Hep C Discussion Forum

Greg · Guru

RE: Latest Labs

James10500 · Guru

WAHOOOOOOOO

So stoked for you ! Congrats congrats congrats x infinity !

Much love,

James

Cinnamon Girl · Guru

biggrin Elizabeth!! Many congrats! I gave a liitle shout for joy when I read your news, that is jsut so fantastic - we`ve all been waiting to hear from you. smile smile smile

I am just over the moon for you.

Lots of love and a big hug, Jill xxx

bethland · Senior Member

Hi Everybody

I am Happy to report the trifecta is complete..UNDETECTED !!!!!!!!!!!

love to you all elizabeth

ty · Guru

Hi Everyone,

Thanks for all the kind wishes! It's funny, because they found the hemochromotosis, (It's a genetic disease where the blood keeps too much iron. They traced my DNA back to a specific clan in Scotland, where the disease is prevelant!) when they were testing for my Hep C genotype. It causes all sorts of problems including heart failure. I was told I couldn't go on tx until my iron levels were at normal.

They began taking out a half a liter of blood every week for about two months, then went to every other week, etc. until my iron was at normal levels. I had studied that most problems caused by excess iron would clear up, but my heart had decreased to 28% functioning and I wasn't sure it could repair itself that far.

Well it did! The nurse said my heart was now better than hers, I assume because I trained all my life. I will need to have blood taken out two or three times a year to keep the iron at the correct level, but otherwise this particular disease doesn't seem like too bad of one to have.

It seemed for awhile that my health was going straight down and the problems weren't going to let up, but with this news and of course being post tx, I feel like there is hope that I will be traveling and adventuring again. I hope everyone is feeling the very best they can and keeping a positive outlook on life. Thanks again for being there, ty smile

Leslie - That duet sounds great! I love Monty Python!

-- Edited by ty on Sunday 8th of May 2011 04:10:21 PM

borowif · Senior Member

Hi Ty

So pleased to here the good news about your heart. One less thing to worry about.

Could we just be a duet? cos I dont know what an ecta is. I think duopoly must be monopoly for 2.

Then we could have a little sing song together in the seedy bar on Friday night. We could sing ....."Always look on the bright side of life" by the great monty python crew. Or perhaps you could think of a better one.

Take care

Luv Lesleyxx

James10500 · Guru

Ty- good going on the heart, now your liver will follow suit.

James

Greg · Guru

Hi Ty,
Congratulations on the great news about your heart mate, just fanatstic so happy for you.

Kaz, Ron when I get my blood results I always ask for a copy to be printed out and my team are quite happy to do so. If they are unwilling perhaps a quick written note maybe the go, it's amazing when we come up against things like this when we are on treatment they just don't seem to realize how important this information is to us and that we can understand it, it's beyond me.

Best of luck
Greg

Ron Gilbert · Senior Member

Hi again Kaz.

Great idea trying for copy of blood work. Ive had the same trouble over the years with getting VL count. No one ever wants to give info it seems, even though it is ours to have.

As for the anxiety I definitely was very nervous for many years about doing this and would not have, except for I'm over 50 now and the risks have now far out weighted the potential benefits. I was still really nervous on the 2nd injection but feel I'm starting to relax and take it as it comes. I have been sleeping so I'm extremely grateful for that as I do not function well at all without adequate sleep.

Thanks for posting. Ron.

missycat · Senior Member

Hi to Sherri Ron welcome frm me too

Ron,just thinking maybe the restless thing is because your new to tx feeling bit anxious and worried? i know i did built it up and up about starting running on adrenaline for weeks then i came down with a big bang,became very tired yawn now im in week 10 almost 11 wink and feel bit more settled into this whole thing (well as settled as i can be).

kaz xx

ps im going to ask my nurse for my full bloods when i go.just wondering to those of you that have posted your bloods on here.do you write them down quickly or should i ask for a print out? my nurse doesnt seem to like me knowing all of them but i really wont to keep a record plus post them up here smile

Ron Gilbert · Senior Member

Hi Lesley,

I'm 10 days into this and still learning what to expect. I had cold chills the first couple of nights and its been hot sweating since then along with restlessness that others may be calling itching. I'm not quite sure how to explain it but its hard to sit still sometimes.

