Aa
Screening for cancer after SVR
First I want to say hello and hope everyone is benefiting from all the new treatments.
I moved to Florida and found a GI that I see locally. He wants me to have an ultrasound and a blood test for AFP every six months even though I am SVR for 4 years now and my fibrosis is improving. I searched the web for treatment recommendations for SVR patients and couldn't find anything meaningful that talked about liver cancer rates after SVR.
This seems aggressive to me and not something I am willing to do without some studies that show a high risk for liver cancer after SVR.
Anyone have any data that might be useful?
Thanks,
Eric
I moved to Florida and found a GI that I see locally. He wants me to have an ultrasound and a blood test for AFP every six months even though I am SVR for 4 years now and my fibrosis is improving. I searched the web for treatment recommendations for SVR patients and couldn't find anything meaningful that talked about liver cancer rates after SVR.
This seems aggressive to me and not something I am willing to do without some studies that show a high risk for liver cancer after SVR.
Anyone have any data that might be useful?
Thanks,
Eric
Hey there, good to hear from you. Are you treating now?
I moved to Florida and the GI, I see here is good, but not in the same league as the Dr D and the rest at Mt Sinai. Local guy wants me to have an ultrasound every six months. I decided it can't hurt, so I will do it (non invasive and no radiation). Then he said I should have an AFT blood test as well and that lowered my opinion of him. AFT is certainly not necessary if I have an ultrasound.
Not sure what you mean by tummy rumblings unless you refer to the wonderful impact on GI from triple therapy. Then I treated myself with a large dose of Dove Unconditional chocolate ice cream. Cant find it any longer; can't believe any company in their right mind would deprive us from such a wonderful treatment for depression and stomach distress.
I moved to Florida and the GI, I see here is good, but not in the same league as the Dr D and the rest at Mt Sinai. Local guy wants me to have an ultrasound every six months. I decided it can't hurt, so I will do it (non invasive and no radiation). Then he said I should have an AFT blood test as well and that lowered my opinion of him. AFT is certainly not necessary if I have an ultrasound.
Not sure what you mean by tummy rumblings unless you refer to the wonderful impact on GI from triple therapy. Then I treated myself with a large dose of Dove Unconditional chocolate ice cream. Cant find it any longer; can't believe any company in their right mind would deprive us from such a wonderful treatment for depression and stomach distress.
Hellowww Andiamo - makes me want to play a mandolin. Really nice to see you posting! You must be on your 11th chapter by now. That phone call must have jarred you out of a 'stream of consciousess' sililoquy into a rude reality to cause your return to this safe haven.
Your wife is the captain on land I C. haha Greetings to the fair lady. I am awaiting confirmation of a sphere for a world instead of a flat disc (SVR). I am nervous. You handled this, my ignorance, this point in time of anticipation - how did you handle the rumbling in the tummy - how many times again did you lift your saber against Puff?
Your wife is the captain on land I C. haha Greetings to the fair lady. I am awaiting confirmation of a sphere for a world instead of a flat disc (SVR). I am nervous. You handled this, my ignorance, this point in time of anticipation - how did you handle the rumbling in the tummy - how many times again did you lift your saber against Puff?
I had to jump on and say congrats Eric. When I was treating at ESLD levels, I read a lot of your posts. at 6 mos into treatment, my dr said I was no longer considered esld and was now at stage 4. I plan on moving it up some more.
Thanks for sharing your experiences. Enjoy your new home! Live it UP!!
I was told that 6 mos ultrasounds would be my lifelong legacy from hep c. Thanks for all the info Hector! BTW - 12 weeks post - und. I just love saying that.
Karen :)
Thanks for sharing your experiences. Enjoy your new home! Live it UP!!
I was told that 6 mos ultrasounds would be my lifelong legacy from hep c. Thanks for all the info Hector! BTW - 12 weeks post - und. I just love saying that.
