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Knowing that I have HCV for such a long time acted as a control mechanism on me: do not drink (once in a while a small beer), eat healthy, do exercise, get rest, etc….
I am aware I need to get rid of HCV and I am sure I will, however I find strange to have such feelings fear and sadness thinking on no longer having the HCV.
Does this sound familiar to other people too?Hi Serb,
while having the virus and knowing it would stay that way, I knew my place in the world, and what the future probably held.
Finding out I had a HCC in 2012 did not particularly phase me as much as I imagined news like this without Hep C would. Not saying I shrugged he whole thing off, but my reaction was somewhat stoic if I could say that.
Now the possibility / probability of being Hep C free!
A sense of bargaining with the cancer now: “look, I have refrained from knocking myself around for a decade or two, and recently popped some pills to make the Hep virus piss off; can you consider giving me a break now too?”
Feelings in the future for me will vary wildly, I expect. Hope you find your cure both for the virus, and for any messing around with your feelings that occurs on the way through.
A specialist told me years ago that the virus would probably die with me; that is I would die from something else. The narcissist in me thinks it great that my dark passenger (thanks to Dexter series for that) will now cark it before me. Good f’ing riddance and I will chance the future.
Yours
Jeff
Hi Dr Freeman,
I am looking at the ‘Nearly one-third of patients with previous HCC recur after DAA therapy April 14, 2016’.
This article that in the middle states:
1. “A history of previous HCC was the strongest predictor of the development of a new HCC after DAA therapy. The more advanced liver disease and younger age were risk factors for HCC recurrence in the subgroup of patients with previous HCC,” Stefano Brillanti,
MD, assistant professor of medicine, University of Bologna, Italy, said during a press conference at the International Liver Congress 2016.2.This large, retrospective cohort study included consecutive patients (n = 344) without HIV who had hepatitis C-related cirrhosis of Child Pugh A or B. Patients received various DAA combinations, none of which impacted sustained virologic response or HCC occurrence. Researchers followed them for 24 weeks after therapy concluded.
It is not clear to me with regard to:
1. above – having a previous HCC, by definition seems to be a good predictor of a recurrence of HCC, and I expect regardless of being cured of HepC?
2. above – does this just reflect what is said about HCC recurrence anyway? What was reported about quality of life by participants? Does not really says on the medpage website.
This paper seems to give a double meaning – HepC over the long term causes HCC, but at the same time, getting rid of it precipitates HCC?
The rest makes sense, but does not say how long post HCC the 29 per center’s were were and what treatment they got – transplant, resection, radiation, lipidol?
Have to admit this virus stuff is all very fascinating.
Yours
Jeff
Michael-Henry-facebook wrote:I’ve had some muscle pain for sometime, after excercise / sport.
Since starting treatment with these new DAA’s, I’m experiencing more muscle aches & pains after very minimal exercise .
I’m now 8 days after EOT & the aches are still happening.
Is this common ?Hello MH,
I found that I noticed some muscle aches after EOT but this also coincided with a new found interest in the gym. Like that new energy after the first week of Sof/Dac so long ago. Also had/have this feeling in my head – like I used to get when stressed.
I am banking on this all being associated with all the exercise affecting muscles that have had not been to used for a while. Another thought is that these DAA’s, while having minimal side effects, are still somewhat heavy duty, and the body has to adapt to them and now not having them.
Currently nothing that worries me much at this time, and feelings are hard to put a finger on anyway. One observation that can be regarded as empirical evidence though, is simply counting the weights on the machines at the gym – there are more of them lately which may account for the muscle and joint stuff.
Barring someone telling me my symptoms are indicative of a heart attack, I m happy to weather it all.
Yours
Jeff
P.S.
One thing that did change through my 24 weeks treatment was my blood pressure increasing. It will be interesting when I check it again to see if it has fallen. It went from 32mg Atacand to considering reducing to 16mg, then back up so that I am on 32 mg Atacand Plus. Having said that, over some many years I had developed into a bit of a porker as well. Weight after EOT looks like it is starting to come down as well.
