Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> New Members Area -> New member
Post Info TOPIC: New member
Isiscat2011


Guru

Status: Offline
Posts: 1724
Date:
RE: New member
Permalink  
 

Hi Mary:

It sounds like you have thought about this decision long and hard and understand the pros and cons well.  Being well informed is the best any of us can do and that is what I wanted for you.   I wish you the very best on your treatment!  



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Mary,

I know exactly how you feel. Like you, I had HepC since 1969, and had progressed to cirrhosis. After relapsing after 3 prior attempts, when I was offered 48 weeks of the Victrelis triple, I jumped at the chance. My SVR odds were only 50-60% initially, but rose after I had an RVR. The treatment was very difficult, but I had no choice.

You may well have problems with low platelets from Interferon, but Promacta has been approved by the FDA and may be required. The Neutrino Trial only accepted patients with platelets over 75,000 but rescue drugs like Promacta weren't available then. If you can get this combo, go for it. Sovaldi/Ledipasvir may be easier but it's still in the future. We're here for you. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Mugsy


Senior Member

Status: Offline
Posts: 172
Date:
Permalink  
 

Thank you all for the welcomes, encouraging words and thanks for the pee, too!  I had to laugh at myself as I have replied several times and deleted them all because they were very defensive replies on my part.....Good Lord, how will I be on Riba? My poor husband!  This is the treatment available to me at this time. My doctor(whose card says he is Assistant Professor of Medicine Division of Gastroenterology and Hepatology and looks about 18 years old!) says I really shouldn't postpone treatment any longer. I have had HepC for over 40 years and have been feeling ill for last 14 years.  I have a hard time sleeping, always tired, nausea, foggy brain, nose bleeds, bruising, no energy,  AST and ALT continue to rise, platelets continue to fall, AFP is 38.4 and I will have my three year old granddaughter living here soon and need to be finished with treatment before then so I can keep up with her. Believe me, I have toiled over this decision. I have refused treatment three times so far since 2001 because of fear of treatment failure and the possibility of permanent side effects.

But where do you draw the line at how far you allow the HepC and cirrhosis to damage your liver? I love my liver and it has been a trooper compensating for the cirrhosis so far but I do not want to push this so that my fears of possible side effects causes me to do more harm by inaction. Sure, I could be put on the waiting list and maybe do the all oral combo when it becomes available or try to demand the treatment I want, but my doctor's office is not a grocery store I can go into and place an order for meds. And I also realize my doctor has to follow treatment guidelines.  I know many have been treated successfully with INF/Riba/Solvadi and I am hoping I will be another.

Again, thanks for your kind, encouraging words and I hope to be able to encourage other, too.

Mary



__________________

62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

12 week's EOT viral load      <15 
Matt Chris


Guru

Status: Online
Posts: 1782
Date:
Permalink  
 

Hello Mary

Welcome to the forum from me as well, you have found a good place with helpfull insight from people who care. Isiscat does make some good points about treatment options with Gileads new combo likely being available in close to 5 months its a consideration you could ask your doctor about. Also ask him if your liver can handle another 5 or 6 months more of waiting. Also have him checkout the other combo Sovaldi & Olysio  it you cannot wait, it will be an easy treatment.

I had to face the same situation and I have decided to wait, with you be being Geno Type 1B your odds of SVR are almost 100% with the Gilead combo, I know the waiting is hard but the result is the most important factor.

matt

   



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Isiscat2011


Guru

Status: Offline
Posts: 1724
Date:
Permalink  
 

Hi Mary:

Well, I hate to be the one to pee on this parade but I feel compelled to say something here,  just to make sure you understand your options and are making an informed decision.   First of all, cirrhotics generally have a much more difficult time on Interferon/Riba treatments than those with little or no fibrosis.  Although you are substituting Sovaldi for 1st generation protease inhibitors (Incivik and Victrelis) you will still be taking two drugs that can have some very serious side effects.  Interferon is known for lowering platelets and yours are already low.  I won't go into more detail about all the bad things that can happen but please read the package inserts for both Interferon and Ribavirin.  I don't mean to scare you but these adverse events do happen; the FDA doesn't add black box labels for nothing.  

