Welcome, Guest. Please login or register.
April 18, 2024, 02:22:35 am

Login with username, password and session length


Members
  • Total Members: 6307
  • Latest: golfer
Stats
  • Total Posts: 55125
  • Total Topics: 4851
  • Online Today: 48
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 23
Total: 23

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Does harvoni link to cancer??  (Read 21865 times)

0 Members and 1 Guest are viewing this topic.

Offline strangerbynight

  • Member
  • Posts: 111
Does harvoni link to cancer??
« on: August 07, 2017, 12:02:06 am »
I read a bunch of story of people has their love one has cancer and die after harvoni treatment, is this real ? Any bad story about harvoni that you can share? Thanks

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #1 on: August 07, 2017, 02:59:50 am »
There were a couple of studies that showed the possibility but the link has since been disproven. The people who did develop HCC post treatment had previously been treated for liver cancer. These were not new cases of liver cancer rather re-occurrence of liver cancer for the most part and anyway as I said there has not been a definitive link found.

In my case that is a large risk for me with having liver cirrhosis for 7 years before I treated and now being over 2 years post treatment so far so good no cancer and from what I understand my risk of HCC is greatly reduced from what it would be had I not cured my hep c.

Also only those with F4 cirrhosis are at risk of HCC so if you are not F4 for you it is not an issue.

Just to add those with cirrhosis are at risk for HCC so those who had cirrhosis and were cured of hep c but developed HCC it is believed they would have developed liver cancer whether or not they had treated. This is why it is so very important to treat people before they develop serious liver damage.
« Last Edit: August 07, 2017, 03:04:39 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #2 on: August 07, 2017, 04:26:27 am »
Hi Lynn,

My current GI, who shares an office with 3 other GI's, has now requested all of their cirrhotic/F4 patients have Ultras every 3 mos rather than 6 mos bc of the "increase" their office has seen on new hcc occurence post 12 mos viral eradication on all DAA's. Not just Harvoni.
He used the word "worrisome" several times. Further, and troubling, his office received major push back for new prescriptions/approvals since the increase of hcc cases this office has experienced.
I asked would these hcc patients be at same risk without tx. exact words, "Nobody knows yet." 
Also mentioned his office has seen an unusual increase in colon cancer patients that were F4.

He went short on a direct connection or conspiracy theory. He is clearly concerned and did say "Still too soon. NOBODY has certainty on cause's or links yet and could takes years bc the amounts of $ involved."
Raised brows and suggested I remain vigilant on follow up.
That seems like safe, sage advise from a GI in the Hep C trenches who seems to not be in the pockets of big Pharma.

Since there is no concrete, 100% conclusive smoking gun yet on either side of DAA/cancer connection, or how the F4 +age +liver condition at time of tx, and the immune system responds to cancer cells after tx,  I remain optimistic we are in the clear.

But no way I (or anyone I suppose)  can be 100% certain of either side until the professionals say "100% No Links" or..


Best to everyone!

Greg

 
« Last Edit: August 07, 2017, 04:34:07 am by I fightis thetitis »
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #3 on: August 07, 2017, 12:32:21 pm »
I am seeing my specialist today as it works out. I will run this by her. She is one of the experts from University of Washigton so will see what she has to say. So far I have been on the 6 month blood work including AFP and abdominal ultrasound regimen plus annual upper EGD due to previous esophageal varicies.

Personally I don't subscribe to conspiracy theories. If anything comes later about these meds it would be that they were new and no long range data could possibly have been available.

There was a desperate need for these meds for patients like myself and thanks to the fast tracking done for HIV medicines the FDA now has processes to allow for fast approvals for desperately needed medicines. Otherwise I might have died waiting for these new medicines.

Speaking for myself, without Harvoni I might not even have been here now. I took meds in clinical trials before the new DAA's were approved. Basically, I was dying slowly from hep c induced cirrhosis so for me it was worth any risk to be cured.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #4 on: August 07, 2017, 04:00:31 pm »
Right.. I think most of us feel that way and like you, this was a no brainer to treat, especially considering the alternatives and condition of our livers at time of tx.
But the question still remains.
Thank goodness my GI doesn't believe in conspiracy theories.

