Adjuvant chemo/radiation

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

Dear Dale, Minh and others:

I would like to know your experience with post-surgery liver enzyme levels. My mom’s ALP and GGT levels were high (~500 and 1500 respectively) when tested 1 month after surgery. Her bilirubin level was within normal range. Her CA 19.9 dropped from 900 (pre-surgery) to ~40 after surgery. The other enzymes (AST and ALT) were normal or closed to normal. Did you notice that all these enzymes became normal again after surgery? If so, when? Also, I am planning to take my mom for a trip. When do you think is a good time? Should this trip be planned around her CT scans? Right now, we are not exactly sure when she will have her first post-surgery scan. We have asked the doctor, but he gave a different answer each time, ranging from 1 to 3 months post-surgery. Another question that I have is when should my mom take her anti-cancer supplements (coriolus versicolor and immunocal). I presume when the liver function is back to normal (after 6-8 weeks?). Her surgeon never really gave us a clear answer. Do you all have any suggestions?

Thanks,
Maggie

Minh & Maggie

Hi Minh,

Thanks for your advice. I am not sure about your mom, but I think an added advantage in giving up adjuvant therapy right now for my mom is that she can feel happy now. If I tell her the odds, she may be very unhappy. She is the nervous type and she was so scared before her surgery and was on anti-anxiety drugs after her diagnosis. Before we knew that she could be treated by surgery, the outlook was very very grey. We all felt that we should prepare for her passing. Now I am having my tears, after so long…I was pretending to be strong especially in front of her and indeed it is very hard on myself. The thought of her becoming sick again, maybe in a few months just kills me. The burden of making this decision on adjuvant therapy is very heavy. Luckily, I have a sister who is sharing this burden. How did your mother handle this decision when she finished her surgery? Eventhough my mother had a smooth recovery in general, she suffered for the first few days. She was basically not herself possibly due to the morphine that she was on. She also almost had a heart attack as complication but somehow that problem corrected itself (may be due to the constant praying that I did for her during that time). She just mentioned to me today in tears that those 3 days were like in hell, fighting with the devils. She also mentioned that she would rather die if she had to endure another surgery like that. So I just hope that she is in the other 50% population that the cancer never comes back, but unfortunately adjuvant therapy does not garantee that. Such as life! Despite all the headaches in making such decision, there is some wisdom that came out and I would like to share with you all. I read somewhere in this forum that some Chinese doctor mentioned about the disadvantage of adjuvant therapy in weakening the immune system. Perhaps if Kris had adjuvant therapy, her cancer may still come back but her immune system may have been compromised. So her response to the treatment right now may not be as good. So Kris, think on the bright side. Another good point raised by my mom’s surgeon is that if she received treatment right now, she might get so sick and if in case the cancer comes back in the future (as adjuvant therapy does not garantee that), she would be too scared or too weak to get treatment.

Best wishes,
Maggie

Hi 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,
Minh

Minh, thank you for the comments! Yes I am thankful for my surviving 6+ years.

I’m not sure about my CA199 (or CA19?) numbers ever increasing. Or if they were ever an issue. At the time of my diagnosis, I remember my liver enzyme counts were all high (ALT, AST, ASP). After surgery and chemo/radiation, those began to drop, and have been in the “normal” range for years now. At times they would check my CA199 number, but not always. I’m guessing it wasn’t an issue (for me) and thus haven’t had the need to check for it all the time.

That’s great news about your mom’s successful surgery. I hope her CA199 numbers begin to drop.

Best to you – Dale

Maggie….there has to be specialists treating this cancer in Hong Kong. Research in your country is extensive and up to date.
Best wishes,
Marion