Author Topic: 6 Weeks Post Harvoni - Relapsed (Read 66343 times)

Lukey · « **on:** April 24, 2015, 04:50:07 pm »

I just picked up my blood work results from 4/20/15, and I hate to say it but it looks like I've relapsed.

I have a VL of 782,040.

Under that is says HCV log 10 5.893.

I haven't talked to my gastro's nurse about it yet.

Lukey

Mike · « **Reply #1 on:** April 24, 2015, 05:42:28 pm »

Hi Luckey,

I'm so sorry to hear this.

Talk to your GI and discuss treatment options. You'll clear this thing for sure.

Best wishes, Mike

Lukey · « **Reply #2 on:** April 24, 2015, 06:03:00 pm »

Thanks Mike.

It's Lukey, not Luckey, and that was proven today.
JillLynn also called me Luckey recently.

Is there any chance I may not clear it?

Lukey (is actually my cat's name)

Mike · « **Reply #3 on:** April 24, 2015, 06:11:31 pm »

Hi Lukey,

Yes. There is a great chance that you'll clear this. I failed my first treatment - but got it the second time.

I was bummed out when I didn't clear the virus - but resolved myself that I would get it the next time.

The other thing is that there are new drugs coming to the market that are even better than the current ones.

I'll send a good word upstairs for you tonight.

Best wishes, Mike

lporterrn · « **Reply #4 on:** April 24, 2015, 06:11:53 pm »

I am so sorry to hear this. Hope your doc has some options to discuss with you. On Monday, I will be posting some info to my blog from the EASL meeting about research on patients who failed Harvoni. There's not much in the US yet, but there will be.

Lukey · « **Reply #5 on:** April 24, 2015, 06:17:31 pm »

OK, thank you both.

Mike, did you do anything different the second time you treated?

Lukey

Mike · « **Reply #6 on:** April 24, 2015, 06:19:59 pm »

No. Just stayed positive and hoped I'd get it the second time.

Mike

Lukey · « **Reply #7 on:** April 24, 2015, 06:54:03 pm »

I've been water fasting every Monday for the last 5 weeks. I lost some of my belly fat because of it. Do you think the belly fat that burned away contained some Hep C virii?

Mike · « **Reply #8 on:** April 24, 2015, 07:09:00 pm »

Lukey,

That's a good question, though I don't know the answer.

I know loosing weight can release fat soluble metabolites, which are stored in body fat.

My guess is that you didn't entirely clear the virus. I don't think it had anything to do with what you did or didn't do.

You took the medication as prescribed and the SVR didn't hold. These things happen (happened to me) and the treatment failed.

You'll get next time! Chin up!

Best wishes, Mike

Lukey · « **Reply #9 on:** April 24, 2015, 07:41:21 pm »

Hi Mike,

What I may do now is take a break from Tx and go to get BMP therapy (stands for BioMagnetic Pair). I'd have to drive 6 hours each way to a lady in North VA to get a session every week or two, for up to 8 sessions. I got BMP in CA in 2012 but it didn't clear my Hep C. I was supposed to go back once every week or two but I could not afford to do that so we tried to see if 1 session per day for 4 days would do it, and it didn't. I flew to Vallejo CA for that. When I got back I slept like a log for a week or two, an indication that the virii had in fact taken a major blow.

If it doesn't work, I'm sure it will knock the virii back plenty, and I can possibly resume Tx later on if it fails.

http://www.biomagnetismusa.com/2009/04/about-medical-biomagnetism.html

Unluckey Lukey

nicole_1234 · « **Reply #10 on:** April 24, 2015, 08:02:18 pm »

So sorry to hear that Lukey

I do think the few it doesn't work for will just get a more modified treatment (maybe longer?) and you will get cured of this. Sorry for the bad luck. It sucks.

Katie · « **Reply #11 on:** April 24, 2015, 08:12:14 pm »

Sorry to hear that Lukey. Don't give up and check into the possibility of taking more Harvoni. You were SO close. I send you my best wishes for future good health!

Katie

I just saw the picture of the "real" Lukey. He is a very handsome cat! Snuggle up with him and he will make you feel better. I do that with my Max Cat!

moma · « **Reply #12 on:** April 24, 2015, 08:42:20 pm »

Lukey I felt a pain in my heart when I read your news. I'm so sorry, but don't give up. We are all in this together and together with all our experiences and new found knowledge, we will figure this out. MoMa

Lukey · « **Reply #13 on:** April 24, 2015, 10:02:03 pm »

Thank you for the well wishes.

My cats are very good friends of mine.

I'm not sure what I will try next but either way I will keep you updated on my progress.

I don't know if I want to travel 12 hours each time to get BMP unless it's going to totally remove Hep C from me. I'd bet $$ it would knock the hell out of my Hep , but I might need to go up there for 2 appts per year to keep it tamed down.
Another course of Harvoni might be a better idea, if the GI would allow it and if my insurance would cover it.

Lukey

Lynn K · « **Reply #14 on:** April 25, 2015, 03:28:52 am »

Hi Lukey

So sad to hear this news

I had high hopes for you and for all of us to be cured forever.

But like Mike said there are new meds coming down the line that promise to be even more effective.

Sending a long distance hug your way

Red Hen · « **Reply #15 on:** April 25, 2015, 10:31:48 am »

Sad news. Hope you will re-treat in the future with better drugs.

lporterrn · « **Reply #16 on:** April 25, 2015, 04:22:14 pm »

Lukey - I just read this - granted, it isn't a retreatment study, but it looks promising: http://hepatitiscnewdrugs.blogspot.com/2015/04/achillion-presents-results-on-ach-3102.html

sunrise · « **Reply #17 on:** April 26, 2015, 12:55:43 pm »

Hi Lukey
Sorry to hear about relapse. It seems that even with the studies on 8week tx. you would think the doctors would have continued for at least 12, especially since it took more time for you to show UD. Good news is they will treat you again and you will clear the virus. At least you got a break for your liver, and you will defeat the beast. Healing energy sending your way, Blessings Sunrise
dx 6-2014
geno 1a vl 5mil
infected 1991
12week tx S/O Sept 29-2014
so far UD after12week post tx lab
praying for 24wk SVR

BubbaT · « **Reply #18 on:** April 26, 2015, 01:30:32 pm »

Hi Lukey,

I would like to encourage you to fight on bro! We are in this together, We stand with you as you fight against this virus, we have a common bond,
We pray Gods best for you...

