Tumor Markers

[mstlyn]

We have never had to wait more than 4 days for Anthonys AFP results, but this time around on day 6 we still had no results at the onc. office.

I asked them to call the lab and see whats up.

I got a call back from the nurse and she said she spoke with a girl in the lab and this is what she said:

"The AFP is 11.9 but the tumor marker part is not complete"

Does anyone have any idea what that means, and does it change the reading once it's complete?

Since Anthony changed oncologists its really diffucult getting anyone to call us with results and I have to constantly call them, usually getting an answering machine and no call back.
We feel like we are treated more like a number in line than human beings that are going through something scary. The oncologist is ok, but the nurses and other staff are not very personable at all.

We're looking at another change because it's too stressful dealing with them, but its also hard making changes like that in the middle of everything.

Waiting on results for a chest scan he had yesterday. God only knows how long it will take for them to give them to us.

I'm just typing my thoughts, but would like to hear from anyone that understands what they said at the lab??

[Savin16]

Sorry I can't help with the readings for Anthony, but I just want to say your a great mom. I'm sure it must be so frustrating with the waiting, lack of professionalism, compasion, ect. And if you don't feel like your getting the best treatment, I would switch again, I don't care if you have to switch 10 times. Do what you have to until your comfortable, I know some may disagree, that yes they're doing proper care, treatment, ect, but this is YOUR son, you get all Anthony's records, so your always prepared. Getting angry or fighting with them won't change things, just make the switch if need be. One of my children have a peanut allergy, where he stopped breathing one time, (I know doesn't compare to TC) but I wasn't getting results with the Dr.'s around here, I ended up changing 4 times. Nothing but the best for our children will do. So keep up the good work.

[sldl1106]

Tammy -

Maybe the HcG or LDH wasn't back yet? This must be frustrating and probably has you a bit scared. Being kept in the dark is so agitating. I have to say I disagree with Krista (sorry Krista!) but I would call up and at this point, freak out. Say that this is unacceptable and you have never been treated like this before, (I'm sure you know what to say, I could go on a rant myself just because I'm frustrated for you) etc. You want results, and if no results, reasons why you have no results. I say this because whenever people treated me coldly or rudely during this ordeal with Rob, my voice just got low and mean, or I started involuntarily crying! Then I stopped caring if people thought I was crazy.

Answering machine at an oncologists office? Is this during regular hours?

Post ASAP when you get an answer.

[Karen]

Hi Tammy,
Just catching up on posts. Don't know what the lab's statement means, but I believe they owe you more info than that. I would get on the phone during office hours, ask them what the markers are and if they are not complete yet, why not. Take the name of the person you are speaking with as well...and speak to the oncologist about the results. Is this the same lab where Anthony has had previous AFPs done? Don't let up until you get your answers, and being persistant, firm and assertive, while keeping your cool can be done.

[sldl1106]

Tammy -

Just want you to know I've been thinking about you all day. Here's hoping you get results and answers tomorrow.

[mstlyn]

Thanks everyone for responding- I already had the HCG and LDH, so no that is not what they were referring to when they said the tumor marker part is not complete.
I called the lab and asked what it meant and all that she said is that there are 3 parts to the AFP test. She said that the final results should be at Anthonys onc. so I called them again (this was friday early afternoon) and was told that the nurses had already left for the day. The receptionist rang the nurses phone for me and again I was greeted by an answering machine.

I left a message that I had spoken with someone at the lab and asked that someone call me back with the completed results. So far nothing.

I'll be calling them again shortly, but I discussed this with Anthony and he agreed that changing to a different doctor is in order, so we are looking into that. We will probably wait to see what his next set of markers reveal, and were waiting for the results of his chest scan too.

Soon as we know anything we will post.

Thanks!

Tammy & Anthony

[DAWN82]

Thanks everyone for responding- I already had the HCG and LDH, so no that is not what they were referring to when they said the tumor marker part is not complete.
I called the lab and asked what it meant and all that she said is that there are 3 parts to the AFP test. She said that the final results should be at Anthonys onc. so I called them again (this was friday early afternoon) and was told that the nurses had already left for the day. The receptionist rang the nurses phone for me and again I was greeted by an answering machine.

I left a message that I had spoken with someone at the lab and asked that someone call me back with the completed results. So far nothing.