It appears we are years away from exact science. The studies, reports and concerns that even when understanding the evidence could be suppressed. Who really knows?

In the 40's and 50's Big Tobacco used to pay Dr's to promote adds that cigarettes were not harmful. Some even suggesting they reduce stress.

The situation remains, nobody is confirming or denying a cancer/daa link. And, they prob shouldn't until the future science and studies are in. Best Dr. advice I heard was to be vigilant.. too early in the process.

Good luck with your check up.. Positive thoughts are coming your way!

Best always,

Greg
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Does harvoni link to cancer??
« Reply #5 on: August 07, 2017, 05:03:43 pm »
The one consideration is that as the DAA removes the virus the liver will heal faster. Because the liver is then creating new cells at a higher than normal replacement rate instead of having the cells become infect with HCV, this rapid creation of new cells might expose more who are prone to HCC.

HCC like any cancer is a cell gone genetically wonky. All the DAAs are tested to see if they do genetic damage to the dna, to date none that are approved for use have been shown to create genetic damage to cells.

So yes the use of a DAA might more rapidly expose more who are prone to developing HCC, but the drugs themselves are not creating the genetic damage that causes HCC.

There is also a global increase in the frequency of HCC and other cancers. As we discover how more and more of the industrial chemicals that we use to create plastics and even synthetic cloth are being implicated in causation of genetic damage. One must also not forget that we are also amongst the "lead" generations where the high exposure to lead from auto exhaust was doing all sorts of nasty things to our physiology. Hell, I remember thinking nothing of breathing in the DDT sprayed willy nilly in the ditches to kill mosquitoes. Who knows how many of us have had exposures to chemicals that do predispose us to a spate cancers?

 

 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #6 on: August 07, 2017, 05:50:15 pm »
Saw my doctor. She was much more upbeat about my prognosis than my NP was last February.

She said the initial reports were flawed based on very little data. That the studies were about people who at 2 weeks on treatment were developing HCC her feeling is that likely the beginnings of HCC were already there before treatment had started.

But in any event she feels I will be ok going forwards. She will continue to monitor me per the AASLD protocol with blood testing and ultrasound every 6 months. Also she is scaling back my need for EGD per the protocols instead on once a year I go to once every 3 years.

Best to all
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #7 on: August 07, 2017, 05:58:53 pm »
I lean as you do that there is no direct link. Perhaps thats my optimistic side.

However, a bit more cautious.
When my GI recommended 3 month imaging rather then 6 mos bc some of his F4's increased in cancer (hcc and colon) at a higher rate 12mos post hcv eradication then pre daa tx, I tend to be more dismissive on any speculation on both sides.
bc that's all it is and all we have... even though it's very well articulated and thoughtful speculation. 
Scientific certainty just does not exist yet and it seems more appropriate to suggest "doubtful connection" and hopefully we will know real soon what the odds are for F4's to treat vs not treat.
My instincts tell me not in my lifetime so I do my best and forget the rest.

G
 
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #8 on: August 07, 2017, 06:01:09 pm »
Great news Lynn!
Keep up the great work you do!
G
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #9 on: August 07, 2017, 06:04:18 pm »
One thought is he wants to avoid law suits in the future by doing extra testing that is more than the AASLD recommends just in case someone want to sue saying he did not do due diligence to find any cancer early. We do live in a very litigious society especially when it comes to medical practice.

Or basically said another way he wants to CYA cover his a** just in case
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline dragonslayer

  • Member
  • Posts: 873
Re: Does harvoni link to cancer??
« Reply #10 on: August 07, 2017, 06:50:04 pm »
Lynn, so happy to hear about your good news from your doctor today!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #11 on: August 07, 2017, 08:50:33 pm »
Yes perhaps.. And another thought is, it's exactly what he is suggesting without prejudice.
He has an increase in # of new cancer cases and wants earlier and better screening.
I don't pick up whistle blower's syndrome from him either which is good.

