god bless you, i have had 20 months more then expected. <prayers are the answer....

i have written many times about this type of canceer. but thsi time it is different. dr @ mayo told me that tumor is wrapped and can not give me liver transplant or surgery. and that only hope now is possibility of burning it, alcohol, or cyber knife. and - chemo i am taking gemzar -w cisplaitin. i started out with 5 tumors and now am down to 1, the 1 that is wrapped ....doctor keeps talking about location, location...what do i do...i am at a loss....

I hate these pain meds....they make me feel horrible and non-functionable....what else can I do? I have Stage 4, w/mets to liver. But tests are coming back better each doctor visit. So, how can I get relief without using the drugs? I have tried the mind over matter thing that doesn't work...now what??? As the months pass, I feel better but still have pain, ranging from 3-6....

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(17 replies, posted in General Discussion)

Keep the Faith!

I got great news last week, tumor markers are down to 61 from 92 last month....so now my alk phos is up...what the heck????  What am I doing wrong...? I try to rest, eat well, and I walk a lot shopping and getting out ..... Can anyone clear this confusion up? I feel good, but tired today, but tomorrow I may have tons of energy. Have had lots of surgeries, tubes, ports, chemo, embolizations, sir spheres, etc. I was given 3-6 months 1.5 years ago. I am 54....fustrated with the ups and downs of this disease. If anyone could just tell me what is happening..and what to expect next....

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(11 replies, posted in General Discussion)

CONGRATS CATHY! smile

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(11 replies, posted in General Discussion)

http://www.bernetriweekly.com/  I was on front page talking about cholangiocarcinoma, Dec 24th edition. I tell everyone how and who is keeping me alive!!  smile


Got it copied how do I place it online?

Thank you thank you sooo much! I have been so worried about it. I try really hard to give it to the Lord, but occassionally I get worked up. I guess that is normal, as normal as it can be. I feel really good right now. Had a kidney infection and dehydration, but 3 hours of IVs and a week of antibodics, I feel so much better. I really wish I could give you all hugs and pray that we all fell better soon! My oncologist is baffeled as to why the markers are going up and the tumors are still shrinking, she suspects we'll see a change in the near future. I have been so blessed and happy. Can't get better then this! Thanks again smile

nur1954
Thanks!

Why is no one answering my question??? I am really in need of an answer. Thanks hmm

What does it mean when a tumor marker CA-19 are rising, and tumors have not grown or spread since July. Tumors are still skrinking.

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!! Cheryl smile

Your family are in our thoughts and prayers. We shall all meet again!

Lainey;
New to this discussion. But I want to add my 2 cents and tell Teddy you are a brave brave man. YOU do what in your heart feels right. Give your life to Christ and let him be your guide. If you looked at me now you could not tell I am ill either. I am 53, and a bit "fluffy". My mother has Prayer signs all over the city for me and when I go anywhere they ask me what is wrong because I look so good. I am Stage 4 with a original 3-6 month sentance, I am now going on my 9th-10th month with feeling great. I was told I might not see green grass.... and here it is June! I am on Cisp/genzar and love it. Barely any side effects, thinning of the hair, and a tad bit of nausea 2 days after chemo. I have have enternal radiation 3xs and the tumors are still shrinking. I praise the Lord for all he has given me. Days are gifts now and I try not to take them for granted. Teddy, you go have fun and enjoy life to the fullest, heck go sky diving if you feel like it..... I am going to Sweden this next Fall to see another Grandchild be born, and nothing but death will keep me away. So even if I have poor quality of life at that point.... I will push myself to go...I have (had) red hair (now grey), and a spunky attiutude so I know that is another reason why I am still here....Keep on believing because it's all we have....  smile

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(10 replies, posted in General Discussion)

I am in month 9 and seeing the green grass I was told I would never see. Praise be to the Lord Jesus Christ.

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(6 replies, posted in General Discussion)

Which Mayo? There are lots of companies that will help with flights online. But you have to qualify early enough to get a seat. One is called Angel Flight. We drive 10 hours 1 way, and get rembursied thru our insurance. Go to Bing and type in free Cancer flights.

