Great news Mac! Rob has helped a lot of people on the forum in many ways, not the least of which is the positive attitude he's maintained throughout his own tx. It's contagious in a good sense and I'm glad he and the rest of us were there for information and encouragement. Good luck!

Hey Mac, congrats on finishing your treatment. 

 Good to get it behind you.  Hope and pray you get SVR. 

Dzdayscomin wrote:

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Fireman Rob wrote:

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Hi Mac,

I'm glad to see my posts helped you. I'll keep my fingers crossed for you when we're doing our 12 week EOT labs two weeks apart. Welcome to the forum. I'm so glad you decided to post. Good luck!

-Rob

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 Can always count on a Fireman!

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 Amen to that Duane!! God bless all First Responders  

Tig

Fireman Rob wrote:

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Hi Mac,

I'm glad to see my posts helped you. I'll keep my fingers crossed for you when we're doing our 12 week EOT labs two weeks apart. Welcome to the forum. I'm so glad you decided to post. Good luck!

-Rob

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 Can always count on a Fireman!

Hi Mac,

I'm glad to see my posts helped you. I'll keep my fingers crossed for you when we're doing our 12 week EOT labs two weeks apart. Welcome to the forum. I'm so glad you decided to post. Good luck!

-Rob

Hi Mac,

Welcome to the forum! I'm glad you introduced yourself, finally! I wish you had spoke up sooner, but am glad you were able to find help and advice along the way. Rob has been a great help to many members here and we all hold great hope for his future and yours! The protocol you're finishing is an excellent one and with your RVR, the chance for SVR is highly likely. Your future is very promising indeed! I know your time left in Tx is short, but I hope you stay around and let us share in your successes. Let us know a little bit about yourself when you get a chance and good luck!

Tig

This is my first time to post and I wanted to thank everyone for the great information and encouragement I have received from this site. I have been reading along since my first TX and my last S/O dose is 09/16/2014. My SX were the worst, the first 4 days of TX. It was sooooo helpful to follow Fireman Rob, who was 2 weeks ahead of me, and many others. GT1A late 70's. Week #4 UND. I will now wait for 12 and 24 week tests. Truckin' much faster than before.....  Best of treatment to all.......!

Outstanding Sarabelle! I am coming up on 6 months post tx with an appointment on September 25th.  Once you clear EOT + 4 weeks still UND, the chance of relapse is very small. After that point, confidence builds that you will reach SVR and the months start flying by. The weight is definitely lifted and stress starts melting away. Good luck!

Congrats Sarabelle -- you're heading in the right direction!

Sarabelle wrote:

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6 wks off tx and still UND! Whoooohoooooooooooo! I still can't believe it! Doctor wants to test three months post tx and final test at 6 months post tx.  6 months seems a long time for the final test... But oh well. I am still UND now while off the meds. I am so grateful and blessed right now I want to jump for joy and thank my lucky little stars ;) I spent so many years of my life worrying and stressing about the future and my health. Today I feel like a weight was lifted. Yes, I know it's not SVR time yet....but it feels pretty dang close :)

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Congratulations   YEEEEEEEEEEE HAAAW, sounds like you're almost home free.  What a blessing.  Happy for you.  

6 wks off tx and still UND! Whoooohoooooooooooo! I still can't believe it! Doctor wants to test three months post tx and final test at 6 months post tx.  6 months seems a long time for the final test... But oh well. I am still UND now while off the meds. I am so grateful and blessed right now I want to jump for joy and thank my lucky little stars ;) I spent so many years of my life worrying and stressing about the future and my health. Today I feel like a weight was lifted. Yes, I know it's not SVR time yet....but it feels pretty dang close :)

Finbar, If I were you, I would drive by a fire station that has EMS capabilities (most do) and tell them you are experiencing heart palpitations. This way, you will not encounter any fees associated with the test that they will administer with the portable EKG machine that they all carry. If it comes back normal at least that will help calm your nerves, but I would still seek out my doctor as Isiscat suggested. 

Isiscat2011 wrote:

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Finbar wrote:

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Hi can you tell me if you get really sweaty at night with heart palpitations , I was fine a few weeks ago  then things went south now I have insomnia and body aches and I'm up all night with the chills Thanks

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Hi Finbar:

You should contact your doctor.  A message board is not intended to be a substitute for professional medical advice or care.  Comparing side effects has limited value because we are all different.  Any drug can cause serious side effects and you should always err on the side of caution when using experimental drugs. The Sovaldi/Olysio combo is off-label because it has not been sufficiently tested to gain FDA approval for use together.  Hopefully these are transient and non serious side effects but I would check in with my doctor. Best regards. 

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Isiscat is correct about contacting your doctor. Since you are a liver transplant recipient, your issues may be different regarding how you are monitored during tx and what sx are significant compared to the transplant naive members on this forum who have taken S/O.  Your sx, assuming they are from tx, seem a little more significant than most, although I wouldn't draw any conclusions from that observation.

