Hep C Discussion Forum

Just my opinion - when you are on a "triple" (like Vosevi), all 3 component drugs are vitally important, the NS5A (VEL), the NS5B (SOF), and the NS3/4A (VOX) were designed to work together to attack the virus fully from every avenue that this triple is capable of doing. The VOX component is a very powerful drug, just as the SOF and the VEL are in Vosevi.

To be on a triple and then to switch to a lesser drug (Epclusa being a "double only" SOF/VEL) does not make sense - especially given the cure your labs are showing.

Don't take sof/vel just because you happen to have it sitting on your shelf!

What makes you think you need further treatment anyway?  

If you thought yourself "not" cured, then why would you not be considering taking Vosevi again between week 16 to 20!

Go with what both your docs think. 

Your labs look great. C.

Mak,

You have until Jan 2 to have a good consult with both of your docs - ask them about your idea of taking 4 additional weeks of sof/vel, after taking 16 weeks of sof/vel/vox.

I am guessing NEITHER doc will instruct you to take the lesser sof/vel (to take between week 16 to week 20).

Why do you even have the sof/vel sitting on your shelf, being that you obviously bought yourself the sof/vel/vox to extend your therapy from 12 weeks to 16 weeks. Why would have bought yourself this other bottle of only sof/vel? Just wondering. C.

Mak, 16 weeks of VOSEVI is equivalent to a very cold day in hell.   The fire will be out,relax and enjoy the rest of your life HCV free!!    RC

I dunno.  "One day at a time" is not a treatment plan.  A plan is an ongoing series of steps to be followed through.

I'm echoing lamassu on this one - though I'm sure you will do whatever you think is best.  

I would stick with the advice of my specialists and scholars, some of whom are right here IMO.

 

Hi Mak,

Please listen to Tig. It makes no sense medically to finish treatment with Vosevi then continue with generic Epclusa: that is a step backwards. Vosevi was designed to treat patients who relapsed after treatment with other DAAs due to resistant variants of HCV. Vosevi is the last resort for treating difficult cases of HCV. I have never heard of anyone taking more than 16 weeks of Vosevi. I can confirm there is no generic Vosevi being licensed by Gilead at present. Talk to your doctor please. Best wishes for a durable SVR!

I end my treatment with box 4 that I bought myself - box of Vosevi the 2nd of January.

Starting from the second I am thinking of doing more with Velpanat - YES  I Confirm this is generic Epclusa.

 

 

Hello, thank you for keeping thumbs for me. I had to stop thinking for a while and work.

Above I posted my results - very interesting, because 15 of Nov I had 2 blood tests, one I did privately and the same day at my old doctor where I was doing unsuccessful Clinical trials (but it is ongoing for 5 years, to monitor patients, they from Abbvie say that taking Vosevi does not exclude me, strange but true) , so at least I had a Fibroscan for free. A few hours later I was undetected again.

 

My last test was qt the end of week 12 and is UND.

Yes, I bought myself the 4th box of Vosevi and am still taking it.

 

Here my question - I will ask my Doc (sorry to say but I have not contact with my official doctor, only with a nurse, who is aware of everything and is reporting to him) - I HAVE at home (because I was not sure if I ever get the 4th box of Vosevi) Velpanat for India which is (Sof + Vox).  I do not have any (I think any, maybe a few tiredness) side effects since I started my treatment. Maybe, if I already have it it is good to make it one more month longer with the Velpanat?

 

Are there any reports how long generally you can take the drug and if it can be harmful for other things? If it can take my chance bigger why not?

 

 

 

2ndTreatmnt  geno 1b- Vosevi 12 weeks - SOT Sept 12 2018 to EOT Dec 5 2018. Pre-treatment - VL 1.4 mil, ALT 45, AST __, ALP 69, GGT 90, bilir 16.

