Hep C Discussion Forum

Loopy Lisa · Guru

RE: Biopsy results

Matt Chris · Guru

Hey lisa

That's quite a great score on your biopsy. I also remember you having very good LP's results as well so depending on how you feel, waiting for the new DAA's is probably the best choice with all the side FX's of soc.

A phase three or four trial would be a good choice, would you likely would be a easy qualifier for a non-cirrhotic study. These study groups are looking for candidates just like you.

Whatever you decide we will be here for you.

matt

Loopy Lisa · Guru

Wouldn't that just be great! I'm hoping my lucky streak is going to hold up lol ;P

Zlikster · Guru

you seem to have a good doc

hopefully if you start with SoC, u might even go for 4months instead if you achieve rapid viral response (UND @ 4w). Which will meand 4months of therapy+6months of (Riba) recovery...in 10months good for IVF

i am not having that much tough time, first 3 months my body (read Leukocytes) was doing ok, then i was getting ultra limits of neutrophiles. Thing is, my pre tx level of neutrophiles was 1.9 so that was a low basline (my lab mates told me that was direct influence of hcv?) to start. Tinnitus bothers me professionlly, but i guess for majority of people it's not that big issue as sx...and all other sx from interferon are bearable...

i hope you get rid of hcv in shortest possible time

Loopy Lisa · Guru

What was most interesting was our conversation regarding insurance companies. Even if the drugs are more expensive, the Doctors can argue for the treatment based on the fact it is simply a lot less SX, better for the patient, and less time in therapy. Insurance companies here can't really deny the new drugs even if they cost more which I thought was fantastic. biggrin

Here the cut off for I.V.F with insurance is the end of your 41st year, for me it would be bad if either therapy failed as the 6 months UND after is also a long time (although understandable). Then chances of conception are so low it is better to buy a puppy lol.

Don't get me wrong, my doctor is actually very pro the new drugs, but it is my ultimate decision for what is best in my situation. I do have a better chance with older meds currently. Saying that I am aware that Sofosbuvir does have best result on treatment niave and I would acheive SVR. It is all a game of chance isn't it. We didn't really discuss what would happen if treatment failed, because she actually doesn't expect me too.

Well the thing is we can never be sure what gets here first, she said that because it is in the publics interest, these new drugs may become fast tracked because the need is high (non-responders, people that can't take current meds, better for people with less sx), on the other hand, they may want more conclusive data and it can be delayed. She does feel they will be here 2014/15. For me 2015 is far too late, also end of 2014 because again the 6 month wait. But overall for the condition of my body after treatment, the new drugs will be less recovery time in general.

If it wasn't for I.V.F she would suggest waiting, but understanding my future plans, March is the cut off date really for waiting. In all honesty, she also said I am possibly one of those people that could have the virus my whole life and the virus just lives in harmony with my body. I don't have to test ALTS until my next appointment which is a long time and very nice to relax without the worry.

For treatment overall, she is confident I will clear the virus as it cannot hide in any areas as I have no damage. I am healthy, and because most G3s clear in her experience when damage is not present that there is no need to test for the IL28B genotype in 2s and 3s.

I think by October, we will know more what is happening with the European Commission. I think also what happens with the FDA will be a good indicator of what to expect.

I am really sorry you are having a tough time on therapy, sees so unfair, it seems that you have it a lot worse than some people. The new drugs may be available as well in Bosnia in the near future if they are same price as current meds. It would be criminal to have to pay for treatment that other people can access, especially as this is a lot of money on Bosnia! Hopefully the drugs companies will allow a compassion program for any non- responders in other lands. Saying that, I hope you have won this one, and kicked that disease in the butt! I'm glad that science is addressing our problems and finding cures for us with less sx. I suspect treating sx with old treatments boost the cost up in the long run and that the new DDAs will be cheaper overall with a lot less adverse effects. I am in limbo, but I think watching til October what is the FDA results, will give clarify to my situation a lot more. I am less afraid of interferlon than the prospect of losing the chance of becoming a mom. :P x

Zlikster · Guru

A0 F0! can't be better than that congrats, i wish it stays like that forever!

what are the options you are considering with your doctor? Try new therapy first if available (i guess some DAA+riba combo) with less sx, but with less chance for SVR and in case you fail opt in for old SoC interferon+riba therapy (but then with less chance than naive or same chance?) or opt in for SoC tx straight away then in case you fail opt in for DAAs combo? I am not sure how it goes with treatment experienced...is it advisable after you go with DAA+riba or SoC first if you have a chance. I heard in neighbouring country (Croatia) they are giving triple therapy (Incivek as DAA) only to treatment experienced (naives not allowed), but thats prolly cause health insurance is saving some money

me personally, i would weight it out...how much there is difference in achieving SVR and will you be able in case of relapse opt in fro another therapy with same chance? But your situation is different then mine, if i understood well, time frame is important. how much you can afford to wait cause you plan to do IVF treatment?

