Hey 5, 

Further to your original query here, about AFP's, which got us into the link below (showing Japan's use of AFP-L3's), see info in this post as well ... HCC Detection - Using AFP, AFP-L3 and DCP .

:  )  C.

Hey RC,

What a treat! Nice to hear from you, and interesting that your AFP did not spike up too high - i had mistakenly thought you said one time it did jump up (quite a bit higher than that, in the hundreds?), but, i must not be recalling things well - not surprising for me tho LOL, given my mental prowess! Glad to hear you have some good summer plans. Many of us are doing that, getting better, feeling better, one step at a time. Good to know you heard from Boxers. Here's to a good summer for all of us!  : )  C. 

Hi All. Its been a while.  I beleave my AFP only got as high as 24, I had 4 or 5 ablations and 1 tace procedure.  As Tig said my old liver was a tumor factory, as they ablated one a new one would pop up in different segment.They would do a follow up MRI 30 days after a ablation procedure to see if the ablated tumor was gone and see a new tumor someware else. This went on from May of 2016 tell I got the call August 13 2017 for Transplant.As I recall my tumor marker dident really spike, perhaps because the tumors were fairly small at 1 to 3 cm each episode. 

Its been 21 months since L/Transplant and its been a slow long tough at times recovery. With the foot surgery the year prior to transplant and then all the procedures on liver and throw  in 2 HCV R/X prior to L/T and one post L/T and well you all know the story. I got pretty weak on the post L/T treatment but it killed the virus thanks to VOSEVI RIBA cocktail. What a battle with the disease and insurance company to extend R/X out to 16 weeks. Upset stomach and lower GI issues are common now, and full/pressure feeling in gut is common. Numb at and below the  Transplant incision all the time- really weak abb muscles- I wont ever do a sit up again Lol !  All around and overall muscle weakness everywhere.  Recovery is taking some time but it is happening but at a slow rate. I have communicated with BOXERS over the last year and she is moving along ok. She has some issues like all of us L/T survivors.

Im looking forward to a nice summer where i can get out and get stronger!!  RC

i too love to hear the journeys.

Ya, we would like to hear from RC and Boxers too, fer sure, but very happy you caught us up again SS!  I always want to hear more from you : )

Also, I am so glad you put that link there for us, I will get into that soon.

I recall RC shared with me one time that his AFP got pretty impressively increased as well during his tumour time. AFP's are good info to have.

C.

Thanks for sharing your journey, SS. All of the stories we have heard from our transplant group, have been both mind numbing and impressive. I appreciate yours!

It would be nice to hear from RC and Boxers >>>HINT<<<. Last I heard they were doing well. We like “well”...

we get the afp 2x a year over here at my house, both being f3'rs.

Hi Iris, Canuck - I saw everything through a cirrhotic lens - I only know the damage caused by the virus left a cirrhotic liver susceptible to cancer, specifically, HCC, so I asked to test for AFP every time there was a blood draw. I don't know about low fibro livers. But an annual AFP can't hurt.

Tig - my tumor was located at the junction of the portal vein and the vena cava. It could not be removed surgically. It was only 1.6 cm when first found. That was enough to bring my case to the Tumor Board for transplant list consideration, but it needs to be 2.0 or more to count toward the MELD exemption points - 22 points are awarded for a tumor over 2.0 cm. I was listed with my itty-bitty tumor, but my MELD was too low to qualify for an actual liver. My tumor grew quickly, it measured 2.4 two months later. We applied for the points and then I had a TACE procedure to slow the growth rate or even kill the tumor. Six months later I got the points.  I now had MELD 34, and one month after that I got "the call". I only had the one TACE.

BTW, we just saw a most remarkable documentary film called "Burden of Genius". It's the story of Dr Starzl and his development of liver transplants and anti-rejection meds. Not a dry eye in the house. We saw it on a 70 ft by 38 ft screen in HD. If you get a chance ....

So, anybody know how Boxers and RC are doing?

/

I asked my hepatologist to add that to the next test. ..she had done it before. But because she said my fibroo score was low, I didn't need to add that test anymore. I haven't been diagnosed with cirrhosis so she said it was unnecessary. Hope she's right. My last test was very low like a 7.

Bb, Iris

Hey SS,

Nice to see ya!

Ya, I love the AFP test and all the various following testing that should be done.

MY, what a long road you have walked.

How are things? We've been wondering how all our TP folk are doing. : )  C.

Hey SS,

Good to hear from you, Bro! I hope life is treating you right. I don‘t remember talking about that timeline with you before. I remember the transplant discussion, but reading your last, your escalation to the actual transplant was fast! Do you recall the location of the tumor? I remember our moderator, RC, he was ate up with tumors and what they removed or ablated, seemed to grow back faster than light speed. 

When I finally cleared the virus, I checked AFP with every blood test. I was cirrhotic.  18 months after SVR, the AFP jumped from it's normal 6 to 167. Two days later a MRI found a itty-bitty HCC tumor, and 5 weeks after that I was on the transplant list. 9 months later I had a new liver.
I still check AFP every year. Worked for me.

thnx canuck,  that's interesting. i will read that tomorrow. bed early today, go to ent on 5/1/19

hope she can clear my ears , then home to eat filet and cake , 

Mornin' 5,

AFP can be found elevated in newborns, sometimes in expectant Mom's. Elevations can also be found in people with liver damage (like if you have chronic hep or cirrhosis) your AFP might also get/be chronically elevated in those cases. 

Might see high or sudden spikes/elevations (or maybe not) in certain Ca's (liver/testicles/ovaries). AFP elevations might be seen in other Ca's ... stomache, colon, breast, lymphoma, but maybe not. It can be a very useful but not necessarily foolproof telling tool. 

https://labtestsonline.org/tests/alpha-fetoprotein-afp-tumor-marker#no-back    See this link (if it opens) and read the "Common Questions" - ie "How the AFP Test is Used". And beyond "How it is used" there is some good info to read in there if you click on and read all the bits that open up on the subject of AFP there (Japan, etc.).  : ) 

-- Edited by Canuck on Wednesday 1st of May 2019 03:55:13 AM

hi everyone. 

I was wondering if the AFP tumor marker we get every 6 months can find all tumors, or just in the liver?

just wondering