Hep C Discussion Forum

5-1-18 · Guru

RE: New member saying Hi

Tig · Admin

Hey Lam,

No, no work for me. I had to retire years before that after a cervical spine injury and multiple surgeries to stabilize it. There would have been no way I could’ve worked through that. My white count crashed and I was on home isolation for safety. I was on Neupogen injections twice a week for months to try and keep it up. I was so sick. I lost 55 pounds over the course of treatment, but have found most of it. wink

Those treatments were harsh and left many of us with long term side effects, but hey, my liver was needing some serious rescuing. So, it was all worth it and I would do it again, if that’s all there was. People today are so fortunate to have these easier courses of care. I know they present their own set of circumstances and side effects, but they are much more effective and the rates of success beat the 50-50 odds many of us were hopeful to get.

Life is good....

lamassu · Senior Member

Tig wrote:
I wouldve gladly taken 5 pills per day. When I went through treatment, I had to take 18 pills per day, split up over three settings. 3 injections per week and constant blood work for 7 months (28 Weeks). Those were the days....
Vosevi = good stuff

OMG Tig you went to hell and back to get cured. Were you even able to work those 7 months or had you retired at that point? Praise God treatment has advanced so far and so fast in the last few years. I wonder if Vosevi is the end of the line or if Gilead is working on a magic bullet that is even better.

Edit: some research revealed there are no new clinical trials or new Hep C DAAs in the pipeline. Looks like Vosevi is the end of the line. HCV Advocate has even discontinued their drug pipeline.

-- Edited by lamassu on Wednesday 28th of November 2018 12:32:32 PM

Cheddy · Moderator

Yuck! So sorry you had to do that! What finally cured you, Tig?

Android, good moves! I'm glad you are hopeful again. You'll get this.

Tig · Admin

I would’ve gladly taken 5 pills per day. When I went through treatment, I had to take 18 pills per day, split up over three settings. 3 injections per week and constant blood work for 7 months (28 Weeks). Those were the days....

Vosevi = good stuff

Android6 · Member

Thank you

Observer · Guru

Ya the 5 pills was a bit of a bother and the Harvoni was in a lot of media as the miracle cure so I can see why you opted for that.

Im also glad youve formulated a plan and look forward to hearing how your journey goes.

A

5-1-18 · Guru

Android6 wrote:
Solid advice all the way and you are dead right about all my tests.
im seeing my gp on Thursday and will ask for a referral to new doctor

thanks again

i'm so glad you are moving forward to the new plans.

Android6 · Member

Vosevi is the drug I will be asking for. Because of all the good advice I have received on here I have already formulated a plan and feel positive and hopeful again. I will push hard to see my regular doctor and consult with another, consider which one seems genuinely interested in going to bat for me and follow that path. Government will be the stumbling block but I will keep everyone posted.

Ty

lamassu · Senior Member

Android6 wrote:
To be fair they did offer me a 12 week pak..but I was unfamiliar with it and opted instead for the brand name Harvoni. I quest in retrospect I goofed. I worried about the regimen of 5 pills a day and thought of the idea of one pill was the way to go.

Please don't fret too much or worry about your relapse after Harvoni. If you have an NS5A resistant variant HCV infection the Viekira Pak would not have worked any better than Harvoni. From the information you have provided so far you are an ideal candidate for retreatment with Vosevi for 12 weeks. The question is how long will the medical system in Canada make you wait before you get the Vosevi you need. We have our own problems down here in the States. I had to wait for Medicare to kick in at age 65 before I could afford Epclusa.

I don't know the treatment protocols in Canada but the last thing you want is to be prescribed a course of another DAA like Epclusa. That is why Gilead developed Vosevi, to address patients who failed to achieve SVR 12 on a a Hep C treatment regimen containing an NS5A inhibitor like Epclusa, Harvoni, Viekira Pak and others.

Here in the States the protocol is if a patient relapses after treatment with Harvoni you go straight to Vosevi 12 weeks. Mavyret 16 weeks is an alternate option but is not as successful as Vosevi. Taking any other course of a different DAA carries the risk that your virus could mutate and become resistant to even Vosevi. You must insist that you are given 12 full weeks of Vosevi. Best wishes that you get that Vosevi soon!

-- Edited by lamassu on Monday 26th of November 2018 06:03:11 PM

Android6 · Member

Solid advice all the way and you are dead right about all my tests.

im seeing my gp on Thursday and will ask for a referral to new doctor

thanks again

Android6 · Member

To be fair they did offer me a 12 week pak..but I was unfamiliar with it and opted instead for the brand name Harvoni. I quest in retrospect I goofed. I worried about the regimen of 5 pills a day and thought of the idea of one pill was the way to go.

