havoni treatment

New Topic Post Reply Printable Version
72 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/8/2015 11:01 AM (GMT -7)   
hello all... i sincerely hope you all get rid of this sneaky litlle devil of a disease, its forever in the back of your mind bugging you making you wonder how long do i have... But I managed to beat cancer twice so bring it!!i refuse to lay down

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 3/8/2015 1:13 PM (GMT -7)   
Barrie,put all your stuff in one TOPIC thread. Then we can follow you and can look back and remember which treatment, which genotype, that you had and beat cancer twice (congrats!), etc. ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/8/2015 4:49 PM (GMT -7)   
ok I will try.my genotype is 1A tough one to kill from what my Doctors say...I don,t see one Doctor but a team of them and a Transplant cordinater keeps constant tabs on me,blood tests 1 or 2 times per mth,MIR every three mths and various other tests...

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/8/2015 4:51 PM (GMT -7)   
i am not sure how much Gilead is going to help but if they cover the 20% that insurance doesn't handle then i off to the races!! i will keep all of you informed as to how it unfolds...

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/8/2015 4:59 PM (GMT -7)   
How long have you been transplanted, Barry? We have some here that are post transplanted that already did treatment. Good to know you will soon be on that side of Hep C. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/9/2015 7:37 AM (GMT -7)   
i got my transplant in December of 2011 , the first year was rough i must admit . i spent 83 days in the hospital and only remember the last two weeks(they fed me pretty strong drugs) but every thing has gotten a lot better...I figure it was so tough because when i found out about the hep i also found out I am a celiac,then i broke my hip at work,like give a guy a break!!!! But there is a bright side,the anti rejection drugs got rid of my phoriases and I do realize i got Lucky.

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/9/2015 7:49 AM (GMT -7)   
my wife's insurance covers 80% of cost and Gilead is going to help also. My insurance only covers about 9,000 a far cry from the price tag on Harvoni....In Canada the only insurance company covering Harvoni is Sun life..I for the life of me don,t understand why the Government hasn't covered it yet..as it is cheaper to Cure Hep c then the cost of a Transplant plus all the health care needed to stabilize the issue,s that Hep c brings on...But alas who knows how the mind of our politicians work?lol

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/26/2015 11:13 AM (GMT -7)   
hello all I am still waiting for answer back from Insurance....geez

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/26/2015 11:21 AM (GMT -7)   
Hi Barry, Hope you are feeling well, in spite of the long wait for Harvoni. Did you see the link David posted here this week? I will place it here again, for you : )

I am not familiar with Canada, and how your system works, but this does look promising for those with Hep C. Tell us what you think. Keep positive!

www.cnbc.com/id/102529795

Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/27/2015 7:29 AM (GMT -7)   
thank you for that info Hopefully it speeds up the process!!!!!As you well know living with this sneaky little killer(hep-c) is frustrating and causes so much stress it is almost unbearable.Yet we all fight hard and refuse to give up!!!!! Here is another link that is informative for those who life in Canada / research.tdwaterhouse.ca/research/public/Stocks/NewsArticle/us/GILD?documentKey=100-083b8111-1

Post Edited By Moderator (MamaLama) : 3/27/2015 11:13:32 AM (GMT-6)


Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/31/2015 12:01 PM (GMT -7)   
I hope all of you are doing well, I am doing good . It seems when you want an insurance company to cover Harvoni you have to make sure you tell them your genotype, as they only cover genotype 1a . I am learning... I was hopeful that I would start treatment this week but alas... The genotype was not included in request ... So waiting once again... But Hey!!! It's a sunny day!! Warm.. And I have met new people on here!! So SMILE and have a wonderful day all!!

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/31/2015 12:10 PM (GMT -7)   
Type 1a and 1b are the 2 most common genotypes in North America, so you're not alone. I was 1a, did interferon/ribavirin pre and post transplant. Have now been undetectable for 3 years. You'll get there.
nullum beneficium impunitum...

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 3/31/2015 12:32 PM (GMT -7)   
Hello David!! Thank you for your response . You have surprised me a bit , as I did the interferon/rib treatment before transplant but no luck. What surprised me is they did it to you again. My Doctors said no... Maybe you had better numbers while on it the first time ... Besides its a brutal treatment!! Thank god it worked on you !!!

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 4/14/2015 7:14 AM (GMT -7)   
unbelievable....still waiting for Sun Life to make a decision.....maybe this week...one can only hope...I hope everyone else is doing well!!!Hello to all and keep strong there is a light at the end of the tunnel!!

Post Edited (Barrylink) : 4/14/2015 8:23:44 AM (GMT-6)


Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 4/17/2015 6:27 AM (GMT -7)   
Today is a great day!!!!! yeepee ky ya!!!got confirmation on Sun life paying for harvoni!!!! should be starting next week!!!! so as i have always said...there is light at the end of the tunnel!!! I sincerly hope everyone on this site has Good Luck in solving their troubles!!!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 4/17/2015 3:57 PM (GMT -7)   
Great news BL...when do you think you will start.

