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Hep C Discussion Forum -> Post Treatment -> Dr. is keeping it simple,
Post Info TOPIC: Dr. is keeping it simple,
wmlj1960


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Huey wrote:

4-week EOT test sep 3 ed,.

 In other words, 6 days until good news... I'll be waiting for you to post the result. smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Huey


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4-week EOT test sep 3 ed,.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Groupergetter


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longld wrote:

Interesting to me as to how many people have different VL testing done - many way too often - this costs real money while we lambaste the greedy $%&*^#@ at Gilead........you would have thunk that the insurance companies would figure this out.....

I would agree that in many cases including mine, labs are ordered too frequently.  Clearly a baseline needs established and perhaps 6 weeks and eot.  I actually skipped one of my vl tests during tx as I really wouldn't have changed anything.  As time goes by, I'm suspect new protocols with fewer vl tests will become the norm.



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
longld


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Interesting to me as to how many people have different VL testing done - many way too often - this costs real money while we lambaste the greedy $%&*^#@ at Gilead........you would have thunk that the insurance companies would figure this out.....



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62 Yrs Old, CHC Geno 3, Cirrhosis, Kidney Transplant (13 yrs), On Sovaldi/Riba Treatment (24 week) since Feb 01,2014

Viral Load 7M on 1/8/2014,  UND at EOT 7/18/2014
Huey


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in conclusion:  There is no common approach to how to end this new treatments.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Scruffy


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I had the 4 -12  week vl tests while i was on treatment. I did the 24 week vl at my 32nd week. I didn't have a eot test at 48 weeks I had one at eot+7 weeks. My next vl test will be eot+6 months. I was on the old triple tx (incivek)



-- Edited by Scruffy on Wednesday 27th of August 2014 09:10:44 PM

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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Jener


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Since the beginning of my treatment, I was getting tested once every month. I'm a geno 1b and was only taking Sovaldi+Ribavirin for 24 weeks.

I got tested last week at my EOT. I will continue to get tested every month until EOT+12. After that I'm going back to a 6 months checkup routine. 

He did offer me to just get tested again at EOT+12, but I opted to continue with the monthly tests since my chance of "cure" is only in the 60%tile for the combo I took.

 



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Geno 1b, diagnosed in 2005. Started Sovaldi+Ribavirin on 3/5/2014, undetected on 3/28/2014.

Relapsed after EOT on October/2014.

Started Harvoni on 3/2/2015 for 24 weeks.
wmlj1960


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Groupergetter wrote:

My hepatologist and colleagues are very good doc's.  They have shared all my results and charts with my pcp.  I would at least expect her to have reviewed my chart before a visit.  I guess that is too simple?

 I have the exact same circumstances but so far I've been able to make adjustments.

I live in a small semi-rural town without many choices for physicians. So my PCP choice was pretty much made for me, and there has been issue after issue with substandard, un-timely care for some potentially major issues. Good news is that I do live only ~20 miles from a branch hospital of Methodist University Hospital in Memphis TN. Memphis also being where I was born and raised, where my inevitable liver transplant will be preformed, and where I am planning to move back to ASAP. But PCP's in Memphis who are affiliated with the same medical group that my Hepatologist and Infectious disease Dr's are (which is where I desire to select a PCP from), have a very lengthy waiting list to become a new patient, if they are even accepting new patients at all. So I haven't walked out 'YET' nor burned any bridge with my current PCP because even with his limitations and horribly unproductive staff, he still can preform simple task for me and his office is only 3/4 mile from current home. If push comes to shove, and I need to see a doctor for a needy issue other than HCV/HIV related, then either my hepatologist or infectious disease Dr can refer me, and I will be seen by a competent Dr at very well equipped facility stat/according to urgency. No PCP needed.

 My hepatologist is one of some very reputable Dr's at one of the 10 largest advanced liver transplant institutes in the USA, with an excellent reputation. But at my hepatologist appointment today, the chart was telling my Dr that my Tx  Rx's were Sovaldi/Olysio 12 wks, which was the original plan 3 months ago, before my insurance declined to pay for that 'off label' Rx request. So my Dr wound up prescribing FDA approved  Sovaldi/Ribavirin 24 wks regimen. So even with a reputation as good as my transplant center has, mistakes/ oversights happen.

