Hi Malcolm and wmlj1960 - thanks for the further explanation, it's always good to know more. There is always a lot to take in when seeing a specialist. I am fortunate that one of my sons often comes along and fills in the gaps after, however there are still bits I don't understand.
The lesion can be seen on MRI and I have been having them 6 mthly since it first became an issue. Apparently an ablation needs to be guided by ultrasound, so that is the next step. The health professional who will do the ablation will attend the scan.
The latest MRI was reviewed by the liver transplant team in Auckland and my local specialist here in Christchurch basically said that they cannot just watch it grow.
My liver decompensated in 2012 after 3 abdominal operations in three months, causing a 4th operation which I am very lucky to have survived. This has made my situation more complex than it would have been.
Malcolm - enjoy your time in the North island. Your son has good taste marrying a Mainlander!
Stormybc - all the best for your treatment - I hope it goes smoothly for you.
Linux - my fingers are crossed for you to get on treatment.
Everyone - what has blown me away the most about maybe being virus free is how much more positive my outlook on life in general has become!
mallani said
Jan 13, 2016
Ari,
In cirrhotics, any liver 'lesion' should be assumed to be an HCC until proven otherwise. The best way to image any lesion is with high resolution contrast MRI. Ultrasound is fairly useless.
In cirrhotics, regenerative nodules or haemangiomas can look like HCC's. The differentiating features all rely on arterial uptake of contrast, washout of contrast and how the lesion fills in.
Only 50% of HCC's secrete AFP, so don't go on this.
Small HCC's can be ablated or removed depending on the position in the liver. Lesions as small as 5mm can be seen on a good MRI machine.
Sorry about your problems in Christchurch. It must have been a nightmare.
We're off to Auckland in March for 2 weeks touring North Island with my son and family ( the D-I-L is from Invercargill). Cheers.
wmlj1960 said
Jan 13, 2016
Stormybc wrote:
I am at a stage 4 liver fibrosis cirrhosis which mean the worst scarring there is. I haven't had any Drs say I csn have lazer to cure the scarring and I haven't had any Drs say I need a transplant yet
Hi Stormy.
The "lazer" that Ari is referring to is used for removing a lesion, which is an abnormal spot on the liver which is not uncommon in cirrhotics. The "scarring" you mentioned is scarred liver tissue which is present with all cirrhotics and cannot be cured via laser.
You, Ari, me and Malcolm (mallani) are all 4 classed as cirrhotics but that does not mean we all 4 have this issue with lesions. Ari and I do and mine has shown lately to be of less concern so I only have an MRI done every 6 months now (as opposed to every 3 months last year) to keep it under observation. Ari, however (it sounds to me like), is in the process of having more test done and will possibly have hers removed.
This is an elementary explanation and Malcolm can explain in much better detail if needed. I just want to make sure you know the difference between a "lazer" for a ''lesion'' and ''scarred liver tissue''.
Ari, you are right, everyone's story's "are more complex than they appear in a few posts on a forum". As such, I assume you are aware that there is more than size to consider with your lesion. They look at washout and some things Malcolm can explain. Based on some of my past MRI 'final reports' my lesion was reported as 18mm at one point last year and is now (10-24-15) reported as 9mm, so obviously 18mm was not sufficient reason to treat mine. Based on this I hope you too will be able to continue with MRI monitoring and the lesion will not cause any problem for you. Good luck!
Stormybc said
Jan 12, 2016
I am just about to embark on treatment for Hep C. I am at a stage 4 liver fibrosis cirrhosis which mean the worst scarring there is. I haven't had any Drs say I csn have lazer to cure the scarring and I haven't had any Drs say I need a transplant yet, but then there not very communicative with us here in BC. They won't even test the viral load until week 12 of completed Harvoni as the BC gov won't pay for it. They can't tell me what it would cost if I offer to pay for it myself either. So it seems the systems are far from perfect in every country. I think if you only have one scar and you just started to have elevated enzyme levels you don't have much to worry about as far as your liver functioning. Huge organ can take quite a beating. I have had this virus ravaging mine for 35 years. Still walking around. Liver is only organ in body that can grow itself back from just a piece of it, if there is no longer the virus attacking it. So I have been told. So good luck in your journey and if your enzymes are slightly elevated it just means it's starting to be affecteD but has a long way to go yet.