Stand strong, don't be discouraged ...

Makena · « **Reply #19 on:** April 26, 2015, 01:37:37 pm »

I am newbie to the boards. Just read about Lukey...So very sorry. Question? I am also on 8 wk. TX w/ Harvoni. I got blessed by Support Path and my meds are free. The company who is supplying my medicine okayed 12 wk. therapy? But the GI Nurse Practitioner also stated that due to my condition of no cirrhosis, ultrasound clear, and below 6 mil copies of virus that the 8 weeks would do it. He wants me to donate my last 28 pills after 8 weeks. I am wondering what my options are here, and should I demand that I get the full 12 weeks? I will see him on the 20th after first BW, on the 15 of May.

Any advise or comments would be greatly appreciated. As I was told that the Support Path is a one time shot. ? Thanks B- makena.

nicole_1234 · « **Reply #20 on:** April 26, 2015, 02:07:03 pm »

I would take the extra weeks if you can. Of course it would be nice to donate it if you absolutely know you will have SVR. But if you don't, your going to always wonder.if you should have taken the extra weeks I did 48 wk interferon hell and they told me I should continue to 72. I didn't and it came back 2 weeks after I discontinued.

I don't regret that so much now because those drugs were so bad. But Harvoni is a breeze comparatively and I would have gladly continued. I'm not an expert on Harvoni by any means, but 8 weeks is very short time and people seem to respond differently.

nicole_1234 · « **Reply #21 on:** April 26, 2015, 02:09:29 pm »

Oh and Makena are you treatment naive? Because that's the only reason you should do 8 weeks. I assume if you were approved for 12 it's because you've done a treatment before as that's standard protocol.

Katie · « **Reply #22 on:** April 26, 2015, 02:50:15 pm »

Just for some info...I was treatment naive, under 6 million with no cirrhosis and was given 12 weeks. At 4 weeks my VL was 59, at EOT my viral load was <12 DETECTED, at 8 weeks post treatment I came back Undetected!

Would I have cleared with an 8 week treatment? Possibly, but I am glad I took the 12 weeks. More data is being collected and as the results keep coming in the standards will be updated. Having people clear Hep C weeks after stopping the treatment is something no other treatment was doing so I feel we need to wait for the long term results to come in and would recommend taking the longer treatment if available.

Personally, I am grateful I am now Undetected, however I won't breathe totally easy until I have a test at 24 weeks post treatment and it is verified because <12 is not zero and it is the ability to replicate that we are concerned with. Harvoni doesn't "kill" the virus, but inhibits the replication process. I feel positive since the viral load continued to drop, indicating they couldn't replicate.

This is just my opinion and I am not a medical professional.

Have a great day and keep up the fight. We will win!

Katie

Lynn K · « **Reply #23 on:** April 26, 2015, 07:51:07 pm »

For people who are treatment naive, without cirrhosis, and low viral load the results are about the same 8 weeks vs 12 weeks that was why they said 8 weeks could be considered for patients like that.

In the ION 3 trial results were 94 vs 95% in 8 vs 12 weeks respectively

http://depts.washington.edu/hepstudy/presentations/uploads/141/harvoini_with_audio_by_bob_gish.pdf

But 95 is not 100% so guess that must be what happened here and trial results don't necessarily equate to real world results

Good luck

JillLynn · « **Reply #24 on:** April 27, 2015, 10:57:30 am »

Lukey.........sorry I mis-spelled your name. and I'm even more sorry to hear your news.

That really is disappointing. I'll be here to see what you decide to do and wish you some peace in the meantime.

We are all here with you friend. I keep wondering what the harvoni has done to my body. The virus is gone....but sometimes I feel really weird in my stomach and not sure why. Just a little thought passes thru my brain.........what did the harvoni do to me? Hopefully just killed the virus and no other damage.

trying not to worry! again....sorry Lukey about the news.

Lukey · « **Reply #25 on:** April 27, 2015, 02:24:22 pm »

Thanks again all.

I'm going to get BioMagnetic Pair Therapy Wednesday and every week for a while there after. After these series of sessions, I will set up an appt with the gastro and maybe we can take a look at my LFTs and I can then decide where to go from there. It's possible that I may be content with the level of improvement I achieve on BMP therapy.
I heard of a woman with 3 different types of HSV that was having 2 outbreaks+ a month, and now only has 1 outbreak a year since getting BMP. She has 2 follow up appts per year to keep her healthy. I'm thinking that BMP may have a similar deactivating effect on my HCV.

I have not heard from my gastro's office yet. I guess they aren't looking forward to talking to me. They may be having too much fun calling other people to tell them they're undetected.

Lukey

charly8 · « **Reply #26 on:** April 27, 2015, 03:31:49 pm »

Quote from: Makena on April 26, 2015, 01:37:37 pm

I am newbie to the boards. Just read about Lukey...So very sorry. Question? I am also on 8 wk. TX w/ Harvoni. I got blessed by Support Path and my meds are free. The company who is supplying my medicine okayed 12 wk. therapy? But the GI Nurse Practitioner also stated that due to my condition of no cirrhosis, ultrasound clear, and below 6 mil copies of virus that the 8 weeks would do it. He wants me to donate my last 28 pills after 8 weeks. I am wondering what my options are here, and should I demand that I get the full 12 weeks? I will see him on the 20th after first BW, on the 15 of May. Any advise or comments would be greatly appreciated. As I was told that the Support Path is a one time shot. ? Thanks B- makena.

Do the 12 weeks. No question about it!

Lukey · « **Reply #27 on:** April 27, 2015, 07:45:58 pm »

PS - I didn't have too many SFX on it. I felt chilled most of the time but that faded away a few weeks after stopping Tx.

My sleep improved for a while on Tx and after Tx but now seems to be the way it was pre Tx which is so-so.

I'm more in favor of alt therapies though, because you never know what meds might do to you besides cure you. Alt therapies are more into balancing the body. They might not totally rid you of Hep C but there's less chance of causing new imbalances like poor sleep, arthritis, etc.

Lukey · « **Reply #28 on:** April 28, 2015, 06:28:23 pm »

I spoke to my gastro's FNP's nurse today. She told me there is a new med coming out in about 2 months that might be great for me. They don't seem to be interested in just putting me on a 12 week round of Harvoni.