Observer · Guru

Heya welcome to another Canadian,

Sorry to hear Harvoni failed to get rid of your HCV . I hope youll get onto a new DAA soon.

My Dr also wanted 12 weeks of treatment for me, and when the Govt wouldnt pay for that with Harvoni (despite me having cirrhosis) he put me on 12 weeks of Holkirapak and ribaviron. Its too bad your Dr didnt follow his first wish and help you navigate the govt b.s. and get you the longer treatment. cry I mean ...how are you supposed to know the process?

Anyhow, as others have said, there is hope.

Canuck · Guru

It would be interesting info to know:

1) When (which treatment week) you had labs drawn, what they tested for, and what each of those results were, during your 8 weeks of Harvoni. I am guessing that you maybe only had one round of bloods drawn during treatment (perhaps at week 4 or before?), and maybe at EOT, aside from the 300,000+VL you had done at EOT+12.

2) How soon before your SOT was your pre-treatment VL drawn?

I do not see how it will harm anything to ask your brother's doc if he will please see you for a semi-urgent consult regarding your failure and re-treatment plan, your brothers doc may say to you to get your GP to refer you to him. Then, once you meet and confer with your brothers doc you can better decide who is sounding like a better fit for you, as far as timelines, drugs and open info, and amount of care you might receive with either doc.

I still think there are some docs out there who sometimes wisely, creatively, independently are using their own judgements when it comes to what they see a patient needs are and making efforts to fulfill them, others are sheep, bean counting, budget driven, efficiently trying to stretch every dollar and minute to try to help as many patients in the line-up as possible, go by the book minimalists who would not risk rocking the boat nor pull for a pt. by spending extra time and money on something that holds little likelihood of making a dramatic effect on outcome. I'm all for good kind frequent attention, plenty of labs and appointments, and if I had my druthers I would want to meet all my moot RAV's too, just on principal, regardless of wonderful Vosevi. I too would want and expect to be offered Vosevi, but I am a known pro-Vosevi prejudiced person.

Check it out via your brother, with your brothers doc's office and/or with your GP, about getting access/a referral to see this new doc for a consult.

Also, try to determine, with both of these hep docs, if there is any medical OR "Provincial" reason you may be made to wait 6 months before you can be re-treated. C.

lamassu · Senior Member

Android6 wrote:
Hi , I am a little bit taken aback by the emails...thank you guys. Never had so much info on Hep c in the last 10years. That viral load was from 12 weeks after treatment ended so EOT+12wk..(see Im getting the lingo...). My brother is seeing this other doctor and he says he is wonderful. To be fair to the nurse it was the government who decided on the 8 weeks. My doctor requested 12 but the gov said 8.

Yes and to also be fair to your government the ION-3 clinical trial showed no statistical difference in achieving SVR12 for Genotype 1 patients whether Harvoni was prescribed for 8 or 12 weeks as long as levels of the virus were less than 6 million IU/mL before treatment and you had not been treated before. So by the clinical trials you were given the correct length of treatment. That was the basis the government used to justify only 8 weeks of Harvoni rather than 12.

You must be Genotype 1a or 1b probably with an NS5A resistant variant of the HCV virus. It is not normal protocol to test for NS5A resistance for treatment naive patients (though perhaps it should ... the field is changing fast.) There is a specific lab test "Hepatitis C Virus (HCV) NS5A Drug Resistance Assay" for it.

Since Vosevi was specifically developed to treat patients with NS5A, NS3 or NS5B resistance having that lab test now is moot. Vosevi is held in reserve for patients who failed treatment with the new direct-acting antivirals like Harvoni. No doctor will prescribe it to you as a first treatment option as no one wants to see the HCV virus mutate and also become resistant to Vosevi if it is over prescribed.

-- Edited by lamassu on Sunday 25th of November 2018 09:50:08 PM

Tig · Admin

You can enter the info at the bottom, by going to your profile page and clicking on the Signature option. There is a link to instructions in my signature.

Android6 · Member

Hi...I am betting that 12 weeks is going to work awesome for you. I totally think I got tossed under the bus and was under dosed...but who knows. Hopefully I get retreated soon.

How do I add my info at the bottom like most of you have?

thank you

Iris Dragonfly · Guru

Hey Droid! freaking government....

Hope you will be able to get on a different treatment soon. Perhaps you could report this somehow? There is a particular protocol as per viral load, and if that is not followed then the outcomes are less for sure. I had over 8 million VL and I was asking for 24 weeks but they say 12 would do it, so now I wait. I had Harvoni and your story is scaring me. I'm sorry you got stiffed, that just sucks.