They always seem to have a full waiting room so I know they see a large hub of patients

I get the sincere sense this just got real for some of their patients and he cares and wants to protect them best he can. Concerns seems legit.
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #12 on: August 07, 2017, 09:38:56 pm »
I am sure he likely cares very much about his patients hopefully that is why doctors choose medicine as their life's work.

Maybe partly to keep himself safe in the event things go sideways with future developments and I am sure he also wants to provide the best care to his patients.

Can't be too careful these days when dealing with people, their feelings, perceptions and their health.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #13 on: August 07, 2017, 09:44:25 pm »
Lynn, so happy to hear about your good news from your doctor today!

Thanks Paul much better than my NP said back in Feb that she felt eventually I will decompensate even though I am now cured.

My doctor said as long as no HCC which the odds of that are greatly reduced now that at worst I should at least stay where I am and might improve with time. She did say so far hasn't seen any patients really improve yet but she mostly only sees patients with advanced cirrhosis.

So feeling better about life :)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline strangerbynight

  • Member
  • Posts: 111
Re: Does harvoni link to cancer??
« Reply #14 on: August 07, 2017, 11:00:41 pm »
The one consideration is that as the DAA removes the virus the liver will heal faster. Because the liver is then creating new cells at a higher than normal replacement rate instead of having the cells become infect with HCV, this rapid creation of new cells might expose more who are prone to HCC.


Very interesting, do you have any data or documentation to back this or is this just a theory? I am hoping this is just a theory, so will this apply to all stages of liver damage?

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #15 on: August 08, 2017, 12:27:24 am »
Personally I am thinking the removal of the virus prevents further injury and allows the liver to heal.

Why would the liver begin to replace cells at anything other than its normal replacement rate what would drive this acceleration? Wouldn't the liver and for that matter all body systems continue to replace dead cells as normal at the same rate as always.

Not seeing a reason for an acceleration of cell replacement simply because a chronic daily injury has stopped.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Does harvoni link to cancer??
« Reply #16 on: August 08, 2017, 12:45:28 am »
Very interesting, do you have any data or documentation to back this or is this just a theory? I am hoping this is just a theory, so will this apply to all stages of liver damage?
Just speculation, but one thing that is known is that liver damage from any source increases the risks of HCC. When the liver is damaged it creates hormonal signals that work to increase the rate of cell regeneration. Also some steroids and other man made compounds very similar in chemical structure to steroids and are known to increase the risk liver cancer. This summation is more clear http://www.liver.ca/liver-disease/types/liver-cancer.aspx
It delves into all the aspects of the problem and the fact that accelerated regeneration while healing might play a role.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Does harvoni link to cancer??
« Reply #17 on: August 08, 2017, 12:53:34 am »
Personally I am thinking the removal of the virus prevents further injury and allows the liver to heal.

Why would the liver begin to replace cells at anything other than its normal replacement rate what would drive this acceleration? Wouldn't the liver and for that matter all body systems continue to replace dead cells as normal at the same rate as always.

Not seeing a reason for an acceleration of cell replacement simply because a chronic daily injury has stopped.
Accelerated regeneration of the liver might very well be the reason why some us experienced the "Harvoni high". I experienced a surge in appetite, a sudden boost in my energy and an overall superman effect like I was taking steroids. So yes for some of us DAA treatment and a sudden removal of dead liver cells might very well have temporarily accelerated the regeneration of our livers. Too bad it was not permanent because the OMS has set back in and all I can think about is "when the heck I can get out of town and go fishing" instead of going ape and doing all the things on my wifes "to do" lists!  :o
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #18 on: August 08, 2017, 01:07:16 am »
I personally just assumed the harvoni high was a pleasant side effect of the medicine itself that it has a slight CNS stimulant somewhat akin to drinking coffee.