Karen :)
St patiens if they had eradicated the virus sussefully..God to see you Eric.. all the best
Yikes should have read:
------------------------------------------------------------------
St 2 patients if they had eradicated the virus succesfully . Good to see you Eric
All the best
Will
Yikes should have read:
------------------------------------------------------------------
St 2 patients if they had eradicated the virus succesfully . Good to see you Eric
All the best
Will
This is the latst from CCO . based on patient profiles. In this case it is recommended he get frequent HCC screening,however I have never read anything about screening for St patiens if they had eradicated the virus sussefully..God to see you Eric.. all the best
Will
Patient Case: Posttreatment Monitoring of Patients
The patient is a 56-year-old white male with genotype 1a HCV infection. A previous liver biopsy in 2009 revealed stage 3 bridging fibrosis. Laboratory findings are as follows: AST is 56 U/L, ALT is 47 U/L, total bilirubin is 0.8 mg/dL, albumin is 3.9 g/dL, prothrombin time 7.8 seconds, white blood cell count of 3.4 x 103 cells/μL, hemoglobin is 11.6 g/dL, and platelet count is 112,000 cells/μL. He is treated with telaprevir-based therapy for 12 weeks followed by peginterferon/ribavirin to Week 24, at which point he declined further therapy. HCV RNA is undetectable at treatment cessation and remains undetectable 24 weeks later.
How will the patient need to be followed in the coming years?
Analysis by Donald M. Jensen, MD:
HCC surveillance should be performed every 6 months for the remainder of this patient’s life. It is likely that this patient has cirrhosis based on his AST:ALT ratio and the presence of thrombocytopenia. The 2009 biopsy probably underestimated his degree of fibrosis, which is not uncommon. According to AASLD guidelines,[2] he should have received 48 total weeks of treatment, but he did respond successfully to 24 weeks. Patients with cirrhosis require continued surveillance for HCC since the risk persists, albeit reduced.[19] The risk of hemorrhage from esophageal varices, however, is nonexistent following SVR, and endoscopic surveillance for these is not necessary.[37]
Will
Patient Case: Posttreatment Monitoring of Patients
The patient is a 56-year-old white male with genotype 1a HCV infection. A previous liver biopsy in 2009 revealed stage 3 bridging fibrosis. Laboratory findings are as follows: AST is 56 U/L, ALT is 47 U/L, total bilirubin is 0.8 mg/dL, albumin is 3.9 g/dL, prothrombin time 7.8 seconds, white blood cell count of 3.4 x 103 cells/μL, hemoglobin is 11.6 g/dL, and platelet count is 112,000 cells/μL. He is treated with telaprevir-based therapy for 12 weeks followed by peginterferon/ribavirin to Week 24, at which point he declined further therapy. HCV RNA is undetectable at treatment cessation and remains undetectable 24 weeks later.
How will the patient need to be followed in the coming years?
Analysis by Donald M. Jensen, MD:
HCC surveillance should be performed every 6 months for the remainder of this patient’s life. It is likely that this patient has cirrhosis based on his AST:ALT ratio and the presence of thrombocytopenia. The 2009 biopsy probably underestimated his degree of fibrosis, which is not uncommon. According to AASLD guidelines,[2] he should have received 48 total weeks of treatment, but he did respond successfully to 24 weeks. Patients with cirrhosis require continued surveillance for HCC since the risk persists, albeit reduced.[19] The risk of hemorrhage from esophageal varices, however, is nonexistent following SVR, and endoscopic surveillance for these is not necessary.[37]
Sold the boat. It's too shallow for a cruising sailboat on the west coast. Some people do have them, but it's not great sailing and my wife is tired of it. Thanks for asking though. I hope all is well with you.
I have already been in a Telaprevir (which is Incivek), trial, back in 2007. At that time, I was exposed to the Telaprevir, but I was randomized into the "NO RIBA" group. So all I go was Telaprevir and Peg. I had a big drop in my viral load initially, but since there was no Riba in the mix, I had breakthrough and my viral load went back up, rebounded quickly at week 3. I was kicked out of the trial due to non-response by week 5. Since I've been exposed to Telaprevir, no other doctors (including Schiff), want me to do another treatment with any drugs in that same class. In other words that don't want me retreating with Telaprevir(Incivek) or Boceprevir(Victrelis), due to the previous exposure to Telap and resistance... None of the new trials for all orals have had a spot for a null responder/Telaprevir failure patient (who didn't get all 3 drugs). So, that why I'm not doing any treatments. I've already done 11 treatments in my HCV life (4 TX's were trials), 1 TX was a maintenance dosing regiment, all the rest of the 6 TX's were full scheduled TX's with normal dosing or double dosing. My last bio #5 showed about a stage 2 no bridging - which went along with that fibroscan that was done down there by Schiff last year. But, Bio#3 and Bio#4 showed bridging fibrosis. When I had a baseline upper endoscopy, my esophagus was free of varices (a good thing). I think my GI is just monitoring me for liver cancer-just to be safe. Susan400
Nothing to add to the good advice given above, but just wanted to welcome you to the Sunshine State. Think it should be renamed to the Rainy State with the amount of rain falling recently. Hope you're happy with your GI.
