Author Topic: saw Hepatologist yesterday-4 week post Treatment is a biggie on Harvoni too (Read 22898 times)

JillLynn · « **on:** January 29, 2015, 07:48:56 am »

I didn't know if people are going to relapse on Harvoni it's the 4 week post treatment bloodtest point. Hepatologist said at 4 weeks people are relapsing, if they are going to relapse...this is the most common time.

So again, only time will tell. I'm coming up on the 4 week post treatment.

Paleface · « **Reply #1 on:** January 29, 2015, 09:00:54 am »

I have my fingers crossed for everyone. I am virus free for now. That must be why they are checking me in 4 wks instead 12. Damn I hope this works!!!
Keith

JC · « **Reply #2 on:** January 29, 2015, 12:00:24 pm »

I just finished 8-week treatment this past Saturday. Labs normal and HCV negative. I hope this is it! Am a bit worried now about 12-week blood test post treatment after reading this post. Read another post about throwing out your toothbrush...so obvious, but I didn't think to do this.

My AST & ALT dropped to 19/21. Before I was always in the mid 30s.

That's good news. I found the Harvoni gave me more energy while on it. Interesting with minimal side effects. Had a headache two or three days, but easily taken care of with 500 mg Tylenol.

All the best to everyone.

sunrise · « **Reply #3 on:** January 29, 2015, 10:00:44 pm »

Hi everyone
Hey Jilllynn how are you? I am hopeful with you on your test results. If it gives you promise, I had my 4 week post tx. lab and still UD . Now you know I was on S/O , but still it is comparable to harvoni. Brad is getting his 12 week post tx. lab done next week. I think I am as anxious as him for the news. Well I send you all good wishes.... Sunrise

Lynn K · « **Reply #4 on:** January 30, 2015, 04:41:05 am »

Congrats again Sunrise and good luck Jilllynn

BattleTheBeast · « **Reply #5 on:** January 30, 2015, 05:27:33 am »

Hi JillLynn,

Where have you been hiding? I missed your Font! Yes this is like day 5 with barely any sleep and I am goofy!!! Are you getting tested at EOT4? When is that? I am so anxious for all of you!!

I was laughing today because someone asked me when my EOT was and I have never even tried to figure it out. I don't want to know how long I have wait to hear I am SVR24!

So here goes: my EOT date is 5/22/2015, SVR12 is 8/14/2015 and my SVR24 is 11/6/2015

Here's a really cool online calculator tool for this: http://www.timeanddate.com/date/dateadded.html?m1=1&d1=31&y1=2015&type=add&ay=&am=&aw=&ad=

Happy Friday!

Mel

JillLynn · « **Reply #6 on:** January 30, 2015, 07:54:13 am »

Hi y'all! Mel....I didn't know when mine was either.....I just got the email from my Dr's right hand woman....she said they are SO BUSY they are just getting the paperwork out now.

So my 4 EOT is Feb 9. My Dr. said I'm one of the first on harvoni so they are interested in my results but for different reasons. They are just like research study people....kinda live, breathe, sleep HCV but no real human touch. I was pretty surprised when he said people are relapsing at the 4 week point. BUT......so few were in the study and we are the real test as we've been saying all along here.

Yes yes ... I am HOPING FOR US ALL to beat this!! Seems there are still many unknowns.

Sunrise and Brad......waiting to see your results for sure! I just didn't realize harvoni had that 4 week mark like what you guys were on........surprise surprise

Mel....I wrote on here a couple times to you.....but I don't think you saw my posts. Been thinking about you and all of you and pray for you all always! THANK YOU FOR THE calendar. I know the harvoni has only 28 pills so this will help. My DR's right hand woman figured wrong but really what's a couple days? So I'm just gonna roll with her date.....they think each bottle has 30 pills. ( see we are the real experts :-)

keith.....good luck my friend. Will be watching for you.
Lynn K....you know I'm praying for you my warrior sister....this has to be it for you! Just has too!
JC....congrats on finishing. Agree, the treatment was not bad. Now we just have to be cured for good! Will be watching for your post!

love you all a lot! Jill

BattleTheBeast · « **Reply #7 on:** January 30, 2015, 08:52:34 am »

Hi Jill,

That calendar application is kinda cool, I was able to get the dates without thinking which with my current lack of sleep is a really good thing. When you calculate the date they actually give you the 1st day of the following week instead of the last day and I only know this because I start new bottles on Saturdays

I am so sorry I missed your posts to me

. PM me if I do that and saw HEY WAKEUP GIRL!! I always wanna see what you posted to me! So I was researching this morning and it actually made me feel worse about what the insurance companies are pulling but better knowing that if the worst happens we could potentially retreat with Harvoni. After what I went through with the Olysio I am a little scared to try new meds.

