Hep C Discussion Forum

Pablito · Senior Member

RE: Almost at Week 8 and no blood tests ...

RAGDOLL · Senior Member

Hi Liz, So GLAD everything has worked out. You made it thru. Congrats. You did so well and never gave up. You are so strong and I think you have turned a major corner in your life. Many Blessings sent your way. Enjoy and please stay in touch . Chris

Linuxter · Guru

Hi Nightowl,

"HIV neg and HCV RNA UNDETECTED!!!!!!" ... say's it all!

WoW!! so happy for ya ... wonderful news and we thank you for sharing it with us.

Done with the meds, Yahoo! Done with the Dragon (undetected), Yahoo! Done with HIV worry, Yahoo!

You are on a roll girl! All so very nice to see ... and you have come a long way from fear (worry) itself ... kudos for overcoming all of the above, you're on your way to SVR ... Sweet!!

Linux

Cheddy · Moderator

Really great news, Liz. You have come through a lot. I hope you are doing something to celebrate. The pure joy may be enough.

Thanks so much for letting us know. This is the stuff we wait to hear.

Sydhanrahan · Guru

Yay Nightowl,

and I agree wholeheartedly with your observation that some anxiety prone people find it hard to open up to others For fear of seeming silly.

dont go chastising yourself with things you should have done in the past. We can't change the past. It was tempting to live in denial as the only meds had terrible side effects and low cure rates. And yes, I'm sure I sped my way to cirrhosis a lot quicker by being in denial and drinking heavily. That's how I coped with what has been a pretty difficult life. I'm going to cut myself some slack for that. I raised four kids with the hindrance of men, not their help, worked full time to support them and then came home to my second,most important job.

This is where I am now, paying the price for poor decisions. But I'm not going to let those bring me down, the least I can do for the rest of my life, long or short, is to respect and accept myself. It's a huge weight to put down - all those fears of guilt and inadequacy.

i am be being very presumptuous imagining you might relate to any if this and I apologise if I am.

In the meantime, thise two negatives are great news.

take care.

Syd

Tig · Admin

WOOHOO!!! That's wonderful, Liz! I'm so glad you realize now that the HIV test (in hindsight) was the right thing to do. Throw in a viral load that comes back undetected and you just doubled our joy! Congratulations! There is more good news coming, I can feel it...

nightowl · Member

Thanks so much Canuck, Alison and Wendy xxx YAY!!! smile

-- Edited by nightowl on Thursday 4th of August 2016 08:17:27 AM

wendyo · Guru

Hi Liz,

I am truly happy for you. (literally tears in eyes) Both tests came back with the desired results AND I want to point out how much you have grown during this time. You have walked through immeasurable fears and made some new friends along the way. What a blessing.

hugz,

wendy

-- Edited by wendyo on Thursday 4th of August 2016 05:14:13 AM

Observer · Guru

Yay

YAY!! that's such a good feeing. I am very happy for you! Undetected yay.

Soon you will to SVR

aren't we lucky to be experiencing miraculous science?

Alison

Canuck · Guru

Hi nightowl,

Grateful AND emotional ... I know the feeling! It IS a strange ride, isn' t it!? I am so happy for you.

Nice you have both these results today, it will carry you along - you have done such-a-good job! Feel PROUD of yourself too!

I too derive(d) much relief from this place. Enjoy your membership in the zero club (meant in the nicest way)! Good goin! biggrin C.

nightowl · Member

Hello my friends!

I'm sorry I've been a bit quiet of late, but I received news recently that my jaw surgery needs to be redone, so I've been feeling quite disappointed about that.

However, in other news ... I took my last tablet the day before yesterday! Yes my treatment has come to an end, I got off the train on Tuesday!!

Now you may recall I had to get an HIV test last week (which was at week 7 of my 8 week Harvoni course), so I decided to add an HCV RNA viral load at the same time because I was fretting a little and needed some encouragement ... well the results are in (I literally got off the phone 6 minutes ago from my doctor) ... HIV neg and HCV RNA UNDETECTED!!!!!! Now I know it's too early to celebrate, and the results that come in three months are the ones that really count .. but I'm feeling pretty greatful and somewhat emotional right now.

This has been a challenging road at times, but I feel so fortunate to have found this group. You have no idea the comfort it has given me along the way! Thank you!

Much love from me to all you brave and caring people, Liz x

Loopy Lisa · Guru

There is no right or wrong, just different perceptions.... "You cannot infer what you cannot see" - J.B Watson.

