4 week lab results

Got lab results back. HCV RNA went up to 9380 from 293 two weeks ago. :( doc said to have more bloodwork done next Friday & call him 5 days later to see if we go forward or stop treatment.
I'm hugging pups. Hubby says to stop & realize that 9380 IS less than 1.5 mil where we were on July 15.

[copyman]

So sorry. This is not the news you want to hear when treating.  What doctors are looking for is 0 RNA at 4 weeks. Are you treating with one of the PI's? Hopefully next test will be UND.

[crossroadsec]

Really now.. I need to know what RNA is. How are you feeling? Did you make it to work? Keep ur chin up. lol That way the pups won't lick you in the mouth.
Hubby is right. It ain't over yet. Promise me you'll rest.. xxxxx. (no kisses, the pups will give you some) Karen :)

[copyman]

So sorry. This is not the news you want to hear when treating.  What doctors are looking for is 0 RNA at 4 weeks. Are you treating with one of the PI's? Hopefully next test will be UND.

[cctex]

I'm going to a Gastroenterologist. MD. (What's a PI?)  I'm starting to wonder about this guy.  I have called 3 times in the past week and I don't get called back.  This just ain't right.  I don't need a nonresponsive doc to add into this mix - no way!!!

[cctex]

HCV RNA quantitative test to determine the amont of virus in your blood. It gives you a number for your Viral load.

at least that's how I understand it....and I don't know what PI is!!!  Liz

[hrsepwrguy]

When he asked if you were taking the PI's he is asking are you on triple therapy

[lynda607]

According to your previous post you started triple therapy with Incivek on July 15th and it is a response guided therapy.  Your vl was over 1000 IU/mL and according to the futility rules provided by Vertex you should stop all treatment now.  The pegylated interferon and ribavirin are not able to destroy the protease inhibitor (Incivek) resistant variants.  I'm sorry to say but SVR, even with a treatment duration of 48 weeks is highly unlikely.

[hrsepwrguy]

HCV-RNA - hepatitis C virus-ribonucleic acid

[lynda607]

Correction:  All three drugs should be stopped with viral load of 1000 IU/mL or above at weeks 4 or 12.

[can-do-man]

Sorry about your news, as lynda says tx should be stopped.

Stopping Rules
According to the telaprevir label, all 3 drugs should be discontinued if HCV RNA is ≥ 1000 IU/mL at treatment Weeks 4 or 12. This rule exists because it was shown in clinical trials that if HCV RNA levels did not drop < 1000 IU/mL at Week 4, the likelihood of achieving SVR was exceedingly low. Continuing telaprevir alone without adequate virologic suppression increases the likelihood for emergence of resistance variants. The label also specifies that if HCV RNA is detectable at Week 24, pegIFN/RBV should be discontinued.

[can-do-man]

The above is from clinical care options site.

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%206.aspx

[cctex]

doc said since my viral number was low the first time that he wanted to go a little more, that it was a gray area.

yes, i'm doing the triple therapy - sorry i didn't put that together with the letters PI  - a little of this technical stuff goes a long way with me and it gets confusing.  all i want to do is get well.


I certainly feel pretty FUTILE now for sure - futility rules or not - thanks hrsepwrguy and lynda607.


sorry if i seem slow.

[crossroadsec]

Futile Shmutile. I feel such a bond w/  you cuz we started on the same day. So I'm feelin mad right now. Let's wait n see... Go for the 2nd opinion if you have that option w/ ur insurance. For some reason they have you a week ahead of me on blood work. What was ur first set? when was it done? forgetful....  Must be the PI...

[cctex]

Magnum PI? (LOL - showing age!)  

We started on the 15th with first shot.

Did one July 29, and one Aug 12....that's what I got back today.

I think.  My calender is on my desk at school.  (of course)

[Gerbils]

No apology needed. I guess the results are the reason the doctor wants the repeat? Even tho the doctor doesn't usually do the lab tests, it is worrisome when the doc isn't top notch and unresponsive. Not returning calls you do not deserve. Please keep us informed.

I'd be huggin my puppies too. (Don't tell Karen) but I kiss mine too. You and the hubby and the puppies stick together and you'll find a way to beat this thing. I've seen some posts on here lately about some new trials. They always get me confused when they refer to the drugs by the study names so I don't know what the drugs are, just don't give up. This sounds like a good time to find a good hep c doctor that participates in trials and get in so they know you are out looking for some of the new stuff. Your participation may cure you and help others for whom the triple therapy doesn't work. I wish you all the best. Someone once said you can't win if you don't play the game. You're playing and you will win, if not this time, next time.

G
G

[HectorSF]

Although it may seem bleak right now hang in there as best as you can.
There will be time to access what has happened and learn from this experience.