Secondly, the SVR rate for Inerferon/Riba/Sovaldi was only 71% in clinical trials for F3-F4s who do not have the C/C allele.  Has your IL28b type even been determined?    Here are the stats:

 

Table 9             SVR Rates for Selected Subgroups in NEUTRINO

 

 

SOVALDI + Peg-IFN alfa  + RBV 12 weeks

Cirrhosis

No

92% (252/273)

Yes

80% (43/54)

Race

Black

87% (47/54)

Non-black

91% (248/273)

Multiple Baseline Factors

Genotype 1, Metavir F3/F4 fibrosis, IL28B non-C/C, HCV RNA >800,000 IU/mL

71% (37/52)

 

Waiting 6 months for the Sovaldi/Ledipasvir one pill combo will significantly improve your chances of clearing the virus.  This combo also has a much better safety profile according to all available information.  

Alternatively, your doctor may be able to get you approved for the Sovaldi/Olysio combo particularly with your low platelet count (and there may be other contraindications that would make you eligible).   

You indicated you are in early cirrhosis which means you probably don't need to rush into this decision.  Please consider what I have written.  If you already have considered all of this, and are making an informed (and rational) decision, then go for it.  I will be cheering for you whatever you decide.   



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi and welcome Mary.

Sovaldi is a great drug so best of luck.

With cirrhosis and platelets of 76, you may need to watch them as the Peg. will drop them down. Keep us posted. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Milliganus


Senior Member

Status: Offline
Posts: 168
Date:
Permalink  
 

Welcome Mary,

This is a great resource and many knowledgable people.  Best of luck! 



__________________

Marcy

Long-term HCV, GT1a, IL28B C/T, T/G;  VL 2 mil.  Merck C-Edge Clinical trial  EOT 10/01/14. +24= UND
Fireman Rob


Senior Member

Status: Offline
Posts: 334
Date:
Permalink  
 

Good Luck Mary,

Any treatment with Sovaldi is a winner!  Please keep us posted as we're all fighting the battle with you.  Best of Luck!

-Rob



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
Tig


Admin

Status: Offline
Posts: 9279
Date:
Permalink  
 

Hi Mary,

Welcome to the forum! I'm so glad you introduced yourself. Even with the all oral regimens being introduced, with your genotype (1b) and current level of fibrosis, it's a wise time to treat and your combo is a very effective one. Once you start, you'll find the time goes by pretty fast. Should you experience any side effects, we're here to help you deal with them. It's doable and you're right, life after SVR is something to celebrate! Good luck and stay in touch!

Tig



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
jimbob


Senior Member

Status: Offline
Posts: 247
Date:
Permalink  
 

Welcome aboard Mary. You found a very good site with knowledgeable people who have a wealth of experience.

jimbob

__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
JLynch30


Senior Member

Status: Offline
Posts: 292
Date:
Permalink  
 

let me know how it goes - I am the same as you.



__________________

John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
Mugsy


Senior Member

Status: Offline
Posts: 172
Date:
Permalink  
 

Hello everyone. I am awaiting approval from the pharmacy (my insurance uses Diplomat Pharmacy) to set me up with Interferon, Riba and Sovaldi and then it's time to start this12 week battle. I have been infected with genetype 1b since 1972. Was tested for Hepatitis during my first pregnancy in 1982 and it showed no virus(for A and B). Flash forward to 2000 and a Hep C diagnosis. I chose to delay treatment but had regular check ups and biopsies. Well, I have finally progressed to beginning cirrhosis and it's time to treat. Viral load is 4,011,000  Alt is 209   Ast is 168   Platelets have been consistently low for a couple years it is at 76 now. Wish I was eligible for the all pill treatment but this is the treatment prescribed. I have been lurking on your site here for a couple months and decided it was time to join in the discussions.

Thank you in advance for your info and support. Have to admit I am a little afraid but hearing how others have made it through and are now enjoying their lives HepC free gives me hope and strength.  Bring it on, I am ready.

Mary



__________________

62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

12 week's EOT viral load      <15 
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> New Members Area -> New member
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.