I'll be calling them again shortly, but I discussed this with Anthony and he agreed that changing to a different doctor is in order, so we are looking into that. We will probably wait to see what his next set of markers reveal, and were waiting for the results of his chest scan too.

Soon as we know anything we will post.

Thanks!

Tammy & Anthony

going to be checking back alot today to see the results... i am praying for good ones! Hang in there Tammy

xxx hugs xxx
Dawn

[mercyriver]

Tammy

I'm even starting to feel frustrated for you!

Hope you hear soon.

Becki

[mstlyn]

Thank you to everyone for being supportive. Im happy to say that Anthonys AFP went back down a little bit. 7.2

Still waiting for the scans

[Margaret]

Thank you to everyone for being supportive. Im happy to say that Anthonys AFP went back down a little bit. 7.2

Still waiting for the scans

7.2 is better for sure. I am happy to hear this. I am sure your doc will figure out why they are not in normal range yet...maybe they will keep dropping. Fingers crossed.

[Fish]

Hi Tammy:

This is from cancerpoints.com, a list of potential factors affecting AFP levels.

Alpha-Fetoprotein (AFP)

Smoking tobacco can increase serum AFP levels. Typically AFP increases by about 10% as the result of smoking tobacco. (See Bartels 1993, Bernstein 1989, Cuckle 1990, Thomsen 1983, Spencer 1993.)
Binge-drinking of alcohol or long-term alcoholism.
Cirrhosis of the liver.
Hepatitis and other forms of liver disease.
Pregnancy can increase AFP levels.
Inflammatory bowel disease.
Ataxia Telangiectasia.
Wiscott-Aldrich syndrome.
Wilson's Disease
Hereditary tyrosinosis.
VAB-6 chemotherapy. (Disambiguate by looking for elevated markers of liver damage, such as GOT, GPT, and LDH.)

Liver damage can lead to an increase in AFP levels. Consumption of the following, especially at high doses, can lead to liver toxicity:

Some dietary supplements, herbal remedies and vitamins can cause liver toxicity, leading to a rise in AFP levels. These include high doses of Vitamin A, Vitamin D, Iron, Amanita species, Asafetida, "Bush" herbal teas, Chaparral, Comfrey, Echinacea, Gentian, Germander, Jin bu huan, Kalms tablets, Mistletoe, Pennyroyal oil, Senna fruit extracts and Valerian.
Certain species of mushrooms.
Recreational drugs.
Acetaminophen (tylenol) consumption.
All nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs in particular are potentially problematic.
Lipid-lowering agents such as statins and nicotinic acid (niacin, Nicolar).
Antidiabetic agents: acarbose (Precose), pioglitazone (Actos), sulfonylureas.
Antibiotics: amoxicillin*clavulanate potassium (Augmentin), erythromycin, isoniazid (INH), nitrofurantoin (Furadantin), tetracycline.
Antifungal agents: fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral).
Retinoids: etretinate (Tegison).
Anticonvulsant agents: phenytoin (Dilantin), valproic acid (Depakene).
Psychotropic agents: bupropion (Wellbutrin), chlorpromazine (Thorazine), tricyclic antidepressants.
Hormones and anabolic steroids: tamoxifen (Nolvadex), testosterone.
Others: halothane (Fluothane), methotrexate (Rheumatrex).
Exposure to pesticides, solvents and paint thinners.

Pursuing a low-fat diet and exercise can help reduce AFP levels, as can drinking plenty of water. Weight gain can cause AFP levels to rise.

As you can see a great many things can affect AFP levels.

But 7.2 is not outrageously high. Mine has varied from less than 1 to over 4.0.

It is good to see the number drop however.

Best wishes.

[Karen]

Wow bro, that's a handy list to have!!!!!! Thanks for posting it.

[sldl1106]

Tammy -

I am so glad to see that the number has dropped!! That's a pretty good drop from 11. I hope it continues to go down.

Getting a new onc. sounds like a good plan.

[mstlyn]

Thanks for the list! One thing that stood out to me was the mushrooms. I wonder what species cause AFP levels to rise.

I make a lot of salads and I put ORGANIC portabellos in them. If anyone ever finds out which species cause AFP to rise, pass the info on! Thanks!

[dannysbrother]

Tammy,

I'm so glad to read this. Very relieved for you and your son.

Sorry for not keeping up with the thread, just know I read when I can and always have you in my positive thoughts.

Lovestrong,
Mikey