Thanks for posting. Ron

Ron Gilbert · Senior Member

Thank you for the kind words CG,

I'm glad to hear there is some true comradery here. Its a good thing and Im coming to understand your advice as it is greatly welcomed. I need all the help I can get. Lol. But at least say "hi" before you (not you, but Brendan) start telling me what drugs to take. lol.

I will be fine and a likely overreacted a bit. Im a little direct in my manner as well and people like us tend to but heads a bit. Rest assured there are truly no hard feelings and I with the best for all without question.

Thanks again for your kindness. Ron.

borowif · Senior Member

Hi Ron & Sherri

Would just like to say welcome to the forum. You've certainly come to the right place for help & support from people who understand what you are going thru.

If you have any concerns or worries just ask away & there will be somebody there for you with a helping hand.

Luv Lesley x

Ron Gilbert · Senior Member

Thanks for the humor Ty, very encouraging.

I'm very happy as well to meet all of you who are ahead of me. I had no idea that I could have a 2 leg drop in VL count. I was given an educational class by the drug co. rep and they said that if I was not UND at 4 week the drug had a less than 1% chance of working. She may not of known I was genotype 1. Not sure of all the facts even yet but again glad to know all is not doomed if I don't achieve UND at 4 weeks.

Honestly though, why would someone criticize me for seeking Telaprevir?? I have no desire whatsoever to take that crap on top of what I'm already taking but if it starts at 4 weeks in conjunction with a poor VL report who could fault for such a thing?? And Brendan seems to be confused as to why I would feel hurt by his hasty comments. He had never even bother to say hi or speak to me about my situation. No matter how unintended I do feel hurt.

Ron-

Ron Gilbert · Senior Member

Thanks Brendan,

Perhaps if people are finding your "direct manner annoying or something" you should consider giving a little less unsolicited advice to people that you have taken no time whatsoever to get to know?? It is a question worth thinking about wouldn't you say?? When you use words like "hassling people" and "hijack another discussion" in your initial post to someone you have never even spoken to before it leaves quite a lot of room for misunderstanding, especially with someone in another part of the world who knows nothing of your culture or euphemisms.

Although I am grateful for your kind words and I enjoy a person with direct manner, your added unsolicited advice about getting AD drugs is again a bit harsh, I am a bit direct myself and typing a sentence in caps is very far from loosing my temper. LOL> ... LOL. At least for me personally, but then again you know nothing whatever about me, do you??

I do enjoy the spirited conversation though. Thanks again. Ron.

Cinnamon Girl · Guru

Hello ty - I see you`re online so thought I`d say congrats straight away for that amazing news about your heart!! Excellent! smile smile smile So happy for you.

I was going to say something to Ron too, in fact I`ve already sent him a msg to explain a bit.

Hi Ron, hope you don`t mind us putting the record straight but Ty is absolutely right about the `trifecta` that Brendan mentioned. We follow each others progress quite carefully here because this is a fairly small forum and we get to know each other well over time. Also correct about the differences in the way people from other countries express themselves. Please don`t take offence - Brendan is absolutely well-meaning and is not being agressive. It`s just his way of speaking.

I`m sure you`ll soon feel at home here, we`re a friendly lot!

All the best to everyone, love from Jill xxx

ps - I took so long to type that out that you`re now offline Ty!

-- Edited by Cinnamon Girl on Saturday 7th of May 2011 06:37:02 PM

ty · Guru

Hi All,

What, me cranky on tx? Just because I'm ordering flowers for the clerk that I spoke to at the bank yesterday. Well, I was in the right, but I suppose I could have handled things differently, lol. Isn't chemo a load of fun...

BTW - The trifecta comment related to those three people ending tx near the same time and therefore testing at the same time. Next come Jill and Aaron (4 weeks ahead of me!) and then it's Leslie and I (I guess we are a douecta?) (a douopoly?) But, some of us have to wait a little longer, sigh.

I have found it important to note those that are just ahead of me so I can tell if my sides are somewhat normal or not. (On that note, thank you Jill for the comments about a month ago on the itching, mine is now going away also. What would I do without this forum?)