I just saw a Harvoni commercial on TV and it recommends 12 weeks.
I don't think swapping meds is a good idea. I think I did great on Harvoni, I just should have done 12 weeks of it, not just 8.

Now I'm going to travel 12 hours to get BMP therapy and see what that does to me.

I plan to follow up with them in about 2 months to see where my LFTs are at, but I place a lot of merit on how I feel over blood test results. I'm not one of those people that has to have zero VL. If I feel quite well, a small VL is most likely going to be OK with me, and BMP may very well do that for me, and with no SFX, but with some out of pocket expense.

Lukey

Long_Haul · « **Reply #29 on:** April 28, 2015, 08:14:13 pm »

Joe, I have been away off the board for a while, so sorry to hear your news. I know you were working hard to get to SVR. Don't give up, you can make it and I hope whatever path you choose that you are as healthy and happy as you can be. Keep us posted on how things are going, I am pulling for you and hope for the best for you.

Best wishes,

AL

Tpropane · « **Reply #30 on:** April 28, 2015, 10:47:50 pm »

So sorry Lukey, That Sucks. What a nightmare! I think more that the duration of treatment. 8 weeks seems so short. Especially since Im on it for 24 weeks! But having been clear (undetectected) since 4 weeks. I just think perhaps all the information about the status of your liver etc. hadn't been taken into consideration. These Doctors have no experience. It is a brand new treatment. Did you have a biopsy or fibroscan to determine the exact status of your liver just before you began treatment? As what happened to me I went from stage 1 grade 1 to full blown stage 4 cirrhosis in 12 months. Boom. Old tests are unreliable to determine length of treatment. Also most crucially no antacids! I'm on week 13 won't be done until July. But perhaps going straight back on Harvoni for 12 weeks is a good course? Get right back on the meds. Harvoni works, I just think 8 weeks wasn't long enough. Dr. Tpropane!
Exhausted but hopeful...But wishing everyone a full recovery. Keep on keeping on.
TPropane

charly8 · « **Reply #31 on:** April 29, 2015, 10:11:02 am »

I agree 8 weeks seems too short in your case. 1a is harder to treat than 1b.

With 5.7 million VL so close to the 6 Mil cut off? You indicated you had a biopsy with little damage in 1990. Did you have any current biopsies?

I am a little frustrated that these doctors cant seem to make any of these logical connections and opt for conservative treatments. 12 weeks is a no brainier in your case.

jiff · « **Reply #32 on:** April 30, 2015, 12:55:50 am »

Does anyone know why GT 1A harder to treat than 1B???

mario555 · « **Reply #33 on:** April 30, 2015, 04:05:45 pm »

Being told you relapsed after treatment is an awful, terrible news! I was told twice before I had failed treatment. I was borderline for a 24 weeks treatment and I took the 24 weeks option (on my doctor's advice).
Why am I saying that? If you have been financed for 12 weeks, take them all! You don't want to relapse after only 8 weeks of treatment! Everybody here seems to be voting for 12 weeks so; listen to us old warriors!

charly8 · « **Reply #34 on:** April 30, 2015, 04:16:52 pm »

Quote from: Makena on April 26, 2015, 01:37:37 pm

The company who is supplying my medicine okayed 12 wk. therapy? But the GI Nurse Practitioner also stated that due to my condition of no cirrhosis, ultrasound clear, and below 6 mil copies of virus that the 8 weeks would do it.

If this is what he said, it is upsetting. The term "would" implies 100% chance. Nothing is 100% especially HCV and treatment outcomes (Some of us know this all too well, I am sorry to say). He should have said "chances are you will be cured" but some people do relapse on treatment and you have a better chance of relapse going 8 weeks than 12 weeks.

My doctor pretty much said the same to me when I wanted to do 24 weeks. He said 12 will do it. I pressed him and said 100% chance? He then backed off a little, but to the uniformed patient this can give false hope.

Currently on this board, there are three people that have results from 8 week treatements and 2 have relapsed. So Harvoni is not a certainty at all.

dragonslayer · « **Reply #35 on:** April 30, 2015, 05:25:08 pm »

Hi Charley,

>>but some people do relapse on treatment and you have a better chance of relapse going 8 weeks than 12 weeks.<<

I dont think the Gilead Ion-3 data as quoted in the media and prescription flyers support this... Are you using data from the FDA filing?

Bituman · « **Reply #36 on:** April 30, 2015, 06:51:37 pm »

When I first met with my hepatologist four months ago he said they "always" prescribe 12 weeks, and that if they got an insurance denial, they automatically appeal. Despite the fact that I met all the criteria for 8 week treatment, they prescribed 12 and I was approved for 12 weeks. My stats are not all that different than Lukey's. The inconsistency in this process is depressing and maddening and curious.

Lukey, none of this discussion does you any good now. I just wish you good health and much success the next go around.

Bob

Katie · « **Reply #37 on:** April 30, 2015, 07:23:32 pm »

Quote from: charly8 on April 30, 2015, 04:16:52 pm

Currently on this board, there are three people that have results from 8 week treatements and 2 have relapsed. So Harvoni is not a certainty at all.

Other than Lukey, I haven't seen any other person relapse on Harvoni but most after treatment results aren't in yet. Did I miss something? There have been a couple tested Detected at EOT but so far 2 of the 3 have cleared, me being one of them.

It's a shame to hear about your problems Lukey, and I sincerely hope you get what you need to clear this monster. Keep the faith!

Katie

Lynn K · « **Reply #38 on:** April 30, 2015, 08:04:55 pm »

Yes I was wondering the same thing about any patient relapse I had not see that either.

charly8 · « **Reply #39 on:** April 30, 2015, 08:08:43 pm »

Quote from: Katie on April 30, 2015, 07:23:32 pm

Other than Lukey, I haven't seen any other person relapse on Harvoni but most after treatment results aren't in yet. Did I miss something? There have been a couple tested Detected at EOT but so far 2 of the 3 have cleared, me being one of them.

It's a shame to hear about your problems Lukey, and I sincerely hope you get what you need to clear this monster. Keep the faith!

Katie

3 of the 15 people with at least SVR4 results have relapsed:

Lukey
PaulG
Terih

See here:

http://forums.hepmag.com/index.php?topic=2665.0

charly8 · « **Reply #40 on:** April 30, 2015, 08:20:58 pm »

Quote from: dragonslayer on April 30, 2015, 05:25:08 pm

Hi Charley,

>>but some people do relapse on treatment and you have a better chance of relapse going 8 weeks than 12 weeks.<<

I dont think the Gilead Ion-3 data as quoted in the media and prescription flyers support this... Are you using data from the FDA filing?

