1 (edited by tiff1496 Sun, 05 May 2013 13:52:58)

Topic: My Past, Present, and Future (I hope!).

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! smile
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!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: My Past, Present, and Future (I hope!).

No questions Tiff, just know your in my prayers!

Re: My Past, Present, and Future (I hope!).

Thanks, Tiff, you are a trooper for reposting your story.  Unlike the other transplants reported on this site, your disease is intrahepatic Cholangiocarcinoma.  I wish for all good things to continue, dear Tiff.
A tidal wave of good wishes are heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Past, Present, and Future (I hope!).

That's such an inspiring g story, Tiff!!

Willow

Re: My Past, Present, and Future (I hope!).

Tiff,
So happy for you. The GTX must be really good stuff! The steroids I have been taking make me feel like a hungry heffer!
Luv ya
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: My Past, Present, and Future (I hope!).

Hi Tiff,

Praying that you get the call. I'm so happy you are doing well. You should check out U of M about getting on their transplant list. Dr. S does tons of them.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Past, Present, and Future (I hope!).

Thanks for doing that Tiff, you rock!!!  I know that what you have shared about what you have been through already will be of great help and inspiration as well to others, and you know that we are all looking forward to hearing about your future as well!!

Big hug for you!

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Past, Present, and Future (I hope!).

ok i have a question!    (i think i follow you instagram--right?)
i'm the "bompie4"---

anyway, wondering your original "staging" of the cancer--and am
assuming it was only in the liver.

I always like to hear what/where everyone who has hope started!

thanks for sharing.

you are so so young!! i hope only the very best things with you
and your outcome!!!
Dorien

Re: My Past, Present, and Future (I hope!).

Tiffany-I know we have talked about Dr. Chapman and I was wondering if Barnes is an option. I know when I made it to the transplant list my MELD score started at mid 20's and when I was finally transplanted it was mid 30's. Dr. Chapman was very aggressive in getting my score raised constantly. I was on list 5 months and had 3 calls, third times  a charm!!
Lots of prayers and HOPE-Cathy

Re: My Past, Present, and Future (I hope!).

Thank you everyone for your support!
Dorien- yes that is me! :-D stage 4 and it was / is only in the liver.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013