You're fine girl, everyone at least once in their lives has had neurotic thoughts that go even against their own logic. I have a niece that is studying physical chemistry and biochemistry - she wants to become a stem cell researcher. She also worries about all kinds of medical issues, and it contrasts with her scientific training. The one truth is, if anything makes any of us anxious, it is a reality to us, no question. I hope you can take a deep breath and with a calm clear mind, open the letter and sigh relief. One thing is for sure, after this journey it will change a lot in your own perception. We are a lot stronger than we all thought after taking a journey we didn't buy a ticket for. x

nightowl · Member

Thanks for the reassuring words everyone. I get some of my results back today, so will let you know. Jimmy you write in a very serene and prophetic manner that is quite comforting indeed. I suspect you are right, there will be tears ... of both relief and joy, but quite possibly a bit of sadness too ... sadness that I have allowed fear to prevent me from attending to many of these health issues for so many years. Oh well, this too is another life lesson. I guess it's all about timing, and this just seems to be the year when the fear that once crippled me is falling by the wayside and things are falling into place ... so yes, I do feel hopeful!

Linuxter, as hard as it may be to believe, it's taken me almost thirty years to summon the courage to take that HIV test. My comment was simply to say that taking the test is one thing, but collecting the results - when you have built it up to be such a big thing, over such a long period of time - can be daunting ... for me anyway. It has taken me a great deal of courage to confront my fears this year and also to share those experiences with this group. I have found the interaction I have had here with so many lovely, caring people to be tremendously rewarding and reassuring. If anything, people prone to anxiety tend to be conflict/drama avoiders and are often a bit shy about coming forward and speaking up about their worries for fear of being judged as silly. My only wish is that others with anxiety who follow in my footsteps on this forum will also feel safe and comfortable to share their fears, no matter how big or small.

With much love and gratitude to everyone x

-- Edited by nightowl on Friday 29th of July 2016 12:54:55 AM

-- Edited by nightowl on Friday 29th of July 2016 04:02:58 AM

-- Edited by nightowl on Friday 29th of July 2016 04:06:48 AM

Linuxter · Guru

Hi Jimmy,

I'm seeing no mushy side just some very good, caring and Solid advice.

---

Hi Liz,

A good doctor will, in this era of baby boomers, suggest an HIV as well as HCV, HBV & HAV test. I had Hep A & B tests and shots in addition to getting an HIV test early on in Tx ... all routine stuff.

You're not being singled out in any way ... Many (most?) here have gone through all of the above.

The time for hiding your head in the sand is past ... embrace the test, look at the results and move on. (Not looking at the results of an HIV test that you've already taken is a bit on the silly, drama side of things, don't you think). Time to shift gears and channel some positive thoughts into being cured of HCV and healing your liver.

We can steer you in the right direction but now it's up to you to accept and embrace your life, time to move on from the worry and start a new beginning.

You've got this Liz ... you're on an excellent Tx and you will be cured.

Time to stop the worry and become proactive instead ... accept, embrace, move ahead and share what you learn with others, you can do it

Dave.

p.s. I think we are neither lucky nor unlucky in regards to HCV ... we just have it and either need treatment, are on treatment or are cured of HCV.

You are well on your way to being cured of HCV.

JimmyK · Guru

nightowl wrote:

2016 - the year of confronting all of my worst fears ... surgery, relationship breakup, Harvoni, HIV test ... what next?

Hi Liz,

I would like to answer the above question for you and pray you agree.

Yes 2016 has been rough for you, but as you have noted, the roughest part has been the undue worry. For you what's next is you will find out you are NOT positive for HIV. Shortly thereafter you will find out you are Undetected for HCV.

At that point you will cry some but it will be a different kind of cry. It will be one of great relief and thankfulness so the tears will roll down to a smile.

That is when a time for reflection comes in. To consider all the needless pain brought on by unfounded worry that should have been a matter of solid hope.

Resolve to carry forward with hope, and never again allow fear to overtake blessed hope, which in and of itself often alone results in a cure for what ails you.

Become a champion for others who will follow, in the same footsteps you have walked. Lower your hand to them and lift them with the tales of where you have been, and where you are today.

What is next Liz, is you are about to become a true inspiration to others and their beacon of hope.

wink

The mushy side of JimmyK

wendyo · Guru

Liz,

I just want to have you look at the positives here....in the short time we have known you look how much you have grown.

Loopy Lisa · Guru

Hi hun, I've have had twice a H.I.V test as part of I.V.F protocol. If anything it gives great piece of mind. With Hep C and H.I.V you would 100% know by now as it speeds up the Hep C and after 28 years, you'd be in trouble. Take a deep breath and just remember you're nearly through treatment and life starts again. I had recently a test for Hep E and A because my alts were very naughty, I was pretty sure I didn't have, but didn't relish the idea. Happily, tests give great relief, and that is how i view them.

