Aa
sovaldi and ribavirin results after 17 days
Started at 8 million and after 17 day blood draw it shows 200. I am amazed as I have cirr and Hcc. I only hope that after 2 more weeks it is undetectable, I am 1b. I had RFA on the tumor at Mayo last week and my hope is if I can rid myself of the virus my liver will improve and I will not grow any new tumors. Its a long shot as they say the chances are new ones will return. But I will play all the angles and hope for the best.
I guess I'm curious if maybe you think or have heard anything about using this combo to get one UND and then keep them on a maintenance therapy type dose until a TP is available, we know that didn't seem to pan out in the past but were now in a whole new world when it comes to treating. As for you being one of the luckiest people on the planet? Well you never gave up but I would go in on lottery tickets with you...:)
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Upbeat sorry about the hijack.
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Upbeat sorry about the hijack.
Thanks can-do.
Your question...
"So are you saying you was not eligible for the TP when they put you on the list and in the trial study and the Meds did so much good that it reversed your damage enough to then get on the list?"
I was on the waiting-list for my cirrhosis before I ever was diagnosed with HCC. I had decompensated in 2009. On June 1st 2011 I was diagnosed with HCC. I had two tumors one right after another. Each was obliterated using TACE. All was good. I was accumulating MELD points ever 3 months and going closer to the top of the waiting list that included over 700 others waiting for transplant. About 350 people with blood type O. I knew a number of people who had gotten transplants with MELD score of 33 and 34 so I new I was getting closer.
Then my 3rd tumor showed up strangely. My AFP tumor marker started to rise over a hundred and then into the hundred yet there was nothing found on my MRIs.
This is when I had started my trial with the what was called GS-7977 + ribavirin 48 week treatment.
This was in March of last year when I was removed from the waiting list because my HCC AFP was above 500. An AFP over 500 indicates that I would likely have recurrence of my HCC even if I did receive a transplant which meant I was terminal anyway. They don't give livers to people who don't have a less a certain percentage of a chance of surviving. This is the same reason there is the Milan Criteria for HCC patients. If your tumors are too large or you have too many tumor it is likely you will have recurrence and since the only cure for HCC is transplant the odds are you won't get a second transplant and if you do patients with more than one transplant don't do well. This was the first sign of trouble as tumors with high AFPs are commonly aggressive tumors. When they could finally see it it was small. May 2 cm.
In order to under go TACE, RFA, PEI, Cyberknife HCC treatments a patient needs to have stable cirrhosis. Class A or B at most. Otherwise the treatment could lead to worsening liver disease or liver failure. So the Sovaldi treatment kept me stable and able to undergo the 6 cancer treatments I had last year month after month.
We tried the TACE treatment that had work so well before on my earlier tumors. Nothing. The tumor grew even more and seemed to like the chemo! "Yum give me more". My AFP continued to rise. We tried another TACE treatment. Same thing. Clearly TACE wasn't going to work. The Tumor Board met and discussed treating with RFA (Radio Frequency Ablation) the treatment Upbeat just had. But it was ruled out due to the locationof my tumor. The risk vs benefit was too high. The treatment probably wouldn't have worked anyway because the surrounding structures (portal vein and bile ducts) would have acted as heat sinks preventing the heat from destroying the tumor but it could also damage my portal vein which carries all the blood from your digestive system back to the heart. Not something you want to have happen. So they tried injecting ethanol in the tumor which dehydrates the tumor thus killing it. Well I had 3 of those treatments month after month to no avail. This is when I was told by my hepatologist I didn't have much longer to live if I didn't get a transplant soon. Of course I had been off the waiting-list for many months now and failed every standard HCC treatment. To say things for me looked bleak is an understatement. Luckily I already knew my situation was dire so it didn't come as a shock but it is something you never expect to hear and don't want to ever have happen to you.