 2 weeklabs:VL 49, ALT 26, AST __, GGT 53. Bili 21, 

4 weeklabs:VL <15, GGT42 other normal  

5weeklabs:ALT 17,AST 27, Bili 11.8,  ALP 68, GGT 36 ... VL 12,   

6weeklabs ALT 19, AST 26, Bili 16,20, GGT35, VL<12

7week GGT34, ALT 19.1  AST 26.4, Bili 17,9 , VL<12 

5 Nov Official test UK undetected 

8week (6nov) GGT31, ALT15.6, AST22.4, Bili 16.6, UNDETECTED

 

15 nov after the beginning of week 10

GGT 27, Bilirubin 23,30High,  ALT 16.5, AST 23.7, VL<12

 

15 Nov a few hours later UND

 

19 Nov ALT 17.10, ast 26.5, ggt28, bili 17.5, UND

 

 

3 DEC 12week ALT20,7. AST24,3, GGT 27, Bili 12,10, UND

-- Edited by mcmaklin on Sunday 9th of December 2018 07:21:21 AM

Wow, RC - something to see alright, your journey being written up! Thank you for sharing your journey with us, and this! Unreal, you must have brought us the most "hot off the presses" early-info release, as i note it says " ... Vol. 0, No. 0 ... "! Thank goodness you got VIP treatment then and now too! No one deserved a better outcome than you. : ) Very interesting what they chose to determine about you in regard to your IL28 status/prior failures/NS5A and 5B.

Coincidentally, there was just recent article around here that was also speaking to "response guided" therapy.

I will forever thank our lucky stars for Polaris 5. C.

 

What you have been though is incredible.  Trudging through all of those lows is more than commendable.  Thanks for the update. I was wondering.

Congrats on your "free"s.  You have certainly earned it.  The soul is mighty.  I'm glad you are still checking in.

Hey Mak, 

You've been quiet for the last 8 days? Hope you read the last post and are feeling OK and doing OK?

Check in when you can.  C.

.

Canuck wrote:

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Good to know Mak.

With your "day one" SOT on Sept 12 - I must have counted the days wrong to figure week 9 - if, as you count, Nov 19th is almost the end of your week 10.  

While you are in Poland (over Nov/Dec you mentioned), will you be relying "exclusively" on your old doc there and using the lab there? 

You DO (at least) have to come back to the UK, to your official doc, for your 12 week EOT labs (Dec5)? don't you?

And, as you are adding an additional 4 weeks of Vosevi which you will buy yourself, which of the two docs (and labs) will be following you until that is completed (a total 16 week EOT date would be Jan 2?)? Or, will it be as now, that both docs and labs will be seeing you over week 12 to 16?

Virus virility, course length and treatment drug efficacy is already pretty well predetermined. Efficacy is backed up by all the extensive trials done, before Vosevi (or any DAA) comes to market. Gilead pre-determined that a 12 week course length was an ample, sufficient kill (generally "over-kill") to effect cure. My trial was 8 weeks, other trials were 12, 16 weeks, and there were other treatment length studies. Gilead went to market with data on their side that 12 weeks was the length the course was to be. Your virus was doomed (as far as I am concerned) right from the very earliest of your labs, when your VL and ALT crashed, the rest of the course is just required/necessary kill, over-kill/insurance. Your 16 weeks is definitely lots of kill. Any infinitesimal VL lab blips encountered - or "counted" (detected) part way into the 12 weeks, could be considered mortally wounded vestiges of virus incapable of surviving, multiplying - just my opinion. You will likely feel further insured adding 4 weeks, despite the evidence of your cure thus far.

BTW - what your old doc was mentioning ... I too would see little benefit to adding riba to vosevi (as was already shown in the trial datas).

Will you have to pay a lot for the additional vosevi? Did you ask Gilead about subsidy?

I am glad you are starting to feel a little bit better about things. Too bad for all these difficulties. C.

---

 

19th it was almost the end of week 10. I start week 11 the 21st. Yes it was sequence not found. Yes this was Monday the 19th I am simply wondering why those things happen and where could this virus be again for a while in my blood from. What a strange mechanism is it. And what if I stop the drugs - Would it be able to be killed without drugs at this stage? Apart from that no one is testing himself that often. My second doctor prescribed Vosevi Says that is not very surprised because they know from clinical trials those things happen when there were tests every week. She is also saying there would be no purpose of adding Riba. I feel much better at least I know the treatment works. Hey! Nice Mak, We sure like to see those UND's (or in your case sometimes called "sequence not found")! Your ALT and other bloods have been lookin mighty fine for quite some time now too! C. PS - so this VL blood was drawn Monday, Nov 19?, making it just a day or so shy of the beginning of week 10, or in other words, just about at the end of week 9? How are you feeling about things, as they have transpired? C.

Now that's what we like to hear!  Great news and big sigh.  Thanks, Mak.

mcmaklin wrote:

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i wrote everything in my previous Messages. November and December I spend in Poland- I dos tests privately.

I have news : from this Monday undetected again - no virus. 

