Hello - my sister just finished 12 wks with Teleprevir and is <43 not detected. Since she is a 3x previous NR she will go an additional 36 wks with Peg/Rebetol (sp?). She has low WBC even before she started and was DET at 4wks. The plan is to bump her up to 180 mg Peg with neupigen (sp?).
Question - her AFP marker went from 45.0 (4/25/12) to 16.2 (9/28/12). While this appears to be headed in the right direction I have no experience with this except that I know she was headed toward txpl list. I am going to her next appt in mid Oct and want to know what this means and what questions should I ask.
Your sister always has to do 48 weeks of treatment with Telaprevir. All patients with cirrhosis have to do 49 weeks. Especially previous null-responders who have cirrhosis as they are the hardest to successfully treat.
AFP (alpha-fetoprotein) can be raised above abnormal the normal range due to inflammation of the liver caused by hepatitis or cirrhosis.
AFP is more commonly used in combination with an ultrasound to detect liver cancer also. Once your sister developed cirrhosis, she will need to continue to have ultrasounds of the abdomen and AFP blood tests every 6 months for surveillance of liver cancer (HCC) as she is at an increased risk for developing cancer. (At-Risk Population) = Hep C and cirrhosis). For patients have hep C and cirrhosis the incidence of liver cancer is 3-8%/yr and adds another 3-8% every year a person has cirrhosis. All patients on liver transplant waiting lists are screened for liver cancer also. Patients on the transplant waiting list should be screened for HCC because in the USA the development of HCC gives increased priority for liver transplant, and because failure to screen for HCC means that patients may develop HCC that may progress beyond listing criteria without the physician being aware.
Liver cancer has no symptoms usually until it is too late for a life-saving transplant, so surveillance is critical.
Ask the doctor about AFP and what it means. There is not much to it. If cancer is suspected then further testing is done and treatment prescribed.
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The plan is to bump her up to 180 mg Peg with neupigen (sp?).
The Peg has a tendency to cause low white blood cell count which can compromise the body's ability to fight infection. The Neupogen would be an additional medication to stimulate your sister's blood system (bone marrow) to make white blood cells, helping to fight infections.
What do you mean by your sister's AFP marker is "headed in the right direction"?
A transplant list?
Does she have liver cancer? Does she have other indicators of cancer or advanced liver disease?
The only reason I ask because I have seen questions related to high AFP on here before and your sister's lab value for AFP does not seem all that high for someone with HCV.
On the other hand if she started out with a low WBC then it makes one wonder how the other values on her CBC were. You might want to enter more info if you have it. It is difficult to be specific with second hand info.
Either way I happy for your sister that she is finally UND after so many treatment attempts. :)
Thanks copy man - she is seeing a liver spec who graduated from major academic institutions. Teaches fellowships in hepatology as well. I just wanted to go in with specific questions about the condition of her liver. She really can't process the info therefore just says nothing is wrong. I had her sign the HIPAA paperwork, so that I can be her advocate.
Thanks Hector - I will print your post and continue the research. 48 wks with teleprivir during the entire phase? She has cirrhosis so I will her calendar. She is feeling so much better without the teleprivir. If she had to do more than 12 wks she would have quit. I really wish they would have used victrellis. I think the sides are easier to handle. I have an excel wk sheet with her labs and ill post on my space over the week end. If you have a moment to review that would be great.
Thanks Idyllic - the note about the peg was from her last encounter form. I am calling the NP this morning because she should have been increased to 180 with neurogenic at wk 13 which hasn't happened. Wk14 starts Saturday. Will add your questions to my research and list when meeting the doc. This has been second hand. I'll post the labs on my board over the weekend your feedback is appreciated. Again just getting prepared so I am not like a "deer" in the headlights.
I have had cirrhosis for 5 years and now liver cancer. I now have AFP tests monthly. I also have had many ultrasounds, CT scans and MRIs. So I am very familiar with surveillance for liver cancer (HCC). I'm also waiting for a transplant within the next 5 months and have a MELD score of 31.
What specific questions do you have regarding your sister?
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