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Dennis' Harvoni Treatment

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Posted 11/7/2014 9:40 PM (GMT 0)
Dennis has been on treatment for 2 weeks now.

Starting Viral load 150,000 now less than 15

AST was 85 now with in normal range

ALT was 98 now with in normal range

Dennis finished Solvaldi and Olysio the 22 of June and relapsed with in a month. Viral load at that time he started was 1,120,000.
Side effects have been mild, fatigue, headache and a little wobbly on his feet. Fruit doesn't have any taste but over all treatment is going great!! We feel very blessed!! :)

Kathy and Dennis
Posted 11/7/2014 10:22 PM (GMT 0)
WE are so praying for SVR this time for Dennis...and YOU, Kathy.

The spouses are on this ride too.

Glad for the < 15 news. Woo Hoo.

Carol and Mike
Posted 11/8/2014 4:10 PM (GMT 0)
Kathy, Hi! Funny about the fruit not having any taste. I know themister had water start tasting funky with the old SOC meds. And he could not eat spicy food as he said it was like straight Tabasco. I hope this time is "the one".

edit...other than treatment, wanted to know how Dennis is doing. Any update?
Big Hugs
Posted 11/8/2014 5:38 PM (GMT 0)
Thanks MamaLama and Themiz,

ML, you are so right!! It feels like when your spouse is on treatment the whole family is on treatment. :) Thanks goodness we all pitch in and help and get it taken care of. With Dennis being ESLD the treatment is a little harder on him but he is a trooper and he does what he can but he is very tired and sleeps a lot.

Themiz, When Dennis was on the Interferon treatments everything tasted like metal so it wasn't a big surprise when fruit started not having any taste at all. He so far hasn't had any trouble with any other foods. To bad it's the healthy food that doesn't have any taste.

Dennis is doing very well, the doctor said he is a sick man but he is dealing with treatment very well. So fingers crossed the treatment works this time.... When he is feeling good he enjoys playing with the dogs and watching TV. He likes to read but he get distracted easily.

Will update in 2 weeks after his next doctor appt.

Kathy and Dennis

Post Edited (DDMom) : 11/8/2014 10:45:08 AM (GMT-7)

Posted 11/20/2014 5:48 PM (GMT 0)
Dennis is now Undetected. WoooHooo!! He has been on Harvoni for 4 weeks now and some where between 2 and 4 he became undetected.

He is feeling pretty good. Is very fatigued and sleeps a lot but over all is tolerating treatment very well. We were told at his doctor appt. that they are going to start having people who are on Sovaldi and Olysio go 24 weeks if you have cirrhosis and have been on other treatment that has not worked....I guess in trials they have found that 12 weeks is not long enough. It is still a 12 week treatment but for those who have trouble getting rid of the virus then 24 weeks will be the new standard of treatment. Not sure when this will go into effect but it was pretty interesting when we found out about it.

Dennis has blood work again in 4 weeks then he has a doctors appt. 2 weeks later. We are just chugging along!!


Kathy and Dennis
Posted 11/20/2014 7:27 PM (GMT 0)
Kathy,


Here some information on duration of treatment with Harvoni that you mentioned.

Gilead Sciences' Harvoni is one pill.

•Harvoni is approved for treatment of genotype 1 HCV infection in adults.

•Cure rates range from 94% to 99%.

•It is a single pill taken daily, with or without food.

•Patients who have never been treated for HCV, whether they have cirrhosis or not, take Harvoni for 12 weeks.

•Treatment-naïve patients without cirrhosis whose pre-treatment viral load (HCV RNA) is less than 6 million IU/mL may be considered for 8 weeks of treatment. This is about 40% of eligible patients.

•Patients without cirrhosis who have failed treatment with either peginterferon alfa + ribavirin or an HCV protease inhibitor + peginterferon alfa + ribavirin, take Harvoni for 12 weeks.

•Patients with cirrhosis who have failed treatment with either peginterferon alfa + ribavirin or an HCV protease inhibitor + peginterferon alfa + ribavirin, take Harvoni for 24 weeks.



I am so happy to hear Dennis is now UNDETECTABLE!! We live for this type of news :) Big Hugs...to you both.



Posted 11/20/2014 9:55 PM (GMT 0)
Themiz,

I guess they are going to do the same thing with the Sovaldi and Olysio now....Dennis was on that combo treatment for 12 weeks and then relapsed a month later...now he is on Harvoni. The doctor said that after much review they are deciding to have patients who have Cirrhosis and have been treated before will now go for 24 weeks. The reason I bring it up is that if they had that information before Dennis started the Sovaldi and Olysio treatment then he would of done 24 weeks instead of the 12 and it might of cured the virus.