On a further note, I happen to speak both British and American English and they can be very, very different at times. (And yes, I know I'm writing in American English!) Inflections, humor, semantics, etc. can often be taken for the opposite of what I'm trying to say and I'm assuming that is true for Australian English as well. While I've had many Aussie friends over the years, I don't pretend to know the nuance of the language. For years I've made a serious study of learning UK English and I still struggle to this day!

My UK friends tease me when I first get back to London, because I have automatically reverted back to "Yank" speech. That's just the way it is. We are all friends here, so we need to understand that sometimes we might misunderstand what others are saying, but the bottom line is that we all have the other's best interest at heart.

Again Brendan, congratulations on the UND, that is awesome. Also thanks for the advice to Jill and Leslie about the testing. They told me that I wasn't to be tested at 12 weeks either, and I didn't know whether to worry or not. I was so happy that my liver numbers were better that I didn't have the extra effort to think about anything else!

And on a final note, I got the info back from my cardio and my heart has healed itself from the excess iron and and I'm finally on my way to completely good health! Thanks all and take care, ty smile

BJ · Guru

Gidday Ron,

In regards to the start of your first reply to me, thanks, scraping in at that week 24 PCR was the first only decent, negative thing that happened to me, practically in the whole of my first 6 months of a very long tx, I truly do hope your tx is swifter and smoother than mine.

As to the rest of your replies to me, the suggestion about starting your own thread in 'On Treatment' was a friendly suggestion and only intended in that way. Same goes for the advice about not worrying about other treatments when you have only been on the current standard of care (SOC) tx 11 days ! Ron, you have to have confidence in the tx you have started, and try to not worry about other things like the new drugs right now.

You say you feel a little cranky, well irritability and losing your temper are early signs of depression, a classic side effect (sx) to the medication you have just started taking. You may need to discuss the need for anti-depressants (ADs) with your tx doctor, so depression doesn't stop you from taking the HepC tx drugs.

Anything I write here to you, is purely to try and help you get through tx Ron. Some people when they first meet me here, find my direct manner annoying or something, I'm sorry if that's the case with you. Having just started tx is a very difficult time for everybody, so I hope you are coping well and the sx aren't too bad for you yet.

Cheers,

Brendan.

Ron Gilbert · Senior Member

Oh ya Brenden,

I don't know why you chose to direct so much negativity towards me saying I was "hassling people" but at least one of the trials I contacted will not start the Telaprevir until AFTER the 4 week lab result which makes me qualified as I'm at week 2.

Everyone else around here has been real positive and I'm sure that most everyone here is searching for answers as I am. Any positive info that we can get and share will be helpful to all. Overall I think negativity sucks, is not helpful, and you embarrass yourself.

Ron Gilbert · Senior Member

Hi Brendan, thanks for the post.

Its encouraging to see that you were UND after 24 weeks. I think I will keep posting here where I have met some real nice people, even if I am "hijacking" this thread. (purley unintended) (this tread is "Latest Labs" NOT "post tx" in case you didn't notice) I HAVE 2 WEEKS TO GO FOR MY NEXT LAB AND THIS IS WHERE I WILL BE POSTING..... ( I feel a little cranky) Anyway, congrats and I hope the UND thing is not limited to your exclusive "trifecta" group as my wish is for myself and ALL that embark on taking tx as prescribed reach UND asap. If not sooner. Keep posting those Labs everyone!! Its very encouraging!

Thank, Ron.

BJ · Guru

Gidday Everyone,

First cab of the rank, you little bewdy James, well done on the UND mate, feels great doesn't it. I was trying to get on here last night but my server wasplaying silly buggers and wouldn't allow me to sign on, so it was very frustrating not being able to say well done big fella', but I see plenty others got on so you weren't celebrating alone.:)

Elizabeth:- How's it goin' over there in WA, must be a bit frustrating not having got your results back yet. You'll be right, your figures were always good on tx, so you'll piss it in - no wuckers. Give 'em a ring on Monday and put a blast up 'em for draggin' their butts. We've got everything all crossed up for ya' in support, but it's a forgone conclusion for you really that you'll be taking up your spot in the trifecta with James and I as the three dudes on here to go UND at week 12 in post-tx.

