Forum Replies Created
-
AuthorPosts
-
Hi Wayne,
“have not felt this good in years actually I think I had forgot what it was like to feel good”
This observation rings a bell with me too.
Glad to hear things are on the up and up for you.
Yours
J.
Hi Bloot,
I decided to do 24 weeks (I was F3 in 2012 and probably now F4 as a result of waiting and turning 60) to be safe.
Funny now people are to’ing and fro’ing about combinations and length of treatment etc., when all there was before was ‘the wait’.
Don’t think I have ever stated my thanks to those (Dr Freeman and the Buyers Club) who made the meds possible, and all the people with funny handles on this forum who shared their lives – so now a big thanks!
Hope your treatment goes well, and gee its great to be able to have some control with what’s happening with this disease.
Yours
J.
Hi Jaz,
my VL come back at 19 about 3.5 weeks into sof/dac treatment. Other tests barring platelets were okay.
Clinic that did test seems wanting to save paper, so I only got the results over the phone.
Viral Load wise, I am told the virus retreats and in my case will likely hide among he scar tissue while on treatment anyway, so quantitive testing should only show what qualitative testing would – undetected.
While noting the importance of having a doctor seeing what’s going on blood test wise during treatment, part of me would be happy to not bother with VL (indeed any other test!) until well after the end of treatment. Not a good look health wise though, so testing we will go.
Main thing I am trying to say is that most of us here have graduated with flying colours through the University of the Great Wait, so I am okay about a few weeks or indeed a few months waiting.
But then again, it was good to hear the 4 week test results……..
Hope/know yours will be the best.
yours
J.
Hi dabara,
Just to place things in context. Although I expect my circumstances, health and finance wise, are entirely different to yours, I was advised to do 24 weeks. Some one else used a computer program type metaphor on this forum, so here is mine. In BASIC:
10 advised to do another 12 weeks of Sof/Dac on top of the 12 weeks I am doing now.
20 paid the additional cost a week ago
30 consider it a bit of an impost coming up to Xmas and worry about the money
40 note the RAV4 is due for service, rego and insurance in Jan 2016 – bit of an impost for the New Year too.
50 worry about the money
60 consider the dollar amounts are likely to be much the same.
70 consider – would I trade my family’s safety in the car for a few bucks?
80 consider would I trade my well-being (and therefore my family’s financial security and not having to put up with old grumpy bum) for a few bucks either.
90 consider that drugs are paid for and on their way; go to 100
100 happy Xmas and a SVR New Year
yours
J.
Hi Chester,
I think the same – the funny looking orange capsules in a blister pack defeated THE WAIT.
By the time PBS pays I expect what is left of my liver would have seen the light of day after it passed out through my anus!
I am too old to be thinking 6 Plus months of good health that started November 2015 is worth trading for dollars and the THE WAIT.
P.S.
Feb 2016 appears to be a leap year – good things will happen.
yours
J
Hi Joan,
I fully agree with your comments about waiting for the PBS. For me an April 2016 appointment would have meant another five months of feeling shyte and having my already damaged liver pummelled more. The battle was not about getting treated – eventually, but the WAIT.
Others in the world who don’t have the prospects of waiting, that is they live in places where the drugs will not be affordable anyway, should be assured by what happened in Australia, that if people take their own care into their own control things will change. Dr Freeman and FixHepC enabled this here.
I cannot remember anyone other that Dr Freeman et al. (along with the forum) carrying on about Hep C treatment and I guess these guys in Tasmania seem to be a catalyst for this change.
Yours
J
Hi Sharky00,
I agree, doing 24 months of soft/dac too; started 27th October and otherwise okay side effect wise.
For me it is a bit like how mental health doctors struggle with what types of medications to use – all have side effects but some are infinitely worse them others. Do you use a better antipsychotic with a lot of bad side effects with the risk of non compliance, or use a lessor one that someone will stick with??
Seem to remember that Riba stuff back in 2000 (along with interferon) and I did not take much convincing to have 24 months of/dac!!!
yours
J
Got a similar response at a liver clinic in Sydney. Went there for a fibroscan only and they offered to do the four week bloods. The clinic had reservations about generics (as I have reservations about fatigue, and having HCV scarring my liver and getting another HCC) and they mentioned their concerns a lot.