Yes,

"""ION-3 and ION-2 have numerically higher SVR12 rates and lower relapse rates in the
respective longer treatment duration arms. In ION-3, relapse rates are 4.2-5.1% in the
LDV/SOF±RBV 8 week arms versus 1.4% in the LDV/SOF 12 week arm. In ION-2,
relapse rates are 3.6-6.5% in the LDV/SOF±RBV 12 week arms versus 0% in the
LDV/SOF±RBV 24 week arms. """

http://www.accessdata.fda.gov/drugsatfda_docs/nda/2014/205834Orig1s000MedR.pdf

Naturally the longer you treat, the better your chances. Regardless of your situation.

Katie · « **Reply #41 on:** April 30, 2015, 08:41:34 pm »

Quote from: charly8 on April 30, 2015, 08:08:43 pm

3 of the 15 people with at least SVR4 results have relapsed:

Lukey
PaulG
Terih

See here:

http://forums.hepmag.com/index.php?topic=2665.0

Thanks Charly! I really appreciate this!

Were all 15 on Harvoni only?

Lynn K · « **Reply #42 on:** April 30, 2015, 08:49:55 pm »

charly8

Thanks for the info I missed those.

Looks like PaulG was only treated for 8 weeks but had a liver biopsy from 12 years prior saying F3. I believe his doctor did him a great disservice by only treating for 8 weeks especially without reevaluating if he was F4 and really F3-F4 should both be treated for at least 12 weeks.

Reading terih's stats she was quite a surprise as much as Lukey. She was tx naive fibrosis F2-F3 (Nov 2014) pre tx VL 2.56 mil treated for 12 weeks.

But we all know the trails were not 100% sucks to fall on the short side of the stats.

dragonslayer · « **Reply #43 on:** April 30, 2015, 09:39:47 pm »

Quote from: charly8 on April 30, 2015, 08:20:58 pm

Yes,

"""ION-3 and ION-2 have numerically higher SVR12 rates and lower relapse rates in the
respective longer treatment duration arms. In ION-3, relapse rates are 4.2-5.1% in the
LDV/SOF±RBV 8 week arms versus 1.4% in the LDV/SOF 12 week arm. In ION-2,
relapse rates are 3.6-6.5% in the LDV/SOF±RBV 12 week arms versus 0% in the
LDV/SOF±RBV 24 week arms. """

http://www.accessdata.fda.gov/drugsatfda_docs/nda/2014/205834Orig1s000MedR.pdf

Naturally the longer you treat, the better your chances. Regardless of your situation.

Charly, Im going to hazard a guess here that the reason the numbers youre quoting are less favorable to the 8 wk treatments in the FDA filing vs the Gilead prescribing doc is that the FDA numbers arent segmented by viral load.. When you segment by viral load, such that the 8 weekers being compared have loads of < 6mil, in table 7 on pg 24 of the prescribing doc, we see the same relapse data for the 8 weekers as the 12 weekers: 2%. I think that the numbers youre quoting from the FDA doc are using ALL 8 weekers, not just the group which was approved to treat for that duration.

charly8 · « **Reply #44 on:** May 01, 2015, 07:50:55 am »

Quote from: Lynn K on April 30, 2015, 08:49:55 pm

charly8

Thanks for the info I missed those.

Looks like PaulG was only treated for 8 weeks but had a liver biopsy from 12 years prior saying F3. I believe his doctor did him a great disservice by only treating for 8 weeks especially without reevaluating if he was F4 and really F3-F4 should both be treated for at least 12 weeks.

Reading terih's stats she was quite a surprise as much as Lukey. She was tx naive fibrosis F2-F3 (Nov 2014) pre tx VL 2.56 mil treated for 12 weeks.

But we all know the trails were not 100% sucks to fall on the short side of the stats.

I agree, I think its clear PaulG should have been 12 weeks. Even still 2/14 is still high relapse rate. We now need the next 26 people to get SVR (without any relapses) to get to the 95% SVR rate that the Gilead trials show.

charly8 · « **Reply #45 on:** May 01, 2015, 08:12:22 am »

Quote from: dragonslayer on April 30, 2015, 09:39:47 pm

Charly, Im going to hazard a guess here that the reason the numbers youre quoting are less favorable to the 8 wk treatments in the FDA filing vs the Gilead prescribing doc is that the FDA numbers arent segmented by viral load.. When you segment by viral load, such that the 8 weekers being compared have loads of < 6mil, in table 7 on pg 24 of the prescribing doc, we see the same relapse data for the 8 weekers as the 12 weekers: 2%. I think that the numbers youre quoting from the FDA doc are using ALL 8 weekers, not just the group which was approved to treat for that duration.

I agree, the 8wk numbers are close to the 12wk when you factor in all the stipulations such as VL<6mil. But the following statement is still true:

"The longer you treat, the better your chances. Regardless of your situation."

mario555 · « **Reply #46 on:** May 01, 2015, 08:19:04 am »

My idea is that you will not get the 95% with our group. During its testing phase, Gilead chose its patients carefully to "hyper -maximize" its results. In real life, insurance companies maximized their profits, not our cure rate!
What Gilead said about their 8 weeks treatment was that "It could be considered in specific cases". What the insurance companies did was to apply a cookie cutter approach to restrict treatment. As an example, if you had 5.9 millions viruses, you'd go on a 8 weeks treatment. At 6.1 millions you'd get 12 weeks. Unfortunately, life doesn't work like that!
My guess is that 75% will clear the virus in the 8 and 12 weeks cohorts because of those cut-off techniques.
My biggest advice would be that if the insurance company finances 8 and 12 weeks and that your state of health is borderline, you should self-finance an extra 4 weeks! It can't hurt and might jump the success rate tremendously. Calling Gilead help line for financial support for the extra bottle could be done to try to reduce the cost..

charly8 · « **Reply #47 on:** May 01, 2015, 08:41:37 am »

Quote from: mario555 on May 01, 2015, 08:19:04 am

What Gilead said about their 8 weeks treatment was that "It could be considered in specific cases". What the insurance companies did was to apply a cookie cutter approach to restrict treatment. As an example, if you had 5.9 millions viruses, you'd go on a 8 weeks treatment. At 6.1 millions you'd get 12 weeks. Unfortunately, life doesn't work like that!

