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Author Topic: What to Expect from Our Doctors after the 12 weeks on Harvoni?  (Read 13048 times)

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Offline Roger

  • Member
  • Posts: 171
What to Expect from Our Doctors after the 12 weeks on Harvoni?
« on: January 12, 2015, 04:37:36 pm »
I am going to send my hepatologist an email regarding what we are suppose to do at the end of the 12 weeks of Harvoni.  I would love input here, please.  What "should" he do?

Should the blood test be as extensive as the FibroSure blood test?
I'd like to know how "everything" looks, not just viral load.

If all I need is the blood test and no sit down with him, great - otherwise,
what should one expect if there is a sit down meeting?

I'd also like to talk about a future followup schedule.  Ideas on this anyone?

Thanks!
Logged
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline Mike

  • Member
  • Posts: 999
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #1 on: January 12, 2015, 05:19:49 pm »
I don't think you would need a Fibrosure - just the normal blood work i.e., CBC, liver panel and viral load.

To confirm an SVR12, you would need another VL 12 weeks post-treatment (though this could also be done at 24 weeks).

Once a SVR is determined (meaning you're cured), follow up blood work should be completed at the 1 year mark. A Fibrosure might be useful at that juncture (if heavy scarring was noted prior to treatment) as it takes the liver about 6-9 months to rejuvenate. Note, however, the liver may or may not regenerate depending on factors such as level of scarring, presences of other pathogens impacting overall liver health.

This is my schedule minus the Fibrosure, as I only had an F2 score confirmed with a biopsy and there is really no need for this test for my clinical picture.

Best wishes, Mike

Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Roger

  • Member
  • Posts: 171
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #2 on: January 12, 2015, 05:41:55 pm »
Thanks Mike. Do these panels include glucose, kidney function and ferritin levels?
Logged
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline dragonslayer

  • Member
  • Posts: 873
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #3 on: January 12, 2015, 05:47:11 pm »
Mike, if there were minimal liver damage determined by biopsies prior to treatment and SVR12 were achieved, could annual blood work such as might be normally ordered by a PCP during a complete physical suffice rather than follow up visits with the liver specialist?
« Last Edit: January 12, 2015, 05:49:26 pm by dragonslayer »
Logged
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Mike

  • Member
  • Posts: 999
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #4 on: January 12, 2015, 05:55:10 pm »
@ Roger:

No. You might have to ask for a A1c glucose test. Kidney function tests include blood work measuring creatinine, GFR and BUN levels, as well as urine tests measuring protein and microalbuminuria levels. 

If you have these run, you might as well have a lipid panel completed for good measure.

Best wishes, Mike
« Last Edit: January 12, 2015, 05:59:48 pm by Mike »
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mike

  • Member
  • Posts: 999
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #5 on: January 12, 2015, 05:57:33 pm »
Quote from: dragonslayer on January 12, 2015, 05:47:11 pm
Mike, if there were minimal liver damage determined by biopsies prior to treatment and SVR12 were achieved, could annual blood work such as might be normally ordered by a PCP during a complete physical suffice rather than follow up visits with the liver specialist?

Yes. If everthing is normal, your GI will probably cut you lose and see you on an as needed basis.

Your PCP should be able to handle it from there.

Best wishes, Mike
« Last Edit: January 12, 2015, 05:59:22 pm by Mike »
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Roger

  • Member
  • Posts: 171
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #6 on: January 12, 2015, 06:31:44 pm »
Mike,
I haven't had a urine test for years.  In 2002 I was diagnosed with kidney cancer, and had plenty of them for a few years - but not since.

Would a urine test for this HCV eradication with Harvoni be a good idea?  If yes - why?
Logged
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline kate0b1

  • Member
  • Posts: 293
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #7 on: January 12, 2015, 06:57:55 pm »
Wow Mike, I had't even thought about not seeing my GI guy anymore after tx, but I guess the goal is to not need him anymore right. Thats going to be weird.

kate
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Offline Mike

  • Member
  • Posts: 999
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #8 on: January 12, 2015, 07:25:51 pm »
Quote from: Roger on January 12, 2015, 06:31:44 pm
Mike,
I haven't had a urine test for years.  In 2002 I was diagnosed with kidney cancer, and had plenty of them for a few years - but not since.

Would a urine test for this HCV eradication with Harvoni be a good idea?  If yes - why?

No. It's the viral load (RNA Quant) and liver function that counts.

I'm a diabetic with HBP and the tests I mentioned (glucose and kidney function) are run routinely on me. I don't think they're protocol for HCV.

Best wishes, Mike
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mike

  • Member
  • Posts: 999
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #9 on: January 12, 2015, 07:30:44 pm »
Hi Katie,

I mentioned this to my GI: "Sovaldi is going to put you out of business." And he smiled and said, "After all the heartache I've seen with Hep ...patients doing 72 weeks of INTF+RIBV, decompensated cirrhosis...I'll be glad to see that day."

I shook his had and told him I'll see him in a year!

Best wishes, Mike
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline kate0b1

  • Member
  • Posts: 293
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #10 on: January 12, 2015, 07:42:53 pm »
omg that brings me to tears, I love my doc, he has been my champion through this. I will feel sad/happy to break up with him.

kate
Logged

Offline Mike

  • Member
  • Posts: 999
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #11 on: January 12, 2015, 07:51:33 pm »
@ Katie,

I know what you mean. I've been with my GI for 15 years. From a liver biopsy, through a failed clinical trial of 48 weeks of PEG+RIBV, and years of looking at research studies together.

I was glad I could look him in the eye with confidence, shake his hand and thank him for giving me my life back!

Best wishes, Mike
« Last Edit: January 12, 2015, 07:53:09 pm by Mike »
Logged
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Amj1951

  • Member
  • Posts: 118
Re: What to Expect from Our Doctors after the 12 weeks on Harvoni?
« Reply #12 on: January 13, 2015, 08:25:25 am »
Quote from: Roger on January 12, 2015, 04:37:36 pm
I am going to send my hepatologist an email regarding what we are suppose to do at the end of the 12 weeks of Harvoni.  I would love input here, please.  What "should" he do?

Should the blood test be as extensive as the FibroSure blood test?
I'd like to know how "everything" looks, not just viral load.

If all I need is the blood test and no sit down with him, great - otherwise,
what should one expect if there is a sit down meeting?

I'd also like to talk about a future followup schedule.  Ideas on this anyone?

Thanks!

Roger, I hope you'll keep posting as you finish so we all know how you are. I know you really gave me some encouragement and I appreciate it! : )

I am curious though I saw where you mentioned you've not done a urine test in years and it surprises me because you have one kidney too. I know our circumstances are different, but do you not see a kidney specialist once a year? I have done soooo many urine tests in my life I thought it was a normal thing for everyone. Go to the doctor, pee in cup! I do it at the kidney doctors office and each time I see my Internist. I know now they do it because I have a issue with leaking protein, but even before that, it was always 'make sure you pee in the cup'!

Anyway, how are you feeling? Getting excited to be at the end of treatment? I hope so : )
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