That your Gastro has not responded in a timely manner to your inquires is a poor reflection of their commitment to patient care.
That the doctor didn't follow the proper protocol for treatment is inexcusable and unprofessional.
If you doc won't help you...I would talk to another Gastro maybe in your doc's office or somewhere else and get their approval to stop treatment. Does Vertex have a help line for patients? Maybe they can advice. You DO NOT want to develop resistance by continuing treatment with no chance of SVR. That would be something that you couldn't correct as easily as finding a new doc etc. I believe resistance lasts for a number of years as far as is currently known. Everything else you can change to help you to continue to fight your hep.

Tip to get a response from your doctor's office:
One trick I have done in the past - is to go to the doctor's office (I usually will dress up in a tie and suit so they see me as a serious business person) and wait there until someone will see you. Yes, you need to be a pain in the a$$ but this is YOUR LIFE that we are talking about here. What better time spent. Be willing to sit there for hours if you need to. Try to stay claim and know exactly what you want before going there. You don't want to get all emotional and crazy that will work against you. Make your needs known and calmly stick to your guns. Don't let anyone brush you off. You pay for their services and you are under the care of the doctor. They need to treat you with respect and dignity. Eventually they will have someone see you as you will make them uncomfortable and they will be forced to deal with you. (On the phone you are just a voice and they can hang up to get rid of you). Explain your dilemma, calmly and a clearly as you can and that you need an answer today. Not later or tomorrow. Let then know you are willing to wait all day if need be. They will get the message.

Good luck. Let us know what happens.
Hector

[lynda607]

Oh my cctex, I do not see your doctor's logic.  I don't think there is much grey area to it, given the data provided in all the trials.  Regardless of the 293 viral load at two weeks, your 4 week viral load increased and was well over the the 4 week 1000 IU/mL established protocol.  That is something you do not want to see, especially when the patient is treating with a protease inhibitor.  

Good Luck. I hope things work out.  

[cctex]

Thank you!  Made me feel better to hear kind words.  

[cctex]

Thank you for commenting in such a positive way!  This response helped me a lot!  I think I will do just as you suggest.  I don't think I am being taken seriously and it's just not right.  I used to have the BEST doctor in our area, he retired just this year.  This has been a very strange experience for me.  I'm used to a completely different "bedside manner."

Thanks again, and have a great weekend!

[HectorSF]

Good for you. Demand the respect you deserve as a patient and as a human being. Don't let anyone treat you differently.

Have a great weekend!
Cheers!
Hector

[willbb]

Sorry about these results....an increase in viral load is something you don"t want to see during treatment  and given the fact this is well above the discontinuation protocol for in civek I would agree with the others to stop.
It would seem odd the doctor is saying this is a grey area when all there is to base therapy on at this point is what has been tried in trials and there was no grey area in those about possible resistance developing ..  unfortunately in some resistance variants were seen early on

Hector has given you great advice ..to get in touch with a help line at Vertex  and discuss with a knowledgeable doctor or virologist there(if possible)  to discuss the advice your own doctor has given you to continue past the discontinuation period.



Best to you
Will

[crossroadsec]

Well girl, almost ALL of the forum experts have weighed in. :D There are always options. Hector, you crack me up. I do the same thing. I dress to the 9's for every lab n Dr. appt. Drop emotion at the door and go straight for logic. Give you a chance to show those legs in a nice skirt. haha!
Remember, in Oklahoma, lipstick and mascara are considered war paint. You Texas girls can do that. Tease that hair a little? :) Dream sweet. Karen xxx

[cctex]

But Karen, I'm a Beach Texan & not a Big Hair Texan!!  WAIT! I  know, I'll put my librarian duds on & give him THE LOOK like I give the kids that are misbehaving in the library if he doesn't listen to me. I'm thinkin' I'm gonna fire him. I'm calling Vertex 1st thing in the morning. Thanks again every one.    

[HectorSF]

Karen,

I keep my legs well hidden. Trust me, no one wants to see these legs. No jacket and tie and shorts fashion faux pas for me! I also don't wear socks with flip flops you'll be happy to know. ha ha!

Since I am on disability it is a chance for me to wear my best clothes.
Funny story...I got listed for a liver transplant at a transplant center back east and always used to dress up for my appointments. I used to go and hang out in the cafeteria a lot while I waited for appointments or tests. I can't tell you how many times the cashiers thought I was a doctor or worked there (employees get a discount on the food). All because of how I dressed. I am 59 years old and an a WASP like most people at this very New England transplant center so...Although I couldn't flash my legs or bat an eye I still was able to use the "apparent" authority of being a 59 year old professional to my advantage without saying a word.

Bottom line: If it works for you use it.

And I didn't even have my voodoo dolls then! Look out I got my mojo working now and I am ready to conjure up some spells. ~~~~~~~~~~~

Hector
;-)

[can-do-man]

Hi, just wanted to say this is not something the "forum experts" came up with. This is the guidelines that the real experts have decided. Clinical care options is one of the top sites with many of the worlds leading hepatologist base their finding. Doctors, researchers, and real time trials have decided this. There are other sites where doctors have the same opinion regarding when to stop treatment.