Stay strong, the pathway to a new you is almost on the horizon. x

Tig · Admin

Your doctor is absolutely right. If you had contracted HIV 28 years ago, you would have known it a very long time ago. You would have experienced significant symptoms from it generally in the first 10 years. Unlike HCV, HIV doesn't hang around and wait for 20-30 years before rearing it's ugly head. I wouldn't worry about it. This test will simply prove you do not have it.

nightowl · Member

Okay ... deep breath ...

There is something that has been weighing on my mind ... it would be nice to share it with someone ...

I also added an HIV test to the bloodwork I ordered yesterday!
None of you know this, but doing this is was actually a very very big deal for me.
Ever since I found out I was HCV positive in 1992, I have been too scared to have an HIV test!
I figured if I was unlucky to contract HCV, then I probably contracted HIV too.
So I have adopted the "head in the sand/live with constant fear" approach since then!
I know the only time in my life I was exposed to either HCV or HIV was prior to 1988 ... so that is 28 years ago now.
My doctor reassured me that if I had caught HIV 28 years ago I would know about it by now.
Nonetheless, I have still been too terrified to have a test.

Well, I took the test yesterday ... but now I'm too scared to pick up my results *sigh*

2016 - the year of confronting all of my worst fears ... surgery, relationship breakup, Harvoni, HIV test ... what next?

-- Edited by nightowl on Thursday 28th of July 2016 04:19:33 AM

nightowl · Member

Thanks everyone. I honestly don't know what I would do without this forum and without all you lovely people and your support!

Yes Tig, I agree with you wholeheartedly about periodic testing being vital for monitoring how your general health is, aside from viral load, whilst you are on such a powerful medication. My GP, who has worked specifically in the field of HCV/HIV earlier in her career said exactly the same thing - noting the importance of monitoring things like kidney function etc whilst on treatment. And of course, the benefits of following your response in terms of feeling involved in your treatment, and feeling as though you are "getting somewhere"!

I think I have annoyed my specialist by going off and getting this viral load test independently, but I am glad I did it nonetheless. At least I will feel as though I have some idea of the direction I am going ... and yes Wendy results will be very interesting indeed!!! However, whatever they are at this late stage in treatment, I guess I have to bear in mind that I won't be able to consider them in any way conclusive.

On a brighter note, I spoke to my GP just now, and apparently all my bloodwork appears normal (ALT's, kindey function etc). The viral load test is not back yet as it takes longer to process, so I'll let you know when get the results.

Shadowfax · Guru

wendyo wrote:
Hi Liz,
with harvoni it does depend on if you had treatment before and if you have cirrohis or not as far as the 8 or 12 weeks. As I had failed 2 prior TX I was on harvoni for 12 weeks. So he is partially right but not 100% accurate. With riba they have to monitor to see if you have become anemic (as well as other factors) so labs are done more frequently.
At this point it is what it is, you are close to the finish line so we will say our prayers for the slaying of the dragon and march forward. The viral load result will tell plenty

This is true to the best of my knowledge. I recently finished 12 weeks of Harvoni with Cirrhosis but I had not been treated prior. I have seen charts that say 12 is good enough and some that say I should have been on 24. It does say, with no cirrhosis and no previous treatment that 8 weeks should do it. I do believe that one was consistent. That being said, your doctor needs to learn some bedside manner to console his patients.

We are rooting for you and good chances you are just fine.

SF

Loopy Lisa · Guru

I'm afraid it is not protocol to test for VL until post 3 months. My doctor sees all her patients after the first month to check labs and if we are coping ok. If we are, on our jolly way, if not, take it from there. I saw her this week and that's it til the end. As its 8 weeks, they probably don't see much anemia.

All the best.

Tig · Admin

I posted this is the HCV News section a couple of days ago. Here's the current recommended AASLD testing guidelines, pre, during and after treatment. While it is the 12 week test after the end of treatment that counts for determining SVR, there are tests that should be done or considered before such time. Aside from the potential benefits for the patient's morale, there's a lot going on that may not be clear, such as compliance, reaction to treatment and efficacy. Clearly, if an individual is on a shorter course of care, with a statement given that it may be necessary to extend treatment, that can only be determined by what??? Testing...

2016 AASLD Testing Guidelines

wendyo · Guru

Hi Liz,

with harvoni it does depend on if you had treatment before and if you have cirrohis or not as far as the 8 or 12 weeks. As I had failed 2 prior TX I was on harvoni for 12 weeks. So he is partially right but not 100% accurate. With riba they have to monitor to see if you have become anemic (as well as other factors) so labs are done more frequently.