But I wasn't giving up because I still had the will to fight my cancer and rather die fighting then throwing in the towel after all these years I had waited for a transplant and I told my hepatologist that. I told her if someone wanted to try an experiment on me I was willing to do that or anything to even have a chance of living. I figured I had nothing to lose I was going to die soon so what could be worse? We had made up a plan of lower to higher risks including the final one of cutting off the lobe containing the tumor and hoping that I could get a transplant in the day or two I had to live as I went into liver failure. Luckily we didn't have to resort to the doomsday option and I decided to be the first patient of my doctor to have robotic computer controlled radiation treatment (usually used for brain, lung, prostate and bone cancers) which resulted in my AFP going down to 377, under the 500 limit for transplant, and I was back on the waiting-list again. 11 days later I got my transplant. I went from a worst case scenario to the best case post transplant. I am one of the luckiest people on the planet as far as I am concerned.
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Whats your plan for killing the virus?
Frankly I don't really think about it much. I have one of the best hepatitis experts in the country as my doc so she will find me the best treatment for me whether on the market or in a trial. So far my hep C has caused no damage to my new donor lever so I am still amazingly stage 0. Wow what a concept! My AST and ALT are 17 and 23. So all is good.
I never got to do RFA because of the location of the tumor being adjacent to my portal vein and between two bile ducts. Instead I had 3 Percutaneous Ethanol Injections (PEI) and 4 TACE treatments as well as 5 radiation sessions. All had their own sets of issues usually with pain and extreme fatigue but it certainly beats dying of cancer so in my mind I would go through all of it again in a heartbeat if it meant a chance at living.
Dilaudid was my drug of choice after each one of my 8 cancer treatments. Came in handy to after my transplant. Having a 15" incision and a hernia surgery 9 days after transplant showed me that all of the pre-transplant pain
was good practice for those surgeries. Now I am cancer free and pain free. All worth the cost of admission to a life free of cancer.
Hang in there. You will make it through this and I can tell you life is so much sweeter when you get on the other side of what you are going through. What does that advertisement say ..."PRICELESS" yeah that sums it all up.
Be well!
Howie
Your question...
"So are you saying you was not eligible for the TP when they put you on the list and in the trial study and the Meds did so much good that it reversed your damage enough to then get on the list?"
I was on the waiting-list for my cirrhosis before I ever was diagnosed with HCC. I had decompensated in 2009. On June 1st 2011 I was diagnosed with HCC. I had two tumors one right after another. Each was obliterated using TACE. All was good. I was accumulating MELD points ever 3 months and going closer to the top of the waiting list that included over 700 others waiting for transplant. About 350 people with blood type O. I knew a number of people who had gotten transplants with MELD score of 33 and 34 so I new I was getting closer.
Then my 3rd tumor showed up strangely. My AFP tumor marker started to rise over a hundred and then into the hundred yet there was nothing found on my MRIs.
This is when I had started my trial with the what was called GS-7977 + ribavirin 48 week treatment.
This was in March of last year when I was removed from the waiting list because my HCC AFP was above 500. An AFP over 500 indicates that I would likely have recurrence of my HCC even if I did receive a transplant which meant I was terminal anyway. They don't give livers to people who don't have a less a certain percentage of a chance of surviving. This is the same reason there is the Milan Criteria for HCC patients. If your tumors are too large or you have too many tumor it is likely you will have recurrence and since the only cure for HCC is transplant the odds are you won't get a second transplant and if you do patients with more than one transplant don't do well. This was the first sign of trouble as tumors with high AFPs are commonly aggressive tumors. When they could finally see it it was small. May 2 cm.
In order to under go TACE, RFA, PEI, Cyberknife HCC treatments a patient needs to have stable cirrhosis. Class A or B at most. Otherwise the treatment could lead to worsening liver disease or liver failure. So the Sovaldi treatment kept me stable and able to undergo the 6 cancer treatments I had last year month after month.
