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You give much hope to many of us. You make me smile.
Although I have not been on the board for the last week (because I was letting it get me down instead of using it as a support) I could not resist coming back to this discussion to find out about your appointments. Great news about your blood tests and cat scan! People here have taught me that stable is excellent news.
Lainy, you seem so selfless all the time talking about Teddy and helping others on the site; I also wonder about you. What kind of cancer do you have? How are you doing? I hope it’s stable.
Are you still having the “activity” around your liver? Hope you are feeling better.
A surgeon at Mayo told me there wasn’t a lot of difference between a CT scan and a MRI as far as he was concerned. Then he jokingly added that you can’t tell the MRI people that. The U of I Hospital and Clinics did the CT scans. I personally don’t know the difference.
I’ve sent you an email through this site.
I know this post is a few months old, but thank you for posting your feelings. I do understand where others are coming from and the need to say what they feel, but as a person with inoperable bile duct cancer who is doing great (diagnosed July 09), I firsthand understand what you are saying.
I so love what you said, “Yet it is what it is and all I can do is figure that I’m immortal until God decides He’s done with me here on earth.” I’d like to post that on my facebook page!
This is the best news of the day!
This waiting game for doctors, insurance companies, tests and then test results is hard. It can put your stomach in knots! If the doctors want to see you, I’d take that as a good sign.
Sorry you are not feeling so good. I know whenever I do not feel good the first thing I think is, “It’s the cancer.” I hate it when doctors do that, and they do; but I do it too :o( There’s a lot that can temporarily upset the system or make you sick. It doesn’t have to be the cancer.
Hope this is a good day.
I’m sorry, Marion. It’s sometimes hard for me to know who is the caregiver, who is the patient or who has been the caregiver.
Thank you for staying so active on this board and helping all of us in so many ways. God bless you.
Yes, my oncologist suggested Gem/C chombo in February. The plan now is to start after my May 12th appt. which will include an MRI – checking first with my GI doctor to find out if the stent can possibly last through treatment or if it should be changed before I start. They can change the stent during treatment if necessary, but would rather not.
Fortunately, I have not had any prior physical problems. Is your husband currently on Xeloda? I had 24/7 FU-5 and radiation last fall. No shrinkage, but stopped it from growing.
Please let us know what the doctor said about brachytherapy. I think that is one of the options Mayo said I could not have because of my increased risk of infection. I will specifically ask next month at my appt.
I’ve never noticed a CEA test on my lab reports.
After reading the links Marion has posted about Gezmar and Cisplatin and learning more about it, I am now ready to have chemo a part of my life for several months.
I just looked up a some of your posts and discovered we have a lot in common.
My diagnose of bile duct cancer came in July 09. My tumor is inoperable, not a candidate for liver transplant, have been told to eat anything and everything I wanted by one of my doctors, and “it is amazing to me how good I feel even though I have this awful cancer, but I believe it is my faith in God and all my friends who are praying for me.”
Now the doctor hasn’t told me to gain weight :o) I could loose 20 pounds and still be fine. I do eat four long stalks of canned asparagus twice a day. This was an internet cure – false – but I figured it couldn’t hurt. I also eat 3-4 prunes a day and basically lots of other fiber foods. If I didn’t have this diagnosis (and a little chemo brain) I would still think I was healthy, like I have always been. My doctors did not expect me to do this good.
I do not want a port because I want to feel as normal as possible. I hated the PICC line but had to have one as I had 24/7 FU chemo with radiation last fall. (It was nice that they could use it for blood tests). I have asked a chemo nurse if I would have to have a port with chemo about once a week and he said,”No, not if you have good veins.” Then he looked at my veins and said they were good.” My Mayo doctors say I’m not a candidate for other therapy (beads and photo, I think) because I am too high risk for infection. I’ve had two bacterial blood infections. It seems to me that a port would be an entrance for infection, adding a little higher risk. (This is just my own rationalization). I’ve also read that some ports hurt. I do understand that many people love their ports. Never know what life will bring. I may end up being one of those people who love their port, but not now.
I’m not sure. Maybe because he knows I don’t want one. I did not like the PICC line. I asked him if I would have to have one and he said no.
My oncologist is recommending gezmar and cisplatin. He’s not mentioned Xeolda.
Great to hear from you! It’s amazing how a person can feel so much better in a few days time – you will.
Fortunately there is some research on cholangiocarcinoma. Mayo Clinic in Rochester took about five tubes of my blood for study now and study in the future. The consent form included giving my blood to other institutions for study. There was an accompanying questionnaire.
My parents are 93 and 94 – living. No cancer in my family. I’ve always been a very healthy female (no military service). Now at 60 inoperable cc stage 4.
If some CC is associated with military service in Asia I do hope they find that out quickly so these men and women can be screened for early detection. I understand peoples anger, but I don’t think it’s a cover up by the military if Mayo or other large research facilities cannot pin point CC to service overseas. Its my own personal opinion that our military personnel should have coverage for everything; but I hope fighting is done for research, not compensation.
I’ve been on Leviquin for infections and also after stent replacement. It has never had the effect of knocking me out. Just makes me constipated. Medicine does react differently on different people, though.