It's posted in Paul's thread, he deserved to see something good positive. http://forums.hepmag.com/index.php?topic=2108.new;topicseen#new

I really think we all need to be really proactive in our treatment plan and sometime we are hearing things that some of our doctors don't even know about yet.

Look how Lynn K said she wanted the RIbV added, it's going to give her the best shot and she don't want to relapse again and because she is always looking for options in treatment she pushed for it for herself.

I also don't get people not getting blood work done as they want it and pushing for what makes them feel comfortable in their TX. If I want one every week why can't I have it, I know that's excessive but realistically what's wrong with every 4 weeks?

Ugh need more coffee!

Mel

Paleface · « **Reply #8 on:** January 30, 2015, 09:19:47 am »

I am right behind you Jill. My EOT 4 is Feb !7th and I will post the results ASAP :-)
Keith

BattleTheBeast · « **Reply #9 on:** January 30, 2015, 10:33:10 am »

So excited for you guys to get the SVR news and Brad's big SVR12 is next week!

How are you feeling 4 weeks post treatment Keith?

I hope you are feeling well and that spark we all lost for a while is staying right there with you!

Mel

Paleface · « **Reply #10 on:** January 30, 2015, 10:52:04 am »

Hi Mel, I,m not 4 wks out yet,but I feel great!!! I have no issues at all :-)
I have my fingers crossed for 4,12 and 24 wks!!!!
Keith

Red Hen · « **Reply #11 on:** January 30, 2015, 11:56:00 am »

Wishing everybody the best with the 4 week marker! It is interesting to me all the details that we are not told to begin with. I guess our treatment providers want us to stay "positive" about whatever treatment we're having. But, really, I wish I had known more about what to ask ahead of time. If we don't ask specific questions then we get no information.

JillLynn · « **Reply #12 on:** January 31, 2015, 11:43:55 am »

So thankful we have each other! "WE" will get us through this together. You are all so important to my curing this virus and I have learned much from each one of you.

WE are the pioneers here in my opinion.....at least with the newer treatments. We help each other so much just by sharing our own treatment journeys. I am so grateful for this.

I'm off to enjoy the cold winters day....sun is shining. Wanted to say HI and I'm praying and thinking about you all! Brad's next...oh yes....praying for you BadBrad. Thinking of a song too!

BattleTheBeast · « **Reply #13 on:** January 31, 2015, 12:08:06 pm »

Jill and Red,

I am so with you on your comments!

The thing is that I don't think many of the doctors really knew much more than us except they are better able to decipher the results from the clinical trials. I wonder if any of the doctors come to the forums, in my opinion they would be learning so much from the real life trials. I still say that those in the trials were so happy to have the opportunity to participate they downplayed anything with side effects.

When you go back and read posts from those on the trials there was real fear about being taken off the trial. People were worried every time they would get a call from the doctors office or the next appointment that if their blood test results weren't just right they would be pulled. Sad as that is, it's reality. It does make me worry for all of us, we came in almost blind in regards to sides and what to really expect. The part that helps is that the participants were closely monitored and nothing serious happened to any of them that we know about. Almost every trial had people who stopped and basically went MIA during them.

It's a risk but for me and all of us. I didn't hesitate to get on treatment even though I didn't know a thing about the medications except that I wouldn't have the sides that those on earlier treatments, the duration was much shorter and the SVR rate was over 90%. Considering I was sick as a dog with Stage 4 Cirrhosis I didn't feel like there was a choice for me. It was either jump in or wait around in misery for it to get worse.

@Keith so happy you are doing so well! It seems like more women seem to be more sensitive to the meds at least from what I have read over the past few months.

Mel

Red Hen · « **Reply #14 on:** January 31, 2015, 07:26:44 pm »

Since I am on a trial ( a 5 year study! ) I can tell you that although I feel lucky to be getting great treatment from my doctors and good phone support from the AbbVie nurse it doesn't affect my reporting on symptoms. The Viekira and Ribavirin are not as easy to take as the Harvoni apparently is, judging by forum posts. When I started this study I had no idea the drugs would be approved. I did know that no one in previous studies had died from taking them. Scared, much? Oh, not me! lol! If my doctors had pulled me off the study I would have been glad they were doing their job. I still don't know if Viekira/ribavirin will cure my HCV in the long run. But, we are all part of getting rid of this disease forever, making better drugs and better prices available. That's pretty cool!