We tried the TACE treatment that had work so well before on my earlier tumors. Nothing. The tumor grew even more and seemed to like the chemo! "Yum give me more". My AFP continued to rise. We tried another TACE treatment. Same thing. Clearly TACE wasn't going to work. The Tumor Board met and discussed treating with RFA (Radio Frequency Ablation) the treatment Upbeat just had. But it was ruled out due to the locationof my tumor. The risk vs benefit was too high. The treatment probably wouldn't have worked anyway because the surrounding structures (portal vein and bile ducts) would have acted as heat sinks preventing the heat from destroying the tumor but it could also damage my portal vein which carries all the blood from your digestive system back to the heart. Not something you want to have happen. So they tried injecting ethanol in the tumor which dehydrates the tumor thus killing it. Well I had 3 of those treatments month after month to no avail. This is when I was told by my hepatologist I didn't have much longer to live if I didn't get a transplant soon. Of course I had been off the waiting-list for many months now and failed every standard HCC treatment. To say things for me looked bleak is an understatement. Luckily I already knew my situation was dire so it didn't come as a shock but it is something you never expect to hear and don't want to ever have happen to you.
But I wasn't giving up because I still had the will to fight my cancer and rather die fighting then throwing in the towel after all these years I had waited for a transplant and I told my hepatologist that. I told her if someone wanted to try an experiment on me I was willing to do that or anything to even have a chance of living. I figured I had nothing to lose I was going to die soon so what could be worse? We had made up a plan of lower to higher risks including the final one of cutting off the lobe containing the tumor and hoping that I could get a transplant in the day or two I had to live as I went into liver failure. Luckily we didn't have to resort to the doomsday option and I decided to be the first patient of my doctor to have robotic computer controlled radiation treatment (usually used for brain, lung, prostate and bone cancers) which resulted in my AFP going down to 377, under the 500 limit for transplant, and I was back on the waiting-list again. 11 days later I got my transplant. I went from a worst case scenario to the best case post transplant. I am one of the luckiest people on the planet as far as I am concerned.
----------------------------------------------------------------------------------------------
Whats your plan for killing the virus?
Frankly I don't really think about it much. I have one of the best hepatitis experts in the country as my doc so she will find me the best treatment for me whether on the market or in a trial. So far my hep C has caused no damage to my new donor lever so I am still amazingly stage 0. Wow what a concept! My AST and ALT are 17 and 23. So all is good.
I never got to do RFA because of the location of the tumor being adjacent to my portal vein and between two bile ducts. Instead I had 3 Percutaneous Ethanol Injections (PEI) and 4 TACE treatments as well as 5 radiation sessions. All had their own sets of issues usually with pain and extreme fatigue but it certainly beats dying of cancer so in my mind I would go through all of it again in a heartbeat if it meant a chance at living.
Dilaudid was my drug of choice after each one of my 8 cancer treatments. Came in handy to after my transplant. Having a 15" incision and a hernia surgery 9 days after transplant showed me that all of the pre-transplant pain
was good practice for those surgeries. Now I am cancer free and pain free. All worth the cost of admission to a life free of cancer.
Hang in there. You will make it through this and I can tell you life is so much sweeter when you get on the other side of what you are going through. What does that advertisement say ..."PRICELESS" yeah that sums it all up.
Be well!
Howie
Wishing you the best Upbeat, you deserve it.
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Hector, glad your doing well. But a little confused when you say..."The good news for me was that during the treatment my liver disease improved enough so that I could have the 6 different cancer treatments I needed to get my cancer under control and within transplant criteria so I was eligible to get a transplant. So in way even though I failed the treatment it helped to save my life."
So are you saying you was not eligible for the TP when they put you on the list and in the trial study and the Meds did so much good that it reversed your damage enough to then get on the list?
---------------------
Hector, glad your doing well. But a little confused when you say..."The good news for me was that during the treatment my liver disease improved enough so that I could have the 6 different cancer treatments I needed to get my cancer under control and within transplant criteria so I was eligible to get a transplant. So in way even though I failed the treatment it helped to save my life."
So are you saying you was not eligible for the TP when they put you on the list and in the trial study and the Meds did so much good that it reversed your damage enough to then get on the list?
Thanks for the insight howie. Its always appreciated. I can't believe your already 16 weeks post. Time sure flys. Whats your plan for killing the virus? Maybe the new combo drugs that will include both the ns3/4a and ns5a? It looks like a lot of drug companys are going that way. Maybe by the end of the year. I got to tell you that the RFA procedure is not the piece of cake thay make it out to be. When they started talking morphine drips and oxycodone for a week after I should have known. Anyhow its better now as I know yours is.