i was F0-F1, A1 according to math blood algo (FibroTest) and 5kPa (F0-F1 with Fibroscan) and VL of 25k UI/ml...i was advised by many docs and friends. Some where like "low viral load, fibrosis low, u got more time, just diet" (most of GPs and one hepa), some where "go for SoC straight away" (lab mates, my present hepa), then again met people who refused SoC and still wait for interferon free therapy (some older folks, mom and uncle from two mates). After few months of diagnostics and thingking (didn't take me too long i guess) i've decided to go for SoC (insurance covered!) and if i fail save some money for new meds. Obviously save or/and get bank loan and buy em in USA, since they won't be available here for a long time to come. In meantime live healthy life as much as i can....4 months in of SoC tx i can say from this perspective, if i were offered new DAA meds (insurance covered) with lets say 60% chance of SVR for GT3 or SoC tx with 80% for GT3 , i would go for SoC (20% increase if worth in my opinion of interferon sx). If i had to buy new DAA meds, but with higher chance of SVR (lets say over 95%) and less sx, i would get a bank loan and go for it without a question, there is no price on cure and health

I still ain't sure about long term sx from this period of oversaturating my body with interferon alpha-2b (well and Riba i guess) and could have i afforded to wait with healthy life until fibrosis got stronger? Back then when i was doing diagnostics i checked with my present hepa regarding conditions for Soc. I saw there was a proclamation in neighbouring Croatia as state health insurance policy that people with <F2 and VL <300k can't get on (insurance covered) SoC. Here is similar policy, but strangely enough there are some priority lists, veterans and younger people (<40) have priority no matter low fibrosis. I even pulled it out without biopsy. My biggest fear is post tx life with strong(er) tinnitus (most of cases hard to "cure" but not life threatening) directly caused by interferon.

i don't have any regret in trying this therapy yet, hoping for the best.

If you have a good hepa doc (a godess you say hehe), she will know definetly whats best for you, espec cause of your case for IVF treatment. In any case you will get rid of that liver occupier on way or another, since you are determined and ready for a fight

best

Loopy Lisa · Guru

Hi Jill, I am more swaying towards this year as from October I am free to treat. My doctor would give new treatments no problem, but she did mention that although it is less sx, it is also less SVR. I'm not sure how the drug treatment statistic will translate in the real clinical world, as the sample population was small. I would love to have my life back again, damage or no damage! Thanks for your thoughts! :*

Loopy Lisa · Guru

Thanks Angie, it means there will be no problem for the I.VF drug treatment. Now I just have to hope that Riberviren doesn't do any damage, that would really suck! Hope you're doing ok! x

AngieV123 · Senior Member

That is amazing news! Glad that your liver checked out ok.

Loopy Lisa · Guru

Hi Mallini,

Apparently I have no inflammation or damage, but I do have the virus. I don't have a print-out to be exact on how it is written, sorry.

I am going in March to either start new drug treatment or Interferlon. This is the longest I can leave it for the sake of I.V.F as I must be 6 months UND before I am allowed to commence that treatment. I have plans until October this year, and when that is done, I may even decide to treat before to speed things up, time will tell.

My doctor will treat me straight away on the new drugs if they are available, but no one can be sure if we will have them by then. So, biting the bullet, no drugs by march next year, interferlon hello. furious

To be honest, I do get fatigue and saying goodbye to that would be very welcome. :D

mallani · Guru

Hi Loopy,

Good to hear you're A0 or is it A0-1. It would be a brave pathologist to report an A0 on a biopsy. What is your fibrosis- this is expressed as F.? I presume you must be F0-1.

This means you can afford to wait if you want to, but for Geno 3 , new drugs may take a while. With a moderate VL of 1 million, you do have activity in your liver but no obvious damage. I would go for Rx now- most Geno 3's don't have as many problems as our buddy Zlikster. Cheers.

Loopy Lisa · Guru

I had my biopsy results back today, A0 - not even any inflammation, happy as a lark!

I wondered if anyone knew why after years of infection I don't even have inflammation? Don't get me wrong, I couldn't be happier, I have anti-bodies so my immune does fight it, but it is not attacking the virus IN my liver. I am not suprised I don't have fibroses, I have never been a drinker or done drugs, but I am suprised I don't have inflammation.

My ALTS are all normal as are all liver functions, all blood works are normal and I am very healthy. I am so healthy I don't have to go back until march next year to assess drug treatment options (new drug arrivals).

Any input would be appreciated for my very curious nature. :D

Cinnamon Girl · Guru

That is great news, Lisa! It`s between you and your doctor to make the decision but, to be honest, with your genotype I think you`d do fine if you started tx this year. I was 61 when I did my tx and had been infected for about 35 years...and still achieved UND at 4 weeks. I won`t say it was easy, but I was quite badly effected with ME/CFS at the time. I have more energy now than I`ve had in years!

Good result! smile

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