CJ wrote:Thank you Dr. J, but I was wondering if you think it’s OK to not have the Ribas with the Sof/Dac meds for my War Vet friend, G.T. 3a 2nd liver transplant. Had failed Ifn/Riba tx in past.
xHi CJ,
hope things go well for your friend and I think that having people that care about him like you has already made him better in his heart.
The RIBA bit on top of sof/dac is something I have an interest in and have two lines of thought.
First it may assist?
Second, I could not cope with it when used with interferon – do I want to make my life miserable on the way through this treatment?
Some of my rationale for treatment given the past HCC is that another HCC can come along for many reasons, and at least feeling better in the mean time is well worth the treatment.
I think this is al individual and something doctors get paid the money to sort out with the individual patient …..
Yours
Jeff.
Hi Joy,
while I have not conducted any great research into this type of apparent greed, I have noticed many times that with greed, it has no moral compass, and later in the piece, there appears to have been some legal wrong doing as well.
Maybe an example is that other fellow who attracted the attention of the FBI. His problems with the law apparently were not about the pills he hiked the price on, but with other make money quick (and illegal) schemes he had going as well/before.
From this I assume that having no moral compass makes you more likely to have a broken legal one as well. And having a lot of money made quick and maybe invested overseas in certain countries that have expertise in minding cash so that it is safe from robbers and thieves (and possibly Tax Offices) is a safety net when the police come knocking.
I did originally quote your posting but deleted the whole quote so that people do not assume these comments are made about anyone in particular.
Only just saying ‘maybes’ about all this, BUT what do these chaps tell their kids and family – do they actually talk about what they do, or resort to looking at the floor if someone asks?
Yours
J.
mgalbrai wrote:From the HCV News Blogspot
•Does sustained virologic response represent a cure for hepatitis C virus infection?
http://hepatitiscnewdrugs.blogspot.com/2016/04/expert-svr-does-not-equate-to-cure-in.html•13 April 2016 – WHO issuing updated guidelines for treatment of hepatitis C infection
http://hepatitiscnewdrugs.blogspot.com/2016/04/13-april-2016-who-issuing-updated.html•ILC2016 Treating patients for Hepatitis C could reduce the need for liver transplants
http://hepatitiscnewdrugs.blogspot.com/2016/04/ilc2016-treating-patients-for-hepatitis.html•Study raises questions about the risks of treating patients with late stage Hepatitis C virus
http://hepatitiscnewdrugs.blogspot.com/2016/04/study-raises-questions-about-risks-of.html•ILC2016 Sofosbuvir/velpatasvir and experimental compound GS-9857 shows promise in Hepatitis C infected patients whose previous treatment has failed
http://hepatitiscnewdrugs.blogspot.com/2016/04/ilc2016-sofosbuvirvelpatasvir-and.htmlHi Mike,
the message I seem to be getting from Ronald Koretz, MD about SVR is that Peg interferon may have done more harm than good??
Otherwise he seems to raise some good points about how this virus will do its best to survive.
Me being F3 in 2012, now probably F4, I have to rely on a common sense view that largely getting rid of the virus and therefore keeping my LFT’s etc under control gives:
1. a small chance that liver and recurrence of a HCC wise, things might get better
2. an assumption that it may slow down the above getting worse.
3. a better quality of life on the way through.The talk also seems to re-inforce the idea to get treated early before damage occurs. Another thought for me being an early non coper with Interferon is that I may have been lucky – Ronald Koretz, MD’s early part of the talk did not seem to sing its praises too well and my partner at that time comparing it to giving a dog arsenic to cure heart worms come to mind.
yours with thanks for fishing these threads out for us to read.
Jeff.
Annasnow wrote:I am now on the wait for 12 weeks hopeful SVR after sof/led finished my 12 weeks.
trust we will be clear !Hi Anna and Mike,
I expect we all will be, but a small nasty part of me would be happy if there were some of the rotten virus about to have a second go at making its life miserable.
When I saw my specialist he did not seem to indicate there were hordes of people waiting to get treated!? Makes you hope the trickle turns into a stampede some time soon. No reason for it not to, at least here in AUS right now with the PBS paying.
And I also hope people thinking that they can wait have a second think about being treated. HepC is NOT worth having is my view no matter what.
