Mom just diagnosed with CC – Please Help!!

Hi Danny,

My husband also has Stage IV metastatic intrahepatic CC. He was diagnosed a little over 3 years ago. They originally told us his only chance was surgery as he had a large mass in his liver. When the surgeon went in, he removed 70 percent of John’s liver, his right kidney, part of his colon, gallbladder and some of his stomach. The tumor was the size of a softball and had grown into his kidney, colon and stomach. The surgeon said his kidney had not been functioning for a long time and it was completely shriveled up. He was otherwise in good health and did not have any symptoms other than a pain in his right side. That’s typically the way this cancer works; by the time you present symptoms, it’s already in the late stages. At first, the surgeon was very confident that he had gotten everything, but that wasn’t the case. Six months later, John had multiple tumors throughout his liver. He went through chemo treatment which shrank some at first; but then the doctor gave him a break and the tumors started growing again. After he had an adverse reaction to the chemo, he had to stop. The oncologist started him back on a new chemo on January 4, 2011. This was gemzar/cisplatin/avastin and he went through 11 treatments of this. John developed some bleeding so the doctor took him off the end of May. He just restarted this same treatment plan on Friday as his last scans did not appear to be good. Other than tiredness, John has been able to enjoy life. His appetite is still good and he has maintained his weight. We take each day one day at a time, and pray that God will continue to give him many more days. John’s motto has always been, “it is what it is”, and he has tried to keep a positive attitude throughout everything he’s been through. I think you should pursue any and all options available to you, and tell your mom that there are indeed many people living with CC. Take this time to enjoy every moment you have with your mom as these memories will stay with you forever. I will say a prayer for your family; try to stay strong and positive and keep the faith. Wishing your mom well, PeggyP

Danny, I am not sure how a doctor can order a chemo regiment without knowing all the test results. One week is not going to make a difference. I would definitely call John Hopkins or one of the other fine hospitals. I learned to practice “gut” medicine rather quickly and honestly lsiten to your gut, it will not mislead you.

Hi Danny, You will find this board tremendous support. My husband was diagnosed with extensive stage 4 cancer last October (multiple tumors throughout liver, multiple tumors throughout spine and pelvis, lymph involvement) and in December they determined it was cc. He chose the chemo (from December to May) which he did respond to and it has given him 8 more months so far. The quality of life for the most part has been good and we have been able to enjoy many happy times with our family. Recently his health has started to fail again. He is 60. Like Lainy said chemo is a personal decision. It seems no rhyme nor reason why some respond to it and some do not and why some live weeks, some months, some years. My husband, as well as others on this site, take supplements to boost their immune system (another personal choice). He sees a naturopath. We believe it helped him tolerate the chemo well.
If the cc is confined to the liver your mom may be a canditate for liver transplant. There are only a couple of places that offer this, one being the Mayo clinic. Of course this comes with a lot of risks but may be worth looking into.
I wish you all the best with your mom. Keep being the great advocate you are and continue to seek out opinions and options. Nancy

Danny, please know that not all “Cancer Centers” are good at dealing with CC. One of the best Hospitals is John Hopkins. All you have to do is send in her tests and LAB results. If you call them first they will walk you through the procedure. i don’t know of many that would put your Mom through everything again. Don’t know where that doc got that news. They can usually tell by just reading the reports. To chemo or not to chemo is a big personal decision. My husband had to make that decision and was told it would buy him maybe a month. He decided on quality of life not quantity. It should be up to your Mom. Please note that we have had some in her position and they did quite well with or without chemo so its a rough one to decide. By the way please ask the new ONC how many CC patients he has treated. Because of it’s rarity you never want to be with an unexperienced ONC who has not dealt with CC.
How long do people live? It is very weird as those who were told months are here years and then the opposite. We don’t listen to statistics as they are old and not updated and new discoveries are happening all the time. I like to say that we remain realistically optimistic. Please keep us posted and feel free to ask away on our wonderful site!

Dear Danny, welcome to our wonderful family but so sorry you had to join us. First I would like to say that we do have members here who were diagnosed at Stage IV and are doing quite well. Next, we are big believers in 2nd and 3rd opinions. I would gather all your Mom’s Test and LAB results and send them to
either John Hopkins, Barnes Jewish Hospital St. Louis Mayo Clinic Rochester, MN, MD Anderson Houston. At the top of this page is a Search Engine where you can type in Trials and see what posts appear. Read up as much as you can as knowledge is very powerful when dealing with CC. I know that everyone is probably in a state of shock right now but do you know if Mom’s ONC has experience treating CC? What age is your Mom? Surgery is actually the best way to treat CC but I would ask the ONC what is the chemo going to do for her?
In many cases it does hold it at bay for awhile but what does he say is her prognosis?
I am sending you best wishes and good luck for some answers and I know more of our members will be joing in. Be strong, Danny and hopefully everything will fall in to place.