blood counts.  She is out now, very weak, but recovering, and will not receive that chemo again!  The next step is not sure, but except for the last 6 weeks, has felt good and enjoyed every day.  Of course we pray a lot and are looking at supplements that may help.
   We will be praying for you and your husband, as we do for others on the website.  Above all, keep asking questions and checking all the alternatives.  May God Bless You Both.

Re: no ressection for us...what now, nothing ??? no hope but healthy

Thank you David, yes that all sounds familiar. His tumor was not affected by that chemo  combination, and now it has other lesions forming. The left side of the liver has all but gone south as the tumor has atrophied it, but the right side is still good and functioning for him.
Here is some info I have unearthed about these tumors....It is important for the docs to find the origination of the cancer because the cell structure is different. Lets say between HCC and CC. So the CC tumors are different in that they dont rely on blood flow as others.  So the Chemoembolization (HACE or TACE procedures) dont work or dont work as well (altho they are done, they are great money makers) So its hard to starve them when they dont care about blood flow as much as the other type tumors. In my husbands situation, and I suppose in most others, there is scar tissue with the tumor, also infiltrated with cancer cells. So ressection is tough. THis is such a nasty type cancer. My hub also feels good, and altho Bob (the tumor) is large at 14 plus cm and with friends, it seems to be in a good place. I am still researching but they have said basically go home and get some living done. They say you dont get better than U of Washington but I can still try. Thank God for good insurance.

Re: no ressection for us...what now, nothing ??? no hope but healthy

My girlfriend is 47yrs old diagnosed this april.Has anyone on here tried a natural product called liquid zeolite?? It sounds to good to be true!

Re: no ressection for us...what now, nothing ??? no hope but healthy

I read up on the Zeolite and did not find anything concrete on actual benefits. Most of that is just money making but it is impossible to know since no blind studies exist. My thot was we have a 12 cm tumor that chemo did not influence a bit, so I had my doubts that herbal remedies would knock it cold. But I have a tendancy to be a bit of a realist, and there is that saying "it cant hurt".  Be advised herbal remedies can be harmful mixed with scripts and let your doc know.

Re: no ressection for us...what now, nothing ??? no hope but healthy

robyn- i sent you an email with some web sites

becky
blessed are those that are cracked,
for they let in the light!

Re: no ressection for us...what now, nothing ??? no hope but healthy

My mother, age 66 was diagnosed with Cholangiocarcinoma-Klatskin's tumor.  She was diagnosed in Abq, NM where surgery was attempted but not successful due to the tumor existing 1mm in the right love of her liver.  At the time I was told that the tumor existed only in the left lobe and that other tests were negative making her a candidate for resection.  Her case weas referred to MD Anderson for resection but was twice denied due to the "horse hair" existence in her right lobe.  My mother is again a 66 year old Native American woman, a spectacular woman with no history of alcohol, drugs or tobacco use or abuse.  She is fairly health and quickly healed from her first faileed surgery.  I want to fight the fight but feel my options are not non-existent.  HELP!

Re: no ressection for us...what now, nothing ??? no hope but healthy

Robyn,

My wife, Kathleen, has a mixed CC/HCC cancer and was successfully treated with Therasphere at Mayo Clinic in MN.  It has given her almost a year of good results with no side effects. 

Is this an option for your husband?

Bill