I know I am grasping at straws but a lady called me yesterday and told me about this radio talk show doctor, Dr. Leonard Coldwell. Supposebly, he has a 92% cure rate for cancer.  Anyone heard of had dealings with him etc? I know there is NO "cure" for CC however, has he given a good quality of life LONGER then the tradition ways? We are people grasping for a miracle in order to live longer, we have to leave no stone unturned. ESPECIALLY our Lord Jesus Christ...which btw is why I am still here.
53 years old, Stage 4 CC, mets in liver and lungs, diagnoised Sept. 2009, was not suppose to see green grass, and we are at my 9th month and seeing green grass! Still here kicking and smiling because of all the prayers!!!

Cheryl K
Indiana

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(10 replies, posted in General Discussion)

Dearest Margaret,
I too have this dreaded cancer. My largest living tumor has shrunk from the size of a orange to the size of a jelly bean. The tumor itself is still large but mostly dead. The smaller ones are gone, all  thanks to The Mayo in Minnesota, and Fort Wayne Onocology.
So far I have underwent Sir-Sphere (read on Google/Bing) and chemomembolization and chemo. I have Stage 4 with mets to the liver and lungs. I was told originally I had less then 6 months. That was over 8 months ago. I feel good and so far look good.
Never stop hopeing! I will pray for your husband. Tell him to fight, and pray...it is what counts. I have been through the journey your going thru, and it is hard....cry, scream, but never give up. I plan on being here as long as I can.
Clkempf  smile

I had the Sir-Sphere in Oct, wonderful!! That is the only word I can use for this procedure. I never got ill and it shrank my tumor 25%-50% . Then in December I had a chemoembolizism, still waiting to hear if this is working, go back to the Mayo in Feb. But all my bloodwork is going up and I only have slight pain. I have 1 huge tumor and 5 walnut size smaller ones in my liver and 5 small peas size tumors in my lungs. The biggest one was about the size of an orange and now it looks like a tangerine. Hopefully it will look like a grape or be shriveled up and dying. I am so thankful for the newest procedure that the Mayo Clinic has for this cancer. I didn't get ill with the Sir-Sphere, but I got knocked on my butt with the embolization. But I never stopped taking my normal chemo treatments and so, that was like a double whammy on my system. I was so tired not just ill. It zapped all my energy.
I am 52, and strong willed, with red hair. I believe in Jesus Christ and the power of prayer. I truly believ without this I would have died a long time ago. I was diagnoised in Sept, and was given less then 6 months. But with the Lord and the Mayo Clinic I was just given another 6 months because of the treatments. Praise the Lord they are working! Hopefully I can continue to improve until they come up with another treatment to combat this horrible cancer.

I had the Sir-Sphere in Oct, wonderful!! That is the only word I can use for this procedure. I never got ill and it shrank my tumor 25%-50% . Then in December I had a chemoembolizism, still waiting to hear if this is working, go back to the Mayo in Feb. But all my bloodwork is going up and I only have slight pain. I have 1 huge tumor and 5 walnut size smaller ones in my liver and 5 small peas size tumors in my lungs. The biggest one was about the size of an orange and now it looks like a tangerine. Hopefully it will look like a grape or be shriveled up and dying. I am so thankful for the newest procedure that the Mayo Clinic has for this cancer. I didn't get ill with the Sir-Sphere, but I got knocked on my butt with the embolization. But I never stopped taking my normal chemo treatments and so, that was like a double whammy on my system. I was so tired not just ill. It zapped all my energy.
I am 52, and strong willed, with red hair. I believe in Jesus Christ and the power of prayer. I truly believ without this I would have died a long time ago. I was diagnoised in Sept, and was given less then 6 months. But with the Lord and the Mayo Clinic I was just given another 6 months because of the treatments. Praise the Lord they are working! Hopefully I can continue to improve until they come up with another treatment to combat this horrible cancer.