4 week lab results

[cctex]

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.

[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

[penn1023]

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

[hrsepwrguy]

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

[hrsepwrguy]

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

Keith

[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

[EyesofBlue55]

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

[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

[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

[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    

[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

[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

[Trish77]

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

Trish

[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....

[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

[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.

[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
;-)

[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.    

[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

[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

[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

[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!

[cctex]

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

[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.  

[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