 Back when I got involved with this forum, Isis and others on here kept suggesting, "Get educated about your illness. You can be your own best advocate". I took this suggestion to heart,  so I read post on here and researched via google etc, and I pay attention to what's going on at appointments, to situations that normally should not concern me nor need my attention for quality control purposes. And as was posted in another thread on this forum earlier today, I am not perfect, nor you, nor my noted hepatologist, nor either of our PCP's.

 The trick is to know this issue exist, and to expect it and be armed with the facts when it happens. Then #1, it doesn't piss you off bad enough to walk out. And #2, a correction can possibly be made at that point eliminating such an urgent need to locate a new (competent) PCP, which is proving to be a lengthy process in my case. JMO smile 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Tig


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Huey,

Here's the information you need to reference. It's all explained very clearly, with the rest of the information needed to complete your treatment path. 

SET YOUR KEY TREATMENT DATES

There are 3 key dates along your treatment path: treatment start date, treatment end date, and results date. SOVALDI treatment regimens are either 12 weeks (for genotypes 1, 2, and 4) or 24 weeks (for genotype 3). See How do I take SOVALDI? for details.

Once you know your treatment start date, enter it on the right and select your treatment length. Then you will see your treatment end date and your results datethe first date you can schedule a blood test to determine if you are cured*. Work with your healthcare provider to schedule a test date and any necessary follow-up dates.

*Cure means the Hep C virus is not detected in the blood when measured 3 months after treatment is completed.

http://www.sovaldi.com/starting-treatment#dateTab

Tig



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Tig


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Huey,

Why don't you present your physician with the readily available data that indicates that your protocol requires an EOT +12 Quantatative Viral Load test to determine treatment success? Not EOT +4, then followed up by another test in 6 months! He/She can't deny the facts when they are presented to them. Your insurance carrier should be willing to request it if you explain this to them. My insurance carrier was always on top of the required tests. It determines their actions going forward. 

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Groupergetter


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My hepatologist and colleagues are very good doc's.  They have shared all my results and charts with my pcp.  I would at least expect her to have reviewed my chart before a visit.  I guess that is too simple?



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Huey


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Groupergetter wrote:

My PCP is keeping it simple as well.  Had blood/labs drawn last week in her office for a visit today.  In my chart it showed all my labs for the last 5 months.  She didn't even know I'd relapsed.  I don't think she knew why I was there?  I was so disgusted I walked out forgetting to make my copay. (No it wasn't intentional)    I'll be finding a new PCP tomorrow.  Simple huh?

 Damm. but i am going to and paying more for a spec for this, my primary is a dumb kid, i usually tell him what is wrong with me, What mess's with his mind is when I am right! It took 3 visits just to get them to test for hep c, then when I got the notice from the health dept. i went straight to a specialist.

  Good luck G-G  We are all in this together Keep your stick on the ice. Red Green Show



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Groupergetter


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My PCP is keeping it simple as well.  Had blood/labs drawn last week in her office for a visit today.  In my chart it showed all my labs for the last 5 months.  She didn't even know I'd relapsed.  I don't think she knew why I was there?  I was so disgusted I walked out forgetting to make my copay. (No it wasn't intentional)    I'll be finding a new PCP tomorrow.  Simple huh?



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Huey


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That is what he said, the test i take next week, if it is und then I Waite 6 months, if still und then 1 year,  remember I am a 3 so what is a 12 week tx takes 24 , so the testing is also longer.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Isiscat2011


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Simple for whom?  Assuming it is UND at 4 weeks I would be chomping at the bit to get a 12 week VL check.  You will have to wait another 5-6 months. Really?  I think you can negotiate a better deal with your doc.  biggrin

Contrary to wishful thinking, which I know nobody here engages in, 4 weeks UND is not considered SVR even with the magical new DAAs (or perhaps especially with them).  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Huey


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That is what the Doc told me today, we are keeping it simple, 4-week after EOT -Test, 6 months later -Test, 1year test end of story. If something comes up detected he will call./ That is it.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
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