Jeff
Hi Gaj,
“On top of all those pathology indicators I feel much healthier, happier and more positive that I have for years. If there is anyone out there reading this and you hasn’t made up your mind about starting treatment, I say “go for it!”. The improved quality of life is a significant payback by itself before you even factor in achieving SVR.”
I get the results of my CT scan tomorrow, and I also had blood tests done which I will find out about as well. Will worry about VL at SVR12 time, or sooner if the old Hep C feelings come back or LFT’s go all over the place. EOT for me is 12th April.
Your last paragraph quoted above rung some chord with me.
I an eternally optimistic about a cure,
but
eternally pessimistic that a cure for me will come anyway but the hard way,
but also
ever grateful that I had a chance to to give this virus a good case of the shits for 24 weeks and have myself feel good while doing it.Yours
J.
Price wrote:Sure but it also depends on what else you’re eating.
Thanks Price,
a timely reminder for me as over the now 23 weeks of treatment my new found energy found me eating things I would know to steer clear of – and hence a suspension in weight loss. Now back on the straight and narrow food wise.
Yours
J
Hi Price,
“And since hep c is glucose dependent, a low carb diet can also help”.
I am into 5 months of Sof/Dac: at EOT, is it worth steering clear of too much sugar in my (occasional) coffee?
Just saw a post on a relapse an starting again yesterday and want to give my my body the best chance of getting rid of any stragglers that are left post treatment.
J.
8 March 2016 at 1:33 pm in reply to: Beacon Pharmaceuticals … Sof, Dac, Sof/Dac, Sof/Vel Combo #13529“Approval of sorafenib as the first targeted therapy for treatment of advanced hepatocellular carcinoma (HCC) represents a milestone in the treatment of Hepatocellular carcinoma (HCC).
Soranix is a generic version preparation of NEXAVAR containing (Sorafenib 200 mg) indicated in Hepatocellular carcinoma (HCC), Renal Cell Carcinoma(RCC) & differentiated thyroid carcinoma (DTC).”
I am mainly posting this reply as a book mark for me – in case I manage to get another HCC in the future.
What is the mechanism by which Sorafenib treats ‘advanced HCC’ if anyone knows?
yours
J.
Hi LG,
“There do seem to be a few with raised BP, some have been really high. Last check mine was up, but not dangerously, must get it checked again. It seems to me it’s the girls who seem to suffer this more or are the boys just being quiet? Maybe it’s something to do with lower body weight ?”
Mine crept up a bit following commencement of treatment and I suspect that a lot of males may be in this category??
Just needed some extra Atacand (checked interactions with DAA’s) and some monitoring a week or so later and things okay. I will know for sure when I finish the DAA’s and plan to ask to halve the Atacand and let the general practitioner see what happens. The surgery I go to is a bit old school and there is always a cuff from the gizmo that measures BP ready to jump on your arm when ever you enter the door.
It is also good to see the percentage chances of having a heart attack reduce on that online calculator they use.
Yours
J.
“Death and sickness is going to get us in the end, but with a healthier body, the path there will be a little less onerous. And that is certainly worth a lot in itself!”
Says it all for me too.
yours
J.
Hi Dointime,
I agree whole heartedly with the thrust of what you are saying.
Twenty plus years of having my liver stuffed over is not something I expect any doctor or specialist to disregard. But in my case, the automatic fallback is a previous HCC and a hawkish G.P. I have been seeing for yonks sending me back to the specialist all the time.
I think in regard to building some body of knowledge around this subject, we may be at the pointy end of doing so.
As to the future, I am just relying on my belief that competent doctors will both take into account the (hopefully) previous HCV, but at the same time not attribute any and all symptoms to it. Guess that is why they go to uni a lot to be able to do that.
Yours
J.
“BOOM!”
my ALTs have hovered in the 100’s then the 200’s for many years; then the big drop with sof/dac.
little wonder it’s hard to figure out day to day whether I feel better, not as good as I should, or I have just got older. Been under the weather that long it is taking months to get used to what feeling good feels like.
Maybe it is the suddenness of the change?
yours
J.
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