We think it's great that they have reviewed the patient that relapsed and decided to go an extra 12 weeks so they hopefully wouldn't need to go on another treatment.

Thanks Themiz for the info on Harvoni :)

Kathy and Dennis

Post Edited (DDMom) : 11/20/2014 2:58:58 PM (GMT-7)

Posted 3/10/2015 10:25 PM (GMT 0)
Hello everyone...

Just checking in to let every one know Dennis is starting his last bottle of Harvoni...Hooray!!

He has been doing pretty good but unfortunately he is not one of the people who has taken Harvoni with no side effects. He is extremely fatigued and sleeps a lot. Has lost hair and has aches and pains. Headaches not bad but still there from time to time. Low platelets. He is now drinking Premier protein drinks for extra vitamins and to help with energy and muscle loss. But on a good note this has been wonderful compared to any of the Interferon treatments he was on previously. He has been Undetected since 4 weeks and all of his liver levels are within normal range. So 28 more days to go and we are very excited to have this behind us. In the last year Dennis has been on treatment twice and I think it's really done a number since he has Cirrhosis as well. Fingers crossed he beats it this time!!

I've checked in now and then to see how everyone is doing and really happy that others are getting the opportunity to start Harvoni treatment as well.

Thinking of you guys,
Kathy and Dennis
Posted 3/11/2015 2:29 AM (GMT 0)
Hi Kathy, Nice to hear from you. I wish you were here more often. I know you have lived as a caregiver spouse for years....and you have much experience with ESLD to offer me, and others.

Thanks for giving an update about Dennis's latest treatment. I sure hope this time is the charm! He has really been through it. 28 days...the countdown begins.

Themister never had a chance to try DAA's, but he treated twice with interferon/riba. His 2nd treatment was horrid. If there was a side effect listed, he had it. But it worked, so we felt it was worth it.

How are "you" doing? Don't be a stranger. Big Hugs
Posted 3/11/2015 3:03 AM (GMT 0)
Kathy and Dennis


Glad to hear from you and sorry to hear you guys are having a rough patch. Hoping April brings Undetected and a path to SVR.

HUGS, ML
Posted 3/12/2015 3:41 PM (GMT 0)
Thanks Themiz and ML

It's been kind of crazy around our house...my mother in law fell and broke her hip right before Christmas and Dennis has been on treatment since October. You know how it is when things happen they usually happen at the most inconvenient time. Things are starting to come together so hopefully I will be around more often.

You guys take care,
Hugs, Kathy
Posted 4/7/2015 5:57 PM (GMT 0)
Dennis has finished Harvoni treatment. He did his final labs and will do labs again in a month. He was told that if he remains undetected at that time he has a 98% chance the virus is gone....They check again at 3 months after treatment and that is when if its still undetected then they consider him cured. July 6th... We are excited but at the same time realistic we've been down this road a few times!!

Hugs,
Kathy and Dennis
DDMom
Posted 4/7/2015 7:56 PM (GMT 0)
K&D

I keep looking for this news. So hopeful for you both.

Hugs,

Carol
Posted 5/9/2015 2:14 AM (GMT 0)
Hi Everyone...

Dennis finished the Harvoni Treatment the 6th of April 2015 (24 weeks) and a month later the Hep C is showing up again on his labs. So unfortunately no SVR with Harvoni. We are bummed but we're not giving up. Dennis is taking some time off from treatments as his body and mind are both exhausted.

The Hep Doc is shocked that it didn't work but wants to run a battery of test (more indepth ones) to figure out why it is not working. (Blood work) I don't know any thing about this set of testing but we will do it if it will help figure out a better way to treat.

Take care,

Kathy and Dennis
Posted 5/9/2015 12:18 PM (GMT 0)
www.treatmentactiongroup.org/sites/g/files/g450272/f/201301/HCVClinicalTrialsGuide2013.pdf

Kathy, Read your post last night, but was too upset to write back. This morning I found an article that gives some hints to what may be happening with Dennis. On pages 25-30 of this report on clinical trials, they talk about non responders. The description of ways the virus mutates must be the issue with Dennis.

After the Olysio round, you reported that his liver functions were way down and in the normal range. Though they are detecting the virus (maybe a different type now) after Harvoni are his lfts still in normal ranges? Is he feeling pretty good?

I can see why he wants to take a break. But it is important for Dennis and EVERYONE for the docs to figure this out...WHY would this one guy resist all the drugs that have such HIGH rates of success. There must be something unique about him....and I am sure he would be very glad NOT to be unique in this way. I sure hope they can figure this out.

Thinking of you both LOTS.

Hugs, Mama Lama
Posted 5/9/2015 3:58 PM (GMT 0)
Thanks Carol.....

