Thanks for the update.
Umm....maybe you need to come to my house!
1 Sat, 18 May 2013 07:03:01
Re: Lauren Doing a Tad Better (18 replies, posted in General Discussion)
2 Fri, 17 May 2013 15:13:33
Re: Lauren's 2nd Surgery News (38 replies, posted in General Discussion)
Praying without ceasing Pam.
What else can we do?
3 Fri, 17 May 2013 08:20:03
Re: What happens when.... (4 replies, posted in Chemotherapy)
I'm guessing all doctors are different but.....
My doctor will just move it back a week. Then recheck my blood and go from there. I remember my first off week due to blood counts. I was so devastated. Now, when I get one, I want to jump for joy! LOL
4 Fri, 17 May 2013 08:17:59
Re: Lauren's 2nd Surgery News (38 replies, posted in General Discussion)
Sending lots of prayers Pam! So glad the doctors are on top of everything. (hugs)
5 Mon, 13 May 2013 21:13:18
Re: I might be getting a new liver...and SOON! (25 replies, posted in General Discussion)
Still here and waiting! Talked to the Methodist Hospital today, and there isn't much they can say. Still could be any time or weeks. Now that mothers day is over, I wish it would hurry and get here.
I have a few emails from yall. I'm going to reply to them tomorrow, it was a busy weekend.
<3
6 Mon, 13 May 2013 21:10:21
Re: First PET scan results and CA 19-9 results since finishing chemo (11 replies, posted in Good News / What's Working)
Awesome news! So happy for y'all!
7 Fri, 10 May 2013 20:42:03
Re: chemo has started (12 replies, posted in Chemotherapy)
marions wrote:
Additional information
Appears that physicians within certain institutions set their own criteria by loosely following the criteria for Hepatocellular cancer transplants.
It is a team effort including transplant surgeons. Patients are evaluated on a case by case basis. Criteria include positive response to therapy and non-rapid disease progression.
So, it appears that each case is different and each patient is decided on individually.
Hugs,
Marion
I agree with this Marion! I was talking to Methodist, and they told me they had a woman with intrahepatic CC, and she had been turned down for transplant at 3 centers. She went there with no hope. The agreed to list her for an extended donor. 3 years later, she is still doing very well, and cancer free!
They also do SO much testing there, I went through it all. If you don't pass a test, you don't get listed.
8 Fri, 10 May 2013 20:35:01
Re: chemo has started (12 replies, posted in Chemotherapy)
dmj4ctj wrote:
I am SO excited for you Tiffany!! I'm really glad they've expanded the criteria so that more people have a chance of beating this disease. BTW, whatever happened to the option of a living donor transplant?
Dianne
Thank you!!!
My surgon believes I would do better with a whole liver, and said living donor wasn't really for me.
9 Fri, 10 May 2013 18:08:50
Re: GTX treatment (2 replies, posted in New Developments)
I do two weeks on, one week off.
10 Fri, 10 May 2013 12:31:44
Re: I might be getting a new liver...and SOON! (25 replies, posted in General Discussion)
Lainy wrote:
Tiff, your killin me, in a good way. Everytime I see that you have made a new post I just jump! It's like I am waiting for a new baby to come!
I'm ready to deLIVER this baby! LOLOLOL
Thank you all for the thoughts and prayers.
11 Fri, 10 May 2013 08:51:06
Re: I might be getting a new liver...and SOON! (25 replies, posted in General Discussion)
Thank you all! Today I'm going to pack a small bag, I don't think I will need too much until after I get out of the hospital. And because we will be flying on a small jet, we can't take a lot of stuff with us.
12 Fri, 10 May 2013 08:49:01
Re: chemo has started (12 replies, posted in Chemotherapy)
dmj4ctj wrote:
This discussion is fascinating to me and I have a question. I understand why a liver transplant is not an option when the CC has metastisized outside the liver, but why not do one for cancer that appears to be completely contained in the liver as in ICC with mets to liver?
From what I know, some places will consider a transplant if it is completely contained to the liver.
When I first learned I have CC I had mets in the left and right lobes. Thankfully chemo has cleaned it all up, and now I might be getting a new liver any day!
13 Thu, 09 May 2013 21:52:34
Re: I might be getting a new liver...and SOON! (25 replies, posted in General Discussion)
God is working it out for me! I'm excited!
I'm worried they will open me up and find more. What is everyone's thoughts on this? I have had 2 clean PET scans
14 Thu, 09 May 2013 21:42:14
Re: I might be getting a new liver...and SOON! (25 replies, posted in General Discussion)
Right now I'm in Alabama. I have 3 people that own their jets and are willing to take me out there day or night. They are on call to me. There is also 3 flights to Huston, but that would all be in the timing of when they call me, if I use them (United I think).
I might head out there around the holiday and wait.
I also like the odds of this! Dr. Javle said if it was to develop that it could take 20-30 years. He also said there will be better treatments.
I will try to keep yall updated! If not, Lisa is in the loop! So she can post for me!
Marions- Isnt this all crazy! Just after our emails!
15 Thu, 09 May 2013 17:48:45
Re: Blood Pressure (11 replies, posted in General Discussion)
Pain medicine always made my BP go down.