Many helpful folks here who understand, glad you found us. We give you a big >>hug<<

BB, Iris

Hoodietree · Senior Member

Android6 wrote:
Hi , I am a little bit taken aback by the emails...thank you guys. Never had so much info on Hep c in the last 10years. That viral load was from 12 weeks after treatment ended so EOT+12wk..(see Im getting the lingo...). My brother is seeing this other doctor and he says he is wonderful. To be fair to the nurse it was the government who decided on the 8 weeks. My doctor requested 12 but the gov said 8.

Hi Droid! It is amazing the wonderful people here who will cheer you on and help you out with excellent info and advice. Im glad that youre here and I hope to be one of those people You can count on for encouragement

Android6 · Member

Hi , I am a little bit taken aback by the emails...thank you guys. Never had so much info on Hep c in the last 10years. That viral load was from 12 weeks after treatment ended so EOT+12wk..(see Im getting the lingo...). My brother is seeing this other doctor and he says he is wonderful. To be fair to the nurse it was the government who decided on the 8 weeks. My doctor requested 12 but the gov said 8.

Canuck · Guru

Hi droid,

Thanks for offering up all the additional info, that helps.

If we knew your Harvoni start of treatment date (SOT) and EOT, or the date(s) you had labs drawn during treatment, we would know how far along you are post-treatment, and would be able to figure out if your 311,230 VL was at EOT or if that was from EOT+12 weeks.

Who was it who was referring you to a different "wizard" doc?? Were you being referred by another medical person or was it just someone you know, a friend maybe, who said go to so and so? Generally, in most Provinces, you do need to be referred to a new specialist by another medical person - you could have your family doc refer you to the new specialist and go see the new doc for a consult and second opinion about your second treatment (you can still also consult with your current doc and nurse about your second treatment) - then you can decide (when you have seen both of them about you 2nd treatment "plan") who it would be best to go with (given what each of their treatment plans looks like to you - consider their drug choice, timelines, how much testing you will get, how many appointments you will get with the doc over the treatment, and how much thorough individual attention you will receive). In Quebec, the Provincial Health "Bodies" might have some say so in how many HCV treatments a person can receive within a certain time period (or, perhaps not!) - that might have a bearing on your timelines, as would a docs particular feelings about how soon to re-treat, and why.

It sounds like your current doc/nurse went by the minimums, the minimum of 8 weeks of harvoni based on a VL being under 6 million, and I am guessing you may have received the minimum for required labs, testing, and appointments.

You can try to get copies of all your labs, to take with you, if you go for a consult with the new doc

Try something like this for a sig. line until you can update it with better further info ... M. 62 Y.O. Canada. HCV 30 years. GT 1?. Biopsy 10 yrs ago. Still stage 1 by (what test)? Pre-treatment VL 3,270,442. Failed first treatment - SOT ___ to EOT ___ - 8 weeks Harvoni. ALT responded well? Post- treatment VL 311,230 (indicate date of this) ...

I am glad your health is OK otherwise, no other medical issues going on, all good things things to your favour. Good we have these new re-treatment drugs. It's just very unfortunate you had to go through this failure first, hard to go through we know. You will get there. Hang in there. C.

lamassu · Senior Member

Hi again Droid,

If that second viral load of 311,230 was 12 weeks after end of treatment with Harvoni there is no reason you can not start Vosevi right away. The ledipasvir/sofosbuvir in Harvoni has long since been cleared from your system. I am in the US and I do understand the medical system moves somewhat more slowly for our friends in Canada though. I also agree if you are not getting the answers you want or retreatment with Vosevi is not being pursued aggressively see a new liver specialist, a board certified gastroenterologist. Browse Retreatment of Persons in Whom Prior Therapy Failed for the recommended protocol depending on your HCV genotype.

The fact that you are still at Stage 1 is good. In the US Harvoni is only approved for Genotypes 1, 4, 5 and 6. Regardless of your HCV genotype I believe the recommended retreatment protocol for you will be twelve weeks of Vosevi. Hang in there, all you need is the Vosevi and you will be cured.

Shemp · Senior Member

Hey 6,in IMO you have to get to the bottom of why they are asking you to wait 6 mo.Is it something medical or are they just dragging their feet.Right now you have to do whats best for you.Don't worry to much about hurting your DR's feelings.I jumped ship on a Dr. i had for years because I wasn't getting anywhere on treatment.New Doc started me right away and I'm almost finished.You could be virus free in the 6 months they want you to wait.Keep after them.Let us know.

