Thanks for the encouragement, and thoughts.  Let us know how you do with the CT, too bad its on your b-day, but it will be a good day anyways... happy happy b-day!! smile

Oh my what a time of things you are having.  You are a very strong person.  Staying positive for your husband is so important!  That seems to keep my husband focused as he looks to me for support, although he is very strong too, but yet a terrible worrier.  The running never seems to end does it.  Lacrosse is keeping us moving right now.  Sounds like you baseball star needs a bit of a rest on that pitching arm!!  Continue to stay strong, and never give up hope, because thats what holds us up!  Keep me posted on how things are are an inspiration!
In my prayers too!!

Hi CM,
Your question is so pertinent, and was one of the first questions my husband and I asked before and right after surgery when the liver piece was sent for pathology.  The next question is how.  Although there seem to be no real answers, it is something that is always in the back of your mind.  With this being a second primary for my husband, we had yearly CTs etc, this nasty cancer really snuck up on us. 

Thank you Dr. Sonneday for posting it means so much to those who have cc and those who are the caregivers.  Thank you for your work, and giving so many people -- time.  Our surgeon was Dr. Mark Orloff in Rochester NY, our hero.


I am so sorry for your news.  Try to stay strong for your Mom.  Live each day one foot in front of the other, and spend much quality time together.  Support and prayers to you and your Mom. 

My heart goes out to you, but as Marion said, its best to get all the results together to see which way to go.  Stay strong for your Mom.  You will be amazed by the strength you have.  Support, prayers and good thoughts to you and your Mom,

Hi Peony,
You are a great inspiration.  Before I joined this group, I read your posts as our husbands are about the same age.  You have so much courage and your husband is lucky to have you.  We can do this, keep up focused and never loose hope.  My thoughts and prayers are with you

Thanks for your words of experience.  I am glad you have stayed with this site, as it must be hard reliving some of this.  You too are very strong.  I am giving my husband the boost drinks and doing every high nutrition / high calorie food I can think of.  He is thin and was in great shape to begin with!  Thanks again for the support any other words of wisdom are appreciated.

Hi Derin,
Thanks for the response!  The chemo and radiation have been going ok.  Not great, as he has alot of nausea and is very tired,  His side is quite painful, but remember he just had surgery and this started only 3 weeks after, so it is all quite fresh.  He is working and does alot of walking.  The area of radiation is also quite extensive since there was a positive margin and a positive lymph node.  All in all though, he never complains and has only lost a few pounds.  He is getting IMRT in a tomo machine, so the area is more precise as not to hurt his remaining kidney.  They are treating him quite aggressively.  The good news is there is just 4 treatments left.  The xeloda does not seem to be the problem.  He has had no hair loss, just some thinning.  The gemzar sounds like it will be much better.  I found out today that he wont be getting the cisplatin due to the single kidney.  Counts are good.  Scans scheduled again for May 8th then Gemzar starting May 15.  Keep focused you will do great!  Was your surgery laproscopic?  My husbands was not.
Keep us posted, any thoughts are so appreciated

Thank you Nancy for your kind words, with the meaning of this Easter season.  I have read about your courageous, strong journey.  You give much inspiration.  Thank you for staying active with this web site.  I will keep everyone posted.  Sometimes I feel like I am waiting for the other shoe to drop.
Holding on to hope

Hi Derin,
Thanks for your response.  I read your posts and what a trip you have had!  With your chemo treatment, how did you fare?  Did you have much nausea, fatigue etc?  It seems my husbands treatments are backward from yours as he will be starting the fifth and final week of radiation and xeloda.  I will ask the oncologist about the cisplatin in addition to the gemzar.  How long was your IV chemo?  Just looking for every way to make sure this cancer does not come back.  I am so glad you are doing well!  Always moving forward, thats the key!!  Please let you know what side effects you may have had, Thanks
so much!!!

How can I thank all of you who have reponded, it is just overwhelming!  We don't have much family, so this is just great!
Lainy- you got it!! exactly how I feel.  I make the slightest flinch, face, or get upset in any way and my husband is upside down.  He relies on me for strength and knowledge.  The car really is my safe haven, and I can come back refreshed.  Wow, I am not crazy!!  Its just that he is very worried, and does not want leave his family.  I reassure him constantly because I feel your mind has to be in the right place to beat this!  Thank you for your kind words.
Pam- Much strength to you and your daughter, you are a great mom!  I will need to read your posts and see your story.  You have to hold on to hope as it is what holds us.  I also know the tremendous power of prayer, it helps!  Thanks you for your support!
Marion- The chemoradiation is taking quite a toll.  It is starting to really wear him out, but he doesn't complain.  I see it in his face, he has lost about 20 pounds (he is great shape to begin with), his eyes are tired.  Being so fresh from surgery, and all the radiation, his belly is starting to distend.  By the end of the day he is hunched over a bit.  The ursodial (actigall) he is taking to thin his bile along with the treatment makes him nauseated, however, he is on his feet working.  Thanks so much for asking, and I will keep you posted! ~Amy