As for liver regeneration my prior to treatment fibroscan was 27 and 1 year post it was 33 so no improvement there.
« Last Edit: August 08, 2017, 01:09:02 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline dragonslayer

  • Member
  • Posts: 873
Re: Does harvoni link to cancer??
« Reply #19 on: August 08, 2017, 10:42:19 am »
I was robbed!  I never got my Harvoni High.  Never experienced that.

>>As for liver regeneration my prior to treatment fibroscan was 27 and 1 year post it was 33 so no improvement there.<<

Lynn, same machine, same facility, same operator?
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Does harvoni link to cancer??
« Reply #20 on: August 08, 2017, 07:35:13 pm »
Lynn, same machine, same facility, same operator?

Same wand? (There are at least two wands available to the operator.)
Same settings? (The operator has leeway on at least one setting.)
Same weight? (I've read that extra pounds can affect accuracy.)

I'm to have a fourth fibroscan in February. Have you had only the two?
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #21 on: August 08, 2017, 11:33:44 pm »
Same operator, same machine, same weight, same time of day. One year after treatment ended so March 2016 was the second test.

From what my doctor and I discussed the numeric difference is not statistically significant. Basically 27 and 33 mean nothing different a 6 point difference is essentially meaning unchanged.

Yes only had the first one in case my insurance wanted something more recent than my at the time 6 years old biopsy that said cirrhosis. We did one just after I relapsed after treating with Sovaldi and Olysio. And then one at one year post.

Don't see much point in repeating anytime soon. I am more interested to see what my platelet count does over time. Before treatment my platelet count was about 80 to 90 range. Now it is about 110 waiting to see my most recent labs drawn yesterday.

Just to add yes only two Fibroscan but 4 liver biopsies F1 1993, F2 1998, F3 2003 and F4 2008
« Last Edit: August 09, 2017, 12:19:14 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Does harvoni link to cancer??
« Reply #22 on: August 09, 2017, 11:44:10 pm »
Saw my doctor. She was much more upbeat about my prognosis than my NP was last February.

Congrats on the good news, Lynn!
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Dakotasmami

  • Member
  • Posts: 3
Re: Does harvoni link to cancer??
« Reply #23 on: September 01, 2017, 05:37:05 pm »
Harvoni killed my husband... For 22+ years he was non-symptomatic... Took 8 weeks of Harvoni,  told he was cured...a year later he was Dead...An aggressive form of Inoperable untreatable liver cancer... Sorry... No prior cancer... Yearly ultrasounds and biannual blood work. Other than Hep C he was in excellent health condition.... I pray for anybody who has or will take that poison.

Offline strangerbynight

  • Member
  • Posts: 111
Re: Does harvoni link to cancer??
« Reply #24 on: September 01, 2017, 05:50:06 pm »
Harvoni killed my husband... For 22+ years he was non-symptomatic... Took 8 weeks of Harvoni,  told he was cured...a year later he was Dead...An aggressive form of Inoperable untreatable liver cancer... Sorry... No prior cancer... Yearly ultrasounds and biannual blood work. Other than Hep C he was in excellent health condition.... I pray for anybody who has or will take that poison.
22 years he must have F4?

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Does harvoni link to cancer??
« Reply #25 on: September 01, 2017, 07:43:23 pm »
22 years he must have F4?
strangerbynight, probably not, or he would have been prescribed 12 weeks of Harvoni. I believe Dakotasmami when she says her husband was non-symptomatic, and I assume he would have had two ultrasounds per year if he had cirrhosis.

Dakotasmami, so sorry you have lost your husband and the father of your child! Harvoni is far from the only medicine to be a poison to some and a lifesaver to many others -- if only doctors and patients could know ahead of time what effect a particular medicine will have on each individual.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #26 on: September 01, 2017, 08:27:42 pm »
Hi Dakotasmami

My condolences for your loss.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Does harvoni link to cancer??
« Reply #27 on: September 02, 2017, 03:37:30 am »
Lynn, your specialist's advice mirrors mine: be aware, don't be alarmed, keep to the scheduled checkups (every 6 months for me) and keep on the sunny side of the dirt.