Finbar wrote:

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Hi can you tell me if you get really sweaty at night with heart palpitations , I was fine a few weeks ago  then things went south now I have insomnia and body aches and I'm up all night with the chills Thanks

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Hi Finbar:

You should contact your doctor.  A message board is not intended to be a substitute for professional medical advice or care.  Comparing side effects has limited value because we are all different.  Any drug can cause serious side effects and you should always err on the side of caution when using experimental drugs. The Sovaldi/Olysio combo is off-label because it has not been sufficiently tested to gain FDA approval for use together.  Hopefully these are transient and non serious side effects but I would check in with my doctor. Best regards. 

Hi can you tell me if you get really sweaty at night with heart palpitations , I was fine a few weeks ago  then things went south now I have insomnia and body aches and I'm up all night with the chills Thanks

no one is updating this topic ...

Congratulations TC! Good luck with your upcoming HCV free life! Now it's time to relax and enjoy your job well done 

Tig

tgcd78 wrote:

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Just took my final S/O dose.  What an easy 12 weeks it has been but I am happy to be done.  Hopeful to resume a normal Hep C free life!

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The Sx have been fairly light for most of us on the S/O regimen, particularly without Riba. As fortunate as we have been with our Tx protocol, let's hope that the new DAAs to be approved this year and next will also be easy to tolerate and even more effective.

Onward to SVR and a Hep C free life! Best of luck to you!

Just took my final S/O dose.  What an easy 12 weeks it has been but I am happy to be done.  Hopeful to resume a normal Hep C free life!

Thanks Gator. It is great!

Outstanding Pep! A great day for forum members slaying the dragon!

Great day for both of us. I got the same call today after 4 weeks S/O.  

Just got my call from the clinic. Undetected hep c after 4 weeks of S/O.  No side effects other than low tolerance to heat and infrequent headaches. Feeling blessed!

BraVO, TOM!

Great news Tom!!!

Good going Tom!!!

The doctors office just called.  My 4 week (from start of treatment) results came back undetected!  

Quick follow-up: the outside lab results came back, and I'm now showing up UND. This was done using the COBAS TaqMan 2.0 test (which has an LLoQ of 15). The previous test was the Abbott RealTime HCV (which has an LLoQ of 12). While both tests advertise the same numbers for LLoD, if you read some of the documentation and studies, they actually detect the virus most of time at levels as low as 2.5-5 IU/mL, even if they're not able to quantify it at those levels.

Here are my updated results: 

Pre-treatment: 4.3 million
SOT + 3.5 wks: 89
SOT + 5.5 wks: 18
SOT + 8 wks: <12 DETECTED (Abbott RealTime)
SOT + 9 wks: <15 NOT DETECTED (TaqMan 2.0)

Based on these results, my doctor decided we'd stick with 12 weeks.

Fireman Rob wrote:

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I chose to stick with my doc's VL test plan of SOT, EOT, 12 weeks EOT, and 24 Weeks EOT. The tests after EOT are going to be very stressful but I can't worry about that. 

After starting tx, I haven't worried about being UND because it doesn't seem to really play into SVR rates at all.  There are people who have relapsed and were UND at 4 weeks. Hopefully we all achieve SVR sooner than later and those waiting for S/L get it quickly.

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This does make sense from a clinical standpoint because as you say becoming UND early doesn't appear to correlate to SVR.   With Sovaldi UND is almost guaranteed; the real question is how long UND will last once tx ends.  

Frequent testing can cause unnecessary stress too.  People can become too hung up on the VL reading and drive themselves crazy trying to predict the outcome.  That's probably what I will do--drive myself crazy.  Won't be the first time.  lol

pierre wrote:

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-- Falcon: I'd do my darnsdest to get the tx extended to 16 weeks. Good luck.

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Just to follow up: we decided to test again at an outside lab to confirm the detected result. So this will be at almost 9 weeks. I'm hoping all it needed was that extra week to get to UND. But if not, trying to get insurance to cover an additional four weeks definitely seems like the best option.

Turns out I am getting a test at SOT+4 1/2 weeks.  I got a call to go back in - the vial was not properly frozen.  Again...

I chose to stick with my doc's VL test plan of SOT, EOT, 12 weeks EOT, and 24 Weeks EOT. The tests after EOT are going to be very stressful but I can't worry about that. 

After starting tx, I haven't worried about being UND because it doesn't seem to really play into SVR rates at all.  There are people who have relapsed and were UND at 4 weeks. Hopefully we all achieve SVR sooner than later and those waiting for S/L get it quickly.

pierre wrote:

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Happy update: Results of 12 weeks post TX blood work are in: virus undetected, so UND can be changed to SVR. Hurrah! S/O can & does slay the dragon. What a relief. Slept well, woke up at six & just lay there thinking through the last 3 years & that silly old line came into my head: This is the first day of the rest of your life. So it is. Emailed my son, told him to drink a glass of champagne to my health, as I no longer do that... Will in fact keep to the same healthy low-glycemic diet  plus exercise schedule that helped me prepare & wait for S/O. My thanks to all of you on this list too: it has been a great help to check in & get encouragements  & advice over these months. 