Lesley & Jill:- Gidday girls, I wouldn't worry about it, not getting a week 12 PCR done I mean, because they don't do them in a lot of cases if you've had a good run on tx or have responded well to the tx. Also in some places like the UK, funding is tight so only usually type 1's would get PCR's if they were lucky. You've both had pretty good results in tx, so as you say Lesley, just put it in the back of your mind and get on with trying to get back on your feet. We'll all celebrate each others SVRs as they rock up at the 6 months post-tx mark and whether we have week 12 tests or not, we're all in the same basket and just have to get on with life in the meantime. Good luck to you both, but I'm sure you'll both be fine.

Ron:- Welcome to the Forum mate. I see you have started tx and that's fantastic, hang in there, there are times when it will be hard and we are all here to help. If you have any questions or just want to tell us what's going on with your own situation, fire away. On that point, it make better sense to start up your own "Topic" over in the 'On Treatment' section, rather than hijack another discussion.

In regards to hassling people about the new treatments coming on line while you are on tx yourself is a waste of time. You waon't be considered while on tx and most trials are for people who are 'treatment nieve' - that is to say - haven't ever had tx before. What you are doing at the moment is going to be hard enough, so just try and settle down for the ride and concentrate on what you are currently doing.

Have complete confidence in what you are doing because this tx works and the new tx's will only make tx shorter for the more serious genotypes, and are another option for the small percentage of people that don't succeed at the currently available drugs for HepC tx.

Cheers,

Brendan.

Ron Gilbert · Senior Member

Hi All,

I went to ClinicalTrails.gov http://www.clinicaltrials.gov/ct2/home and found 2 or 3 possible trails of the Telaprevir. I submitted my info and I will wait for them to contact me.

Ron.

Greg · Guru

Hi Ron,

Thanks mate, reagrding the new drugs, I'm in Australia and I don't think they are available here yet, I am seeing my specialist on Tuesday and I will ask him about them then, but seeing as I'm responding to tx so well I'd say they'll keep me on the present regime, but if it's offered I'll take it no worries there. I'll do whatever it takes to beat this.

Cheers
Greg

Ron Gilbert · Senior Member

Thanks for posting Greg, I hope to get as good a result as you have achieved. Great job! Have you been offered either of the Boceprevir or Telaprevir? Or is it even available yet? Just wondering if you know because I'm ready to conqure this thing and want to know my options.

Ron.

ty · Guru

Hi Ron,

I thought you were just talking about viral levels, but I was also tested for blood levels and liver readings throughout my Tx. The first one is to get a reading on how your body handled the first shot and then they watch everything for the rest of treatment.

They tested me every week (because of other medical reasons), but while most everything went down, it didn't stop me from continuing.

Congratulations on starting tx and I hope the sides are being kind. Take care, ty smile

Greg · Guru

G'Day Ron,

A warm welcome to the forum mate, great to have you onboard, wishing you all the best on your journey to beating this dragon. You doctor sounds like he's going to be monitoring you closely that's great news, good luck with your 4th week PCR.

The first couple of months are a bit rough, well they were for me but I seem to have settled in to a pattern now, and have just had my 12th week PCR and nailed the 2 log drop so I'll be continuing the tx for another 34 weeks I'm genotype 1a, so we're on the same long road.

Good luck,
Greg

cheery chatter · Veteran Member

Hey Ron, I am new too and am at shot 16 so hang in there. Noone says it is easy but YES you can do it.......... I am already amazed at this support group. Good Luck, Sherri

Ron Gilbert · Senior Member

Thanks kaz, Ive taken the second injection and Im starting to feel the routine.

missycat · Senior Member

hi Ron hope your doing ok in your first week of tx smile welcome to the forum

kaz xxx

Ron Gilbert · Senior Member

Thanks again James, Im 2 weeks away from my 4 week VL test so Im hoping the 3rd drug wont matter (to me) because I wont need it. Its nice to know its out there though in case this dosnt work for me!

Im so happy to hear and see all the UND reports.

Thanks everyone. Ron.

Ron Gilbert · Senior Member

Thanks for all the responses. I started 1 week ago and the doctor had said that he wanted labs one week after starting to check hemo levels as a precaution. Didnt make sense to me as most are waiting for the 4 week test to check viral load.