I'm now nearly 2 years post treatment. I'm not really better than I was when I finished, but not really worse either.

I am however, a whole heap better than BEFORE I started treatment. It's like comparing night and day. My health improved rapidly and has remained stable.


Dakotasmami, I'm sorry for your loss. I don't believe harvoni is a poison however.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #28 on: September 02, 2017, 05:45:33 am »
I am however, a whole heap better than BEFORE I started treatment. It's like comparing night and day. My health improved rapidly and has remained stable.

Dakotasmami, I'm sorry for your loss. I don't believe harvoni is a poison however.
Dear Dakotasmami,
So sorry for your loss. This is heartbreaking to hear another story like this.
Late 2016 my GI, here in SO Cal, made me aware of an increase with some of his cirrhotic patients who were diagnosed with an aggressive form of hcc and colon cancer post DAA tx.   
Since, I began an extensive search through many blogs, threads, facebook ect. I discovered a significant amount of people both in, or close to your situation. I began to log them and your story makes 22 so far.
I echo Philadelphia, in that I too believe Harvoni is NOT poison.
However, there appears to be an unresolved issue for certain people within a Fibrosis range, with how their immune systems respond to cancer cells post rapid hcv viral eradication.
Of course there is no certainty yet, but I'm positive in that we will understand soon why this is happening. Then hopefully some smart folks will find ways to treat those who may be at a higher risk of developing hcc post daa tx. I suspect none of this helps you, hopefully knowing you are not alone and some Dr's are aware and active brings a little hope.
 
Hi Philly,

Congratulations on your anniversary. Awesome! I am 16 mos Eot and 20 mos Virus free. I love your attitude and thank you for positive vibes. Here's to all of us staying on the sunnyside of the dirt!

Best to everyone,

Greg in Cali
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Dakotasmami

  • Member
  • Posts: 3
Re: Does harvoni link to cancer??
« Reply #29 on: September 02, 2017, 08:34:48 pm »
22 years he must have F4?

I will have to check his medical records as the term "F#" has not been mentioned.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #30 on: September 02, 2017, 08:42:28 pm »
Was her ever advised he has liver cirrhosis? F4 would be a fibrosis score with F1 being minimal damage and F4 being cirrhosis.

Did he have either liver biopsies or other testing like Fibrosure a blood test which estimates "F" score or Fibroscan a test similar to an ultrasound with a thumping to estimate liver stiffness this can also provide an estimate of fibrosis levels.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Dakotasmami

  • Member
  • Posts: 3
Re: Does harvoni link to cancer??
« Reply #31 on: September 02, 2017, 08:50:56 pm »
Thank you for your sympathy...there was never a discussion on Fibrosis....my husband had Pegasus and interferon treatment in the 90s and while his viral lode lowered to almost zero it didn't cure him. He had absolutely NO symptoms of Hep C...we found out due to a life insurance blood test after my son was born...my husband, while continuously monitored by our doctor who is a specialist in the field of Hep C, never felt bad in all the years we were together...he didn't even have side effects from Harvoni...but after Harvoni he's dead....I'm sorry we ever agreed for him to take that drug...he'd still be alive.

QUESTION: Was her ever advised he has liver cirrhosis? F4 would be a fibrosis score with F1 being minimal damage and F4 being cirrhosis.

Did he have either liver biopsies or other testing like Fibrosure a blood test which estimates "F" score or Fibroscan a test similar to an ultrasound with a thumping to estimate liver stiffness this can also provide an estimate of fibrosis levels.

ANSWER: Yes he had cirrhosis. I'd have to check his blood work for Fibrosure. I'd have to check to see if he had a Fibroscan as it doesn't sound familiar but my husband wasn't one to really discuss the numerous ultrasounds he had. He's had liver biopsies and lymph node removal and biopsy and was found to not have cancer. Ever. Again he was otherwise healthy. Kept himself in great shape.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #32 on: September 02, 2017, 10:57:28 pm »
I also treated 3 times with interferon based treatment I was a null responder my viral load did not decrease at all while on treatment. My first was about 1995 interferon monotherapy 3 shots a week of interferon with no other medicine. Later I treated with interferon and ribavirin for 6 months and later interferon and ribavirin with a clinical trial medicine again for 6 months also with no response.

