TOPIC:

I was really looking forward to today since I started treatment 6 months ago but have been advised by James to continue for another 3 months to make sure we get this thing.
Oh well looks like I have another date to look forward to now ,I hope all is going well for everyone else.

Paul

Understandable that you're disappointed in having to set a new end date. We G3s take a little longer sometimes. Hang in there.

Hey AA, I totally hear you! ( Currently in week 25) .
but we need to give this our best shot - hey?
Keep on keeping on, You have support here.
LG

Hi AA,
I am just about to start my last month of 6 months sof/dac and was wondering whether to extend - as I am F3 with 4 varices -
am sure youll have a a great chance of clearing with tht extra time
hope all goes well

from Bob in ireland.

Thanks for the support folks I've carried this solo for 2 decades now and it's good to have somewhere to actually say something about it but after the other 2 rounds of the devils treatment and failure now this extra treatment is worrying me ,started the next 3 months tonight and look to September end date .
Hope all are well and getting well

Would you mind sharing why you are having your treatment extended?

It says in your signature that you were UND at week 12 and if you have just finished 6 months of treatment then it seems that you will have been UND for at least 12 weeks by now...so why the need to extend?

Forgive me if I've got the maths wrong. The reason I ask is that I have 8 weeks of sof/dac left and I am considering not taking them as I have been UND for 4 weeks now. The background being that I initially got 8 weeks of Harvoni via the NHS but my VL was still 269 at week 4 and it looked like I was responding slowly so I made arrangements to extend the treatment with generics. But by week 8 I was UND (not just below the cut-off but no RNA detected); but by that point my contingency plan (i.e. treatment extended with 12 weeks of sof/dac) had already started. I didn't want to wait until and see what my VL was at the end of the Harvoni treatment because if I was still detectable at that point there would have been a gap between the two treatments and the gains made from the 1st round would have been lost.

I'm going to book another appointment with Dr F before I decide. All the evidence says that 12 weeks of treatment* is what people like me should have, and I have almost had that now between the two treatments. Whilst I really don't think there will be longterm issues with the DAAs they are new drugs so I worry a little about taking them longer than may be needed. But on the other hand, extending treatment to 24 weeks (or, more accurately, 20 weeks in my case) adds a few extra percentage points to my chances of SVR, and if I did continue it wouldn't be a problem as my side effects are minimal.

Patrick

*In fact, this is what I should have got from the NHS but somewhere between financial reasons and my last biopsy showing F0 eight weeks was all I got offered. But I had a fibroscan done during the treatment which came back at 9.1 (F2) so it seems there must have been progression in the 2 years since I had the biopsy; either that or the biopsy sampled a non-fibrosed part of my liver.

I personally would see out the full cycle and complete the 6 months or whatever was recommended by the Docs but we are all different.
I started my first sof/dac in Jan 2015 and I was und at 4 or 6 weeks but after completing in July it was back again after 3/4 weeks but pricks never told me till Sep 16th.

Restarted with my own supply in Jan 2016 after being told I wasn't able to receive anymore and that by Xmas 2015 I would be in Palliative care and dead by March 2016. But I am still going and if it wasn't for the Huge Hernias in my guts I would be able to work again. I have been und for months and even off the oral chemo but I may take these miracle drugs till I die. I am now taking a third drug to see if it can stop it coming back and in 9 weeks I will stop for 4 weeks to get tested again but if it comes back I will take it forever.

Each case is different and we all have to make decisions for our own health and evaluate the advice we get from our Medical professionals. In my case this year had I listened to them I wouldn't be here as I was told NOT to take the generic course but I know it has saved my life.

Hep C is a shocking disease and is extremely hard to eliminate 100% good luck to us all and Thank you to Doc Freeman and others who have shared their experience and knowledge for our benefit. It is people like Bill Gates who need to take the rose colored glasses off, and like mr pegetron and me gilliad have a red hot poker shoved up their asses.

Each case is different and we all have to make decisions for our own health and evaluate the advice we get from our Medical professionals. In my case this year had I listened to them I wouldn't be here as I was told NOT to take the generic course but I know it has saved my life.

Dear Woobia,

I have a friend who is in a similar position, I am trying to help, and I will try to get them to listen regarding this. I am hoping your post may help.. Thank-you so much and I wish you continuing health improvement.

LG

ps I believe NHS England could be guilty of manslaughter. in some cases Strong accusation I know, but that's how I feel.

Thanks Woobia

I probably will take the rest of the meds. Just to be sure. I have paid for them after all and I have no sides.

LG - I have strong feelings about NHS hepatology services too. I won't go into now, as I don't want my blood pressure to rise, but in their defence I think the enemy here is the pharma companies. If they hadn't priced the DAAs at such a ridiculous price I'm sure the NHS would be keen to treat far more HCV patients. But big pharma is anonymous, whilst doctors are people (working in imperfect systems) so it's easier to direct our anger at them. It's obviously not the whole story because, as alluded to, I could recount endless issues with the NHS too, culminating in a complaint I made in 2008.

Thanks RD,

It is further complicated when a patient has cancer or another condition and you have 2 departments with their budgets and consultants that are only concerned with their own field of medicine and health authority bureacracy. Waiting lists for appointments dreadful and chaotic admin with serious errors while livers worsen and cancer grows.

I should also say that I have also been extremely heartened to have encountered a few great NHS medics who are actively trying to help patients among some of the big pharma educated ones, it helps to keep the faith to know there are a few who are still in it for the right reasons, ie Patient Care.They are out there, but doing it quietly so as not to rock the boat and cause further obstacles for patients.

Back to the negative, I have, during my journey, had to encounter one of the worst, arrogant, lying hepatologist who I looked up to discover his training was funded by big pharma.

It has been a very interesting journey, to say the least ! I have learned much and I have experienced both good and bad, the bad has left me reeling with indignation, frustration and anger, the good has given me hope for other patients and direct help personally and those guys are awesome.

ps Sorry AA to rant on your post. Hope all is well with you.

Quoting Woobia 22 "I personally would see out the full cycle and complete the 6 months or whatever was recommended by the Docs but we are all different."

Me too.

The only time I went against a doctor telling me something was when I was told to wait for treatment back in October 2015. But that was the exception that proves the rule I expect. Best wishes for your treatment and a good outcome along with the rest of us.

Yours


Jeff

All good folks thanks for the reply's and support ,
James recommended I do the extra miles to make sure we get it done and he's the man in the know so that's what I'll do ,other than some rashes on my legs ,some weird trippy dreams and a bit of tiredness I feel ok and this is nothing like what I went through with the interferon treatment twice so hopefully in another 80 days it will be gone forever, I was really keen to see the finish line last week but the race has been extended so I'll just have to keep on keeping on till the next end date .
Hope all is going well for everyone else.

Hey AA,

Also having some trippy dreams, along with nightmares involving large scary animals .

Hopefully these are expelling the bogey-men of our mind

LG

We're ALL pulling for you AA, 100+%
You/we know what these meds are capable of ... right? 90-99.9% cure rates were unthinkable just a short time ago. You're right to trust them and Dr. Freeman. You got this AA

Matt

Thanks for the support guys staying positive and feeling pretty good