Ari-anna said
Jan 12, 2016
Thanks for the positive and encouraging comments. I will be very happy to clear this virus, not least because in New Zealand treatment is currently not funded in the free public system. If the Viekira Pak I got through the compassionate programme does not work there are very limited other options until the generic versions become available.
The lesion mallani referred to was first picked up on MRI late 2014 ordered after my alpha fatal protein levels spiked. It could not be seen on ultra-sound scan which meant it could not be zapped via laser and a liver transplant was considered. This put stress levels at peak load as I was in the midst of a lengthy and distressing insurance battle post major earthquakes that had damaged my house and devastated my region 4 years previously.
My son and I went on an adventure to a larger centre for transplant assessments etc; eventually they decided the lesion did not warrant a transplant. As the alpha fatal protein levels went up and down it was assumed this was just part of having cirrhosis. Whew, then my only worries were living with Hep C, living in damaged house in a post disaster city and the insurance claim.
The insurance claim has now been settled (nearly 5 yrs post event) and I am in the midst of managing rebuilding my home.
In the meantime the lesion has grown (9mm to 14mm) as found on a recent MRI. I am now in line for an ultrasound scan to make sure it can be zapped in the local hospital. My alpha fatal protein levels are normal, however, I am assuming it is important that the lesion is treated as in New Zealand you don't get treatment under the free hospital system unless you really need it.
Bit of a lengthy story, I imagine most peoples stories are more complex than they appear in a few posts on a forum.
Aroha to all,
Ari
wmlj1960 said
Jan 12, 2016
That's great news Ari! EOT+4 undetected is an excellent indication that you'll see SVR-12, even with us cirrhotics. It's been a tough 10 year battle for you but this time you will succeed and you can look forward to your liver making more improvement in time. Keep doing what your doing and keep us up to date on your progress!
mallani said
Jan 12, 2016
Hi Ari-anna,
Looking good. Best of luck for the SVR-12.
How's your liver lesion doing? Are you having an MRI? Cheers.
Linuxter said
Jan 12, 2016
Nice Numbers Ari-anna I'll cross my fingers and toes ... wishin' ya well!
Be Well,
Linux
Ari-anna said
Jan 12, 2016
Just seen my doctor - very happy to say that my liver stats for the first time in many a year are within normal range, and, viral load at 4 weeks post treatment is undetected!
Viral load start of treatment HCV RNA 191810 IU/ml
4 weeks into treatment - undetected
end of 24 weeks Viekira Pak plus Ribavirin - undetected
4 weeks post treatment - undetected
One more blood test to go (12 weeks post treatment)
Hi Malcolm and wmlj1960 - thanks for the further explanation, it's always good to know more. There is always a lot to take in when seeing a specialist. I am fortunate that one of my sons often comes along and fills in the gaps after, however there are still bits I don't understand.
The lesion can be seen on MRI and I have been having them 6 mthly since it first became an issue. Apparently an ablation needs to be guided by ultrasound, so that is the next step. The health professional who will do the ablation will attend the scan.
The latest MRI was reviewed by the liver transplant team in Auckland and my local specialist here in Christchurch basically said that they cannot just watch it grow.
My liver decompensated in 2012 after 3 abdominal operations in three months, causing a 4th operation which I am very lucky to have survived. This has made my situation more complex than it would have been.
Malcolm - enjoy your time in the North island. Your son has good taste marrying a Mainlander!
Stormybc - all the best for your treatment - I hope it goes smoothly for you.
Linux - my fingers are crossed for you to get on treatment.
Everyone - what has blown me away the most about maybe being virus free is how much more positive my outlook on life in general has become!
Ari,
In cirrhotics, any liver 'lesion' should be assumed to be an HCC until proven otherwise. The best way to image any lesion is with high resolution contrast MRI. Ultrasound is fairly useless.
In cirrhotics, regenerative nodules or haemangiomas can look like HCC's. The differentiating features all rely on arterial uptake of contrast, washout of contrast and how the lesion fills in.
Only 50% of HCC's secrete AFP, so don't go on this.
Small HCC's can be ablated or removed depending on the position in the liver. Lesions as small as 5mm can be seen on a good MRI machine.
Sorry about your problems in Christchurch. It must have been a nightmare.
We're off to Auckland in March for 2 weeks touring North Island with my son and family ( the D-I-L is from Invercargill). Cheers.
Hi Stormy.
The "lazer" that Ari is referring to is used for removing a lesion, which is an abnormal spot on the liver which is not uncommon in cirrhotics. The "scarring" you mentioned is scarred liver tissue which is present with all cirrhotics and cannot be cured via laser.