James10500 · Guru

Hi Ron,

Welcome. The only time I've heard of first week labs in clinical trials. Most folks on SOC do a 4 week for their first VL test.

James

Cinnamon Girl · Guru

Hi there Ron, welcome from me too. I`m not sure either what your situation is - so are you saying you`re 1 week into tx (treatment) and are having blood tests done?

A bit more info would be very helpful, then we`d know how to respond. All the best of luck with the tx. smile

Hi Lesley, yes same for me , no test at 12 wks. My next one`s in Sept. I`m just putting it to the back of my mind till then. How is your recovery going?

Cheers everyone, love from Jill xxx

ty · Guru

Hi Ron,

Welcome to the forum! I'm not sure what your question is. Usually they do a PCR test to find out your viral load before you start treatment and then they take it again about four weeks into treatment to see if you are responding.

They take it every so many weeks (Mine were at 4 and 12 weeks) to watch for an undetectable or a viral load drop that would warrant continuing the Tx. My 24 week test was after I completed Tx. I hope this helps, ty smile

-- Edited by ty on Friday 6th of May 2011 05:48:52 PM

Ron Gilbert · Senior Member

Anyone know how important the first lab is?? (1 week)

borowif · Senior Member

Many congratulations to James & BJ & well done. biggrin biggrin biggrin biggrin

I'm not having 12 wk bloods done. My next appointment is in August. Could it be that they do things differently in uk.

Hi Jill when do you next have your bloods done?

Luv to you all Lesleyxx

Minerva · Guru

Congrats James!! Fantastic news!! Congrats Brendan too!!

Everything crossed for you Elizabeth.

Hugs

Heather

xxx

Cinnamon Girl · Guru

James, that`s wonderful news! smile biggrin smile Many congrats. ALL the way upstairs? Yes, I`m still having days like that too! I suppose the beauty of skiing is that it`s mostly all downhill!

Elizabeth, I`m sure it`s been a difficult wait for you. I`m sending good vibes your way too, and really hope you come back to us with good news.

Thinking of you all, we are fighters, one and all.

Lots of love, Jill xxx

Hep Me · Senior Member

Congrats James, that's some good news.

Elizabeth, fingers and toes are crossed for you. Can't wait to hear the good news.

Randy

James10500 · Guru

Thanks you guys. It feels good to get your congrats. I texted Leila and told her she texted back and said Yay, then never said a word when she got home....lol. Oh well only Heppers understand how important it is I guess.

Beth every positive vibe I have is going out to West Oz for you !!

Thanks friends,

James

ty · Guru

James,

That is fantastic news! It makes the Tx somehow seem less onerous when that UND comes up on the tests. Congratulations!

Elizabeth,

Good luck on your results. You are in my thoughts and prayers. Yes, I have everything crossed for you as well!

Take care everybody, ty smile

Greg · Guru

James,

Fanatstic news mate Congratulations that has too be the best feeling in the world.

Elizabeth,

Thinking of you, fingers crossed for your results.

Good luck and take care both of you.
Greg and Cate

bethland · Senior Member

How good is that !!!!!!!!!!

Brendan and James Congratulations!! both clear at 12wks post tx you must be feeling on top of the world...what a joy it is to share in all this excitement and healing.

i should have my result by today ...it has been a long wait due to the easter break i guess..

all my love elizabeth xx

-- Edited by bethland on Thursday 5th of May 2011 10:04:36 PM

James10500 · Guru

HEPATITIS C QUANT PCR	<18	< 18	IU/mL
PLEASE NOTE Reference Range change (04-22-11) <18 IU/mL = Below level of detection, no virus detected 18-43 IU/mL = Virus detected below level of quantitation 44 - 69,000,000 IU/mL = Quantitatively positive >69,000,000 IU/mL = Positive, above linear quantitation range of assay Assay LOD = 18 IU/mL Assay LOQ = 43 IU/mL This HCV RNA real-time PCR assay utilizes the Roche Ampliprep and TaqMan 96 technology. A positive result should be coupled with clinical indicators for diagnosis/treatment. An HCVPCR result of <18 IU/mL does not exclude Hepatitis C Virus involvement in a disease process. This test has been approved by the U.S. Food and Drug Administration.

