Aa
After failed triple tx: monitoring w hepatologist
Hi All,
Background: My husband is 59 years old, and he has probably had Hep C for 38+ years. Diagnosed in 2007, genotype 1a, f1-f2 at that time. Treated in 2007 with SOC, and failed (partial responder). Had regular lab work and appointments between 2007 - 2010. 2010 biopsy showed f4 (cirrhosis). Treated with Consensus Interferon (daily Infergen injections + 1400 mg Riba daily) in 2010, and failed (partial responder). Had regular lab work and appointments, and then tx'd with triple therapy w/Incivek between Sept. 2011 - April 2012. Became UND at week 8, but had viral breakthrough sometime later, and failed (viral breakthrough) Stopped treatment on April 12, 2012.
Current: Since stopping treatment in April, he is on careful monitoring schedule with his hepatologist. Originally in July she said she wanted to do blood work every 3 months and ultrasounds with follow up appointments every 6 months. Last blood work and appt with hepatologist was in July, 2012, liver still compensated. We just recently learned that a second sibling of my husband has been diagnosed with liver cancer. One sibling had liver cancer and liver transplant a few years ago. A second sibling had colon cancer a few years ago and was just diagnosed last week with liver cancer. We called the hepatologist's office to see if that updated family history would change anything in terms of the monitoring schedule for my husband. She has decided to do CT scans every 6 months instead of ultrasounds, presumably to look more closely at the liver, and to screen more closely for liver cancer.
Next blood work, CT scan, and follow up appt with hepatologist is in November, so I will update you all then.
Other than that, still watchfully waiting, and hoping for a phase 3 all oral trial for cirrhotics soon.
Advocate1955
Background: My husband is 59 years old, and he has probably had Hep C for 38+ years. Diagnosed in 2007, genotype 1a, f1-f2 at that time. Treated in 2007 with SOC, and failed (partial responder). Had regular lab work and appointments between 2007 - 2010. 2010 biopsy showed f4 (cirrhosis). Treated with Consensus Interferon (daily Infergen injections + 1400 mg Riba daily) in 2010, and failed (partial responder). Had regular lab work and appointments, and then tx'd with triple therapy w/Incivek between Sept. 2011 - April 2012. Became UND at week 8, but had viral breakthrough sometime later, and failed (viral breakthrough) Stopped treatment on April 12, 2012.
Current: Since stopping treatment in April, he is on careful monitoring schedule with his hepatologist. Originally in July she said she wanted to do blood work every 3 months and ultrasounds with follow up appointments every 6 months. Last blood work and appt with hepatologist was in July, 2012, liver still compensated. We just recently learned that a second sibling of my husband has been diagnosed with liver cancer. One sibling had liver cancer and liver transplant a few years ago. A second sibling had colon cancer a few years ago and was just diagnosed last week with liver cancer. We called the hepatologist's office to see if that updated family history would change anything in terms of the monitoring schedule for my husband. She has decided to do CT scans every 6 months instead of ultrasounds, presumably to look more closely at the liver, and to screen more closely for liver cancer.
Next blood work, CT scan, and follow up appt with hepatologist is in November, so I will update you all then.
Other than that, still watchfully waiting, and hoping for a phase 3 all oral trial for cirrhotics soon.
Advocate1955
Thanks for keeeping the updates coming....I am looking forward to a better, easier treatment in the near future that will help all those who failed with the current PI's. My thoughts are with you and your family!
Thanks so much for the update. Both of you have been through so much and both of you have fought so hard. I you and your husband. I am hoping for the very best to come your way.
Thanks for the update and sorry about your husbands siblings. Tales like this make me wonder if I should reach out to my family (I have five sisters). They are so stoic when it comes to medical illness. Every time I fill out a medical questionnaire I automatically answer "no" to half the questions but in truth I have no idea. I keep telling myself I should be the one to break the ice but. . . . .
Yes, thanks for the update.
I'm so sorry to hear of all the liver problems for your family.
You and your husband have been through a lot. Keep that liver as healthy as possible and I'll be hoping the new orals are available soon.
( And keep drinking that coffee !)
Big hugs,
OH
I'm so sorry to hear of all the liver problems for your family.
You and your husband have been through a lot. Keep that liver as healthy as possible and I'll be hoping the new orals are available soon.
( And keep drinking that coffee !)
Big hugs,
OH
Thanks for this update. I'm sure this news was fairly scary for both of you, but because you've got a really attentive care team you're at a great advantage. I'm very much hoping that an all oral trial opens up really soon for you., and am so relieved that your husband has remained compensated. Hope your husband's sibling is able to treat and possibly transplant.
Your husband couldn't have a better - ahem - advocate than you. - H
Your husband couldn't have a better - ahem - advocate than you. - H
Hi thanks for the update.
I am glad your husband is still compensated. That is a very good thing.
It appears he is unresponsive to interferon treatments which is why he doesn't respond quickly to treatment and then later has breakthrough. So I agree that a non-interferon treatment is his best option. He might want to see if a trial without interferon will be tested at his transplant center for cirrhotics.
The Gilead "GS-7977 and Ribavirin in Patients With Chronic HCV With Cirrhosis and Portal Hypertension With or Without Liver Decompensation"
ClinicalTrials.gov Identifier: NCT01687257
http://www.clinicaltrials.gov/ct2/show/NCT01687257?term=gs-7977&rank=7
will be starting sometime soon but it not scheduled to be performed in WA according to clinicaltrials.org.