I was diagnosed on my 4th liver biopsy back in Jan 2008 with liver cirrhosis. When Sovaldi and Olysio were approved in late 2013 I treated in spring 2014 with Sovaldi and Olysio for 12 weeks unfortunately I was found to have relapsed 12 weeks after treatment ended. In Nov 2014 I treated again with Harvoni for 24 weeks and ribavirin for 15 weeks.

I have been having abdominal ultrasounds and AFP blood testing every 6 months since I was diagnosed with cirrhosis to monitor for the possibility of developing HCC as those with cirrhosis are at greatly increased risk (about 20% every year) of developing liver cancer. Even now although I am cured I will need to be monitored every 6 months for life as because I have cirrhosis I continue to be at increased risk for HCC.

Again I am sorry for your loss but at the present time there has not been a link between Harvoni and HCC  especially as we with cirrhosis are at risk simply because we have liver cirrhosis.

I never had any symptoms of hep c. Most people don't which is why hep c is called a silent illness. The only symptoms I have ever had are those of cirrhosis. Really the only symptom I am aware of is some lower leg swelling all my other cirrhosis symptoms are found on medical testing like a low platelet count and esophageal varicies as well as gall stones that required the removal of my gall bladder
« Last Edit: September 02, 2017, 10:59:56 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #33 on: September 03, 2017, 04:59:04 am »
Hi All,

I hope this does not come off like Debbie downer bc I'm actually an optimist with a a slight twist of a hypochondriac.

It seems a more fair statement would be that those who treated w DAA's of any kind with advanced liver disease, meaning cirrhosis, both comp and decompensated, and those treated who previously had hcc and in remission, could be at a higher risk to develop a more aggressive form of HCC during or post DAA tx. 
The facts are the facts.
Not one research scientist or DR has stepped up to confirm a link or dismiss a link to the above statement.
Many, many lay people have given there opinions from both sides though.

Within some reports and regarding several easy to find incidents of cirrhotic and hcc patients in remission who experienced lesion growths, confirmed on average a 1 cm a month growth either after or toward the end of DAA tx.
Of those with this rare aggressive terminal cancer, most passed away within 3 -12 mos eot.
Debula, who was a forum member passed away around 6 mos eot.

The obvious counter question is, would these folks have passed away from the same aggressive, non treatable cancer regardless of DAA tx.?
Since no research scientist or DR's have gone on record to confirm or deny, to my understanding this means they really DON'T KNOW WHY some patients with advanced liver disease experience this.
The suspicions seem to be the usual patient age, blood labs, liver scores, ect but in all the conclusions I've read and heard from my own GI, theres no conclusive smoking gun as to why those patients.

Anyone can google the reports or follow the many threads from folks who witnessed a loved one pass away rapidly with DAA stories that raise suspicion.
Just as there are many folks with advanced liver disease who seem to have received the golden ticket and a second chance and may have passed away if not for DAA/Harvoni. I count myself in the latter.

It seems for anyone to ignore or dismiss all possible negative outcomes before conclusive research confirms or denies a link seems hopeful at best and premature and perhaps in denial at worst.
Trust but verify seems to be the middle that science is currently stuck in.

Best health to all!

Greg



   
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #34 on: September 03, 2017, 12:25:09 pm »
Hi Greg

I discussed this issue with my hepatologist as well. Her belief is the studies that seemed to suggest a link were somewhat flawed and that later more vigorous studies suggest the link does not exist and that those who developed HCC would likely have done so without having had treatment.

Yes I do agree the science is still out on this issue but I lean towards the new DAA's not being a factor in de novo cases of HCC and the primary precipitating cause of HCC post treatment is the patients preexisting cirrhosis.