How nice to see you here.
How's the boat ?
After I get my 6 month SVR in September I will not be doing cancer screening.
My reasoning is that nobody in my close family has had cancer and even more important, despite being close to dying from ESLD, I never developed liver cancer. Genetically I believe I am not predisposed to the the big C.
Most doctors make decisions based on graphs and statistics, not on individuals. Our doctors are our guides. Ultimately our health decisions are ours to make.
I'm moving forward away from fretting over my health:)
Wishing you the best~
OH
How's the boat ?
After I get my 6 month SVR in September I will not be doing cancer screening.
My reasoning is that nobody in my close family has had cancer and even more important, despite being close to dying from ESLD, I never developed liver cancer. Genetically I believe I am not predisposed to the the big C.
Most doctors make decisions based on graphs and statistics, not on individuals. Our doctors are our guides. Ultimately our health decisions are ours to make.
I'm moving forward away from fretting over my health:)
Wishing you the best~
OH
My sentiments exactly. My first reaction is that it's the way medicare patients provide money to the doctors. I am going to have the ultrasound this time, but look very carefully at having the next one.
One of the papers I read seemed to indicate that once you get to stage 3 - 4 transitional, your risk is the same as cirrhosis. Hector provided me with lots to read. One paper suggested that even though the liver repairs itself, the risk for cancer remains high for some number of years. That sounds plausible to me.
There really is not enough data yet, but with all the SVRs with the new drugs, there will be plenty more data in the next few years.
One of the papers I read seemed to indicate that once you get to stage 3 - 4 transitional, your risk is the same as cirrhosis. Hector provided me with lots to read. One paper suggested that even though the liver repairs itself, the risk for cancer remains high for some number of years. That sounds plausible to me.
There really is not enough data yet, but with all the SVRs with the new drugs, there will be plenty more data in the next few years.
"I am stage 2 now. I improved one stage since SVR."
Wow that is awesome Eric! I am so happy for you.
Then why the cancer screening? At stage 2 none of that is even suggested for a patient, Maybe the new Doctor isn't buying it???
I am really interested in knowing the reason for this, anyone?
Wow that is awesome Eric! I am so happy for you.
Then why the cancer screening? At stage 2 none of that is even suggested for a patient, Maybe the new Doctor isn't buying it???
I am really interested in knowing the reason for this, anyone?
When you were under the care of Dr.Eugene R.Schiff who is by far one of the best what was is suggestions? And wasn't he going to either start a trial or get you in one using these newer drugs in the pipeline?
Since you have been to him and he seemed to care a great deal about you with your trearment history I would seek out his advice, a phone call, email, anything. Hang in there Susan.
Since you have been to him and he seemed to care a great deal about you with your trearment history I would seek out his advice, a phone call, email, anything. Hang in there Susan.
Hi how are you?
I am somewhat concerned about some of the things you have posted, as there seems to be some contradictions and misunderstands in what you are assuming and the nature of your liver disease.
I hope some of my comments and concerns are misunderstandings on my part, and not between yourself and your doctor and your diagnosis and prognosis. I am concerned because I don’t want you and anyone else to end up in the position I am in (liver disease has progressed too far to salvage my liver thus requiring a transplant to continue living). Again, hopefully I am missing the obvious and there is really no discrepancy at all.
How often are you supposed to have biopsies?
You may want a repeat liver biopsy if:
* It has been 5 years or more since your last liver biopsy.
Especially if:
* Your earlier biopsy or biopsies found your stage to be 0 to 3 (not 4) and you want to know whether your liver disease has progressed.
Or if:
* You are thinking of starting treatment (or re-treatment) because your most recent liver biopsy showed an increase in liver damage compared with a previous biopsy.
Personally I would err on the side of caution. Especially since you have at least stage 3, bridging fibrosis. Stage 3 already reduce the chance of hep C treatment being successful but when you develop full cirrhosis, your chances of HCV cure will be even greatly reduced.
