thank you for all the information a lot to digest see you did the ciberknife every other day. mine was done daily for 5 days was also to be every other day either way seems to have worked for both of us.you have a good idea with the AFP-L3 wonder if the results might help to get prior aproval for the harvoni may be able to argue both sides hcv virus is causing the cancer or inflamation to increase the afp.will fax my oncologist to see if he will do the afp-L3.all ready have an apointent in 2 weeks with the gastro to see if i can get him go for the prior auth on the harvoni i think the aasld prefers this as treatment of choice for patients who failed prior protease inhibitor treatments. h
Hi.
Your increase in AFP level could very well be caused from inflammation of the liver caused by your hepatitis C flaring up. Your doctors can do an AFP-L3 blood test to differentiate between malignancy and inflammation. It would help to clarify what is going on and give you peace of mind.
If your AFP level is rising due to your hep C infection perhaps that could prompt your doctors into treating your hep C. Treating your hep C would stop the inflammation and lower your AFP level as the replication of the virus and injury to the liver is stopped, which would make it easier from the doctors to perform HCC surveillance by eliminating "the hep C factor" and you would be cured! A double benefit.
"AFP-L3 levels ≥10% are associated with a 7-fold increased risk of developing HCC within the next 21 months and can be elevated 3 to 21 months before HCC is detected by standard imaging techniques. The diagnostic sensitivity and specificity ranges from 36% to 66% and 77% to 95%, respectively. Because AFP-L3 is produced by malignant hepatocytes, its measurement helps distinguish non-malignant hepatic disease from HCC."
Here is my history with HCC and AFP:
I had a rise in AFP into the hundreds over a period of months before my 3rd and last HCC tumor was finally found on MRI. After doing the AFP-L3 blood test results they knew mine was from HCC but they could find it. They did a PET scan thinking it might have metastasized elsewhere in my body after not being found on multiple abdominal MRIs and chest scan CTs. Luckily nothing was found on the PET scan either. So when it finally showed up in segment 4a of my liver we weren't surprised.
After my first 2 tumors were treated successfully with 2 separate TACE treatments.
My AFP started to rise at the end of 2012 and early 2013. I was taken off transplant waiting list after AFP rose about 500
AFP Levels
9/18/2012 111.7
12/3/2012 291.2
2/24/2013 3rd tumor finally seen on MRI
3/7/2013 669.6 TACE treatment date
4/9/2013 1068.8 (no treatment response)
4/22/13 1,348
5/3/13 1,473
5/29/13 1,892
7/16/13 564 - (after ethanol injection PEI)
7/23/13 589
7/29/13 578.4
8/26/13 810.1
9/18/13 1240.4
10/14/13 562.8 (2 weeks AFTER 3rs PEI)
10/18/13 First CyberKnife radiation treatment
10/21/13 641.4 (rising again)
10/28/13 565.9 (after 4 of 5 Cyber treatments. It’s starting to come down!)
11/5/13 377!!!!
Under < 500 put back on the transplant waiting-list!!!
11/16/13 LIVER TRANSPLANT – 11 days after being back on the waiting-list.
Hope this helps.
Hector
just wondering when it was in your treatment that you got the increase in the afp with no tumors seen on scans. usually get afp done monthly has been on the rise most times though 3-4 ties in the last year it was down from the month before. i am now up to 447 the mri from last week shows nothing. the radiologist called says he even looked for sings of imt nothing. my best guess is the hep c or maybe the nexavar. what came of your situation if i may ask
I agree with your idea of getting input on your current medical situation from both a hepatologist who is familiar with your liver disease, hep C infection and the latest hep C treatments plus input from a HCC expert. Someone who is intimately experienced with all of the particularities of HCC and AFP. .
Like a transplant center's multidisciplinary liver tumor board they should each give their expert opinion on your case and then develop a consensuses about how to move forward. They should then discuss their assessment with you. You should then make it clear to them what your priorities are and how working together you and they can achieve them .
Since you are seeing a rise in AFP, although no tumors are now visible, I would suggest a discussion about about the need for closer surveillance of your HCC. More frequent testing of your AFP level, more frequent MRIs and perhaps a AFP-L3 blood test to better determine what is going on with your AFP. At some point a PET scan may be an option.
