haiminh
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Hi all,
Thank you all so much for your shares and advice. I saw the Dr this afternoon and we talked about the result. Her blood count was too low (consequence of having 2 times of Chemo), but more sadly it is actually a recurrence. But not in the uterus. The main recurrence is at the operation area.
So…dont know what to do, but 4 year fighting is not a long period, long enough, so we still have to do the best we can. Now she is having infusion of albumin, WBC and RBC to make her better. Then we will think about chemo again.
Tomorrow we will have the CT scan to see if we can do a surgery. But I am not sure if she can make it as she is having too much pain.
Will keep you updated about tomorrow result.
Best wishes
MinhSorry i forgot your back pain, Dianne. My Mum also had back pain after the surgery, however it is due to the nerves and also the scar from the operation. Hope it helps.
Minh
Hi Diane,
My Mum after having surgery also went to see an oncologist and had adjuvant chemo. Of course, no one can confirm that if we had chemo, the tumor would have never gone back. We just do our best. Normally, a surgeon seems not to have many things to work on the patient after surgery, so you may move to the oncologist to make sure that he could find out something out of the liver or bile duct area at which the surgeon is really familiar with. Mum had CA 199 elevated since last 6 months and is going to have chemo again next week. So far, we have not seen the actual reason yet. the Dr said it could be recurrence. Anyway, we will still have hope.
Best wishes for you.
MinhMy friends, Mum’s CA19-9 was 270 yesterday, other things are still ok. We saw the Dr and he confirmed that it was recurrence (95% of the possibility). He emphasized the sooner we have chemo, the higher our chance of pro-longing her life is. We came to see another Dr and he also said that. So, it finally came back and we now have to fight again.
The proposed schedule for chemo is: Oxaliplatin + 5FU + Gemzar (totally like the adjuvant chemo she got last 2 years) Day 1 & Day 7. So we have to go to Singapore on Monday, having chemo then go back to Vietnam. Then go back to Singapore on Friday to have chemo on Saturday, then go back to Vietnam. 2 weeks later, the cycle is repeated.
Just to share with you the situation. I will update her condition for your infor.
Best wishes,
MinhHi all,
My Mum is quite different. When she was diagnosed, CA199 was increased. After resection, she was clean and CA199 came back to normal (very low). Six months ago, it started to increase and now it is around 200. However, last month PET scan and all remaining blood works showed everything normal (it still seems to be clean so far). The Dr said there could be some cancer cells somewhere and is offering chemo for her. I am quite confused as only CA199 cannot say anything. But to be prudent, maybe I will choose chemo for her. We will see the Dr tomorrow.
Hi Damamma,
How is your sister’s status now? Did she get any treatment, surgery, chemo…? Did the cancer markers increase during normal situation or while she stills got tumor inside?
Minh
Hi all, I have just been informed by our oncologist that the PET scan shows everything normal. For the assumption of infection or cholangitis, he said: if it is the case it must be shown in the PET. So what he concerns is that there are some cancer cells somewhere inside, not “concentrated” enough to be shown in the PET.
I also talked to our Surgeon and he said he would prefer an MRI or CT with contrast, to see things clearer because sometimes PET does not show clearly with this type of cancer and that area.
The oncologist said Mum might have chemo next week to prevent things from being more serious although at the moment he is not sure what is exactly inside her. I am quite confused and upset. This is quite similar to the time I decided for her to get adjuvant chemo. But i think this time, I will not. Because she is still fine, and only CA19-9 cannot prove anything.
Maybe, we will have an MRI next week to further investigate the issue inside.
Thank you all for your shares and wishes.
MinhJust to give you some update: Last month, Mum had a blood test and CA19-9 was 117, and this morning it was 188. Still an increasing trend. Immediately the Dr asked her to have a PET scan now. Tomorrow I will have the result and let you know then.
Minh
Hi,
Talking about complications, I hope no one has to suffer what my Mum did. After having the resection, she was very fine. However after 3 days, she had a serious bleeding inside. We did various CT scans and angiogram, X-ray to check and then it was ok (she got some injections for stopping bleeding).
Then, she also got a bowel obstruction which prevent her from eating and drinking. She had to stay at the hospital for 2 months with infusion for feeding, directly to the vein. She had a tube fixed to her nose to suck the stomach juice out 8 times a day.