Tig · Admin

Hey Droid,

I’m curious, did your doctor test you for any possible resistance to Harvoni. They started using 8 weeks of Harvoni as a cost saving measure, but were advised to test those patients for RAV/RAS or viral variables resistant to the drug. If you had any of those variants, your rate of success drops significantly. Now you will require at least 12 weeks, probably Vosevi. It is a very good rescue protocol for those failing a different DAA.

Looks like your pre treatment viral load VL was 3,270,442 M, which is below the 6 M cutoff for the 8 week course of care. Is the second VL of 311,230, your end of treatment numbers or 12 weeks after finishing? It‘s very important to have the 12 week testing done to confirm things. I know people that were detected at the end of treatment, but were undetected and SVR after 12 weeks. Clarify that when possible.

If you have the opportunity to see one of the best liver specialists available for your continuing care, I recommend it. Your other doctor will understand. It happens all the time.

5-1-18 · Guru

hi A6, sounds like you are getting a chance to see the wizard

you can get your reports easily if the wizard requests it.

f1 is a good place to be considering your tylenol use.

you will get new labs and ultrasounds with dr.wizard and maybe new advice.

maybe they also want to wait and see if there's a surprise clearing of the hcv.

did you have your 12 weeks post treatment viral load?

and with f1 you have time to wait if they decide 6 months is the safest course of action.

who is it that said the new doc is a wizard of hcv?

we here are all so very interested in walking this journey with you to your very own declaration of undetected.

5

-- Edited by 5-1-18 on Sunday 25th of November 2018 08:19:49 AM

-- Edited by 5-1-18 on Sunday 25th of November 2018 08:20:35 AM

Android6 · Member

Hi Guru, I will do my best to answer what I know. I had a biopsy roughly 10 years ago and the doc was surprised as how well my liver was because I wrecked my liver somewhat with beer and Tylenol. I had no idea about interaction between the two and used to gobble like 12 Tylenol a day. I quit both at that point and passed on interferon to wait for better drugs. My level was stage 1. Dont know much about alt scores etc. Currently I am still stage 1 and the nurse says my liver responded really well on Harvoni as pertains to alt scores. I did ask about viral load but I am unclear as to what it means.

The HCV viral load was 311 230 copies/ ml. At baseline, the HCV viral load was 3 270 442 copies/ ml.

i Live in Quebec....the nurse said I need to wait at least 6 months as there may be traces of last treatment in my system and its better to wait. I have done a run around here and emailed the doctors secretary and she said she will try to squeeze me in sooner than later.

my feeling is the nurse will be upset by that as she told me to just be patient and also that she has many other patients to treat.

I believe I am genotype1 but not sure which letter.

i am pretty healthy no other conditions and the treatment facility is a hospital.

i recently was referred to another doctor who apparently is a wizard with hep c but I feel like I am unsure if I should jump ship after seeing the other doc for 10 years....

thanks

Cheddy · Moderator

Yeah, like that.

We are a varied group.

Canuck · Guru

Hi Android,

Glad to meet you. Sorry for your trouble with failing your 8 week Harvoni treatment.

We really do need more info from you, to be able to help you better.

Your most burning question ... "how soon can I re-treat" ... will have to be determined by a doc, but you may well be kept waiting (for a period) before you are re-treated, "how long a wait" IS the question, and "why it may be a certain length of time" is another question - there may be various reasons, some logical/practical in nature, as to why this nurse mentioned a 6 month wait period. There may be standardized time periods imposed by the Province as to how soon a second treatment can be accessed for a patient, and/or best practices thought by medicine to begin a second treatment, ie perhaps allowing a time period for a natural lessening of any NS5B RAV's. Perhaps medical insurance reasons as well, if that might apply to you.

But, in the interim and right now we can try help you with our thinking and offer info as much as we are able.

There are few things your doc will need to take into consideration for your re-treatment, 12 weeks of Vosevi would likely be a re-treatment therapy for you, Mavyret might be another possible drug choice suggested to you for your re-treatment, it will all depend on a few variables, and your docs thinking, and which drug choices are readily available to him and to you ... I am also in Canada (BC) and yes, both of these drug therapies should be available in almost all the Provinces.

It would really help (just as a basic start) to know what your gentotype (GT) is?, as well as any other info you can share with us regarding your past labs and viral loads (VL), etc., - that would really help us in assisting you, where we can, with further thinking and info.

- Please fill us in on your 8 week Harvoni start of treatment date (SOT) and your end of treatment date (EOT).