Mike's brother just started on his Harvoni 2 weeks ago...says he has fatigue and some headaches, but the thought of late stage liver disease would not be much fun either, so he is so thankful to have this chance. He got his meds through the VA after some initial run around with them.

Let us hear from you soon. What cycle will they have you do blood testing? Each doctor or center does it a little different.

Best,
Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 4/17/2015 9:04:58 PM (GMT-6)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 4/17/2015 5:12 PM (GMT -7)   
Good news, Barry. Finally!!

I am thinking since you are post transplant, perhaps they will do things a bit differently with labs....but perhaps, not? Can you let us know as you go along? Our life long friend treated with Solvaldi/riba at 10 years post transplant. Did great, obtained SVR in Jan. I am really happy to hear your news today. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 4/27/2015 12:05 PM (GMT -7)   
i started harvoni yesterday!!!! i am feeling a bit Lucky and hope that very little side effects hit if any...

imbb
Regular Member


Date Joined Apr 2015
Total Posts : 65
   Posted 4/27/2015 12:15 PM (GMT -7)   
Congrats! What a blessing it is to have the option of this treatment. I am a couple of weeks ahead of you, can endure any sides for 12 weeks when a good outcome is so likely. My viral load after two weeks is <15, my ALT and AST numbers are in the normal range. And I feel better on so many levels. Hope you have the same experience.

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 4/27/2015 12:22 PM (GMT -7)   
thank you for and i totaly agree with you!! i can take anything knowing that in the end we will win!!

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 4/27/2015 1:18 PM (GMT -7)   
Oh, I am so glad you finally got the treatment started, Barry.

As an aside...I saw your post on Schimbare's thread about your transplant experience. How high was your MELD? Not sure how it works in Canada with their transplant list. Would love to hear about that. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 4/28/2015 6:54 AM (GMT -7)   
My MELD score was 28 and climbing when i got back on list but i was 14 before...on list..off list..on list...on and off because of cancer hitting liver. The first time it hit they burned it as it was a small spot,the second time it was larger and could not be burned. they used a new treatment that is glass beads,50% chance of success. As soon as it was confirmed cancer had been killed i was back on list and i lasted about 2 months and my liver gave up.... at that point i became number one on the list...In Canada the worst case is the first to be considered for a organ. The time of year played a important part in me receiving an organ as according to the team of surgeons your chances are really good at Christmas of someone making a fatal mistake..(that bugged me alot thinking my fortune was depending on someone dieing at Christmas and me benefiting as a result) the operation took 10 hours,two teams of surgeons.In retrospect in a nutshell the worse off you are the better your chances are to get a transplant...I suspect the States would be very close to the same,as what happens in USA is reflected in Canada..any questions you have i am happy to tell you if i know the answers...Also i would like to point out that even though Blue Cross covers Harvoni ,it does not cover everyone who has Hep-c!!! I found out from my transplant coordinator that it wouldn't have covered me because i do not have cirrhosis with my new liver..and you have to have stage 2 cirrhosis at the very least to get coverage!!!
keep your head up!! Things will get better!!! the clouds can't last forever...The sun has to shine soon!!!!

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/28/2015 3:27 PM (GMT -7)   
It's pretty much the same here. I was told several years after my transplant that I was a week away from death. It was nice not knowing where things stood, until the call came. No angst and no one there at the hospital, so no teary good byes.

You shouldn't feel bad about why there are more donors around Christmas. In the US, states that don't have motorcycle helmet laws have the most donors. It's just the way things go. I was a potential donor, until Hep C came to light. Giving my organs to someone else should I die, appealed to me. That's why I try to honor my donor and their family.
nullum beneficium impunitum...

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 5/4/2015 7:55 AM (GMT -7)   
themiz how are you doing? good i hope!! I'm doing so well i have trouble keeping myself out of trouble lol but i'm doing it...the devil in me wants to let loose , had to tie him up and glue him to a chair in the garage!! well enough from me have a good day!!

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 5/4/2015 7:05 PM (GMT -7)   
Doing well here in AZ, Barry. Thanks for checking in on me :)

Nothing new happening here, really. Been following The Draft for our home team, and the other teams, as well. Themister and I are big NFL fans. We follow the Card's since moving to Phoenix in 2013 (for themister's transplant needs). Gives us something to look forward to.

Great to know you are staying upbeat at all times. Harvoni seems to be kind to you! Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran
New Topic Post Reply Printable Version
72 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Saturday, December 16, 2017 2:23 AM (GMT -7)
There are a total of 2,906,031 posts in 318,913 threads.
View Active Threads


Who's Online
This forum has 158257 registered members. Please welcome our newest member, hfttfhtfdsa1.
195 Guest(s), 1 Registered Member(s) are currently online.  Details
borrelioburgdorferii