Topic: New member

Hi my name is Sherri and my step father was diagnosed with CC back in October which they actually removed 60% of his liver and 2 lymph nodes and told us they removed all signs of cancer. They put him on chemo 1 time weekly for 3 weeks and then off one just for a preventative.  About 5 weeks ago they did a CT scan and it showed 3 lymph nodes that were inflamed and thought it could just be inflammation from the surgery and wanted to continure with the chemo and repeat the scan in a few weeks.  They have now said that his cancer has recurred and they need to change his chemo.  He was suppose to have a treatment today and they didn't give him one.  I don't really know what is going on and am really confused.  I lost my dad, father n law, sisiter n law, and grandmother and I don't think my mom can handle losing someone again.  You have to understand my step dad was very outgoing, active loves playing golf.  He just got sick all at once.  Lost about 40 lbs. couldn't eat and his side hurt.  We went to his family doc and they said there was something definitely going on with the liver mabe an infection.  They ran so many tests and then the oncologist basically said he had  cancer of an unknown origin that had spread to his liver and probably only had a few months to live.  He did send us to a surgeon t look at the situation adn then after more tests they found the tumor was attached to the vena cava and sent us on to another doc in Louisville, KY who had come from Sloan Kettering. He did a pet and Ct scan and said the cancer was liver cancer and was contained and he could remove it. He sent him home for a few weeks to basically get a little stonger and gain  a few pounds.  He had the surgery the first of Oct and it went really well up until now.  We haven't seen his surgeon yet just the doc who first told us it was inoperable and only a few months to live.  We don'know what stage or anything that is going on?  I am just really confused and feel really helpless. If anyone has any direction or adivse it would be greatly appreciated.

Re: New member

Dear Sherri,  I'm sorry to hear all that you are going through.  The first thing I would do is ask questions.  If it was originally DX as CC then I find it odd that they did not mention that this type of cancer more than likely is systemic (in your blood stream) and that even with clear margins during resection doesn't mean a cure.  My understanding is the if you make it passed the 5 year mark without recurrence then your in good shape.  The fact that it was found in his lymph nodes tells me it is systemic and that is why he was started on chemotherapy.  The reason for stopping chemo could be due to his overall health and low counts on his blood test.  His platelets, white blood cells, nuetrophils have to stay above  certain levels or he could develope other complications.  I've been doing Chemo for about two and half years now and had to stop treatments several times and allow my blood levels to climb back up to a safe levels.  He should be having blood work done weekly while doing chemo.  Also they do stop one regimen of chemo for a while to try a different regimen of chemo that may prove more positive results.  Being dx with cc and having chemo can get to be very complicated and you need to ask questions to keep yourself well informed.  To my knowledge there currently is no cure for CC but there is treatments to slow it down and in some cases stablize it.  For how long depends on how advanced the cc is and wheter it has mets to other parts of the body and how effective the chemo regimen is.  It could be 1,3,5,8,10 years living with this disgusting disease.  No one can put a time on it as it is so individualized.  I had left lobe of liver resected and gall bladder 8 years a go and still fighting the battle.  Like your step dad mine recurred to the kiver and mets to both lungs. So Sherri ask questions and get second opinions and tell the doctors you want them to tell it like it is.  Of course your Step Dad has to give consent for that to happen due to a federal law called HIPPA.  It's a need to know only privacy of information of medical records law.  If anyone on this site agrees, disagrees, or can add more to this rambling please do so.  Sherri I wrote this based on the infor you shared; I'm sure there are more what if's.  I wish you all the best during this journey of uncertainy.  Please take time to read as many posts and blogs as you can on this site.  I 'm sure it will give you a firm insight of what cc is all about.
Jeff G.

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

Re: New member

Thanks Jeff for the reply. Our situation has worsened.  On Friday the oncologist called and told us it was really bad that it was in many many lymph nodes.  Lymph nodes surrounding the vena cava, the abdomen, the liver, the stomach pretty much in the lymphatic system. They are having us see another oncologist at the Markey Cancer Center here in Lexington.  They basically said they can either switch to about 3 types of chemo to use together which is very strong and will probably make him really sick or we can focus on quality and pain management. We are waiting to here when we see this doctor.  My stepdad is very faiothful and says he will not give up.  He has an incredible attitude.  I hope for the best and know that God can perform miracles.  I have seen a lot of those on this site.  Any help or suggestions from experiences would be greatly appreciated.  God Bless

Re: New member

Hi Sherri, so sorry to read of your loved one's difficulties.  JeffG gave some valuable info and I agree that the findings of the drs can be conflicting...surgeons will have a different view than the medical oncologists.  It's interesting that your stepfather was put on chemo after surgery---my husband's drs said to wait on chemo, only try it again if scans show another flare up.  We don't know what the chemo options are; so far we've been told that systemic cancers are hard to treat with chemo, but then that is not true for everybody.   As reading through these discussions will show.  IMHO the best thing to aim for is get the person stabilized and comfortable.  What will make him feel good NOW and ease acute symptoms so that you all can then devote a little time to investigating the longer term implications.  It sounds like that's what you're already doing...just keep at it.  Sorry I don't have much of a definite direction to offer but just wanted you to know you have support and encouragement at this forum and my thoughts are with you.