Can We Change the Subject Please?

[JennyPenny]

As a Stage 4 patient who has failed treatment over and over and over again, I have to have an alpha fetoprotein test every few months. I am wondering what kind of results those of you with cirrhosis are getting? I know that cirrhosis alone can cause elevations but I'd like to know how much of an elefvation you are getting. for anyone else who wonders, my lab has a normal range up to 6 and I am usually between 9 & 12. I think once I got to 15. I hate this test and worry about it whenever I have to get it.

[newleaf09]

Thanks very much for sharing your doctor's remarks.  I've pretty well made it to SVR and hearing that may make me tone down the rest of the worrying that I am still stuck in.

[eureka254]

My husband has the AFP test and imaging every 3 months, but he's the exception to the rule, having survived HCC and partial liver removal.  Since his surgery (at the time he was diagnosed, his AFP was >2,000 back in 2007), his AFP has fluctuated, jumping around from a low of 8 to a high of 25 last month.  My husband's hep docs tell us that anything up to 50 is considered "within fluctations for many cirrhotics."  At least we're being told when a cirrhotic AFP stays in the teens and 20s, it's a good thing.  ~eureka

[feather857]

your recipe has me LOL!   Thanks for the morning laugh to go with my coffee.  It's little things like this that help so much in our forums.  Laughter truly is the BEST medicine!  I'm a non responder after tx but hope to start another tx in Dec.?  Just want to thank all here because you do make things a little better for me.  I appreciate the help, the info, comparisons, Dr. talk, recipes, laughter & some sadness as well.  It helps to have a place to turn to.  Thank you all.

[GrandOak]

Unless I'm mistaken, I believe that the AFP is used as a marker for any cancer, not simply HCC.

As a Stage 4 when diagnosed 5 years ago, I get mine checked every months as I see my doctor and nurse practioner on alternating intervals.  Also, CT Scan and Endo are done annually with a Bone Density bi-annually.

Also have a MELD score computed annually, which anyone with Cirrhosis should be doing to get on wait list early.

[becksta29]

cool i always loved brussel sprouts,brocilli,cabbage,colliflower etc thanks for that info

[GoofyDad]

My recipe:

- Toast a cedar stick in the oven at 300 degrees for one hour
- Prepare brussel sprouts by boiling in salted water until tender
- Drain and tranfer to casserole dish
- Open windows to vent
- Take dish over to neighbor's house, place on doorstep, rap on door with cedar stick, and run like h3ll. Best for everybody if neighbor is on vacation.  
- If possible, go out to dinner. Otherwise return home and eat the stick.
- Close windows in the morning.    

[Bill1954]

OH—

AFP is an acronym for alpha-feto protein; in the context of HCV, it’s used as a marker for primary liver cancer, or HCC. We’re usually tested for it once every six months or so if > stage 3. It’s usually combined with come type of imaging too; I’m almost sure if you look at previous lab results, you’d find it in there somewhere.

I’ll try brussel sprouts with caraway and chicken stock… I’ve always just steamed them with butter and pepper. Sounds good!

Bill

[orphanedhawk]

Now I feel incredibly stupid. You'd think after all I've gone through I wouldn't be asking this but what is an AFP test?

As for brussel sprouts, here's my favorite recipe:
cook them in chicken stock, drain and sprinkle with caraway seeds.
yum

[GoofyDad]

"There is another reason to embrace cruciferous vegetables...."
That would explain what happened whenever I gave Aunt Agnes a hug. I probably shoudn't have squeezed so hard....  

"Flatus" - Great word. Somehow I think it will come in handy. Thanks.

[JennyPenny]

Go take your beano and behave yourself. :-)

[FlGuy]

There is another reason to embrace cruciferous vegetables...."Brussels sprouts and other cruciferous vegetables that belong to the genus Brassica are commonly reputed to not only increase flatulence, but to increase the pungency of the flatus"

And, you thought it was just beans...