Lukey had a Initial VL of 5.4 Mil.

Lukey, what was your Fibrosis stage?

mario555 · « **Reply #48 on:** May 01, 2015, 08:53:30 am »

5.4 millions is pretty close to 6 millions! On top of that, an assessment of Luckey's general health and other factors might have tipped the balance to a 12 weeks treatment!
The 8 weeks treatment reminds me of my car's use of fuel; 40 miles to the gallon? I've never been above 30!! 40 miles can be done in a very specific environment (ie; 80 degrees, special tires, 50 miles an hour and the wind in my back!). To me, this 8 weeks treatment is the same, feasible but uncommon. At 5.4 millions I think this was not a case to be dismissed rapidly with the 8 weeks....

k9emo · « **Reply #49 on:** May 10, 2015, 08:38:43 pm »

Hi everyone, I am just starting week 4 this week. I was approved through aetna with no problems because apparently i followed all the insurance rules properly. I just wanted to let you know what my aetna nurse told me. She said I was approved for 6 weeks of harvoni whatever that means, bc I will have my second bottle by then. However she did say to toss all toothbrushes and razors by week 5 so i don't accidentally reinfect myself. i am wondering if this is what is happening. She said the virus clears by week 5. Also I hear hydrogen peroxide kills the virus so until then I am leaving my tooth bush to soak in it.

I get my blood work in 1 week, wish me luck! Take care.

Bob V · « **Reply #50 on:** May 12, 2015, 01:15:43 pm »

Lukey
I don't know what to say except sorry to hear this.

I've been off the forum for awhile and I'm sad to be reading all the failed treatment posts.

Best of luck.

dragonslayer · « **Reply #51 on:** May 12, 2015, 02:19:12 pm »

Quote from: k9emo on May 10, 2015, 08:38:43 pm

Hi everyone, I am just starting week 4 this week. I was approved through aetna with no problems because apparently i followed all the insurance rules properly. I just wanted to let you know what my aetna nurse told me. She said I was approved for 6 weeks of harvoni whatever that means, bc I will have my second bottle by then. However she did say to toss all toothbrushes and razors by week 5 so i don't accidentally reinfect myself. i am wondering if this is what is happening. She said the virus clears by week 5. Also I hear hydrogen peroxide kills the virus so until then I am leaving my tooth bush to soak in it.

I get my blood work in 1 week, wish me luck! Take care.

Man, where do these care providers come up with some of these things. Namely, there is no guarantee that anyone clears the virus at 5 wks.. or 4 wks, or 6 wks, etc.. Some clear at 2 wks, some clear at 4, and some are still detected at EOT. Some clear only by 4, 8, or 12 wks post treatment.. And unfortunately, some never clear.. The only two test dates which really matter are either 4 wks post treatment (because it correlates so well with subsequent SVR tests) and 12 wks post treatment, at which point you are considered 'cured' with an undetected load.

Im also a little confused about the 6 wk approval? Harvoni doesnt generally get approved for any duration other than 8, 12, or 24 wks.

Bob V · « **Reply #52 on:** May 12, 2015, 02:23:56 pm »

Man, where do these care providers some up with some of these things. Namely, there is no guarantee that anyone clears the virus at 5 wks.. or 4 wks, or 6 wks, etc.. Some clear at 2 wks, some are still detected at EOT. Some clear only by 4 or 6 or 8 wks post treatment.. And unfortunately, some never clear..

Im also a little confused about the 6 wk approval? Harvoni doesnt generally get approved for any duration other than 8, 12, or 24 wks.
-------
I'm with you Paul, not understand this.

BTW how you doing?

Bob

dragonslayer · « **Reply #53 on:** May 12, 2015, 02:39:27 pm »

Quote from: Bob V on May 12, 2015, 02:23:56 pm

Man, where do these care providers some up with some of these things. Namely, there is no guarantee that anyone clears the virus at 5 wks.. or 4 wks, or 6 wks, etc.. Some clear at 2 wks, some are still detected at EOT. Some clear only by 4 or 6 or 8 wks post treatment.. And unfortunately, some never clear..

Im also a little confused about the 6 wk approval? Harvoni doesnt generally get approved for any duration other than 8, 12, or 24 wks.
-------
I'm with you Paul, not understand this.

BTW how you doing?

Bob

Hey Bob... Doing well, thanks, biding time til my 24 wk svr test in early July.. Til then, my 11 wk UND will have to tide me over... I know I should consider this SVR, but every time I read of another relapse, my confidence goes down a notch.. That should be extremely rare. Hey, I see youre only a couple of wks away from your own SVR test . .Best of luck; you know Ill be pulling for you.

Bob V · « **Reply #54 on:** May 12, 2015, 03:06:53 pm »

Hey Bob... Doing well, thanks, biding time til my 24 wk svr test in early July.. Til then, my 11 wk UND will have to tide me over... I know I should consider this SVR, but every time I read of another relapse, my confidence goes down a notch.. That should be extremely rare. Hey, I see youre only a couple of wks away from your own SVR test . .Best of luck; you know Ill be pulling for you.
---------
Paul
I was glad to see you got some good lab results. Fingers crossed for all of us waiting.

Bob

Lukey · « **Reply #55 on:** May 14, 2015, 11:15:03 am »

Quote from: charly8 on May 01, 2015, 08:41:37 am

Lukey had a Initial VL of 5.4 Mil.

Lukey, what was your Fibrosis stage?

I never had one of those.
Had a biopsy around 1991 and had no visible damage.

Lukey · « **Reply #56 on:** May 14, 2015, 11:21:12 am »

Quote from: mario555 on May 01, 2015, 08:53:30 am

5.4 millions is pretty close to 6 millions! On top of that, an assessment of Luckey's general health and other factors might have tipped the balance to a 12 weeks treatment!
The 8 weeks treatment reminds me of my car's use of fuel; 40 miles to the gallon? I've never been above 30!! 40 miles can be done in a very specific environment (ie; 80 degrees, special tires, 50 miles an hour and the wind in my back!). To me, this 8 weeks treatment is the same, feasible but uncommon. At 5.4 millions I think this was not a case to be dismissed rapidly with the 8 weeks....