Blood tests were advised by telephone but I am still waiting for them to be sent to my G.P. though they did call him. In the big scheme of things I expect the my wanting to see the results is for me (normal liver tests after 25 years!) and will not change things.
I do though, find it disconcerting how such an obvious protocol of sharing information is so hard to do with Hep C. Reminds me of the stages I experienced (metaphor wise) having HCV:
1. First is the elephant in the room. You carry the knowledge of being HCV positive wherever you go – blood tests, telling dentists, broaching it with potential partners….
2. next the albatross – you start getting fatigued, weary of watching nothing improving, and eventually what you had convinced yourself would not happen, a HCC.
3. and now folks, the final metaphor – the opportunity to be the ostrich standing between a rock and a hard place with its head in the sand.
In regard to 3. above, “No thanks, can’t oblige”. Get treated.
Hi Sharky00,
I am Genotype 3a and started sof/dac on 27 Oct 2015, so guess I am in this minority as well. I started this treatment 25 years to the month after contracting Hep C. High viral load and failed interferon and interferon riba treatment fifteen odd years ago. HCC in there too.
Recent blood test 20th November 2015 show marked improvement, though trying to get an idea of current scarring of liver is a bit here and there – half the thing after a HCC operation is missing so to speak. I managed to find a discharge summary from 2012 where it said F3. I knew it was in this ball park and was worried that it will rapidly get worse given my 60 years of age. Hence seeking out treatment rather than waiting – funny thing is that I was not that familiar with what I was supposed to be waiting for!
Generally found my support and treatment over the years okay – but somewhat difficult to rationalise with the fascination of waiting for something. The only thing that will happen if I did this is that my liver would get worse.
I like this visiting this site following others as they are open and honest and their aspirations to be rid of Hep C resonate with me. I notice that many will talk about the reaction they get telling specialists and the like about treatment (generics) in terms of getting negative vibes. Heavens; when I went on Interferon and that other combination it was all “go for it!”. When it did not work it was me not coping.
This DAA stuff appears to work though there are side effects (indeed if they are side effects and me not having a bad day) that I notice people talk about that seem familiar to me. People appear to get support with their liver improving from this site more than the medical profession in general.
Doing what I am doing has been empowering for me and I am somewhat in awe of others and their frankness about their lives. I expect most here are living between a rock and a hard place and have made a decision to do something. I think we place too much onus on the medical profession in making decisions about our health. In the case of this virus, this manner of managing our health does not look was though it will work – blame Gilead if you like, but it is still me between the granite. I did what I had to do so to speak and appear to be along for the ride.
yours
Hello Sharky and Paul.
I am genotype 3a (from 1990 and it is active) and started sof/dac on 27th Oct 15. Both your descriptions seem familiar to me!
Had blood tests done 20 Nov – a bit early but the place where I was going to have a fibroscan kindly offered to do these for me. Results phoned through to me today VL =19 and other tests okay, although low platelets. AFP which i was worried about was normal.
Did get the usual proviso’s and warning about embarking on generics/treatment/monitoring etc., and I always take this on board and in fact appreciate that people will state this to me.
I still note from what I have been shown and read that people like me with liver scarring on the way to cirrhosis can do no better then to be rid of Hep C. Who knows what the future holds, but gee it’s been worth it if only to feel normal again for a few weeks.
Yours
Hi Nadia and Vicki,
I am new to this forum and taking some tome reading through it.
‘Nadia’s journey’ is a good read with a good outcome, and Vicki’s post a touching summation of what I expect we all go through. I hope the powers that be can see through the layers of the disease into the person within.
Helo Zhuk,
Royal Prince Alfred did good by me and I suppose a thank you to them for allowing me to live a while longer is in order here.
Being a General Practitioner with all its expectations as to up to date medical knowledge is a big ask. One told me years ago that the main requirements for being one was to be reasonably bright and have a good memory. I don’t really know all the ins and outs of prescribing generics with specialists so I won’t comment.
One thing though, when I went to my G.P. (yes life and melanoma checks goes on) and told him what I was doing, he described it as me “taking control of my health”. I agree and think it s better me do this than Gilead et al.