[newleaf09]

The crucifers are that group that includes cabbage, broccolli, cauliflower and brussel sprouts; strong tasting; kids tend to hate them, adults like them.

AFP is not automatically tested for everyone.  It's part of the initial screening workup that precedes treatment to look for liver cancer.  Stage 3 and 4's have the possibility of developing HCC (liver cancer).

Jenny, mine was 17.5 (high normal range was10.9) at diagnosis, down to 12.7 seven weeks later when I was screened a second time with a different doctor.  Have not  had it tested since the screening but will be starting it again as soon as I am released from the study and back to my regular GI.  I hate it too.

[becksta29]

cruciferous veggies,what does that mean?is it only leafy veges or non root veges?sorry to hear u failed tx over and over,hopefully with new drugs comin out u can beat it then,gd luck i hav never had a biopsy etc so i hav no idea what shape my liver in,i can only go on blood tests,my blood tests have always been ok,just a lil above average.gd to know what veges r gd 4 liver damage etc i will eat cabbage brussels sprouts etc more if i know they extra special compared to other veges.

[GoofyDad]

I love cruciferous veggies…


I can't even spell it. That stuff makes your pee stink - not quite like asparagus - but still....

Chocolate milkshakes on the other hand never make my pee stink. I figure my body knows what's best.... right?

[GoofyDad]

My AFP is consistently low - last was 1.7 on a 0-15 scale. I get U/S and AFP every six months. I call them when it's time. It's the U/S that always gets me a little agitated when opening the results.  

[JennyPenny]

Thanks for your reply Justme. Interferon does lower the AFP. I'm guessing it is the anti-inflammatory properties of inf. Are you done with treatment? Good luck with the gall bladder stuff. I understand gall bladder issues can be very painful.

[justme53]

My AFP has usually been staying in the teens, but last fall prior to tx it was 65 and I had to have an MRI. Six months later and well into tx, it was back into the teens. I know they were happy to see those numbers and so was I! I had an abdominal ultrasound last week for a gall bladder issue and asked if they were going to run another AFP even though it was a couple months early and they said, "no."  That's fine by me....one test alone is hard enough to sit out when cancer is involved.

[JennyPenny]

HI Bill. Those results do look great. I've been above the cutoff range since the old intron Riba trials when I was a 10 and they made a fuss but let me in to the trial. My doc does the imaging also every 6-12 months but he didn't mention it this time and I didn't remind him. Bad on me, I know.

[Bill1954]

Hi Susie,

I guess my doc relies less on AFP and more on U/S scans? I was stage 3-4 fibrosis with hepatosplenomegaly; my doc told me I was probably transitional to cirrhosis. I get a U/S scan on a 6 month cycle, supposedly with AFP; but it looks by my records we’re not getting it regularly. The results I do have are all <5, so I suppose things are good. The lab I am using lists a reference range of 0-15; they utilize the ‘Roche Modular E170 AFP method’.

Mmm… I love cruciferous veggies… I’m a cabbage/brussel sprout head :o).

Bill

[JennyPenny]

Hi Ev. They do test through treatment. The veggie thing is a good tip even if it doesn't help with cancer. It is good for ya. He iddn't clear did he? I'm sorry about that. It is hard to clear once you're cirrhotic.

[evangelin]

I couldn't find that this test was done the whole 15 months Joe was on Tx.  I guess they don't check this when treating?  I found a lab from 2007 that tested him at 7.6 and I think I recall him having one that was a bit higher than that. There may have been one done after that but iI didn't see one.  I imagine they will start checking this again now.  I will let you know in late November if he has one done.  Joe was diagnosed with cirrhosis in early 2004and was by this time very symptomatic and platelets were in the high 80's /low 90's so he has been cirrhotic for quite a while now.  
I know very little about the AFP test.  
A Dr. told us once to try to feed Joe a cruciferous vegetable every day to guard from cancer.  We haven't been doing very well with that because he was too nauseous for most vegetables while treating.  I am trying to help him get his vegie appetite back again.
Best wishes,
Ev