I made another trip to DC yesterday. If I drive 75-80 I only seem to get about 30 MPG but I drove 65-70 yesterday and got about 37 MPG. I'd bet I could get more than that if I drove 55-60 in 5th gear.

My PCP sounds like he'd put me on Harvoni for 12 weeks. I found out recently that he's treated some people with Harvoni, but for 12 weeks, I think. He's in town too, and my insurance has no co pay if I see him. He's also a DO. Gastro plans to send me an appt in about 4 weeks after some new med comes out that might have about a 100% chance of working.

I tend to think I'd rather see my PCP and go with 12 more weeks of Harvoni. I could be wrong but I think what I really needed was more time on Harvoni and I would not have HCV today.

Lukey

Bob V · « **Reply #57 on:** May 14, 2015, 11:38:54 am »

My PCP sounds like he'd put me on Harvoni for 12 weeks. I found out recently that he's treated some people with Harvoni, but for 12 weeks, I think. He's in town too, and my insurance has no co pay if I see him. He's also a DO. Gastro plans to send me an appt in about 4 weeks after some new med comes out that might have about a 100% chance of working.

I tend to think I'd rather see my PCP and go with 12 more weeks of Harvoni. I could be wrong but I think what I really needed was more time on Harvoni and I would not have HCV today.
----------
Lukey
Wow tough choices. Would your insurance cover both?
Bob

Lukey · « **Reply #58 on:** May 14, 2015, 11:47:10 am »

Quote from: Bob V on May 14, 2015, 11:38:54 am

Lukey
Wow tough choices. Would your insurance cover both?
Bob

I assume it would cover Havoni.

dragonslayer · « **Reply #59 on:** May 14, 2015, 05:51:31 pm »

Quote from: Lukey on May 14, 2015, 11:15:03 am

I never had one of those.
Had a biopsy around 1991 and had no visible damage.

Lukey, I may be missing something here, but did you have no more recent fibrosis/inflammation checks than 1991? If so, how on earth could any doctor prescribe 8 wks without checking for advanced fibrosis first?

I must have read what you wrote incorrectly, because this, if true, with no more recent fibrosis checks than 24 years ago, would border on malpractice at the very least, considering that viral load, degree of fibrosis, and if there were any prior treatments are the 3 main criteria for any doctor to use in prescribing Harvoni. You dont offer any fibrosis info in your sig, so Im just hoping Im wrong.

Lukey · « **Reply #60 on:** May 14, 2015, 07:13:13 pm »

Hi,

That's all the info I have. They inspected my liver from the outside and say there's no inflammation.

Can I get a Fibrosure test instead of a biopsy? I do't want another biopsy (too invasive).

Lukey

Katie · « **Reply #61 on:** May 14, 2015, 07:30:02 pm »

Hi Lukey, I have never had a biopsy but have an ultra sound each year. They always came back showing my liver in good shape. I asked my doctor about a fibroscan and he said I was not a candidate for it as it is for folks with or close to cirrhosis. I don't think the scan is accurate for anyone who doesn't have fibrosis. If you haven't had a recent ultrasound, you might want to do that.

Hope something good for you comes up in the future or they extend your Harvoni.

Katie

Lukey · « **Reply #62 on:** May 14, 2015, 07:36:53 pm »

Hi Katie,

Sorry, I forgot about my ultrasounds. I had a very thorough one a month or so before I went on Harvoni in Jan 2015. so, I tend to think my GI MD has covered all bases. I'm glad cirrhosis wasn't the reason why I failed 8 weeks of Harvoni.

What do some of yo think I should do now? My PCP sounds willing to put me on 12 weeks of Harvoni. GI MD say some new med is coming out in a month or so that they have in mind for me.

Lukey, not Luckey

dragonslayer · « **Reply #63 on:** May 14, 2015, 11:04:14 pm »

Quote from: Katie on May 14, 2015, 07:30:02 pm

Hi Lukey, I have never had a biopsy but have an ultra sound each year. They always came back showing my liver in good shape. I asked my doctor about a fibroscan and he said I was not a candidate for it as it is for folks with or close to cirrhosis. I don't think the scan is accurate for anyone who doesn't have fibrosis. If you haven't had a recent ultrasound, you might want to do that.

Hope something good for you comes up in the future or they extend your Harvoni.

Katie

Right, Katie. I think he said that because Fibroscan is notoriously weak in scoring the middle stages, and much stronger with no fibrosis, or advanced fibrosis ie F3-F4. If one wants to have the best chance at accurately appraising their minor or minimal liver damage, the biopsy is still the way to go. For Harvoni treatment, a lot of doctors do Fibroscans mainly for the insurance companies because advanced Fibrosis has major implications for treatment coverage and duration.

dragonslayer · « **Reply #64 on:** May 14, 2015, 11:06:32 pm »

Quote from: Lukey on May 14, 2015, 07:36:53 pm

Hi Katie,

Sorry, I forgot about my ultrasounds. I had a very thorough one a month or so before I went on Harvoni in Jan 2015. so, I tend to think my GI MD has covered all bases. I'm glad cirrhosis wasn't the reason why I failed 8 weeks of Harvoni.

What do some of yo think I should do now? My PCP sounds willing to put me on 12 weeks of Harvoni. GI MD say some new med is coming out in a month or so that they have in mind for me.

Lukey, not Luckey

For those who failed 8 wk treatment with Harvoni, Ive read studies which show about 80% success rate doing retreatment with Harvoni for 24 wks... That rate is lower for 12 weekers who fail.

http://www.aidsmap.com/When-a-short-course-of-sofosbuvirledipasvir-fails-some-people-can-be-cured-of-hepatitis-C-with-a-double-treatment-duration/page/2965963/

Bob V · « **Reply #65 on:** May 15, 2015, 09:49:05 am »

For those who failed 8 wk treatment with Harvoni, Ive read studies which show about 80% success rate doing retreatment with Harvoni for 24 wks... That rate is lower for 12 weekers who fail.

http://www.aidsmap.com/When-a-short-course-of-sofosbuvirledipasvir-fails-some-people-can-be-cured-of-hepatitis-C-with-a-double-treatment-duration/page/2965963/
------------------------------
Good post Paul and the one on ultra sound/scan too. This is the reason I would most likely hold off on re-treatment add see what new meds come out. Fingers crossed I won't have to go here.