Yours
Hi Berinice,
I hope things went well on Friday with the scan. I am having a fibroscan soon and will find out the good/bad then.
I had a HCC and liver resection in 2012, the liver not being too bad (HCC aside). The whole enterprise of predicting who will get cancer seems a bit difficult to me anyway so I just try to keep healthy hoping not to disturb the old liver too much in the meantime. I was a lucky boy having the cancer detected and got good care following; and I may say expensive care as well.
The following time saw the issue of whether elevated AFP levels were due to the ongoing HEP C or another HCC coming on. And the this what gets me: to be safe I was on six monthly CT scans and ultrasounds between. I seem to get anxious before the scans and settled straight after even though I did not know the results until later. Seems to do ping pong with your emotions I found.
From all this, I cannot think that letting populations be a risk of following in my footsteps is saving money; my Medicare card should be changed to a Frequent Flyer card and I should get Christmas cards for various Pathology and Radiology Services that I frequent. Come on Government, I am a tax payer too and don’t sit there risking letting money be wasted this way, and maybe factor in some money value of good public health.
Hi Vroro,
your comment about donations got me thinking about the National Disability Insurance Scheme (NDIS) that has been rolled out in the Hunter region in NSW. Don’t particularly think it is that great and it is showing some cost over runs apparently. BUT, what about our government making one off grants to people seeking these medications.
This could be a way of opting out of arguments with Gilead – someone else in this forum mentioned they offered them $30,000 for drugs that cost them less than $1,000 (?) and they got knocked back becuase Gilead wanted the whole $88,000! If that is their level of sense then dealing with them is like trying to convince a three year old to share (achievable with a three year old though).
Anyway, the way I could see this is:
1. some bod is prescribed the medications legally and based on a doctor’s assessment.
2. they apply through say Medicare for a one off grant of say $2,000 that is funded to them to pay for the medications.
3. the recipient buys the medications from wherever they like – even Gilead.I can see some problems with this that would need to be managed:
a) making sure the money was used for the medications. Perhaps funding half the amount and the second half dependent on producing a receipt.
b) making sure that fake stuff is not provided
c) making sure that such a grant does not simply increase the price like happened with LPG car conversions – though this did not seem to worry Centrelink at all.
d) having one’s name on a government data base – HEP C is Notifiable anyway from memory, and if Medicare did it then the information would not be anymore then they would guess anyway assuming the medications are usually used for HEP C.I expect that Medicare can work this out, surely?
your’s
I just noticed that my input here did not follow the form requested, so here goes:
1. How Hep C has impacted on you and your family
Basically I and to a large extent my family, live a lessor life than we could. This will get worse as the disease progresses. A recurrence of HCC because of Hep C hanging over one’s head is not a good look. Finishing work and going on income support payments will be a drag for my family and the tax payer.
2. The mental torment of knowing cure exists but is unavailable
I, like others, have been waiting for years. Now find a cure is about some big company wants to play games. I suspect (and can say “I believe” as I work in mental health) that a lot of HVC positive people will be on some form of anti-depressant therapy.
3. Your views on the Buyers Club and parallel imports being facilitated by others
Does what is needed for me. So leave it alone and don’t touch. No one stuck up for me when I contracted this virus, so don’t interfere now. One thing you could do is subsidise the cheaper imports for those less able to afford them.
4. Your views about Big Pharma pricing
I remember seeing a program on SBS many years ago about multinationals having the same characteristics as sociopaths. Their allegiance is to stockholders and they go ruthlessly about making profits anyway they can and care not for others. The pity is that people who work in them are just like you and I (those running them now maybe not so I expect).
Governments that opt out of funding research opt out of their moral obligations as well and have enhanced companies like Gilead’s ambitions to make profits anyway they can. Big Pharma pricing with this disease is similar to war profiteering to me.
5. Your suggestions about what Government can do to help (without breaking the budget)
Act in the interests of the people you represent. Is not that governments are for, to moderate the capitalist system’s excesses like this? Howard faced down the gun lobby; we don’t see the school shooting stuff that happens in America.
-
AuthorPosts