 

Pierre (ready to go on a solid hike today!)

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Wonderful news, Pierre!  You did it.     By all means enjoy your hike.  This will be a hike and a day to remember.  The day you knew you kicked the dragon's ass.  Well done.

I would want to test at EOT + 4. If you are UND during tx an EOT seems superfluous.  

Looks like he wants 4 VL checks total.  

How about this: SOT, SOT+6, EOT+4, EOT+12.   My thinking is that you are even more likely to be clear at 6 weeks than 4 which would render the 8 week unnecessary.  Then you can save your final two for EOT 4 and 12. 

Actually, 8 weeks in is probably best if you are limited to a certain number, but few people are willing to wait that long. 

I am 4 weeks into the S/O treatment.  Waiting for the test results now...

I had a discussion with the doctor about when to check V/L.  He wanted SOT, SOT+4, EOT, EOT+12. 

We agreed to test at SOT+8, but only if SOT+4 is not undetected.

I also told him I didn't see any point to checking at EOT.  We should move that to EOT+4.  Sound right?

Hey Pierre

"All Right" , Super congrats to your 12 weeks EOT UND SVR

The news just seems to get better

matt

Congrats Pierre!

Pierre, fantastic!! I am so happy to hear the success stories!!! 

Sarabelle, congrats on completing treatment!!! Keep us posted!

Pierre,

That's awesome! I'm so happy for you and it's great to see this combo does slay the dragon. Thanks so much for posting your outstanding news!

Outstanding Pierre on reaching SVR!  It does give new meaning to "the first day of the rest of your life". I hope your son enjoys the glass of  champagne to celebrate your good health! Stay in touch.

Sarabelle, congratulations on being UND at EOT! Pierre's son will be called on to have a second glass of champagne for your health in the near future!

Happy update: Results of 12 weeks post TX blood work are in: virus undetected, so UND can be changed to SVR. Hurrah! S/O can & does slay the dragon. What a relief. Slept well, woke up at six & just lay there thinking through the last 3 years & that silly old line came into my head: This is the first day of the rest of your life. So it is. Emailed my son, told him to drink a glass of champagne to my health, as I no longer do that... Will in fact keep to the same healthy low-glycemic diet  plus exercise schedule that helped me prepare & wait for S/O. My thanks to all of you on this list too: it has been a great help to check in & get encouragements  & advice over these months. 

Pierre (ready to go on a solid hike today!)

Just a quick update to all....EOT was 7/29/14 and UND.  I will be tested in 4 and than 12 weeks for SVR. Side effects during tx were brain fog, fatigue, anxiousness and headaches. Switched to taking the meds at night time after day 1 and all side effects disappeared....so really can't be sure if they can be called side effects, as they only showed up the first day I took the meds...maybe All in my head :)   I will keep you all posted. Cheers!

-- Falcon: I'd do my darnsdest to get the tx extended to 16 weeks. Good luck.

-- Thought the following article on the price and availability of S/O could be of interest to the group:

http://america.aljazeera.com/opinions/2014/8/patent-hepatitiscsovaldigileadsciencesmedicaid.html

p.s. 3 days to go until 12-week-post-tx results should be in. ever so slightly nervous despite excellent results so far. will keep ya'll posted.

Pierre

36 yrs old, F3, treatment naive.

My doctor supports extending, but it may be difficult to get my insurance to cover it. It took 3 months of appeals to get this combination approved in the first place.

Iiscat2011 wrote:

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A kangaroo, a panda, and now a koala bear.  Too cute!!  Your grandson really seems to love the animals, Malcolm.   He looks very comfortable with them.

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 I'm starting to think Malcolm is a zookeeper, ...a really smart zookeeper tho....

Falcon,

It would definitely help to know if you're Cirrhotic and if you're treatment experienced or not? There are people who have relapsed after being UND at 4 weeks on this combo but if you can extend, I would extend in a heart beat just to be sure. Riba doesn't seem to make much difference according to the limited data we have.

Your chances of SVR are great either way, especially as a 1b. That said, if my insurance would cover another month, I would jump on it, no question! Good luck.

-Rob

A kangaroo, a panda, and now a koala bear.  Too cute!!  Your grandson really seems to love the animals, Malcolm.   He looks very comfortable with them.

Hi Falcon,

Welcome to the Forum. It would be useful to know your age, liver status and whether you are Rx-naive. The Cohort 1 Cosmos results were only for 14 patients, with one relapse. As you say, these are very small samples.

I wish they would come up with a RVR definition for Sovaldi. Every other HepC treatment has had one.

I'd definitely want to extend treatment to at least 16 weeks. All the best.

Hi Falcon:

Extend.   What is your prior tx history?  Do you have cirrhosis?