I would get a biopsy every 3- 5 years until you develop cirrhosis. Particularly if you plan on treating again. Talk to your gastro or hepatologist to get their opinion. The average time between stages is 7 years and it usually progresses more quickly as we get older.
“I have never cleared the HCV.”
So you are a “null-responder”? Have you tried treating with a DAA also? If not you should. As time goes on and your liver disease progresses the chances of cure are reduced. Incivek does work in previous “null-responders”. Off the top of my head for persons with stage 3 liver disease…39%. With stage 4 (cirrhosis) the percentage is reduced to 14%!
“My LFT's are doing great though”
1. The “so-called” LFT tests do NOT indicate how well your liver is working. Bilirubin, Creatinine and PT/INR tests do.
2. LFT have no association with the degree or progression of liver disease.
“My last ultrasound done about 6 wks ago showed an increase in my liver size of 1 cm from the sono done 6 mon. previous to that.”
An early cirrhotic liver may shrink, remain the same size or get larger. So an ultrasound is not used to diagnose stages of liver disease. An ultrasound can confirm fully developed cirrhosis, when the architecture of the liver changes and macro and micro nodules can be seen confirming cirrhosis. But ultrasounds main purpose in patients with extensive liver disease caused by hepatitis C is to look for liver cancer!
Only a biopsy can diagnose stage 4 liver diseases.
“I'm just wondering how long I can put it off. “
“can I just get away with skipping it altogether and just doing the sono's and labs? “
No. If you wait too long you will lose the best chance you have of cure and in time you will develop decompensated cirrhosis. At that time you will not be able to treat your hepatitis and will need a liver transplant to survive. This is what has happened to me. You don’t want it to happen to you. To not get proper ongoing treatment when close to cirrhosis, a possible fatal illness, is something you can never correct once your window of opportunity goes by.
If I were you, I would get a biopsy soon and try treatment with Incivek (if you haven’t already) while you have the best odds you ever will of curing the virus.
“you're doing so well, we can push your visits out to once a year and just monitor you in between on the 6 mon interval with the sono's/lab and call you with the results".”
Have you asked your doctor why ultrasounds at 6 month intervals???
Are you aware ultrasounds at 6 months intervals are only used in patients with cirrhosis to monitor patients for HCC (liver cancer)? Are you having AFP blood tests at 6 months also?
You need to have a conversation with your gastro ASAP. There appears to be some misunderstanding here. Your impression seems to be your doctor is telling you “you're doing so well” while at the same time it appears that your doctor is performing surveillance for HCC (liver cancer) that is only needed in patients that are already stage 4 (cirrhotic). Something appears to be wrong with this picture!
Good luck to you.
Let us know what happens.
Hector
I am somewhat concerned about some of the things you have posted, as there seems to be some contradictions and misunderstands in what you are assuming and the nature of your liver disease.
I hope some of my comments and concerns are misunderstandings on my part, and not between yourself and your doctor and your diagnosis and prognosis. I am concerned because I don’t want you and anyone else to end up in the position I am in (liver disease has progressed too far to salvage my liver thus requiring a transplant to continue living). Again, hopefully I am missing the obvious and there is really no discrepancy at all.
How often are you supposed to have biopsies?
You may want a repeat liver biopsy if:
* It has been 5 years or more since your last liver biopsy.
Especially if:
* Your earlier biopsy or biopsies found your stage to be 0 to 3 (not 4) and you want to know whether your liver disease has progressed.
Or if:
* You are thinking of starting treatment (or re-treatment) because your most recent liver biopsy showed an increase in liver damage compared with a previous biopsy.
Personally I would err on the side of caution. Especially since you have at least stage 3, bridging fibrosis. Stage 3 already reduce the chance of hep C treatment being successful but when you develop full cirrhosis, your chances of HCV cure will be even greatly reduced.
I would get a biopsy every 3- 5 years until you develop cirrhosis. Particularly if you plan on treating again. Talk to your gastro or hepatologist to get their opinion. The average time between stages is 7 years and it usually progresses more quickly as we get older.
“I have never cleared the HCV.”
So you are a “null-responder”? Have you tried treating with a DAA also? If not you should. As time goes on and your liver disease progresses the chances of cure are reduced. Incivek does work in previous “null-responders”. Off the top of my head for persons with stage 3 liver disease…39%. With stage 4 (cirrhosis) the percentage is reduced to 14%!