That is a very good drop. Your should be undetectable soon. You will be undetectable in the next two weeks.
You can learn about the limited results from the only trial to to treat those of us with hep C and HCC that I was in to learn more about treating those with HCC. That preliminary data available on the Sovaldi label.
"SOVALDI in combination with ribavirin is recommended for up to 48 weeks or until the time of liver transplantation, whichever occurs first, to prevent post-transplant HCV reinfection [See Use in Specific Populations (8.9)]."
"8.9 Patients with Hepatocellular Carcinoma Awaiting Liver Transplantation"
NOTE: This trial's primary objective was to study if Sovaldi + ribavirin could prevent recurrence of hep C post transplant not to see who could be cured before transplant. It was the results from this study that got approval for the use of Sovaldi + ribavirin in patients with hep C and HCC. For efficacy and safety. All 61 of us were expected to be transplanted within one year. In other words we would all be treating when we had our transplants. For me I didn't get a transplant during the 48 weeks of treatment and Gilead wouldn't let me treat longer so I relapsed and now have hep C after my transplant. The good news for me was that during the treatment my liver disease improved enough so that I could have the 6 different cancer treatments I needed to get my cancer under control and within transplant criteria so I was eligible to get a transplant. So in way even though I failed the treatment it helped to save my life.
As your doctors mentioned HCC recurrence in common once cirrhosis has developed to the point of the occurrence of HCC. Recurrence of HCC depends on many factors such as tumor size, number, differentiation, microvascular invasion, molecular profile, etc. For most of us HCC treatment is only palliative and extends life so we can survive until we are able have enough MELD points to receive a liver transplant. But for some RFA like resection it can be curative depending of the nature of a person's particular tumor. The main thing is with proper HCC monitoring you can feel assured that if any new tumors should appear, they will be treated early which gives the best opportunity to keep them manageable until you are qualified for transplant (MELD points).
Good luck with your treatment and having no recurrence of your HCC! Hang in there.
Hector
15 weeks post-transplant
You can learn about the limited results from the only trial to to treat those of us with hep C and HCC that I was in to learn more about treating those with HCC. That preliminary data available on the Sovaldi label.
"SOVALDI in combination with ribavirin is recommended for up to 48 weeks or until the time of liver transplantation, whichever occurs first, to prevent post-transplant HCV reinfection [See Use in Specific Populations (8.9)]."
"8.9 Patients with Hepatocellular Carcinoma Awaiting Liver Transplantation"
NOTE: This trial's primary objective was to study if Sovaldi + ribavirin could prevent recurrence of hep C post transplant not to see who could be cured before transplant. It was the results from this study that got approval for the use of Sovaldi + ribavirin in patients with hep C and HCC. For efficacy and safety. All 61 of us were expected to be transplanted within one year. In other words we would all be treating when we had our transplants. For me I didn't get a transplant during the 48 weeks of treatment and Gilead wouldn't let me treat longer so I relapsed and now have hep C after my transplant. The good news for me was that during the treatment my liver disease improved enough so that I could have the 6 different cancer treatments I needed to get my cancer under control and within transplant criteria so I was eligible to get a transplant. So in way even though I failed the treatment it helped to save my life.
As your doctors mentioned HCC recurrence in common once cirrhosis has developed to the point of the occurrence of HCC. Recurrence of HCC depends on many factors such as tumor size, number, differentiation, microvascular invasion, molecular profile, etc. For most of us HCC treatment is only palliative and extends life so we can survive until we are able have enough MELD points to receive a liver transplant. But for some RFA like resection it can be curative depending of the nature of a person's particular tumor. The main thing is with proper HCC monitoring you can feel assured that if any new tumors should appear, they will be treated early which gives the best opportunity to keep them manageable until you are qualified for transplant (MELD points).
Good luck with your treatment and having no recurrence of your HCC! Hang in there.
Hector
15 weeks post-transplant
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