Lukey · « **Reply #66 on:** May 15, 2015, 03:38:59 pm »

Good post Paul and the one on ultra sound/scan too. This is the reason I would most likely hold off on re-treatment add see what new meds come out. Fingers crossed I won't have to go here.
---------------------------------------------------------------------------

Maybe I should hold off too. Gastro MD doesn't seem too hot on the idea to retreat with 12 weeks of Harvoni.

PCP DO is willing to retreat me with Harvoni, and if 80% success rate is what I have, that's definitely not bad.

Bob V · « **Reply #67 on:** May 15, 2015, 04:01:27 pm »

Lukey
Again no easy answer.

Lukey · « **Reply #68 on:** May 15, 2015, 04:41:56 pm »

I'm in no hurry to retreat, nor do I think I should be.

I'm getting back into chelating Mercury with ALA and oral DMPS. It's done a lot to improve my mental function after decades of heavy metal toxicity.

Maybe I will wait to see what gastro MD has in mind for me next.

One thing I think is for sure. I'm not going to drive 400 miles for more BMP therapy sessions for a good while. It's a good therapy but small chance of it removing my Hep C, so I may as well sit tight for a while.

BubbaT · « **Reply #69 on:** May 15, 2015, 06:32:38 pm »

Lukey,

What is Bmp therapy? And how is it administered?

Also, why was there no consideration by your GI Dr. To continue your initial Harvoni treatment longer than 8 weeks? Does the dr. Have the discretion to continue past the initial treatment duration of 8 weeks like in your case?

Lukey · « **Reply #70 on:** May 15, 2015, 07:11:38 pm »

Please read my other replies and posts about BMP.

Sorry but I don't know what to say about your other questions.

At best, I think all BMP would do is lower my VL.
At 810 miles round trip to get it, I don't think I could take going back for more of it.
If it really cured Hep C, that would be another story.

connie · « **Reply #71 on:** May 18, 2015, 04:24:48 pm »

So sorry to hear of your relapse, I also relapsed following 8 weeks of harvoni... 4 weeks after EOT viral load was 6,000... 3 months after EOT viral load 1.5 million , just as it was before treatment...I was treatment naïve... I think the achillion drugs mentioned below may be a good option for future treatment... appears to be for treatment resistant folks... but I am not rushing the next treatment... will wait a year after it is out as long as I am doing ok

Quote from: lporterrn on April 25, 2015, 04:22:14 pm

Lukey - I just read this - granted, it isn't a retreatment study, but it looks promising: http://hepatitiscnewdrugs.blogspot.com/2015/04/achillion-presents-results-on-ach-3102.html

connie · « **Reply #72 on:** May 18, 2015, 04:27:14 pm »

Personally I would never retreat with havoni again.... I am pretty sure I am resistant but of course not positive but it seems the tests for resistance are not used much except in clinical trials and not necessarily that accurate... people sometime clear that are resistant... it is a crapshoot for sure

Quote from: Lukey on May 15, 2015, 03:38:59 pm

Good post Paul and the one on ultra sound/scan too. This is the reason I would most likely hold off on re-treatment add see what new meds come out. Fingers crossed I won't have to go here.
---------------------------------------------------------------------------

Maybe I should hold off too. Gastro MD doesn't seem too hot on the idea to retreat with 12 weeks of Harvoni.

PCP DO is willing to retreat me with Harvoni, and if 80% success rate is what I have, that's definitely not bad.

connie · « **Reply #73 on:** May 18, 2015, 04:55:53 pm »

Just wondering who else has relapsed that was on 8 weeks of harvoni?? connie

Quote from: charly8 on April 30, 2015, 04:16:52 pm

If this is what he said, it is upsetting. The term "would" implies 100% chance. Nothing is 100% especially HCV and treatment outcomes (Some of us know this all too well, I am sorry to say). He should have said "chances are you will be cured" but some people do relapse on treatment and you have a better chance of relapse going 8 weeks than 12 weeks.

My doctor pretty much said the same to me when I wanted to do 24 weeks. He said 12 will do it. I pressed him and said 100% chance? He then backed off a little, but to the uniformed patient this can give false hope.

Currently on this board, there are three people that have results from 8 week treatements and 2 have relapsed. So Harvoni is not a certainty at all.

dragonslayer · « **Reply #74 on:** May 18, 2015, 09:03:02 pm »

Quote from: connie on May 18, 2015, 04:27:14 pm

Personally I would never retreat with havoni again.... I am pretty sure I am resistant but of course not positive but it seems the tests for resistance are not used much except in clinical trials and not necessarily that accurate... people sometime clear that are resistant... it is a crapshoot for sure

Connie, dont jump to conclusions... There's a study showing retreatment with Harvoni for 8 weekers who relapsed had an 80% success rate when retreating for 24 wks:

http://www.hepmag.com/articles/Harvoni_retreatment_2501_27162.shtml

connie · « **Reply #75 on:** May 19, 2015, 07:10:35 pm »

80% is not good enough for me... I had really bad head and neck aches and my muscles were affected... hips and knee injury which I think was a result of harvoni, problems with healing... I feel like it took 4 months to get the drugs completely out of my body... I have resisted treatment for all these years and I can wait longer... maybe a 100% cure and they can match my blood against the treatment...I function pretty well with hep c, not perfect but well enough....

Peace, connie

mario555 · « **Reply #76 on:** May 19, 2015, 07:31:00 pm »

Sorry about hearing of your relapse, sure is a bummer! I agree with you that I would wait before considering another treatment. You don't want to repeat this useless exercise...
New drugs are coming out soon (2 years) and they use a whole different process a bit like jumping from interferon to Harvoni. Wait if you can...

mario555 · « **Reply #77 on:** May 19, 2015, 07:32:25 pm »

Also Connie, be careful and watch your liver. It jumps rapidly from F2 to F4....

connie · « **Reply #78 on:** May 19, 2015, 07:41:35 pm »

That is good to know... Mario... don't you think it CAN jump rapidly from 2-4 ... I would love to see some stats on that.... seriously, can you direct me to some...
you know I have always been a non-doctor, alternative person... this is my nature... I tried harvoni... and it didn't work... I will keep an eye on things... my hepatologist in Houston at the medical center doesn't even want to do a fibroscan and fibrosure for 2 more years (they think cause I am thin this will be very accurate tests for me)... geeze, they are not concerned... do you think bloodwork is affected when you get up for F-4... I just don't want to live in fear...and I don't want to take a med that might miss up other parts of my body... but thanks for the warning

Can you give me some links to this information regarding the jump from F-2 to F-4, I would really appreciate it!!