His ALT and AST are elevated ALT 76 and AST 73 They were both in normal range during treatment. He has had one go in the 200 range years ago but with treatments they have come down...Normal range during treatment and then elevated after treatment but never as high as 200.

Harvoni treatment was weird as one minute Dennis seemed like he was doing great being more active and the next minute he was sleeping and had no energy at all...like he was swinging back and forth. After treatment he was sleeping and really not feeling good at all...so I would take it the virus is working overtime right now.... One of the patients who cleared the virus with Harvoni said it took her 5 months after treatment to feel back to normal....Whatever normal is....

We are looking forward to them getting to the bottom of what is going on. I have read that there have been people who didn't go undetected with Harvoni at all during treatment. I've also read that even tho the treatment is getting rave reviews during trials that doesn't mean it's doing as well when on the open market especially for people who are like Dennis that are very hard to treat.

Dennis is one of the patients they are using for case study so it is our hope that through him and others that they figure out what to do next for patients in this situation.

Today is a better day!!

Hugs,
Kathy and Dennis
Posted 5/9/2015 4:52 PM (GMT 0)
I've been through the repeated failures.
I'm now on 24 weeks of Harvoni with fingers crossed.
I hope things work out for you and Dennis.
Posted 5/9/2015 6:49 PM (GMT 0)
Dog LeDon.....

It's nice to know we aren't traveling this journey alone. We wish you a better outcome with your Harvoni treatment our fingers are crossed for you!!


Thanks for your post it means a lot!! :)

Kathy and Dennis
Posted 5/9/2015 8:53 PM (GMT 0)
Kathy, Sorry to jump in late. I am busy with some family things at home and have not posted as quickly this week.

This news stinks. I am so disappointed to hear Dennis did not obtain SVR with 24 WEEKS of Harvoni, so I can not imagine how Dennis and you feel. I really thought this was the one for him...and nearly all of those with Hep C. Hopeful to hear Dennis is a case study, though. There is so much more going on in the Hep C arena with the DAA's having such good success. Some light still at the end of that tunnel, possibly? Hope Dennis is feeling as well as can be expected. Big Hugs
Posted 5/10/2015 3:24 PM (GMT 0)
Thanks Themiz,

We are just taking it one day at a time!! We are grateful that he was able to do treatment even tho it didn't work for him it probably slowed it down for a bit.


Have a great day!!

Hugs,
Kathy and Dennis
Posted 5/14/2015 2:30 PM (GMT 0)
that is terrible that the Harvoni didn't work!! but i did read that 2 to 4% did not clear in trails. The upside is that there is a better drug undergoing trails already< as for when it will be available ...www.hepatitiscentral.com/news/new-hepatitis-c-drugs-coming-in-2015/ So all is not lost,my Team of doctors did say they were concerned about Hep-c mutating and becoming resistant to Harvoni at some point. Thank god the research is continuing!!!
Posted 5/14/2015 4:10 PM (GMT 0)
Thanks Barry...

We are very grateful they're doing a lot of research at this time for Hep C. From what his doctor said he is going to be doing blood work that will go over to Gilead and they will run it and find out why he didn't reach SVR.

We knew there was a small percent of patients that it wouldn't work on but felt at this time it was his turn after many treatment to reach SVR.... ;) Now we are more concerned with him building up his strength as the last two treatments have taken it's toll. He has lost a lot of muscle mass as well as being very weak.

For now he is just resting and trying to eat better and get some exercise. If there is another treatment he can do he will not be doing it till after January as he is so burnt out. His body and mind need a break for a bit!!

Thanks for the link we signed up for the newsletter!!
Posted 5/17/2015 1:03 PM (GMT 0)
Achillion, Merck, and Gilead are in heated battles to bring the next greatest drug to the HCV market.
They all are working on shorter treatment durations.
Phase two trials look good from Achillion.
Perhaps there will be a 100% cure-all treatment by 2016.
Posted 5/17/2015 10:53 PM (GMT 0)
So many will be saved from ESLD, HE, and death..as research brings more treatments to the market. Maybe transnplants will be a thing of the past for Hep C folks, so organs can go to more folks with OTHER liver issues.

The next step will be to find a way to repay the research fees, make the pharma companies enough money, but allow EVERYONE who needs the cure to get the meds.

Now they need to work on a vaccine.

Best to all warriors fighting Hep C NOW.

Hugs,

Mama Lama
Posted 5/18/2015 2:00 AM (GMT 0)
When I first came onto this forum, most of the posts were about problems people had. Now, many of the posts are folks getting the new cure(s). I was lucky to have received a transplant almost 6 years ago and am undetectable after 55 weeks of interferon/ribavirin 3 years ago.

We're still not there, but...

It's so good to watch the odds beginning to shift in favor of people getting a cure.
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