I had all of this done when I had a similar situation of a rising AFP without any tumor(s) being seen on multiple MRIs and CTs.
Let me know if I can help in any way as I have some similar experiences with HCC and AFP and might be able to share my experiences with you.
Best!
Hector
1st let me say that you have been through a lot am glad that you received your transplant and are doing well .you are correct had the resection 3 months later 3 small spots showed due to location it took 2 treatments of tace 1 month apart however my afp continued to rise they then found a lymph node on the liver that had cancer afp went to 2500 due to the location of the lymph node both um and cleveland clinic said they could do nothing . talked to radiation md at st marys said he could get it 5 1 hour treatments it was gone afp levels went to 35 now 2 1/2 years later the afp is going up but the liver seems clear. the md that did the resection said my liver fibrosis level is about a 2 . i treated 8 years ago with telapirvir ribo weight dose interferion . the 2 new drugs harvoni and viekira seem like good bets but my cancer md and gi md act like i am asking for to much. need some expert opinions or a hepatoligist in the detroit mi or cleveland oh to go to thanks for the reply and the best of luck to you in your fight i can see you are also not 1 to give up or guit my prayers go with you
do you know the name of their doctors thank you for your reply i would think that the situation would be common yet nothing out there i am finding
Hi. Your medical history of HCC is a rather unique one. Especially the various types of treatments you had. I am not sure I understand the sequence of treatments. Did you have a resection first and then the TACE treatments. You had a number of different tumors I assume? How did you come to have CyberKnife treatment. I am one of the few people with HCC at my transplant center to have had CyberKnife treatment at our cancer center for my HCC but it was only “experimental” as I had failed multiple TACE treatments and Percutaneous Ethanol Injections (PEI) treatments and considered terminal and removed from the transplant waiting list because my cancer had advanced beyond transplant criteria.
Do you have cirrhosis now? How advanced is it.
I agree that you should treat your hep C as soon as you can. Cure rates in cirrhotics are in the 94%+ these days for those with genotype 1 and side effects are minimal. Cirrhosis is no longer a barrier to treatment success as with past treatments and side effects are typically minimal.
The reason to treat your hep C now, besides stopping the progression of your liver disease, is that once a person achieves SVR the risk of the future development of HCC is greatly reduced. From 3-4% per year to 1% per year in those with cirrhosis. Still risk is still higher than someone who has never had cirrhosis but clearly substantially reduced. Of course periodic HCC surveillance with imaging and AFP should be continued after SVR.
This is also a belief in the Hepatology community that inflammation (caused by active hep C infection) contributes to an increased risk of the development of HCC.
Since my advanced HCC was treated with CyberKnife radiation successfully I was able to get a transplant 18 months ago after being able to be put back on the waiting list after seeing the results of the CyberKnife treatment. Because of my history of having HCC for 2 ½ years before my transplant I am now at a very high risk of HCC recurrence. So I take an mTor inhibitor anti-cancer immunosuppressant (everolimus) as a preventative measure. Being immunosuppressed makes all people who have had transplants at a higher risk of developing cancers so anything that may counter balance that is a good thing.
As a proactive measure my hepatologist and myself decided to treat my hep C ASAP after my in order to stop the inflammation caused by the virus and hopefully/theoretically help to reduce my already high risk of the HCC recurring. I treated for 12 weeks with Sovaldi, Olysio and Ribavirin and was cured. Harvoni treatment is even better than the treatment I did as far as effectiveness and side effects so I would highly encourage you to seek treatment as soon as possible.
Depending on your genotype, history of previous HCV treatment and current liver status have a very high probably of being cured (95% or higher) 6 months after you start the treatment. A history of HCC has no negative impact on the ability to treat.
I would talk to the folks at your transplant center that did all of your HCC treatments and get connected up with their Hep C treatment doctors.
There is no reason no to start treatment as soon as you can.
By the way how high was your AFP numbers?
Mine was 1920 when I did the CyberKnife treatment. It got my AFP down to 377, under the 500 maximum limit to be eligible for a transplant at my transplant center.
Let me know how I can help.
Best to you.
Hector
I know two people who have treated successfully while undergoing treatment for HCC. I do not know if Nexavar is contraindicated with Havoni and Viekira Pak. Neither of the two people I know we're on Nexavar. I hope all goes well for you.