Peace, connie

connie · « **Reply #79 on:** May 19, 2015, 07:43:46 pm »

I hope you could make sense of my message... it has been a long day... sorry at the beginning I meant to say.. what makes you think it can jump rapidly from F-2 to F-4???

Katie · « **Reply #80 on:** May 19, 2015, 07:50:53 pm »

Hi Connie, If I were in your shoes I would wait and follow the research carefully. I knew about Harvoni before my doctor even mentioned it. In the meantime, and what I did do for 10 years, is have blood work and an ultrasound annually to check on the liver condition. They can tell if the tissue has changed by the ultrasound and the LFT are a good indicator if your condition is worsening, as well. These tests would let you and your doctor know if a biopsy or fibroscan would be needed. Be proactive as it is your health and listen to your body. Some of the hepC symptoms can creep up on you slowly to where you just accept them as the normal

Good luck to you and I wish you the very best and a cure that will work in the near future.

Katie

connie · « **Reply #81 on:** May 19, 2015, 07:56:36 pm »

yes katie, that is exactly my plan!! I have always gotten bloodwork at least yearly, well now it will be every six months with office visit every year!! I think i have alot of symptoms i accept as normal.. but it is just the way it is!!
Thanks Katie, connie

mario555 · « **Reply #82 on:** May 19, 2015, 09:04:52 pm »

Connie. I promise I do not want to alarm you! I went from F2 in 2010 to F4 in 2015 so 5 years. I have been infected for close to 45 years. I was F0 in 2000. I do think my 2 previous interferon treatments worsened my case so...
You can find anecdotal support with the increasing speed of the disease right here in these forums.
Also, a fibroscan you'd take right now would be painless and give you a starting point from which you could follow your liver's health. You could then have one every year with the same machine and you could judge when would be the most appropriate time to undertake a new treatment. I wouldn't wait much further than F3 before moving (or one full jump on the fibroscan). I was F4 so I got the 24 weeks treatment because it is harder to treat!I sure hope it's gonna work because I have had a shitty 24 weeks (and still feeling not so good..)

connie · « **Reply #83 on:** May 19, 2015, 09:18:29 pm »

Hey Mario, no problem... i had a biopsy in 2011 .. i was between 1-2... i really do think the interferon could escalate things for people... for many people and possibly people that had to get a transplant... sorry you took that crap. Are you done with your 24 weeks?? I know for a fact i could not have tolerated harvoni past 12 weeks and i may not have made it that far...

Good luck, i hope things work out for you!!

connie

FutureThinker · « **Reply #84 on:** May 19, 2015, 09:55:08 pm »

Connie, I have read and been advised by MDs that an "average" span between stages can be 3-5 years. My biopsy in '12 showed F1, the FibroSure this year shows F2. None of these tests are 100% accurate, though!

connie · « **Reply #85 on:** May 20, 2015, 10:55:00 am »

Well it took me 16 years to get to between F-1 and F-2... Just did a castor oil pack cause I was in leslies yesterday and that pool chemical smell made me sick this morning.. feeling better now.. I cannot say enough about the wonders of castor oil packs...
future thinker, I just don't know about that progression rate of fibrosis, I have head such different things... I had the biopsy in 2011 but the ultrasound last year showed no inflammation or anything... well who knows... my condition is in the hands of the higher powers

peace, connie

charly8 · « **Reply #86 on:** May 20, 2015, 11:10:10 am »

I have read that the progression rate increases with age.

Lynn K · « **Reply #87 on:** May 21, 2015, 01:54:06 am »

Was f1 first biopsy, 5 years later f2, 5 years later f3, and 5 years later in Jan 2008 f4.

I did treat 3 times with interferon based. My first was interferon monotherapy for 6 months 3 shots a week back in 1994.

Relapsed last year after 12 weeks treatment with Sovaldi olysio. Just finished 2 weeks back 24 weeks of Harvoni with 15 weeks of Rivavirin.

Hoping for the best

charly8 · « **Reply #88 on:** May 21, 2015, 03:17:06 pm »

It looks like these drugs may do the trick for Harvoni relapsers:

It is resistant to all the RAV's that would come up from Ledipasvir

http://www.natap.org/2014/AASLD/AASLD_51.htm

And they are recruiting for a trial right now for relapsers of DAA

https://clinicaltrials.gov/ct2/show/NCT02446717

terih · « **Reply #89 on:** May 21, 2015, 06:29:05 pm »

Hi, Charly, Thanks for this news! My new Doc told me that the next generation of Abbvie drugs would kick Harvoni's fanny!

As he is one of the Docs that put these combos together and does the testing on them, I'll take his word for it!

Since it's recruiting in San Antonio, this might be the study I'll be in, in August.

All of my fellow relapsers, look into this one!!! Please! Maybe our SVR isn't too far away!

connie · « **Reply #90 on:** May 21, 2015, 07:30:06 pm »

thanks a lot charly for posting info on these drugs.... With the trial... well I would not want to be in the group with Riba... I dunno, I would hate to be a guinea pig for new drugs....unless my situation deteriorated rapidly.... I personally would not take riba...

Thanks for posting

Lukey · « **Reply #91 on:** May 21, 2015, 07:41:45 pm »

Thanks for all of your replies.
Now I think I'll pass on my DO / PCP's offer to put me back on Harvoni, but for 12 weeks this time.
Went up to Burke VA to get 2 BMP therapies and I don't plan to go back any more. I tested + for Hep c on the 2nd session, which proved I did not clear Hep C the 1st session, and I have a feeling BMP wold never clear me of Hep C. It's just too stubborn of a virus. She told me "Hep C is not a virus, it's a toxin" but whatever it is, they do NOT know how to remove it. They have wishful thinking about BMP.

Now I'm leaning toward waiting to see what the gastro MD wants to do next.
I don't think they feel I need to hurry into another therapy right now.

Lukey

Lukey · « **Reply #92 on:** May 23, 2015, 09:01:03 pm »

I sure wish I'd waited 2 or 3 months before I went on Harvoni. That would have given the MDs time to realize that some of us would not clear HCV in 8 weeks on Harvoni. If I had waited and got on 12 weeks, I probably would have cleared HCV, but I can't say for sure, of course. $:-\$

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