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Post Info TOPIC: Looking for moral support: the desperate waiting!


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RE: Looking for moral support: the desperate waiting!
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Hi again Rebeca,

I emphasize with your despair at waiting.  It is depressing that countries such as Spain cannot afford Victrelis or Incivek.  Here in Australia it is not easy to get on triple either!  Sovaldi will not be Government funded here for 3-5 years, so only the rich are being treated. Shame.



__________________

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



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Michelle22 wrote:
newmex wrote:

Hi Michelle,

Glad to see you on here. Great looking family. I am kind of new myself on here, but I do know if you post some more details  about your hep c (viral load,liver stage, and doc reports etc,) every one is good about getting you up to speed pretty quick. the more you know the better decisions you can make. Have a good day, hang in there there, is a light at the end of the tunnel.


Thank you John, I don't know much about my viral load etc, all I know is that I need to get treated and cannot - my silver lining is my liver ultrasound (can't spell scriossis) was a reading of 4 which is normal. Just so much to get my head around now it is out of the sand and it is fast reminding me why I put it in the sand in the first place. Even I didn't realise how badly HepC ravishes your body. I just wanted to let Rebeca know she isn't alone the way she feels, sometimes it feels like the wait is never ending but I am waiting too and maybe our wait is for a reason.  


Hang in there, you might find the waiting and worrying is the worst part. If you liver is in good shape, that's half the battle. You will probably have time to pick and choose an easy an easy treatment. Good luck if I can help let me know



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John


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rebeca wrote:
newmex wrote:

hello Rebecca ,

yes ma'am it seems like waiting is a big part of this treatment, whether you are waiting to treat, waiting for results or waiting to finish it up.

Right now I am on the Incivic and also waiting, lol.I am on my 9th week of it and hoping for the best.  you never know for sure how its working til  its over. Hang in there, treatments are changing so fast it will be a completed different scenario in a  couple months. 

I have had it for years and I never thought much about how hard it was for some countries to get treatment. so sad.  Have a good day, need to get up and ready for work(yuck). Stay in touch and leyt us know how its going. 


thanks for your words,it´s true, waiting is part of this,

You are in week 9! 
  How do you feel?

Big huge

 

 


Rebeca,

Actually don't feel too bad, have itching, ( I use generic loratadine,  an over the counter allergy med for it First ) some fatigue, ( rest as much as possible, especially weekends) keep skin moist, drink lots of water, and doc put me on some anti depressants, which help  LOADS.  Good luck, if I can do any thing for you let me know.



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John


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Newmex. Are you on the 24 week plan? How are you finding the incevik? 



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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Hiya,

I was diagnosed last year March and my first instinct was to treat. I aso went through several changes of mind, emotions and finally a decision. I begin treatment next month and now I am glad I waited. I am now mentally prepared, used to the idea, and learnt about the condition. Believe it or not time has flown and for you it will too. Before you know it it will be Jue. Just hold on in there :D



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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newmex wrote:

hello Rebecca ,

yes ma'am it seems like waiting is a big part of this treatment, whether you are waiting to treat, waiting for results or waiting to finish it up.

Right now I am on the Incivic and also waiting, lol.I am on my 9th week of it and hoping for the best.  you never know for sure how its working til  its over. Hang in there, treatments are changing so fast it will be a completed different scenario in a  couple months. 

I have had it for years and I never thought much about how hard it was for some countries to get treatment. so sad.  Have a good day, need to get up and ready for work(yuck). Stay in touch and leyt us know how its going. 


thanks for your words,it´s true, waiting is part of this,

You are in week 9! 
  How do you feel?

Big huge

 

 



__________________

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. 



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Michelle22 wrote:

Moral support is definitely something I am looking for on pages like these. I am not sure if this is American or worldwide. I am genotype 1b, I was only genotyped about 8mths ago but diagnosed 11yrs ago. I was all ready to start my triple therapy on 8th January and a routine ECG showed that I have had a heart attack (I am 32 years old) and now I am having to wait for an echo cardiogram to see what state my heart is in and get the angina under control. My whole world kind of ended as I had everything in order and was prepared to start and as with most things in my life BOOM! I am now in the mind set that maybe I would I be better waiting for the sofosbuvir to be licensed as it is 12 weeks of treatment opposed to 48weeks of treatment. I do not understand what F3 means. I have been an 'ostrich' about the whole HepC thing and buried my head in the sand so I have a lot of learning and catching up to do. I know this is probably not helpful but it was more to let you know that you are not alone. I am lost, scared and feel very lonely as if no-one knows my daily battle. PS I am a new user on this page.