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 yay

I missed something.  Why are the reports in Polish?  Are you in the UK.  

I'm confused.

 

Ditto that, Mac.

We just want you to be well. HepC free is a good place to be.

 

Hello, thank you again. So to clarify I am replying below.

Blood test in my official treatment place is on treatment start, 2 weeks, 4 weeks, 8weeks. These official tests but 8 weeks I have already done. All other were at the same laboratory in Poland. The more the test at week8 was UND both in UK and in Poland a day after (they name it Negative). There were no translations of documents, but UK tests I know only what my nurse told me by mouth.

They did agree if I want I can buy another box of Vosevi myself but they cannot prescribe it in UK, so if I want from a different country they will monitor me.

I am replying more below:

Canuck wrote:

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Tig and Mak,

Yes, I too have always found it somewhat difficult to follow your labs in an easy straightforward fashion, this is why lately i started asking you to then write it out more fully or "word for word" what your labs were saying, but, better yet to post labs in their entireties - so, i thought that a very good suggestion Tig made, to copy/paste/post the actual lab reports in their entirety here. Semantics - words count for a lot, even the smallest words, language left out, lab-speak/medical terminology (from place to place) can hold subtle or significant nuances which unfortunately  can vary interpretation greatly, especially in this case of using two completely differing labs.

As I wrote the lab is mostly the same.

You kindly posting these 2 results, still does not easily clear up the matter. I am wishing i was fluent in Polish! With missing bits, and language barriers, it is still difficult to piece together what BOTH labs found (exactly and when). It would be far easier if we had ALL of your labs sitting in front of us for us to sift through and view ourselves, and if we could read them in English! I too am curious to know where both of these labs are located - perhaps both labs are in the UK and one (or both) provides you results in Polish (for your reading convenience)?

No translations

I did just want to stress that when you are using two different labs you can only compare the results from "lab A" with further results from "lab A", and when looking at the results from "lab B" you can only compare lab B's results to further results from "lab B"- you cannot compare lab A results to lab B results, nor B to A - at this point I still cannot be sure that you have not been comparing A to B at some points.

As I wrote earlier, A results are from UK, and there were only a few, all other were from another laboratory

Aside from that, I think you have indicated you were UND (with your official doc and his lab)

and not only because a day later in Poland

as of end of week 8 on Tuesday Nov 6, but, that via a different lab, your concern is that you think the second lab said that you have gone from "less than 12 - sequence not found" Correct - which means Negative, what they name it, I know it is the same as UND

on Nov 6, to next "less than 12 - sequence found" on Nov 15. YES

(If your end of week 8 was on Nov 7 and your end of week 9 was Nov 14) - then, at both labs, you were UND (and/or close to it) around the end of week 8 - so, ARE YOU AND YOUR DOC SATISFIED WITH THAT? -

I was talking only to nurse, they were not doing any meeting with doc, she was pleased to tell him and take my results I did in anohter country and she took even a copy of it, so the doc knows that I was und late. Anyway a few days later they told me that the only way to make it longer if I want is to buy it myself. In UK it is not possible to buy

if you were, for all extents and purposes, UND (or next to UND) at end of week 8, then are you then still going to pursue longer treatment just on that basis? 

I am definitely going to buy more Vosevi myself, but waiting before spending those money for the test result that will arrive tonight.

 

Regardless of how we all may be reading into these labs,  WHAT DID YOUR OFFICIAL DOC SAY TO YOU??, did he feel an additional 4 weeks of Vosevi was "not required"? - that he thinks you are being cured without adding treatment time ... did he say this???

NO NEWS - they told me that they (the nurse) cannot dissallow me making my treatment longer. I must tell them only. 

Did he clarify that your VL (with him and his lab) is UND as of the end of week 8, and did he explain to you what the other labs VL results mean (their significance)?? Did he say he will not/can not extend your treatment?? - and that if you wish it extended, you would just have to get the vosevi yourself and he would monitor you?

I certainly hope you discussed ALL of these things with your official doc, you needed his opinion on the matter.

My other DOC from Poland who was testing RAVS after my failed trials in Poland says that yes it would be good to make it longer with the Vosevi and gave me prescription

It is sounding as though you have already decided to go ahead and get the extra 4 weeks of Vosevi, is that not so?, so ... then, why are we still debating how to interpret the timing(s) of your UND's and/or the importance of being detected at less than 12?