<18 IU/mL = Below level of detection, no virus detected

So far so good. July here I come, I like July.....lol

Sorry for all the edits, I tried to copy and paste from my iPad but they do have some limitations. I had to go ALL the way upstairs and get on the computer....sigh.
-- Edited by James10500 on Thursday 5th of May 2011 08:28:10 PM

-- Edited by James10500 on Thursday 5th of May 2011 10:11:18 PM

-- Edited by James10500 on Thursday 5th of May 2011 10:11:46 PM

-- Edited by James10500 on Thursday 5th of May 2011 11:01:51 PM

ty · Guru

Hi All,

Congratulations Brendan, that is fantastic news! I have been reading this thread consistantly and I am so happy to hear of everybody's positive news. We are actually beating this darn virus!

(I've wanted to respond to all these posts, but everytime I try, I get lost in my own head, lol. The antihistimines that I am on work great for the itching (Yeah!) and I'm very happy for that, but I'm so brain-fogged that I have trouble following along. I find that I can read and understand everything, but when I try to respond it's just not there...)

Oh well, I'm getting a little better each day. Take care everybody, ty smile

Aaron · Senior Member

biggrin biggrin biggrin biggrin Congrats to you Brendan :) that's great so happy for you. And Jill I will let ya know how it goes :)

dragonfly · Senior Member

Well done Brendan, you did good!

Dragonfly xxx

BJ · Guru

Gidday Randy,

Thanks for the congrats mate, and yes it's all very good for me, and now it's only one more PCR away from the nirvana for all of us - SVR. The let-off from stress has been quite amazing for me really, so for a bloke who rarely wanders off the line, I've been really up tight about tests results. I have been relying on sleeping tabs for a long time now ans still need 'em to get to sleep at night, but the let off of pressure has been such that I don't think I'll need anything tonight.:)

In regards to you, it's good to hear that you are remaining calm and approaching this PCR business in a controlled manner. It is far better for you as someone on tx, who should try and remain cool as much as possible. That aside you'll command a lot more authority and people will be more inclined to listen to you if you are calm and rational, rather than going off at someone because of a possible oversight etc; Anyway best of luck with how that works out.

Those tests done Oct 30th last year would have been when you first seriously started getting close to tx and the qualitative PCR is for the yes/no to see if you have the virus and then the quantitative to give you a pre-tx viral load, so hopefully it's all a misunderstanding and you get that week 12 PCR.

Cheers,

Brendan.

Hep Me · Senior Member

All right Brendan, sounding very good. Not that i'm an expert on such matters but slowly I'm learning and if you're happy, I know it's good.

As a side note, I was quite surprised by all of the responces to my rant about my doc, I didn't start out planning to post that here. Guess I was all worked up and it just came out. Brendan made a good point about not getting upset until I get to the bottom of this, so my plan is to call tomorrow and request my hep doc to call me. It is possible the lady in the office made an error or I don't have some of my info correct. But still doesn't explain why I had to call them about getting the order to have my diagnostics done. If he was on top of things one would think he should be contacting me and telling me what I need to do. Thank god for this forum. Meanwhile, I'll try to stay calm.

Wk 4 results Brendan were all within range, but right at the low side. Abs neutro 1707, platelet 165, rbc 4.48, wbc 4.3, etc.
Greg, looking back at my copies of bloodwk, the only qualitative and quantitative tests were done on 10/30/10, a few months before tx. Don't see anything about qual/quan or viral count on wk 4 or 8 report. That's what made me call and ask, they had the same thing checked for this blood test that they did for wk 4 and 8.
Thanks for your support too Jill, James and Kaz. All of you once again made me feel not so alone in all this. The bottom line like was mentioned, is the meds are in me doing the deed on this virus no matter if I worry about my doc or he worries about me. Time to let this one go for tonight.

Take care,
Randy

BJ · Guru

Gidday James,

Yeh' they're pretty good odds for week 12's, but I'm after the 100% week 24's, as is everyone, but still good odds for week 12's. Hang in there mate, yours will be in anyday now. I'm sorta lucky 'cos I'm an ol' labby plus I get to see people who are all on the same systems so can get the imfo.

Stop tryin' to pinch the "confused" symptom, I think I've still got that one tied up.

Hang in there mate.:)

Cheers,

Brendan.

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