So the big take away is people need to be treated before they develop advanced liver disease and cirrhosis thus eliminating the risk of developing HCC due to cirrhosis. A compelling argument against the practices of some insurers who won't provide treatment unless the patient has advanced to F3 or F4 fibrosis.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #35 on: September 03, 2017, 02:17:47 pm »
Hi Lynn,

On the topic, I kinda disagree on the big take away. Which to me is every qualified Dr. from all studies, including any local GI who stays up to date, agree that the form of cancer post viral eradication is a more aggressive type then pre DAA era. That is a fact not in dispute and the elephant that keeps the suspense in that community.
That fact is currently one trail that was being followed and hopefully they will have new positive info presented at the meetings in two mos.

Treating hep C early before cirrhosis occurs, lifestyle changes info ect has been around pre these reports. That info is not new, however perhaps the best advice I've heard or one can give.

Also, the more vigorous studies with larger patient counts occurred earlier.
The later reports were from smaller population groups. That is easy to check.

I love and appreciate your optimism. Thank you!

Best always,

G

 


M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #36 on: September 03, 2017, 11:22:40 pm »
Best to you as well Greg :)

I'm always hoping for the best for all and especially for those of us who have cirrhosis.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Does harvoni link to cancer??
« Reply #37 on: September 04, 2017, 02:52:24 pm »
I think the perceived link between HCC risk and DAA use is still very much under investigation. Most of the evidence points to no increased risk, but there is some equivocal data that keeps the discussion alive. Here is a recent study: http://www.mdmag.com/medical-news/liver-cancer-risks-not-affected-by-hepatitis-c-eliminating-therapy

When you are a patient or a loved one, and you go through treatment and then get liver cancer, it's hard not to believe that there is a connection. However, we forget that it is cirrhosis that puts us at risk for liver cancer, regardless of how we got there. If the hep C is cured but the cirrhosis is not, then you still have a dire problem, one that needs very active monitoring.

I think the lesson here is that we aren't educating people sufficiently. Doctors, patients, and advocates need to wave a huge flag and say, "People - if you have hep C and cirrhosis, you are still at risk for liver cancer and liver cancer kills quickly. DAAs will not protect you from this. Get treated early so you don't get cirrhosis. But if you already have cirrhosis, be sure to follow up actively."
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline redrock

  • Newbie
  • Posts: 1
Re: Does harvoni link to cancer??
« Reply #38 on: November 29, 2017, 07:26:53 pm »
I can only speak for my self but I was on a 8 week regime of Harvoni and was declared cleared of Hep C.
I had a CT scan and biopsy just prior to to starting Harvoni and did not have HCC.
2 months after completing Harvoni I had abdominal pain and had a CT scan, scan revealed 2 tumors 6.6 cm and 2.8 cm..
I don't know if there is a connection but i will not accept that it wouldn't have.
I've filled out a Med Watch form on the FDA website and urge anyone else who suspects a connection to also do so.

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #39 on: November 29, 2017, 08:10:17 pm »
Hi Redrock,

I am so sorry to hear this.
From your biopsy what was your F score? Do you have cirrhosis?
The good news is there are advances in hcc tx. I hope you are well taken care of!!

There appears to be a group of patients, mostly with advanced liver disease that "MAY" compromise their immune system with the rapid viral eradication the DAA's offer which somehow allows certain rogue cancerous T cells to replicate rapidly.

Several initial post tx studies suggest those with prev liver cancer are at the highest risk.
Makes sense if the cancer cells are already there and if the immune system no longer recognizes the threat. Also understandable why new cases are on the rise if the threshold of cancer cells has been passed pre hcc diagnosis.
hcc may have already been lurking and the new environment allowed the cells to progressed rapidly.

Seems there are just as many stories of those with cirrhosis who are clear so far.

Do you have any other symptoms? There are a couple of people who were on the forums who were diagnosed with hcc while on 24 week tx.
My GI has said there is a worrisome amount of his office patients that have acquired hcc post daa tx.
This debate will continue until someone either on or off the pharma payroll comes forward with the real story.