I was a previous null-responder to peg-INF and RVB and became UND within 2 weeks after starting treatment and have encephalopathy and ascites now for 3 years.
Regarding HCC. I had never heard of so many related people having liver cancer. The main causes of HCC are hepatitis B carriers, hepatitis C. and Stage 4 primary biliary cirrhosis. So I assume these are the liver diseases they have.
The HCC surveillance interval is based on tumor doubling times. Which is why the 6 month interval is the standard. Although each hepatologist or transplant center can have it own protocols. I am monitor every 3 months because of my history with HCC and rising AFP numbers.
Surveillance for HCC is 6 month ultrasounds and AFP. While using CT scans can at times detect masses not seen on an ultrasound, for CT scanning to have maximum sensitivity this will require 4-phase scans, with
the attendant high levels of radiation and potential long term carcinogenesis risk.
I assume this is the protocol his hepatologist and transplant center uses so I think it is appropriate but just realize the additional risk. I have has so many CT scans I have lost count and don't worry about the risk from the radiation as I am more worried about missing a tumor that could kill me sooner rather than later. Also and you may know this ultrasound can only detect a mass it can't tell if it is benign or cancer. So when a growth is seen on an ultrasound then a dynamic CT or MRI is perform to look for the tell-tale signs of HCC (‘‘washout’’ during the venous phase,)
I understand your concern about HCC. Catching it early as with most cancers is the key. I have had 2 tumors between 2-3 cm which is a treatable size.
Here is the AASLD protocol:
* Nodules found on ultrasound surveillance that are smaller than 1 cm should be followed with ultrasound at intervals from 3-6 months (level III). If there has been no growth over a period of up to 2 years, one can revert to routine surveillance
* Nodules larger than 1 cm found on ultrasound screening of a cirrhotic liver should be investigated further with either 4-phase multidetector CT scan or
dynamic contrast enhanced MRI. If the appearances are typical of HCC (i.e., hypervascular in the arterial phase with washout in the portal venous or delayed phase), the lesion should be treated as HCC. If the findings are not characteristic or the vascular profile is not typical, a second contrast enhanced study with the other imaging modality should be performed, or the lesion should be biopsied (level II).
Best of luck to your husband. I hope they are helping him to remain as healthy as possible for as long as possible so he can try the next generation of treatment so he can prevent having to have a liver transplant.
Thanks for the great update.
Hang in there!
Never, never, never give up. ~ Winston Churchill
Hector
I am glad your husband is still compensated. That is a very good thing.
It appears he is unresponsive to interferon treatments which is why he doesn't respond quickly to treatment and then later has breakthrough. So I agree that a non-interferon treatment is his best option. He might want to see if a trial without interferon will be tested at his transplant center for cirrhotics.
The Gilead "GS-7977 and Ribavirin in Patients With Chronic HCV With Cirrhosis and Portal Hypertension With or Without Liver Decompensation"
ClinicalTrials.gov Identifier: NCT01687257
http://www.clinicaltrials.gov/ct2/show/NCT01687257?term=gs-7977&rank=7
will be starting sometime soon but it not scheduled to be performed in WA according to clinicaltrials.org.
I was a previous null-responder to peg-INF and RVB and became UND within 2 weeks after starting treatment and have encephalopathy and ascites now for 3 years.
Regarding HCC. I had never heard of so many related people having liver cancer. The main causes of HCC are hepatitis B carriers, hepatitis C. and Stage 4 primary biliary cirrhosis. So I assume these are the liver diseases they have.
The HCC surveillance interval is based on tumor doubling times. Which is why the 6 month interval is the standard. Although each hepatologist or transplant center can have it own protocols. I am monitor every 3 months because of my history with HCC and rising AFP numbers.
Surveillance for HCC is 6 month ultrasounds and AFP. While using CT scans can at times detect masses not seen on an ultrasound, for CT scanning to have maximum sensitivity this will require 4-phase scans, with
the attendant high levels of radiation and potential long term carcinogenesis risk.
I assume this is the protocol his hepatologist and transplant center uses so I think it is appropriate but just realize the additional risk. I have has so many CT scans I have lost count and don't worry about the risk from the radiation as I am more worried about missing a tumor that could kill me sooner rather than later. Also and you may know this ultrasound can only detect a mass it can't tell if it is benign or cancer. So when a growth is seen on an ultrasound then a dynamic CT or MRI is perform to look for the tell-tale signs of HCC (‘‘washout’’ during the venous phase,)
I understand your concern about HCC. Catching it early as with most cancers is the key. I have had 2 tumors between 2-3 cm which is a treatable size.
Here is the AASLD protocol:
* Nodules found on ultrasound surveillance that are smaller than 1 cm should be followed with ultrasound at intervals from 3-6 months (level III). If there has been no growth over a period of up to 2 years, one can revert to routine surveillance
* Nodules larger than 1 cm found on ultrasound screening of a cirrhotic liver should be investigated further with either 4-phase multidetector CT scan or
dynamic contrast enhanced MRI. If the appearances are typical of HCC (i.e., hypervascular in the arterial phase with washout in the portal venous or delayed phase), the lesion should be treated as HCC. If the findings are not characteristic or the vascular profile is not typical, a second contrast enhanced study with the other imaging modality should be performed, or the lesion should be biopsied (level II).
Best of luck to your husband. I hope they are helping him to remain as healthy as possible for as long as possible so he can try the next generation of treatment so he can prevent having to have a liver transplant.
Thanks for the great update.
Hang in there!
Never, never, never give up. ~ Winston Churchill
Hector
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