“My LFT's are doing great though”
1. The “so-called” LFT tests do NOT indicate how well your liver is working. Bilirubin, Creatinine and PT/INR tests do.
2. LFT have no association with the degree or progression of liver disease.
“My last ultrasound done about 6 wks ago showed an increase in my liver size of 1 cm from the sono done 6 mon. previous to that.”
An early cirrhotic liver may shrink, remain the same size or get larger. So an ultrasound is not used to diagnose stages of liver disease. An ultrasound can confirm fully developed cirrhosis, when the architecture of the liver changes and macro and micro nodules can be seen confirming cirrhosis. But ultrasounds main purpose in patients with extensive liver disease caused by hepatitis C is to look for liver cancer!
Only a biopsy can diagnose stage 4 liver diseases.
“I'm just wondering how long I can put it off. “
“can I just get away with skipping it altogether and just doing the sono's and labs? “
No. If you wait too long you will lose the best chance you have of cure and in time you will develop decompensated cirrhosis. At that time you will not be able to treat your hepatitis and will need a liver transplant to survive. This is what has happened to me. You don’t want it to happen to you. To not get proper ongoing treatment when close to cirrhosis, a possible fatal illness, is something you can never correct once your window of opportunity goes by.
If I were you, I would get a biopsy soon and try treatment with Incivek (if you haven’t already) while you have the best odds you ever will of curing the virus.
“you're doing so well, we can push your visits out to once a year and just monitor you in between on the 6 mon interval with the sono's/lab and call you with the results".”
Have you asked your doctor why ultrasounds at 6 month intervals???
Are you aware ultrasounds at 6 months intervals are only used in patients with cirrhosis to monitor patients for HCC (liver cancer)? Are you having AFP blood tests at 6 months also?
You need to have a conversation with your gastro ASAP. There appears to be some misunderstanding here. Your impression seems to be your doctor is telling you “you're doing so well” while at the same time it appears that your doctor is performing surveillance for HCC (liver cancer) that is only needed in patients that are already stage 4 (cirrhotic). Something appears to be wrong with this picture!
Good luck to you.
Let us know what happens.
Hector
Hi everybody. I don't get on here often anymore, other than the occasional peeping in a what people are posting. Mainly because I don't have alot to offer. Hector, I admire you because you are so positive and still helping people with all you've been through! I do have a question though. How often are you supposed to have biopsies? I hate them, but with that being said, there are no fibroscans available to me w/o being in a trial and being in an HMO/PPO where I have to use the doctors here locally or it's not covered. A biopsy is covered though. I've already had 5 biopsies in my lifetime for the HCV, since my diagnosis in 1994. I was fortunate to have a fibroscan in a trial last year in Univ. of Miami/Schiff, the first fibro I'd ever had. I had hardly any damage like a 2 minimum. Which was surprised considering that on Biopsy #3 biop #4, I had bridging fibrosis. I have never cleared the HCV. My LFT's are doing great though. My last ultrasound done about 6 wks ago showed an increase in my liver size of 1 cm from the sono done 6 mon. previous to that. These sono's are always done at the same facility. It's been 3 yrs since my last biop. If I could never have to have another one, it would be too soon... Anyway, I'm just wondering how long I can put it off. If I'm doing good despite never clearing and still having a positive viral load, can I just get away with skipping it altogether and just doing the sono's and labs? Anybody know, or have any studies? My doctor says, "you're doing so well, we can push your visits out to once a year and just monitor you in between on the 6 mon interval with the sono's/lab and call you with the results". Whenever I do see him, all I do is sit there and talk to him, there's never any tapping on my liver or anything like that. Anyhow, Hector and Eric, I wish you both well! Susan400
"I am stage 2 now. I improved one stage since SVR."
Wow that is awesome Eric! I am so happy for you.
Cheers!
Hector
Wow that is awesome Eric! I am so happy for you.
Cheers!
Hector
I am talking about additional data on SVR patients with stage 3 or greater. Hopefully, in a few more years, many more people will attain SVR and we will have a larger pool of people to sample for cancer rates.
Best to you Eric, as its best to be safe then sorry. When you say more data available are you talking about actual liver improvement once one becomes SVR?
I don't think they do. I was stage 3 - 4 transitional and that's the starting point they use. Reading Hector's post, it seems that it's prudent for me to screen for a few years until more data is available.
So now they recommend people that are stage 2 screen for cancer? Thats a first for me.
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