Best of luck and PLEASE keep us updated on your situation.


M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Does harvoni link to cancer??
« Reply #40 on: November 29, 2017, 08:39:07 pm »
Hi Redrock and welcome

So sorry to hear of your HCC status hoping for the possible outcome for you.

I have the same question well, were you previously diagnose with cirrhosis and how long ago?

I had hep c for 30 years before I was diagnosed with cirrhosis in Jan 2008. I was finally cured after being infected for 37 years with 24 weeks of Harvoni/15 weeks of ribavirin on my 5th treatment having treated and had no response to 3 TX with interferon based meds and one 12 week treatment with Sovaldi and Olysio.

So far I am 2.5 years post cure and have had cirrhosis for 10 yeas so obviously for me my biggest fear is HCC but so far my 6 month monitoring blood work including AFP and abdominal ultrasounds have been clear.

Were you being followed every 6 months post treatment as well?

Again so sorry to read about your HCV best of luck to you
« Last Edit: November 29, 2017, 08:41:08 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Does harvoni link to cancer??
« Reply #41 on: November 30, 2017, 03:42:04 am »
I can only speak for my self but I was on a 8 week regime of Harvoni and was declared cleared of Hep C.
I had a CT scan and biopsy just prior to to starting Harvoni and did not have HCC.
2 months after completing Harvoni I had abdominal pain and had a CT scan, scan revealed 2 tumors 6.6 cm and 2.8 cm..
I don't know if there is a connection but i will not accept that it wouldn't have.
I've filled out a Med Watch form on the FDA website and urge anyone else who suspects a connection to also do so.
I so far have dodged the HCC bullet and was an early Harvoni recipient in Canada just one week after final regulatory approval. So far I have seen a few individuals post here with the news that they have developed post DAA SVR cure tumors. Not large numbers but still a real concern certainly for all of us.

My liver status is F4 compensated so I do have ultrasounds every 6 months.

I fully understand this means nothing to those who go on to develop HCC and my words are understandable lip service in some eyes. But I do fully understand this reaction to my effort to encourage others to not fear being treated.

What I do believe is that it is entirely possible that DAA treatment based upon the patent method of creating essentially a molecular key to deliver antivirals directly to hepatocytes in the liver might indeed adversely create unexpected effects in some people. Therefore a more broad follow up of the differences in immunity reactions in individuals treated with all DAA treatments based upon Mr Sofia's magic bullet molecule method begs very careful research. And that until the use of this specific molecule to deliver antivirals directly to hepatocytes is  unencumbered of patents it will be very hard studying exactly what it does to humans in the short term.

This is only a portion of the reasons why we need to examine more carefully the immunity reaction differences between large numbers of individuals who are treated both during and after treatment. And especially look for differences in how rapidly the antibodies for hcv either dissipate or if their levels do spike in some people. If it can be shown that the exta-hepatic effects or even lack of HCV antibodies post treatment are playing a role in causing HCC and other cancers, which is what I suspect, it opens new possibility for much more than the treatment of just HCV and HCC.

I do believe that this research alone could quite possibly unlock new very effective treatments for HCC and possibly much more that is not know about how the liver functions to regulate human immunity.

In my case the HCV was slowly but surely becoming more aggressive as I aged and was reaching a stage of cirrhosis that I did not wish to experience quite yet. I had little choice other than to bite Mr Sofia's magic bullet.

I truly hope for you that the tumors can be easily dealt with.

With a true understanding of your feelings, fears and disappointment with Harvoni DAA treatment.
Eric
« Last Edit: November 30, 2017, 03:52:35 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Does harvoni link to cancer??
« Reply #42 on: December 22, 2017, 02:22:24 am »
Great News.. The latest studies show no increase of hcc with DAA's compared to interferon therapy.
Further that treating now helps prevent.
Awesome news!

Best too all
Greg
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

 


© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.