At this point it is what it is, you are close to the finish line so we will say our prayers for the slaying of the dragon and march forward. The viral load result will tell plenty

Observer · Guru

I think he's wrong and you're right to get those tests done.

I had blood chemistry tests every week during and for the next year. Also VLs done once a month during treatment, then the day after EOT, then 4 then 12 then 24 weeks after.

I wasn't on harvoni and had to monitor riba effects but none the less, I would think it's important to the Dr. to monitor the progress of the treatment.

plus it's good for your mental health to see those enzyme number become normal. smile

bless,

Alison

nightowl · Member

Update to my Update:

I was just finally able to speak to my liver specialist on the phone.

I told him that I was concerned that I had not had any periodic blood tests during treatment, and that I had asked my GP to order blood tests today (LFTs, viral load and FBC).

He told me there was absolutely no point in ordering any blood-tests whatsoever until THREE MONTHS AFTER I HAVE FINISHED TREATMENT.

To quote his exact words:

"You don't need to have any blood tests when you are actually on the treatment. The only blood test you need is the one at three months after you have finished. The treatment for 8 weeks has the same cure rate as the treatment for 12 weeks".

"If the virus is still there after 8 weeks of treatment (eg. when we test 3 months after you finish your 8 week treatment) then it means you have a resistant virus ... it does not mean you need longer treatment. In fact, if you were to continue with any further treatment after the 8 weeks, with an already resistant virus, it would simply make the virus even more resistant".

"If when we test at three months after you have finished your eight week course and you haven't cleared the virus, then you have a resistant virus - in which case it is a good thing that you stopped after the 8 week course, otherwise you would have developed even more resistance. If that were to happen, then all you could do would be to wait for a new treatment to come along. But it is very unlikely that will happen in your case".

I asked him why it was that some people are on 12 and 24 weeks rather than 8, and he explained that it was due to individual viral loads and whether peoplel have cirrhosis or not, and if they have had previous treatments in the past.

So the blood tests I had done today apparently won't mean anything at all. The only test that matters is the one I have 12 weeks post treatment.

Does this sound right?

nightowl · Member

Update: Thanks guys, I'm just back from the doctor now.

I got her to do FBC, LFT's and HCV viral load. Are there any more tests I should add to that at this stage??

She said the results should be back in a few days, so there will be enough time to order another bottle if needed.

I'm a bit annoyed that my GE just kind of sent me off into the wild blue yonder with no instructions for periodic blood tests along the way.

Oh well hmm

Pablito · Senior Member

As usual, Jimmy is right. If you've only got a week to go - congrats on that! - and your doc was prevaricating about 8 vs 12 weeks then I'd want a VL this week so that the decision as to whether to extend or not can be made before the end of treatment...there can't be a gap.

All that said, 8 weeks should do the trick, but best to know now how you've been responding.

Sydhanrahan · Guru

Hi Nightowl,

if you are in Australia, then it's a mix up. At the public hospital I go to in Melbourne I think 4, maybe 8 weeks, 12 and then EOT 12 is standard.

If you go tohave it done privately then pathology reimbursements haven't caught up with drugs on the PBS.

i had an EOT plus 4 done privately and was told I would have to pay $158. Still haven't received the bill though.

In any case, at your next appointment, I would be whingeing loudly.

Syd

JimmyK · Guru

Greetings,

With an 8 week protocol it would be wise to get a HCV RNA prior to EOT. This will help to determine if to extend to 12 weeks. Tell your doctor in that it takes some time for the test to come back, ( up to 10 days in some cases ), NOW would be a good time to do the blood draw.

JimmyK

wendyo · Guru

You are right Liz, time has flown! Wow.

Different protocols do the blood work at different intervals. Some are 4, 8, 12 weeks. Also depends on doc, insurance. You are right, give them a call and see what the plan is. Let us know........

wendy

nightowl · Member

Hi gang ... I also just wanted to mention that I am currently on Day 48 of treatment (I know right?!) and I haven't been scheduled for any blood tests yet! I'm feeling a little worried as I notice you all having periodic blood tests. So I will be calling my GE tomorrow to ask him about this. I only ask as I am due to finish my two months of treatment in one week, and I remember him saying he wasn't sure if I would need 8 weeks or 12 .. "we'll see as we go" I think were his words. So I am assuming that I will need a blood test in the fairly near future to indicate if I am responding or need a longer course? Would anyone be able to shed some light on standard protocol for blood tests on treatment please? Thanks and much love to everyone as always, Liz xx

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