AFP Oscillator or The AFP Terror

[AdrianB1971]

Yes, my AFP is very oscillating. Every one(now two) month(s) I have blood tests and I think I'm going crazy. In my TC experience I had only HCG elevated. HCG=28, AFP=2.3. It was very surprising for me to have lung metastasis with such 'close to normal' markers. Now, there are 8 months after the completition of 3xBEP and 4-5 months ago my AFP begins to be a real oscillator. Shortly, after BEP it was [at checkpoints] : 2.3, 2.4, 3.8, 2.1, 3.1, 5.6, 4.9, 3.9. For 3 weeks I had a supraclavicular lymph node enlarged and very painful. I was very anxios about that but the shoulder skin irritation(infection!?) where a sing that there may be not the cancer the cause. Before the latest blood test I had an ORL exam (ears, neck etc) and the doctor found some infection inside my neck exactly to the enlarged lymph node side. The doctor don't bealive that te node is corelated with the cancer
[supraclavicular adenopathy]. Sounds very very scary for a TC patient, isn't it !?. Now the skin irritation was disaperred and the pain in node too. It seems to shrink as well. Finaly, the blood test results : HCG=0; AFP=3.9. I wonder why my AFP, from 4-5 months, oscillating from 3.9 to 5.6 and back ??? Before this oscillation it was allways between 2 and 2.6 (from February-my first test, to September). I drink 4-5 beers per day not only from 5 months )
And now, let me know about the posibility to have no elevation or AFP at the TC diagnosis and the probability that the AFP elevation can signals recurrence. I dont understant why my onc is watching very carefuly only on HCG [she said : because only the HCG was elevated before chemo]. I don't agree with her and it is a veritable war between us )


Finally, I have read here about the terror of siting 5-7 hours for chemo. I want to tell you that in my case was terrifying !! In my 3-th cycle of bep I was on diazepam to sleep all the time. I felt like I'm going crazy and was the hardest moment in my life. I can't describe you what I felt. I was crying many times, without shame, and even now i have moments when i can't realize that it was happened to me. My greatest fear about the posible recurrence , ironicaly,is not about the cancer itself !!! THE CHEMO is the biggest hightmare. Maybe you will laugh but, in case of recurrence, I DONT WANT CHEMO AGAIN !! AT ANY COST.

[matthias]

This might be a RADICALLY new concept: but how about not asking about the actual numerical values?

Unless you have some hard-core scientific training, the concept of experimental error bars and significant digits might forever elude you. (This is not to imply that MDs are scientists, far from it.) Imagine the quality-of-life you would have gained by NOT knowing the inconsequential variations (2.3, 2.4, 3.8, 2.1, 3.1, 5.6, 4.9, 3.9) over the last five months.

As I said, it's radical...PBUH
/M

[Don]

Adrian,
Not that this is going to explain the ocillation in your afp level but it does have alot to do with the reagents that the lab is using to take the test and the technician taking the test.. if technician 1 adds one exact drop of reagent to your afp test then your test result is 2.5--if technician 2 adds 1.2 drops(or just a slightly larger drop) then your afp will result in 2.9-3.0 and so on and so forth. I had 2 AFP tests in one day --one at a lab and one at the hospital --they read 2 pionts different on the same day.. Another time I had an AFP test at my dr,s office and then had another test 2 days later at the hospital-- the results were 3 .2 pionts different..-- I guess the most important fact in all the testing is that all the results are in normal range and hopefully will continue to do so!!!!!!!! DON

[Jens]

Hi Adrian.

Sorry to hear that you are having a hard time.
Living with - or after - cancer, is a though task, and there is no universal thing that we can tell each other to do.
But we do get the same informations with the same intervals and we do fear the same thing.

Tumor markes need to be higher than yours to cause alarm. But you think that if the climb a little, they may climb some more... Makes sense, but it really needs to more than this...

Perhaps the right thing for you is not to get the test results from your oncologist, unless there is a cause to contact you?
Some TC survivers have an aggrement with their oncologist to go and get their CT scans, lung X-rays (I know you don't trust them) and blood test done, and from then on, "no news is good news".

And - by the way - chemo may be hell for some, for others it's not that that bad. It's important that we don't make it sound like something that one should consider not to have, in case it's needed.
I truly believe that you are fine and well today Adrian, because you had 3 series of BEP.

I hope you find a way to get peace of mind.

Best wishes
Jens

[AdrianB1971]

Thank you guys. I hope you are right, and the lab specific variations could be one of the cause of AFP oscillation. By the way : what is the correlation between pre-treatment elevated markers and an eventualy recurrence marker elevation after treatment. In other words, in my case for example, with only HCG elevated before treat, what is the chance that an eventualy recurrence to be signaled by AFP elevation insteed HCG

[ramfan13]

I know how you feel

My AFP has been elevated since before my IO in 8/05 and has been up and down from 14 to 16 to 12 to 14 and now to 13. My oncologist still does not know why. My liver has been checked out thoroughly and no problem there. My doc said that there is nothing to worry about, but it is nerve wracking knowing that it is up and down and noone knows why. I still cant help but feel it is high for a reason with some dormant cancer, but I guess there is nothing to do. Good luck to you, I know the worries. I have not had chemo at this point so I feel for you there.