You, Ari, me and Malcolm (mallani) are all 4 classed as cirrhotics but that does not mean we all 4 have this issue with lesions. Ari and I do and mine has shown lately to be of less concern so I only have an MRI done every 6 months now (as opposed to every 3 months last year) to keep it under observation. Ari, however (it sounds to me like), is in the process of having more test done and will possibly have hers removed.
This is an elementary explanation and Malcolm can explain in much better detail if needed. I just want to make sure you know the difference between a "lazer" for a ''lesion'' and ''scarred liver tissue''.
Ari, you are right, everyone's story's "are more complex than they appear in a few posts on a forum". As such, I assume you are aware that there is more than size to consider with your lesion. They look at washout and some things Malcolm can explain. Based on some of my past MRI 'final reports' my lesion was reported as 18mm at one point last year and is now (10-24-15) reported as 9mm, so obviously 18mm was not sufficient reason to treat mine. Based on this I hope you too will be able to continue with MRI monitoring and the lesion will not cause any problem for you. Good luck!
I am just about to embark on treatment for Hep C. I am at a stage 4 liver fibrosis cirrhosis which mean the worst scarring there is. I haven't had any Drs say I csn have lazer to cure the scarring and I haven't had any Drs say I need a transplant yet, but then there not very communicative with us here in BC. They won't even test the viral load until week 12 of completed Harvoni as the BC gov won't pay for it. They can't tell me what it would cost if I offer to pay for it myself either. So it seems the systems are far from perfect in every country. I think if you only have one scar and you just started to have elevated enzyme levels you don't have much to worry about as far as your liver functioning. Huge organ can take quite a beating. I have had this virus ravaging mine for 35 years. Still walking around. Liver is only organ in body that can grow itself back from just a piece of it, if there is no longer the virus attacking it. So I have been told. So good luck in your journey and if your enzymes are slightly elevated it just means it's starting to be affecteD but has a long way to go yet.
Thanks for the positive and encouraging comments. I will be very happy to clear this virus, not least because in New Zealand treatment is currently not funded in the free public system. If the Viekira Pak I got through the compassionate programme does not work there are very limited other options until the generic versions become available.
The lesion mallani referred to was first picked up on MRI late 2014 ordered after my alpha fatal protein levels spiked. It could not be seen on ultra-sound scan which meant it could not be zapped via laser and a liver transplant was considered. This put stress levels at peak load as I was in the midst of a lengthy and distressing insurance battle post major earthquakes that had damaged my house and devastated my region 4 years previously.
My son and I went on an adventure to a larger centre for transplant assessments etc; eventually they decided the lesion did not warrant a transplant. As the alpha fatal protein levels went up and down it was assumed this was just part of having cirrhosis. Whew, then my only worries were living with Hep C, living in damaged house in a post disaster city and the insurance claim.
The insurance claim has now been settled (nearly 5 yrs post event) and I am in the midst of managing rebuilding my home.
In the meantime the lesion has grown (9mm to 14mm) as found on a recent MRI. I am now in line for an ultrasound scan to make sure it can be zapped in the local hospital. My alpha fatal protein levels are normal, however, I am assuming it is important that the lesion is treated as in New Zealand you don't get treatment under the free hospital system unless you really need it.
Bit of a lengthy story, I imagine most peoples stories are more complex than they appear in a few posts on a forum.
Aroha to all,
Ari
That's great news Ari! EOT+4 undetected is an excellent indication that you'll see SVR-12, even with us cirrhotics. It's been a tough 10 year battle for you but this time you will succeed and you can look forward to your liver making more improvement in time. Keep doing what your doing and keep us up to date on your progress!
Hi Ari-anna,
Looking good. Best of luck for the SVR-12.
How's your liver lesion doing? Are you having an MRI? Cheers.
Nice Numbers Ari-anna I'll cross my fingers and toes ... wishin' ya well!
Be Well,
Linux
Just seen my doctor - very happy to say that my liver stats for the first time in many a year are within normal range, and, viral load at 4 weeks post treatment is undetected!
Viral load start of treatment HCV RNA 191810 IU/ml
4 weeks into treatment - undetected
end of 24 weeks Viekira Pak plus Ribavirin - undetected
4 weeks post treatment - undetected
One more blood test to go (12 weeks post treatment)
Fingers crossed!!!!