Maxlaw · « **Reply #15 on:** January 31, 2015, 08:30:48 pm »

"But, we are all part of getting rid of this disease forever, making better drugs and better prices available. That's pretty cool!"

Red Hen,

I feel exactly the same way! As I mentioned previously, I am currently in a trial taking the next generation AbbVie drugs (next gen of two of the drugs in Viekira pak), without RBV. I decided to do the trial for a few reasons, one of which was because I would have had to fight my insurance company for treatment since I am 3a without the level of fibrosis that was prioritized for treatment and would have had to have 24 wks of SOF/RBV. But the other, main reason was because I had an opportunity to test a Tx that might be better for GTs 2 and 3 than the current Tx. I don't know if I will achieve SVR 12/24 from these drugs (and, of course, that is my/our biggest worry), but I figured at least my liver would get a rest from being attacked for a while, and at the same time I would be part of something potentially very important for a lot of people! And that feels pretty cool, like you said. There are only 80 people in this particular trial, so I'm really hoping it's successful so they can start phase III later this year with many more patients.

I love reading all the posts here...everyone is so positive and helpful to each other! That's very cool, too.

I wish everyone the best for successful Tx, no matter what the regimen. It's truly amazing the progress that's been made in the last few years and the new drugs that are coming. I can't help but believe that it won't be long until this awful disease is eradicated! And I'm happy to be a very small part of it.

Max

Red Hen · « **Reply #16 on:** January 31, 2015, 09:59:39 pm »

Good to hear from you, Max. Hope you are feeling well and that the drug trial you are on ends up to be beneficial in every way! I agree that the people posting here are amazing.

Billy · « **Reply #17 on:** February 07, 2015, 11:11:15 am »

Thanks for the heads up on the old toothbrush...didn't think of that.

JillLynn · « **Reply #18 on:** February 13, 2015, 01:11:25 pm »

keith....did you get your 4 week post treatment results? I just did mine today (FEB 13)....I'll post as soon as I know.....You too OK?

thinking positive for us both! and for everyone!

Jill

sunrise · « **Reply #19 on:** February 13, 2015, 02:40:40 pm »

Hi Jilllyn
I going for positive you're negative! Hope you are doing well. Hurry up to wait . I have my 12 week post tx labs on March 16th. Best wishes Sunrise

Paleface · « **Reply #20 on:** February 13, 2015, 03:59:06 pm »

Hey Jill,I go tues. feb 17th and it takes about a week to get my results. I will post them here so you get a notifacation :-) Fingers crossed for ya!!! Keith

JillLynn · « **Reply #21 on:** February 14, 2015, 08:56:12 am »

Hi Sunrise.....hope you are doing a-ok too! March 17th huh? I'm praying for you my friend!

Keith....so you are 4 days behind me for bloodwork......I'll be watching for you! fingers crossed for you too for sure!!!

sending love and good feelings to all of you!!! Jill

sunrise · « **Reply #22 on:** February 14, 2015, 07:15:17 pm »

Sending love right back at ya! You all have become like a family. I hope we all recover and can move on in our lives without hcv. Let us know your results Jilllyn . Sending healing energy your way... Blessings Sunrise

JillLynn · « **Reply #23 on:** February 20, 2015, 08:59:56 am »

Hi Sunrise.....and Keith.......as you probably saw on my new post.....DR FORGOT to add the viral load test to my post 4 week test on harvoni.

DAMN!

So I have to go back today or Monday. need to find the time as it's 45 minutes away.

I am not happy about this. Kept waiting and waiting for the results....finally called the DR and sure enough ... they forgot! WE are all human, but this kind of mistake should not happen....in my humble opinion.

I'm still not feeling great. I keep thinking I should...but I just don't. Tired. and just not feeling like I thought I would after being HCV free. Coffee is my new best friend.

Paleface · « **Reply #24 on:** February 20, 2015, 09:30:06 pm »

Wow. I am so sorry. I have been thinking of you and that should not happen your right. I should have my results Tues. or Weds. Keith

JillLynn · « **Reply #25 on:** February 21, 2015, 11:45:04 am »

Will be watching for you Keith....FO SHO!!!!!!

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Author Topic: saw Hepatologist yesterday-4 week post Treatment is a biggie on Harvoni too (Read 22898 times)