Thanks all, yes very exciting news.  He feels ok for the most part.  Goes for treatments every other Thursday, because of the steroids he usually feels great until about Sunday afternoon, then he crashes.  No energy and doesn't do much of anything until about Wednesday but he does have an appetite.  Then he feels fine for about a week before he goes to his next treatment.   Also, one of the drugs causes him to have a weird tingling feeling if he has anything cold for the first 5 days or so after treatment.  He has to drink everything at room temp for those days, and even stepping on a cold tile floor feels like pins and needles, which is strange but he is now getting used to.  And the last side effect of the clinical trial drug is a rash.  We were told that it can get really bad and usually on the face.  He has been lucky, he did get it but it's not too bad, also has it on his back, but they gave him a cream for it and that helps him feel a lot better.

We are going on a family vacation this week, and I am going to be greatful and enjoy every moment smile

My father went for his CT scan, after 6 rounds of chemo (3 drug clinical trial mixture).  The doctor called the day after the scan to tell him that the treatment is helping and his tumors are shrinking.  We didn't get the actual measurement but just that news alone was a push in the right direction.  He was feeling so down and i think it was because he didn't know if he was doing this for nothing. 

When we went to his appointment in Boston on Thursday, they said that the smaller tumors on the right side of his liver were shrinking along with the ones in his lymph nodes on the bottom of his liver.  They didn't really say much about the big one on the left side.  His chemo nurse also told him later that his tumor marker had gone from 392 to 83, she said that's fantastic.  This was the first time we had ever heard the word tumor marker.  So still praying and keeping positive.


(26 replies, posted in Introductions!)

I am completely relating to you when you describe all your feelings.  I have felt them all, and anger is a hard one.  I wish you and your entire family lots of strength.  I hide a lot of my tears around others, but the minute I get alone, is when I tend to fall apart.  Stay strong, I know, easier said than done.


(8 replies, posted in Introductions!)



(7 replies, posted in Introductions!)

I have been going through the same thing, but only for about 6 weeks now with my father.  I am already very familiar with half of the words you mentioned and feel exactly what you described.  Sending prayers your way for your whole family and especially your mom!!


(8 replies, posted in Introductions!)

Unfortunately I don't have the results or wording of the Pet Scan, that is something I don't believe we have.  That is exactly how they stated it to me and my mother.  We have not planned on meeting with an interventional radiologist at this time.  It's so much info, I am feeling extremely overwhelmed, but will not give up on trying to find out everything that I can.

marions: yes we are waiting on the KRAS result for the clinical trial.

I am 30 years old with a 12 year old daughter, who goes to her grandfather's almost everyday after school, as he has a spine disorder, and has been disabled for a few years now.  Beaking this news to her was the hardest thing I've had to do ever.  She is ok with it now, and I am hones with her when she has questions to what I feel is appropriate with her age level.  It amazes me how quickly life can be totally changed in one day.


(8 replies, posted in Introductions!)

Hi all,

We found out about 3 weeks ago that my father has cc.  He is 62 years old.  He had no symptoms at all.  He had some veins bulging in his groind and mentioned it to his doctor.  They did an ultrasound to figure out what the viens were from.  While doing this, they noticed a dark spot around his liver.  So from the ultrasound, he then had a CT Scan, then a 3D CT scan, and also a biopsy.  We got the results, and our worlds have been crazy since.

We first met with an oncologist, who advised we meet with a surgeon and also sent him for PET scan.  We met with the surgeon, who didn't have the PET scan results yet, who said if it was just the one massive tumor on the left side of the liver then they could probably do surgery to remove it.  He wasn't a 100% positive he would do the surgery as my father also had suffered a heart attack approx. a year and half ago.  So, we left the surgeon awaiting the results.  We then got the results by an email about a week later, he has some little cells on the right side of the liver so the surgery is not an option at this point.  We were crushed to hear this news.  So it was back to the oncologist the next week who advised we would just do chemo and hope that it shrinks them.  So, naturally my mother, father, and I agreed we wanted a second opinion at a bigger hospital.

The oncologist, set us up with other oncologist and Mass General in Boston.  So we went there to meet with them, their opinion is the same, however, they do have a clinical trail phast II chemo drug that they are doing for this type of cancer.  He will be elligilbe for it if the tumor has a certain mutation that about 40% of people with this cancer have.  So now, we are waiting to hear about that.  In the mean time, I took him to Boston (a 2 hour driver) again yesterday to have a port put in.  He will start the regular chemo next week and if he does qualify for the other chemo drug, they will just add that in when the find out.  It's been a very overwhelming journey this far.  I am lucky to have such a close family to go through this with.