Keep us updated!
16 Thu, 09 May 2013 17:46:39
Re: Decrease in CA 19-9 (7 replies, posted in Good News / What's Working)
That is great news!! Keep us updated! When is the next scan?
17 Thu, 09 May 2013 13:58:04
Topic: I might be getting a new liver...and SOON! (25 replies, posted in General Discussion)
I'm going to be part of a donino liver transplant!
The persons liver I will be getting is on the very top of the list, because of a heart problem.
To read more about what is going on here.....
http://www.ncbi.nlm.nih.gov/pubmed/18555132
He does have FAP. I have talk to a few doctors....Dr.javle, Dr. Fung from the Cleveland clinic and all the doctors and surgeons at Methodist think its the best for me! I might not ever give me any problems, and if it does, it could take 30 years to develop. That's a lot better odds than CC!
It could be any day...or a few weeks. We just don't know!
18 Thu, 09 May 2013 13:50:17
Re: My Past, Present, and Future (I hope!). (9 replies, posted in General Discussion)
Thank you everyone for your support!
Dorien- yes that is me! :-D stage 4 and it was / is only in the liver.
19 Sun, 05 May 2013 14:59:59
Re: What is working and hope to be helpful to others: (15 replies, posted in Good News / What's Working)
Susan- I'm also on GTX and have had great results from it!
The only problems I am having is fatigue and its doing a number on my nails.
20 Sun, 05 May 2013 14:51:21
Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice (35 replies, posted in General Discussion)
Thank you Marion! I started a new topic about my plan! I didn't want to take over Jason's. 
)
Jason- If it hasn't spread, then you should take to the doctors about transplant. I see Dr. Javle at MD Anderson, and he helped me get on the list at Methodist!
21 Sun, 05 May 2013 14:41:57
Topic: My Past, Present, and Future (I hope!). (9 replies, posted in General Discussion)
Hello everyone! I had been asked to share my treatment and transplant plans. So I thought I would just start a new topic and post everything I have done to get to where I am.
- We learned I have CC in October 27, 2011 at the age of 29.
- Went to MD Anderson to see Dr. Javle early November 2011. He recommended Gemzar and Cisplatin plus Tarceva. He said surgery and transplant would not happen.
- Had 16 rounds of gem/cis and then had a reaction to cisplatin.
- Chemo was then changed to Gemzar and Xeloda. First scan on this treatment showed positive results, this was 08/2012. At this point I was referred to the Methodist hospital in Houston to see if I could be placed on the transplant list. After days of testing, and results came back good, and I was placed on the list.
- 3 months after that my scans showed a new tumor in my liver.
- Started GTX in November 2012.
- Had a biopsy on the new tumor in December, and it came back as no cancer!
- Went back to MDA in Feb 2013, had a PET scan. The scan showed complete response to therapy. No uptake.
- I just go home from MDA last week. I had another PET scan. It again showed complete response, no uptake.
So, Dr. Javle wants me to keep doing to GTX. I was doing it two week on, one week off. He said he thinks we can back off a little and do two weeks on two weeks off! I'm excited to get some extra time off! 
For the transplant- because my liver functions are normal, bili is normal, ect it puts me at the very bottom of the list. Dr. Javle and the doctor at the Methodist hospital want me to travel to a few different centers and see if I can get placed on their list as well (TX has the longest wait).
While waiting I will keep doing chemo. I'm lucky to feel pretty good! My energy is low and I have a little chemo brain so Dr. Javle put me on provigil. It's helping a little! I'm in no pain and I can't stop eating, I even put on 10lbs since Christmas. Opps!
If there are any questions about my treatment or doctors feel free to reply here or send me an email!
22 Sat, 04 May 2013 22:58:35
Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice (35 replies, posted in General Discussion)
Hi Jason!
I don't have much more too add. Looks like you have got some awesome advice!
Has it spread from your liver? If not, you might want to look into transplant. There are a few good hospitals that will transplant CC patients. I have been on the list for months.
Anyways, your not alone! Hang in there.
23 Tue, 30 Apr 2013 16:27:00
Topic: Another PET down (9 replies, posted in Good News / What's Working)
I'm happy to report that my pet showed stable and no uptake again.
Dr. Javle wants me to keep doing the GTX and wait for a liver. We are going to start looking at centers that might have a shorter wait.
24 Tue, 02 Apr 2013 19:03:32
Re: New to this forum (14 replies, posted in General Discussion)
I would get another opinion. I'm being see at MD Anderson in TX! Dr. Javle is my doctor, and I love him! A lot of people on here talk about him.
I'm stage 4, and my last scan showed no cancer. There is hope!
25 Wed, 20 Feb 2013 20:27:13
Re: GTX (9 replies, posted in Chemotherapy)
positiveattitude wrote:
Hi Tiffany,
I just started GTX and your post is inspiring! Hope you are doing well. Just finished second round. The steroids are keeping me 'up' for now! I find I am craving carbs which is completely different than my last chemo when I couldn't eat anything!
I truly wish for your good health.
Positive Attitude
Thank you!
I'm still on it, and doing great!
How are you doing on it?
