haiminh
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Hi all,
So what do you think? If a person is normal, just with increased CA199, does she need to have further test and what test she should take? For my Mum, I am having a blood test again for her in 2 weeks. And then, if things are still not good, she may have a PET scan a month after.
Best wishes for you.
MinhHi Theresa, could you pls tell us your status now? Have you been with CC or it is just a extraordinary increase in CA 199? Did you have any treatment before? Hope all the best for you.
Minh
Thank you all for your post. I did think about cholangitis, however my Mum did not have any symptoms like fever, pain, or high WBC, etc… All is normal.
hi Rick, did your Dr tell you which kind of infection you had? Did you have any other symptoms like fever or bad blood count?
Minh
Hi all, it’s very wonderful that you are keeping the positive spirit here
. Unluckily my Mum is not. She always worries about her situation although i think it was very good now, except the CA199 thing.Hope you all would be happy like this and we will overcome all hardest things in this fight.
Minh
Hi all, I have just talked to the surgeon who did operation for my Mum and he said it could be some kind of infection that could make CA 199 higher. From my thoughts, this is quite strange because if there is any infection the body could react in some way (fever, WBC…). Do you have any ideas about this?
Anyway, at least I have 1 reason to believe that it is not the recurrence.
Minh
Dear Marions,
Thank you so much for your share. I have just talked to the Dr and he said he had no idea on the reason why this is increased, because other things are ok
So he requested another blood test in 1 month. He also said that whatever the place of recurrence is, this index could be increased. And he is thinking that the cancer cell is still there, which would be the reason for the increment.Anyway, we will have another test and will keep you updated.
Best wishes for you all!
Minh
Hi all,
We have had a meeting with the oncologist and he said “please forget the statistic on this kind of cancer, I can tell you all statistics of other cancers such as breast, stocmach, lung…. but this CC, I CAN’T, since it is too rare to make a proper statistic”. He also recommend us a Chemo, normally patients start chemo 6 weeks after the surgery, however for my Mum, since she had a lot of complications so she need a longer waiting period (8 months), it means we may have Chemo by the end of September.
Hope everything is fine. Thank you so much for your advices. As the oncologist said, we believe that “this is the time to FINISH CANCER!!! Why dont we do it???”
Be cheerful and take care, my dear friends…!!
Hai Minh
These are really useful information and reccomendations, thank you all for your great supports. Ofcourse, everyone will choose to have chemo as a piece of mind, even the doctors.
We have asked the doctors to have chemo but they said we need to balance the good and bad sides of this, chemo may destroy you before the cancer recurrence. He also said “if I could not achieve the clear margin (during the surgery, he had a further cut and he saw no cancer cells under the microscopic in 2mm margin to the liver) and the lymph nodes were positive, for sure I will suggest you to have chemo and radiotherapy”.
Is chemo really something awesome?? if she cannot stand it, can we stop the chemo at any time?
Anyway, I catched your ideas from your messages, and I will follow it. We will see the oncologist tomorrow to mention this again, at least this is the best thing that we can do for her now, and hope that everything would be fine.
One more problem is she has been 6 weeks since the surgery already, and she only can have poridge for 2 weeks more due to the bowel obstruction. All blood test is good. Can she have cheme now? If we have to wait longer, is it too late for her to have chemo. Kris, how long had you been late for the chemo after the surgery?
Hi Kristin and Kris, ofcourse we dont just rely on the statistic, because even they say under statistic the survival rate is 99%, it doesnt mean that we will not fall into the rest 1%. But we should believe in God
, everything shall be fine!!What I want to know is how about the result of your surgeries: Did they completely remove the tumor? Did they test the lymph nodes? Was the margin clear? and if possible, how about the blood test before and after your surgeries??
I understand that it is not proven that chemo is useful for this kind of cancer, however I still want a chemo after the surgery, so in case of recurence, we will not have any regret. But the doctors, they still recommend us that we should not have a chemo at this time, because of the success of the surgery. That’s why i need to have your advice and the result of your surgeries.
Kristin, im very happy to hear that you are doing well and no side effect from the chemo, and it was wonderful that the chemo has been useful to stablise the tumor. Best luck to your next time!!!
Hi, yes, i think it is Klatskin because it appears at the confluence of the right and left bile ducts, and it has already invaded all the right bile duct. You also have Klatskin tumor? So what about your surgery, and did you have any further treatment afterward?
Hi Jeff, sorry to disturb you again… the information was found out, just right after I posted the above message
). this is very very useful, and your story, your fight… I dont know how to say… it’s the greatest things that I have ever read. Best wishes for you and all of us.Hai Minh
Hi Jeff, thank u so much for your response. My Mum has been getting on well since yesterday, she started drinking and eating, hope that everything would be fine.
To be honest, Ihave been searching for your information but it is very difficult for me to scan through all of your posts, so if possible, could you please summarise your progress from diagnos untill now (just shortly brief on the timing and diagnos & kind of treatment, it’s ok actually).
My proposal is, whether everyone can post and update his/her progress of diagnos and treatment on this forum, at the profile page (so they can update regularly and no one can add more thread on it) ?? If we can do so, it is very easy for anybody to get experience and information from there.
Thank you all so much.
Hai MinhHi Jeff,
How can I get the information of your medical record, so I can get experience from there? Or, could you pls brief something about your case from diagnos till now?
My Mum got a bowel obstruction after the resection, and had to stay 6 weeks in the hospital so far. Hope that I can get valuable information from you. Thank you so much for your kind response and help.
Hai Minh
Irene, best luck to you, wish you would have a succesful operation. There are few things I need to share with you as my Mum also had a resection on 23 Jul.
After operaton, she was quite well. After 1 week, nausea and vomiting a lot + bleeding inside. The bleeding stoped after 1 week. However, yesterday CT scan and X-ray showed a partial obstruction at the duodenum (Dr said this is quite common with patients after pancreas operation, however not in this kind of operation). We have to feed her through a tube directly to the intestine to make it work better.
Ofcourse, this is due to each patient’s conditions. However, it maybe due to the capability of the surgeon (who knows??).And, after 1-2 days from the surgery, following the Dr’s opinion, you have to try your best to sit up and try to walk around a bit, it’s better for your digestion system.
Lisa, what do you mean “an unsuccesful surgery”?? It means they could not remove all the tumor during the surgery/ or they did do it very well however the tumor came back afterward???
Hi Sara,
Thank you so much for your response. Understand that liver transplant may not be applied for extrahepatic metastasis, however, it empharsize that we can apply transplant for patients who are under Bitsmuth Type IV (tumor spreading to both intrahepatic ducts, for which resection cannot help).
Therefore, in case of Bitsmuth type IV, we still have a hope of liver transplant, instead of normal radio/chemo (because resection cannot be applied) as advised in lots of documents?