During that 2 months, a lot of infections which came from the tube or the infusion line occurred. And finally, when we were about to think about a re-surgery, it was through.
Anyway, it was still a succesfull surgery and she is still ok now, no recurrence so far. Of course, we had a follow-up adjuvant chemo for 6 months.
Trust this is helpful and hope all the best for you.
Minh
My friends,
I got the result and again, CA199 still increased. now it is 117. Other things are normal. I really dont understand what is going on but I will ask the Dr tomorrow. I think he would not be sure about anything until the next PET scan.
Minh
Hi Maggie,
GGT should not be put under consideration as its impact is very very small, so you can forget it. Other liver enzymes (AST ALT) will be back to normal when the liver completely grows. Once everything goes back to normal (she is fine), the blood tests including CA 199 will be normal also. My Mum had a lot of complications after surgery (bleeding inside, bowel obstruction, etc…) so we had to stay at the hospital for 2 months.
Best wishes,
MinhHi all,
Yeah.. thank you all for your wishes. I am now waiting for the blood test result that Mum took this morning. Perhaps it could be available this afternoon. Last time the CA19.9 was 102, I am wondering how increased it is this afternoon…
Best wishes,
MinhHi Dale,
Thank you for your reply. I do agree that only CA19.9 cannot say anything but a supporting factor to our treatment. In fact, all other blood tests of her is ok. And it is quite strange that the Dr let her have this test every 2 months (a lot of tumor marker CA19.9, CA125, CEA, et…). I will take her to the hospital tomorrow for another blood test and will keep you update then.
Hi Maggie,
We had treatment and now check-up in Singapore (we are living in Vietnam). I had realised that cancer treatment is terribly expensive here, especially for those patients having chemo and whenever they stop chemo, the tumor seems to grow. So they cant stop. Normally, consultation fee is around USD60 – 80, and we can ask anything related to our situation, I believe this should be the same at any Asia country (of course, the fee could be out of range but not too much).
For adjuvant chemo/radiation, we may summarise below the opinions of the doctors:
– Surgeons: They would prefer not to have chemo if the surgery was successful. Because they are confident about their operation. AND, most importantly, they dont want the patients to be suffered from unneccesary actions (from what they think). In my case, the surgeon also did not agree with the adjuvant chemo.– Oncologists normally do not require adjuvant chemo/radiation for cholangiocarcinoma because this type of cancer is quite rare, and they do not have a clear evidence that the adjuvant actions can work effectively. However, they sometimes, depending on the situation and the result of the surgery, advise us to do this to make our minds free. And who knows, this could work well on each particular patient.
So it is very difficult to advise a patient to have adjuvant chemo/radiation. But as I said, to have a piece of mind, we should do it, so we will never have to live with regrets. You may see from this forum a number of our friends who did not have adjuvant chemo, and now they wish they could have turned back the time to get it.
I am the one who followed Kris devoncat’s situation and I am very sorry for her case. She was something like my “target” to encourage my Mum. When my mum had surgery in July 2008, Kris already had nearly more than a year cancer free. But she always wished she had had chemo. That’s why I decided to have chemo at that time. Kris, hope you are as strong as you have been, I really admire your fighting spirit.
Maggie, if you are so worry about your mom’s health condition, you might have chemo in form of pills. I think it would be “lighter” than real chemo infusion.
This is my experience and knowledge about this cancer. Hope someone could have a better suggestion for you.
Best wishes,
MinhHi all,
It is quite common that the surgeons do not appreciate chemotherapy or radiation if they have a successful resection. My Mum’s Dr also did try to convince us to avoid an adjuvant chemo as he was afraid that it would affect her health, even worse than doing nothing. However we decided to do it, because it was a 50-50 case. We are never sure that the cancer is going away, so we need to do something to get a piece of mind. And thanks God, she has been fine till now, except the CA 199 increasing in 3 recent months.
Hi Dale,
From your posts, you are so lucky that it has been 6 years till now. Wish you always healthy and happy
. I have a question: During this 6 years, has your CA 199 ever increased?Minh
Hi Rowena, I could not find your email here
. So pls email me at minh.vroyal@gmail.com instead. Thank you alot for your help.Minh