YES I have already decided, I am only waiting for Viral load from yesterday, I hope it is right what I am doing, I hope it will be UND or at least <12 that they are not able to measure how many. Otherwise I think there would be no purpose to make my treatment longer. I hope now it is  clear what I am saying. And trust me I have not mixed anything. I hope it was one struggler left in the meantime hidden in my liver that will be killed very soon. I do not know any person doing labs so frequently so how can we know what if this thing does not happen.

 

 

C.

-- Edited by Canuck on Tuesday 20th of November 2018 03:25:26 AM

---

 

-- Edited by mcmaklin on Tuesday 20th of November 2018 10:58:05 AM

-- Edited by mcmaklin on Tuesday 20th of November 2018 11:02:33 AM

I am treated in UK but as I usullay spend Nobember and December in Poland it was very Easy for me to do the test in Poland myself.

I did my best to translate those reports and want to know why on the 6th of November, they performed the PCR utilizing a SERUM sample, which was undetected. Then on the 11th of November, they used a PLASMA sample that had the presence of the preservative EDTA in it? Plasma is spun down, serum is not. Is it possible they retested an old sample? Clearly the results of the test on the 11th say they found <12 with the presence of Hep C RNA. I question the validity and accuracy of those results as written. Of course I’m not a doctor or a lab technician, so I would request a retest and see what that result is. Outside of that, I can’t provide any other opinions as to why these results came back differently. Do your best to speak with the same people each time and have the bloodwork drawn at the same lab.

One other question. Are you being treated in the UK or Poland? I thought you were in the UK. Why are your results in Polish? I’m confused...

Mak (& Hoodie),

Every viral load test (PCR) can say <12 IU/ml when the results are less than 12 and too low to quantify. That number alone does not provide clear evidence that the viral count is undetected, however close. That is why we always ask, "Does the report say <12 IU/ml UNDETECTED or does it say <12 IU/ml DETECTED". You can still have a few active stragglers when the test returns <12 IU/ml. The PCR is sensitive enough to pick up those few stragglers, but isn't sensitive enough to count them. That's when you see it come back <12 IU/ml DETECTED. Not uncommon to see that. What typically occurs is they perform another test in two weeks and it almost always comes back UNDETECTED. These people need to figure it out, before you go out and purchase many thousands of dollars worth of medication you may not need. 

Mak, if you've got multiple people reviewing your test results and they keep bouncing back and forth with different results, you need to ask for the same person that gave you your previous UNDETECTED results and ask them to confirm them. I know you provided us with your last results, but that was also a verbal result. Do you have the ability to send a photo of your test results? I think reviewing your actual results would help us clear this up. Something given to you in writing. Remove your identifiable information and post the most current written report as an attachment. 

<12 is the same as undetected. 

Someone who knows better please correct me if Im wrong. 

I believe CONGRATULATIONS are in order for Mac!

Hi Mak,

If you went from undetected to detected on Vosevi, you’ll be the first person I have personally ever heard of this happening to. Do you have the paperwork in your hand, or was this a phone report? Are you sure they were looking at the most current report? If you can post a photo of your most current report, redacted of course, I would like to see it. There are some confusing circumstances surrounding your differing reports. Are you receiving your results from the same person? Please share all dated copies of your actual reports, if possible.  Hang in there...

PS: Any recent ALT/AST labwork you can share?

Hey Mak,

How's it going?

Tuesday (yesterday) you were due for an appointment with your "official" nurse? (you said), and i had hoped you would also be able to see and speak with your hep doc, at that same appointment?

Did that happen? - did you have your appointment with the nurse yesterday? AND, did you also get to have a good, long thorough talk with your doc about what you should be doing for the balance of your treatment?? Hope so.

Let us know.  C.

Well, if we’re strictly going on the consideration of medication absorption, then I’m going with diarrhea being preferred to puking. If vomiting occurs within an hour of medication administration, then there is going to be a concern related to complete absorption, where diarrhea is typically related to fluid loss through the large intestine. By the time things reach the Colon, medication absorption is generally not a consideration. The exception to that would be a medication supplied by rectal suppository. Then all bets are off...

When my Dr ordered 4 more weeks of Vosevi, extending my treatment from 12 weeks to 16 weeks my insurance turned it down at first. I contacted Gilead and made arrangements to get a coupon that would make my cost something like 9 thousand dollars and I would have done that. As it turned out I won my appeal and the insurance stepped up and supplied the 4 week extension. I feel that I would not have reached SVR if it werent for the extra 4 weeks of Vosevi.   RC