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 -> I need some support
Post Info TOPIC: I need some support
rebeca


Veteran Member

Status: Offline
Posts: 68
Date:
RE: I need some support
Permalink  
 

rebeca wrote:
mallani wrote:

Hi Rebeca,

Your post demonstrates what the real issue is with HepC Rx. COST! As they will lose the profits from Incivek and Victrelis in the USA shortly, Vertex and Merck should be reducing the price to make these drugs more affordable for poorer countries like Spain.

I would rethink the decision not to try Peg/Riba.  In your Biography, you state that you have the CC allele at Interleukin 28B.  Could you ask your doctor whether you also had the gene test for rs8099917? If you are TT at this site, you have a 80% of SVR using SOC.  It would be a shame not to try Rx as you are F2 at present, and who knows when the Spanish Government will decide it can afford to fund Victrelis and Incivek.  I would give it a try, and you will know by the 4 week VL what the chances of success are.  It is easier to treat an F2 than an F3-4!

As to telling friends about HepC, it is really a personal decision. However, if  'friends' disappear after being told, they are not real friends. Good luck. Don't despair, you'll get there.

 Hi Mallani,

It´s really interesting what you say about the gene re8099917 . Do you know where I can find some information about it?

Thank you very much

 Hi Mallani,

Thanks for the explanations of "gene testing", and other topics.They are very clear and helpful. I am preparing many questions for my appointment with the hepatologist.

 



__________________

52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
Loopy Lisa


Guru

Status: Offline
Posts: 895
Date:
Permalink  
 

You're very welcome, we are all holding hands here and crossing fingers for everyone. Anytime you need a shoulder you can always PM me or shout on the forum. x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
rebeca


Veteran Member

Status: Offline
Posts: 68
Date:
Permalink  
 

Loopy Lisa wrote:

I just want to send you no words or suggestions, just a big hug. x

 Thank you very much,

Since I found this forum,I´m more happier. ( really). It´s very important to me your support, today particularly your hug, Loopy Lisa.

I wish you the best for all.



-- Edited by rebeca on Friday 25th of October 2013 04:57:01 PM

__________________

52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
Loopy Lisa


Guru

Status: Offline
Posts: 895
Date:
Permalink  
 

I just want to send you no words or suggestions, just a big hug. x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
rebeca


Veteran Member

Status: Offline
Posts: 68
Date:
Permalink  
 

mallani wrote:

Hi Rebeca,

Your post demonstrates what the real issue is with HepC Rx. COST! As they will lose the profits from Incivek and Victrelis in the USA shortly, Vertex and Merck should be reducing the price to make these drugs more affordable for poorer countries like Spain.

I would rethink the decision not to try Peg/Riba.  In your Biography, you state that you have the CC allele at Interleukin 28B.  Could you ask your doctor whether you also had the gene test for rs8099917? If you are TT at this site, you have a 80% of SVR using SOC.  It would be a shame not to try Rx as you are F2 at present, and who knows when the Spanish Government will decide it can afford to fund Victrelis and Incivek.  I would give it a try, and you will know by the 4 week VL what the chances of success are.  It is easier to treat an F2 than an F3-4!

As to telling friends about HepC, it is really a personal decision. However, if  'friends' disappear after being told, they are not real friends. Good luck. Don't despair, you'll get there.

 Hi Mallani,

It´s really interesting what you say about the gene re8099917 . Do you know where I can find some information about it?

Thank you very much



__________________

52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
rebeca


Veteran Member

Status: Offline
Posts: 68
Date:
Permalink  
 

Thanks to all,

Today I´m more relaxed. Definitely, I have to be patient. In december I´ll talk to the hepatologist, and I ´ll ask him about the near future.

Until then, my intention is to keep learning things in this fórum, and try to be happy, like all people.

It´s true that in Spain the restrictions in health are large, but perhaps they prefer to assess the effectiveness.

I´ll tell you



__________________

52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Rebeca,

I did a post about it in Knowledge Base-Useful Information called 'Gene Testing in Hepatitis C' .  Jill made it a 'sticky' so it's second from the top.  If you need more info, send me a PM. Cheers.



-- Edited by mallani on Wednesday 23rd of October 2013 04:03:23 AM

__________________

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
garfield


Veteran Member

Status: Offline
Posts: 97
Date:
Permalink  
 

Hi Rebecca,

You know my opinion I wouldn't do a 48 weeks therapy , when there is in near future one with 12 weeks with a much better chance for svr.

Nobody knows the cost of the 12-week therapy with Sofosbuvir/Interferon/Ribavarin, but we will know it in a few weeks.

I would wait at least,  if you/your doc can estimate when this therapy will be available for you and only then making your decision.

cheers



__________________
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Rebeca,

Your post demonstrates what the real issue is with HepC Rx. COST! As they will lose the profits from Incivek and Victrelis in the USA shortly, Vertex and Merck should be reducing the price to make these drugs more affordable for poorer countries like Spain.

I would rethink the decision not to try Peg/Riba.  In your Biography, you state that you have the CC allele at Interleukin 28B.  Could you ask your doctor whether you also had the gene test for rs8099917? If you are TT at this site, you have a 80% of SVR using SOC.  It would be a shame not to try Rx as you are F2 at present, and who knows when the Spanish Government will decide it can afford to fund Victrelis and Incivek.  I would give it a try, and you will know by the 4 week VL what the chances of success are.  It is easier to treat an F2 than an F3-4!

As to telling friends about HepC, it is really a personal decision. However, if  'friends' disappear after being told, they are not real friends. Good luck. Don't despair, you'll get there.



__________________

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
Scruffy


Guru

Status: Offline
Posts: 500
Date:
Permalink  
 

Hi Rebeca

How high is your VL? If it was me and dual therapy was all I could get right now I think I would give it a shot. Back in 2004 my VL was high 17m. I did 3 months of dual and it went to 4m not enough for me to continue. But on the other hand my Doc said I was better off than if I hadn't tryed. I would talk to your Doc to see what he thinks. 50% beats a 0.

Good luck to you 

best wishes



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Rebeca, I`m sorry you`re feeling so down about the prospect of treatment, and I can understand your reluctance to do the dual combo of peginterferon and ribavirin, especially when you`re not sure about how much support you will get. 

It`s a shame you don`t have access to the triple therapy drugs yet, but from what you`ve already told us you have a moderate viral load and a fibroscan score of 2, so I should think you`ll be ok to wait until new drugs to come along, even though that could be quite a while yet.  But I agree with Scruffy that it would be a good idea to talk it all over with your doctor and see what he recommends, as all we can do is give our opinions.

Take care and best of luck to you, whatever you choose to do.  We`re here for you!  smile

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
rebeca


Veteran Member

Status: Offline
Posts: 68
Date:
Permalink  
 

 

Today  I feel really depressed, last week I decided not to treat with dual therapy, because there are  a % 50 of healing in genothype 1a.  As you now, in Spain,at the moment I can´t take another way.

 

Yesterday I started to  beat myself about it.  Now I´m thinking here the new therapies will not arrive at time  for me. I dont know how to cooperate  with this.

 

On the other hand, many of you have talked to friends. I shared with a friend and she was afraid. She dón´t  tell me nothing, but she has moved away. I have the support of my partner, but in his opinion, we will affront it, when I treat, and next question is: What do you want  to dinner,  darling?

 

I feel insecure about my decision and I have  many negative  thoughts. Some support?

Thank you

 



-- Edited by rebeca on Monday 21st of October 2013 07:34:15 PM

__________________

52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> New Members Area -> I need some support
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.