Hello
I understand it is very hard to what has happened to you, but perhaps it has  been better, because if you can treat with sofosbuvir, you'll have fewer side effects and a shorter   therapy. In this forum there are people who are dealing with sofosbuvir.
Regarding the moral support, we can think we are many fighting against this, there are incredible stories that show   this can be overcome, and also there is much understanding.

A big hug

 



__________________

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. 



Member

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Posts: 14
Date:
Permalink  
 

newmex wrote:

Hi Michelle,

Glad to see you on here. Great looking family. I am kind of new myself on here, but I do know if you post some more details  about your hep c (viral load,liver stage, and doc reports etc,) every one is good about getting you up to speed pretty quick. the more you know the better decisions you can make. Have a good day, hang in there there, is a light at the end of the tunnel.


Thank you John, I don't know much about my viral load etc, all I know is that I need to get treated and cannot - my silver lining is my liver ultrasound (can't spell scriossis) was a reading of 4 which is normal. Just so much to get my head around now it is out of the sand and it is fast reminding me why I put it in the sand in the first place. Even I didn't realise how badly HepC ravishes your body. I just wanted to let Rebeca know she isn't alone the way she feels, sometimes it feels like the wait is never ending but I am waiting too and maybe our wait is for a reason.  



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Always looking forward xXx


Senior Member

Status: Offline
Posts: 157
Date:
Permalink  
 

Hi Michelle,

Glad to see you on here. Great looking family. I am kind of new myself on here, but I do know if you post some more details  about your hep c (viral load,liver stage, and doc reports etc,) every one is good about getting you up to speed pretty quick. the more you know the better decisions you can make. Have a good day, hang in there there, is a light at the end of the tunnel.



__________________
John


Senior Member

Status: Offline
Posts: 157
Date:
Permalink  
 

hello Rebecca ,

yes ma'am it seems like waiting is a big part of this treatment, whether you are waiting to treat, waiting for results or waiting to finish it up.

Right now I am on the Incivic and also waiting, lol.I am on my 9th week of it and hoping for the best.  you never know for sure how its working til  its over. Hang in there, treatments are changing so fast it will be a completed different scenario in a  couple months. 

I have had it for years and I never thought much about how hard it was for some countries to get treatment. so sad.  Have a good day, need to get up and ready for work(yuck). Stay in touch and leyt us know how its going. 



__________________
John


Member

Status: Offline
Posts: 14
Date:
Permalink  
 

Moral support is definitely something I am looking for on pages like these. I am not sure if this is American or worldwide. I am genotype 1b, I was only genotyped about 8mths ago but diagnosed 11yrs ago. I was all ready to start my triple therapy on 8th January and a routine ECG showed that I have had a heart attack (I am 32 years old) and now I am having to wait for an echo cardiogram to see what state my heart is in and get the angina under control. My whole world kind of ended as I had everything in order and was prepared to start and as with most things in my life BOOM! I am now in the mind set that maybe I would I be better waiting for the sofosbuvir to be licensed as it is 12 weeks of treatment opposed to 48weeks of treatment. I do not understand what F3 means. I have been an 'ostrich' about the whole HepC thing and buried my head in the sand so I have a lot of learning and catching up to do. I know this is probably not helpful but it was more to let you know that you are not alone. I am lost, scared and feel very lonely as if no-one knows my daily battle. PS I am a new user on this page.

__________________
Always looking forward xXx


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Posts: 68
Date:
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hi all,
I read every day the news in this  forum to keep me informed, and I want to express my empathy with  all who are on treatment, fighting. You are doing really good, step by step.
Today I want to share with you my mood. I feel that I would like to treat me as soon as possible. As you know,  I must wait until June, to know if they can offer the triple ( with incivec), it is an economic decision. The desperate waiting!  I read every day that there are a lot of people on treatment, triple or better, or in a clinical trial, and sometimes I get depressed because I think my time never comes.
 I think that in June they will tell me that I should wait more, until I have a F3, to access the triple therapy, and I cannot shake those negative thoughts.
 I cannot do anything but share it with you.
Thanks for being there.



__________________

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. 

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