- Did your doc and nurse keep you informed of your VL's/lab results (past) and during and after your 8 week Harvoni treatment? - it would help to share those here. As well as any of your Fscores if you know them, if you had a fibroscan done, and if you had an abdominal ultrasound done. Any liver biopsy done in the past?

I certainly hope they kept you apprised of all your labs all along? Please share these labs, if you would.

What kind of a facility is this, that you are accessing, where you got your Harvoni from? How many times have you actually seen this hep doc (in the 8 years you have been going there!)? What Province are you in?, if you don't mind sharing that.

Do you have any other medical/health conditions going on - being treated for anything else?

Share what you can for a start, we'll all try to help, where we can.

Hang in there - you'll get through this. C.

Cheddy · Moderator

Welcome! Yep, you will find lots of help and lots of experience here. Often you will learn more than you doctor can take the time to tell you.

I am concerned that you can't see your liver specialist for 6 months. I would lean on that by calling them every day, or find another doctor. That's an inhumane amount of stress for you. You are in an unfortunate limbo. I'm very sorry for that you didn't slay this the first time around.

I don't know how long you need to wait to be re-treated. Your doctor should know that and communicate it to you. There is likely someone here who will know more about that than I do.

Good for you, finding this independent help. Call on us any time.

In the meantime, take very good care of yourself. We are ready to celebrate as you will get through this.

Android6 · Member

So I did some research and yes Vosevi has just been added to the available drug list here in Canada. I am excited and hopeful again. Huge thank you. I guess my biggest question is I was told to wait to treat again...is that true or could I start right away?

ty

Android6 · Member

Thank you

Android6 · Member

Thank you for responding....I am going to look up Vosevi and see if that is available in Canada.

Android6 · Member

Wow, I feel better already. Thank you all for the warm welcome and responses. I had never even heard of Vosevi. I live in Canada and yes I have been seeing a liver doctor for 8 years. When treatment became available through gov. I choose Harvoni as it was the drug I had heard most about. I was only granted 8 weeks. Once treatment began I never saw my doctor again and instead was seen by his nurse. I questioned the 8 weeks and wanted 12 but in the end the nurse said it was my choice what to do...either the 8 weeks or nothing. I choose the 8. On Wednesday when she informed me that it had not worked I was in shock. I had followed instructions to the letter and have no cirrosis.

After she broke the news she said I could email the doctor and possibly get an appointment in 6 months.

She also said I need to wait at least that long to retreat?

is that true?

lamassu · Senior Member

Hi Android6,

Welcome to the forum! Not many patients relapse after treatment with Harvoni, so sorry to hear you were in that minority. I am puzzled by your comments on lack of direction. Were you not being treated by a liver specialist? After relapse post treatment with Harvoni your treating physician should have talked to you about treating again with Vosevi or (if you have cirrhosis) possibly Vosevi plus ribavarin. As Tig said a little more information would help. All you most likely need is a course of Vosevi to eradicate your HCV forever.

Tig · Admin

Hey Droid,

Welcome to the group! I’m glad you’re with us and will be glad to answer any questions. Unfortunate to hear you failed Harvoni, but you’re right, it happens, rarely. We have had members fail different treatments, but are few and far between.

The good news is, you can be retreated with other drug protocols and quite successfully. The newest drug, Vosevi is very effective. Don’t worry, there are excellent options available.

Tell us a bit about yourself, when you have time. Add any particulars into your signature line, you can access it via your profile page. There are instructions (link) in mine on how to do it. If you have any questions, please ask and someone will help you out.

SeeTheLight · Senior Member

Hi Android6,

A Big welcome from me too. Sorry to hear that your treatment failed. Must be most upsetting for you. Hopefully you will be able to access a different DAA very soon which will work for you.

Shemp · Senior Member

Welcome 6,you've come to the right place.There are plenty of friendly,helpful people here.I,myself have no info on Harvoni but there are folks here that can help.

5-1-18 · Guru

welcome to the forum android6.

you are in the right place for support and information; there are a few ppl here who had to take tx more than once before they got cured.

hang in there, it must be heart breaking right now; but there is def hope

i failed tx in 96' and waited till may 2018 to try again with success.

-- Edited by 5-1-18 on Saturday 24th of November 2018 06:59:57 PM

Android6 · Member

hi everyone, I have never been a member on any board before so I am unclear on protocol but just wanted to say hello and express my gratitude for being here.

i have had Hep C for well over 30years and waited until this summer to treat with HarvonI. Sadly I am in the minorty statistic of those who did not clear and now feel a little directionless with some questions and not a lot of place to turn. Has anyone on here gone through treatment and have it fail?

Thank you

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