The good people here care alot and sure don't want to see anyone jeopardize their health or their future chances at treatment. As always one should consult with a Doctor before deciding anything.... Wishing you the best in your treatment.

[crossroadsec]

Hector n all- Can-do-man, that's precisely what I meant! There are those of you who have a much wider knowledge base regarding hard facts. Cctex n I messaged n while I could have spent an hour researching, all I could offer was my anectodatl evidence n support. As soon as she posted, sure enough, you all came on with the truth cuz you've lived it AND researched it. And you care.. Oh geez. Here come the tears. Thanks guys for taking the time to help us figure out the trash from the treasure in understanding tx. Good day all.. Xo Karen :) lol at how our appearance does make a diff Dr Hextor, sir. Haha

[crossroadsec]

and the English teacher misspelled anecdotal. lol.Better go spend some more time in the classroom before Monday. It's gonna be a year....

[Trish77]

Karen....I think that's called a typo, not a misspell. :-\  Hope you have a restful weekend.

Trish

[Trish77]

You said:

We started on the 15th with first shot.

Did one July 29, and one Aug 12....that's what I got back today.

I think.  My calender is on my desk at school.  (of course)
----------------------------------------------------------------------------------

You say you started on the 15th with first shot...then "did one" ...assuming this means a PCR ... on July 29 and Aug. 12, yes?  Viral load was 293 at July 29 and 9380 at Aug. 12?

No change in dosages or anything I would presume from Day 1 to now?  Can I ask how much ribavirin you're on?  

I don't want to steal any thunder from your hubby but have to say....your viral load will not STAY at 9380 if you stop treatment now, not that it matters too much as viral load doesn't matter off treatment.  I just want you to realize if you stop treatment, it will likely go back up again but that's okay and expected and neither you nor your hubby should be discouraged by that if you do stop treatment and those numbers climb again.  

I find the number just a bit odd.  It's a bit of a longshot....but I think if it were me and the viral load at Week 2 was 293 and the viral load at Week 4 was 9380 and I've been on a PI and I've been totally adherent, I think I'd be asking for a do-over of that PCR.  Just a thought.

Trish

[Dee1956]

Hi, so sorry to hear of your news. Like Trish I would think the doctor would have wanted to have you retest right away, just to be on the safe side, not wait until next Friday then another 5 days.
It is so irritating
PI = protease inhibitor
I would be inclined to think this is a fluke.  I have had false negatives and false positives so I tend to want a "redo"
Good luck,
Dee

[CaughtOffGuard]

I am so sorry.......VL >1000 is definitely not what you wanna hear at week 4.  I'm here for you!

Big Hug,

christina    

[screaming48]

Well not what you wanted to hear for sure, I don't know alot about the numbers on here, but even to my newbie brain I don't see how it can jump like that...I don't believe that I have seen anything posted like that where your number goes way down and then gets so high in such a short time :? (still learning myself) I would like to ask those with more knowledge if this is normal? Just for my peace of mind I would retest..keeping good thoughts.anne

[Lifenet62]

I have read in my research that although yes, tx should stop at wk 4, or 12, there is also a
Protocol that my Dr follows of testing at wk 8 as well. If tx not working at all stop tx wk 12. People HAVE cleared at wk 5 or 6. I've read it here onmedhelp and on other sites. Keep positive. When one has cancer, the drs don't call you right back either, unfortunately.  
Should you require to stop tx, know that it willnot be the end of the world for you, death will not be imminent, you will still have life and you still have options. I hope and pray someone comes to tell me this should I one day be walking in your shoes. Thank you for being you. With love and respect, jan

[EyesofBlue55]

The virus can replicate at the rate of trillions of virions daily.

[cctex]

Thank you - your post was helpful.  Easy to read and understand!  THANK YOU!  AMEN for telling me the PI mystery Protease Inhibitor I understand!  Got it now!!! :)  
I thought the test was wack-0, too.  I've got a call into the Vertex people - if anyone has a number where a nurse actually answers - I'd LOVE to know it.  I called a nurse helpline and had to leave a message for Monday.  Uggggh.

I have been VERY GOOD with my meds.  Haven't missed or been over 20 minutes late (ONE TIME) taking them.  I have eaten what they said to eat.  I just don't get it.

Monday will be a different day and I'm going to be burning up those phone lines for an ANSWER!  That's for darn sure!  This Texan is UPset.

:)  with that -- y'all have a good weekend, ya hear?!
Liz

[hrsepwrguy]

Incivek 24/7 nurse support line 1-855-546-2483, that is off the front page of the incivek tx ref guide

Keith

[hrsepwrguy]

I tried it and it works they put me on hold to be answered in order it was received

[penn1023]

If this doesn't work will they let you go on another trial since you've now already tried a protease?

[cctex]

I just don't know if another treatment or trial (I've never been on one) will be in the cards for me.  This past 6 weeks has nearly drained us finanancially and emotionally.  I don't know what I will do.  I'm boing to call the nurse line now while it's quite here & i'm not itching too much. CCTEX Liz