July 4, 2010 at 11:55 am #35455judipMember
COngratulations Kristin! I hope everything goes well for you with the chemo should that be the next mode of treatment for you. Good luck with your CT scans…
Here is our experience thus far with that combo chemo.
My brother started on gemcitabine and oxaliplatin when his CC was diagnosed as inoperable back in November. He continued Dec 2010 through Jun on the treatments which shrunk the tumors in his lung and liver quite substanially and were not even seen anymore in the lymph. His tumor marker over that time decreased from 1571 to 99. He recently changed to gemcitabine alone just this month when the neuropathy got a little too much to take but otherwise has been doing well with little other adverse effects.
He entered the hospital last night due to stomach pains which was diagnosed as gall bladder inflammation. We wait to hear if he needs it to be removed or just antibiotics continued for now. I was just online trying to find out more information about gall bladder procedures before I go back to the hospital this morning.July 2, 2010 at 4:11 am #35454linda-zParticipant
seeing this post again gave me a big smile. There is hope even for those who have been “told” there is nothing to do. You have shown that. Keep up the fight and thanks for giving us all more hope for the duration.
Good luck with your CT scan next week.
(here’s wishing ALL of us that have tumors that they will be very lazy, wimpy tumors too!)
Linda Z.July 1, 2010 at 10:33 pm #35453kristinParticipant
I’m really sorry about this long delay in replying to your post– I was up north visiting with my family for a few weeks and couldn’t go online much. To summarize my story very briefly, in 2/04 I was diagnosed and had a resection with no follow-up treatment; 9/06 I had a recurrence and failed surgery (the tumor is on a blood vessel) followed by 7 weeks radiation and Xeloda. The tumor was basically stable until 3/10, when it started giving me trouble again, though they couldn’t find the growth on any CAT or PET scans. Finally they realized that the tumor had grown somewhat and was squashing my bile duct against my liver, and they put in an external drain.
Next week I go for another CAT scan and then see my oncologist to decide what we’re going to do– he thinks chemo with gemzar and oxaliplatin. So, the adventure continues! But I have been officially “incurable” for 4 years now, and have had the disease for about 7 years (it took a long time to get the symptoms diagnosed.) I still have lots of hope, and like you, am trusting in prayer.
Congratulations on your fabulous results from chemo!! I hope those drugs have walloped your tumors so bad they’ll just plain give up. (I like to think that I have a very lazy, wimpy tumor…)
Wishing you all the best–
KristinJune 24, 2010 at 8:33 pm #35452clkempfParticipant
Congrats.. May you have MANY more years!!!
May I ask what your diagnose was and how you’ve been getting treatments? I too was told CC, incurable with 3-6 months to live, I am on month 9 now and feel pretty good. Can’t do surgery, or no transplant for me, position of tumors wrapped around the ducts. But I had 3 radiations, and am on chemo gemzar & cisplatin. Tumor went from the size of an orabge to teh size of jelly bean, VERY thankful for that. Jesus is great! Round 10 of chemo is almost complete. I guess I will be on chemo until I die or until something else pops along….please tell us what we can do to help ourselves. Many many thanks on your inspiration and giving us hope!! CherylJune 24, 2010 at 7:10 pm #35451kentuckyjackMember
Congratulations, Kristin. God only knows what the future holds, but he seems to be holding you gently in the palm of his hand. May he continue to do so, and may he continue to bless you with the joy at living you’ve expressed here and now.March 19, 2010 at 9:26 am #35450magicParticipant
Thats great Kristin,nice post JanetMarch 19, 2010 at 1:12 am #35449marys-sonParticipant
My mom’s CA-19 score started out at 565. It started in her bile ducts that split in the liver and had matasitised to just one lobe of her liver. Here in the States, the Tarceva is an expensive drug. The co-pay runs about $2,900.00 a month until you’re out of the donut hole with medicare. The best of luck to you.March 18, 2010 at 7:11 am #35448rowena32Member
Kristin, I am so happy for you. Last July I was told I had six months for it was incurable and there was no remission for it. A doctor put in a stent in the bile duct and I have had chemo (gemzar) and radiation. Since the treatments, the CT scan showed no change. My CA-19 started coming down until last month and it went from 1525 back up to 4078. After ordering a CT scan, the doctor decided to hold off of more chemo for now since there was no change in the CT scan. I feel good but I have lost a lot of weight. I would like to ask Mary’s son if his mother’s CA-19 test ever got in the thousands? I am going to mention to my doctor about Tarceva. She mentioned that if and when I have to start chemo, again, she would do a combination of genzar and carbo. It makes me feel good to hear all the good news. Congratulations to both Kristin and Mary.March 18, 2010 at 3:53 am #35447marionsModerator
Mary’s son…..Congratulations. This is the news we thrive on. On to continued success with her treatments.
Best of all wishes,
MarionMarch 18, 2010 at 2:38 am #35446lainyParticipant
Dear Mary’s Son, what fantastic news to share with us. We are so very happy for your Mom. The right ONC, the right plan and lots of faith and hope can produce Miracles. We have seen them on this site. Thanks and please let us now how Mom progresses.March 18, 2010 at 12:50 am #35445marys-sonParticipant
just wanted to share some good news. My mother was diagnosed with this disease back in August of last year and the prognosis wasn’t encouraging at all. Basically they gave her 6 months/year to live. She started on a regiment of gemsidabean (sp?) every other week with an oral chemo drug called Tarceva everyday. Her CA-19 score has been steadily going down. She had a CT scan last week and we met with the OC today and were shockingly thrilled that the tumors had shrunk by about 20% Her CA-19 was down to 24. Thanks to her oc and the grace of God, she’s getting stronger everyday!!February 12, 2010 at 9:42 pm #35444judipMember
Happy Anniversary Kristin and many many more!!
JudiFebruary 10, 2010 at 10:26 pm #35443tiapattyMember
What great news and please don’t stop being so philosophical! I am convinced it is good for your health!
PattyFebruary 10, 2010 at 5:22 pm #35442RandiParticipant
Great news, happy anniversary and here’s to 50 more years! You beat the odds and give hope to us all.
-Randi-February 10, 2010 at 1:15 pm #35441kristinParticipant
I too was originally told that I wasn’t a candidate for radiation, but I insisted on talking to a radiation oncologist, and they treated me and it worked very well. We all need to follow our intuitions and keep pushing to get what we need.
Wishing you 23 YEARS– at least!
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