Hi Patty,
My husband is currently getting IMRT as he had a Left radical nphrectomy for cancer already and they had to protect the right kidney during radiation.  He is in his 4th week of radiation and they are radiating a large area, as he had a positive surgical margin fron the right hepectomy done jan 25 of this year and a positive lymph node.  He is doing well with it and is working.  He is 47 and is also taking xeloda during this 5 1/2 week stint.  He is however very tired and his side is bothering him, although remember he just had a big surgery too.  I think you will do fine, the treatments are precise and quick.  Its the positioning that takes a few minutes!!  Good luck and stay strong.  I would like to hear how you do!!
a caring friend

His surgeon is Dr. Mark Orloff (Solid Organ Transplant and Hepatosurgery) and our oncologist is also Alok Khorana.  What a small world!!!  The radiation oncologist is Dr Katz.  Dr Orloff was the best.  My husbands case was presented to the tumor board several times and the GI conference there.  Radiology was convinced the resection could not be successfully done as there may not be enough remnant liver left.  But he thought he could get it and did.  The surgery actually ended up being delayed by an hour due to debate.  We were really pushed through fast, because of the severity when the symptoms finally presented itself.  Hilton is a great little town.   We work in Henrietta.  Thanks so much for the reply, lets keep in touch!!

Thank you so much Gavin and Cathy.  Knowing there are folks who care mean alot, especially when you feel like you can't do enough to make everything better.  People who complain about their normal boring lives just don't get it.  Normal is good!
Thanks again!!

Hi Randi
I am a new member.  I just posted yesterday.  My husband has intrahepatic cc, diagnosed this year,  and it is his second primary.  The first was a renal cell ca in 2004.  We had wonderful care at Strong Memorial and are following up at Wilmot.  The resection was done end of January, with a very heroic surgeon.  He is going through tomography (IMRT) and on xeloda which will then follow with gemzar.  We do live in the area, Farmington, so there is someone close to you! If you get the chance read the post under introductions, my name is Amy.  Glad there is someone close (and as sad as it is,  with multiple primaries to boot).  We are still in disbelief with all this, any thoughts are so appreciated!

Hi Twoforjoy,
I can certainly understand how your feeling picking up the slack in every area, especially with such young kids.  I feel the same, although my kids are older, the youngest is 12, then 14 and 17, the two older ones are out of the house.  Still, keeping up with the house, sports schedules, school, and helping run his business, does not leave alot of time for anything except exhausted sleep, but you will find how much you can do, and will feel good to just keep things running.  I know how much I just miss "normal".  Keep your chin up and do what you can do the rest will be there
All the best, and my thoughts are with you.....
A fellow caretaker of everything and everybody

I can understand exactly how you feel.  Nobody wnts those seats!  Hope strength and courage are what you need to dig deep for.  Watching my husband struggle through is not easy. Be strong for your Dad and never give up hope.  Too many people are relying on you. Prayers are with you and your Dad, and your family too~Amy

Hello to all,
I am sorry and glad to have found an outlet for this very insidious cancer that has struck our family as it has so many others.  My husband started just itching like crazy December 12, 2011 and what a trip it has been to this point. I did not leave a moment to waste as he had a left radical nephrectomy in 2004 from a renal cell carcinoma that was found quite by fluke.  Yearly CT scans and chest xrays have always been clear.  He was due for flow up of that again in January.  Two days after the itching started I noticed he was getting jaundice. We were on it immediately. Numerous tests, CTs, MRIs, MRCP, Lab work with a total bili of 18.6 right before surgery, an ERCP 3 times with the placement and replacement of a L duct stent, PTC, and finally a hard right lobe resection leaving only one third of his liver done January 25. We lost no time!! He has been through alot in a very short period of time, and I have to say we had a great surgeon who took the risk to go in after it.  The diagnosis was finally intrahepatic cc, stage IV.  During surgery, frozen section margins were clear, however on final pathology there was a postitve margin as originally there was only a 1mm margin from tumor to clear liver cells.  They also found a positive lymph node imbedded in the liver.  It was a mass forming type that was extensive.  It had totally blocked the bile duct on the right side of his liver and almost occulded the left. This is the second primary in just 7 years.  He is currently on chemoradiation,  xeloda and radiation for 5 1/2 weeks.  He starting week 4.  He will have a few weeks off then 4 months of gemzar IV 3 weeks on and one off. 
He has been very strong.  We have 5 children, 25, 22, 17, 14, and 12.  I have read many posts that have been left here and we are not alone.  There is much courage and strength from all that have been effected. The medical oncolgist says the likelyhood of this returning is quite high.  I thank God for everyday I have with my husband, and will never show him how scared I really am.  I am a nurse and understand the severity of all this and also the hope that I hang on to.
Thanks for the introduction, and the opportunity to share our story, along with the rest.  Any thoughts are appreciated.....