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Post Info TOPIC: Hello Beautiful people :)
Cinnamon Girl


Guru

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Posts: 5629
Date:
Hello Beautiful people :)
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Hi again, C-N-Bleu, thanks for your reply, and that does make sense about the GCSF shots and peginterferon reduction.  Your neutrophil levels are very low but as long as your doctor/nurse is monitoring your blood results carefully then all you can do is keep going.  The main thing is that the tx is working, and your positive attitude must be a great help in keeping you motivated.   You`re right, we learn so much on this journey, about ourselves and how strong we really are, and it does take a lot of strength and determination to stick with it.

Yes, you`ve landed on a good forum here, with a great bunch of lovely supportive people, as you`ve already discovered! 

Take care, and keep going.  Summer`s on its way!  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.

 

 
CodeNameBleu


Member

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Posts: 8
Date:
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Hi Cinnamon Girl,

Hello!! And thank you.

Yes 48 weeks is more like 48 decades. It has been tough, but a girl's got to do what she got to do! The reduction of the Peg Interferon did help, though its still so unstable. Thus my weekly blood work. They were afraid of long term use of the GCSF and stopped at 3 months. At the time my neutrophils were  between .2 and .1 and would rocket to about .6 and .8 after the GCSF but after the peg interferon shot, a few days later i was back to where i was before. I know there may be better options out there, but eh! We dont always get the best of everything, so am just going to Billy Blank myself through this! am halfway through and my only goal is to stay focused on what am achieving and not whats happening to me. there is heaps to learn from such a journey, and i hope everyone who embarks on this treatment comes away with more than just being Hep C cured.  Am ecstatic about the NVD results all through, i pray it stays that way. 

I will keep in touch, this is a great place to draw strength, encouragement, advice and a solid support system.

Thank you and best wishes to you too!



__________________

Diagnosis:2012. Tests Results: GenoType 1/ Viral Load 51,000/ Liver Normal.

Rx started: 10.06.2013 Copegus (Ribavirin) 200mg + Peg Interferon 180mcg . Down to

Peg Interferon 135mcg 3 months later. No Virus Detected (NVD) result to date. Rx duration: 48wks.
CodeNameBleu


Member

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Posts: 8
Date:
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Hi Tig,

I had several lengthy meetings with the docs, there was a lot of discussion about my existing lung problem and the medications i had been on post several procedures. They told me this was the best combination for me. I think they explained some drug chemistry at that time, but i cant really recall exactly what they said. My body has put up a good fight though, a healthy lifestyle does really pay you back. The anemia has improved over time, i was so dreading blood transfusions. What remains is the neutropenia,which keeps dancing about but its still very low. That's why they reduced the peg interferon from 180mg to 135mg. That helped lift the neutrophils' butt off the floor. So far this is working for me,(NVD) and it better stay that way!

This kind of attitude is a prerequisite to making it in one piece because this is one hell of a fight. 

 

Thank You and best wishes to you too!



__________________

Diagnosis:2012. Tests Results: GenoType 1/ Viral Load 51,000/ Liver Normal.

Rx started: 10.06.2013 Copegus (Ribavirin) 200mg + Peg Interferon 180mcg . Down to

Peg Interferon 135mcg 3 months later. No Virus Detected (NVD) result to date. Rx duration: 48wks.
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
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Hi C-N-Bleu, welcome to the forum, it`s good to hear from someone in the UK!  I`m glad you found us!

Sounds like you`re having a rough ride through your treatment (tx), and 48 weeks is a very difficult stretch to get through, especially when you`re suffering badly from side effects (sx).  The reduced dose of interferon would hopefully have helped with the neutropenia, and it sounds like you`re taking all the necessary precautions to avoid catching any of the nasty coughs, colds and flu`s which are going around at this time of year.  I`m surprised your doctor took you off the weekly GCSF (Neupogen) shots though, was that because of side effects?

It`s a shame you couldn`t get onto one of the triple therapy combos, with incivo or victrelis, but I understand the difficulties with getting the funding over here.  Was that the reason you weren`t considered for one of those treatments?

By the way, the new drugs that Tig mentioned (Sovaldi and Olysio), have only recently been approved for use in the USA and it will be a long time yet before they become available over here.

Anyway, congrats on your UND results so far, that`s very promising, and it sounds like you`re half way through!  Do stay in touch, and let us know how it goes.

Best of luck, keep going!  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.

 

 
Tig


Admin

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Posts: 9284
Date:
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Hi again Bleu,

I read your other post first and see you answered some of my questions here! I see you've got GT 1 and are on dual therapy with Peg and Riba. Can you tell me why your doctors didn't start you on either Incivek or Victrelis? Was it strictly a result of the anemia? I'm curious about all of the Tx decisions being made and what each individual was told to expect regarding rates of success. Have you discussed the possibility of using either of the new drug regimens, Sovaldi or Olysio? In light of your severe anemia problem earlier in treatment, they could be an option if you experience further issues.

As I mentioned before, your attitude and positive outlook are great to see and I wish you the very best!

Tig



__________________

Tig

68yo 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!

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CodeNameBleu


Member

Status: Offline
Posts: 8
Date:
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Hello everyone!

So great to be here! I was diagnosed with Hep C Genotype 1 and a viral load of 51,000 in 2012 after going through a procedure for a lung condition. I have to be honest and i say i had no clue what Hep C was. After a lot of research i decided to start treatment as soon as i could, as i could just visualize those viral thingys having a field day on my liver and i don't know what all! I wasn't going to sit back and watch life being taken from me so i commenced my treatment ( peg interferon+Ribavirin) in June 2013. I had to wait to completely recover from the lung procedure. I commenced this journey with an ''expect the worst, hope for the best'' mentality, which was helpful in dealing with the drastic side effects i have encountered. A month into the treatment i became chronically neutropenic and slightly anemic. I was loosing hair and shed like 6 kilos in a month!Because of this, at 3 months they decided to reduce the dosage of the Interferon, as they did not want to keep me on the weekly GCSF shot any longer. So that meant my treatment duration went from 6 months to a year. Yes yes yes i cursed it too..lol Best thing though is i have had a ''no virus detected'' for every single test thus far. I have had to ''quarantine'' myself as am very susceptible to any infection, as well getting vaccinated for everything under the sun. It has been tough..i mean TOUGH.But if this is what it takes to beat this virus, bring it on. My life (and that gorgeous man i will meet one day)  ;)  is worth fighting for!! I have had great support from the medical team,they have been awesome. Their dedication to support me challenges me to not give up. I have not been able to work, and i have to wear one of those funny masks when am allowed to leave home, and it is hard. But i try the best i can to remind myself that i am one of the lucky, having the opportunity to zap these little suckers...oh the glory! I still have a long way to go. And i will continue to do my best. I should be done in time for summer here in the UK and i can already hear it calling. Hep C virus thingys....I'll see you on the finish line. #growl



__________________

Diagnosis:2012. Tests Results: GenoType 1/ Viral Load 51,000/ Liver Normal.

Rx started: 10.06.2013 Copegus (Ribavirin) 200mg + Peg Interferon 180mcg . Down to

Peg Interferon 135mcg 3 months later. No Virus Detected (NVD) result to date. Rx duration: 48wks.
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