Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> Post Treatment -> Worth the wait
Post Info TOPIC: Worth the wait
Rescape


Member

Status: Offline
Posts: 11
Date:
RE: Worth the wait
Permalink  
 

Neil,

Congrats! Regarding the phlebotomy issue, it is often done to help people who have hemochromatosis, or iron overload.  This can be a genetic condition running in families and leading to cirrhosis or liver cancer.  Several of my brothers( I had eight) and I have this condition.  It was as a result of the blood center rejecting a routine donation of mine that I initially found out I was positive for Hep C.  That was 8 years ago, and I am only finishing my six months of treatment now because of my doctor's advice that the original dual therapy for Hep C was not that effective for my genotype.  As Incivek and other newer therapies became available he encouraged me to go ahead.  Two of my older brothers have passed with hemochromatosis as a complicating factor.  When my treatment is finished, I will resume testing for the iron overload,and probably resume the regular phlebotomies. The doctor suspended them for the duration of treatment as blood counts got very low to the point of needing both procrit and neupogen for several weeks. I am fortunate to live in a state where the blood center will do the phebotomy for free, even though the blood must be disposed of as defective.  I have directly benefited by their work in lowering my iron level.  It is a complicated health care world we live in and I for one am enormously grateful for the skill of people in the know.  Knowledge is a beautiful thing; understanding even better.  I try to tell everyone I can of my family's experience with hemochromatosis because it is very illustrative of what works and what sometimes doesn't.  For Steven and Thomas.

Mark



__________________
dustbear


Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

Excellent and wonderful news!  Hurray!



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
2willy


Senior Member

Status: Offline
Posts: 256
Date:
Permalink  
 

Way to go Neil, I have 37 days to go and I was undetected for second time last week.  Hard go but good news like yours keeps me moving forward

Bill and his girls



__________________

Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
Bloomster


Senior Member

Status: Offline
Posts: 235
Date:
Permalink  
 

Hi Neil, congrats on the great news! 



__________________

My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
Biggyb


Guru

Status: Offline
Posts: 820
Date:
Permalink  
 

Tig56 wrote:
mallani wrote:

Hi Neil,

Another Victrelis victory! All the Iron indices are raised in HCV, particularly during Rx, and it's great to see them drop. Recover quickly but at your own pace. Cheers.

 It's fantastic to hear about another Victrelis victory!! That's the kind of news that makes us Triple Therapy w/ Vic soldiers smile and cross our fingers ever more tightly! 

 I totally agree and am smilingbiggrin. Keep em coming.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

mallani wrote:

Hi Neil,

Another Victrelis victory! All the Iron indices are raised in HCV, particularly during Rx, and it's great to see them drop. Recover quickly but at your own pace. Cheers.

 It's fantastic to hear about another Victrelis victory!! That's the kind of news that makes us Triple Therapy w/ Vic soldiers smile and cross our fingers ever more tightly! 



__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Karen


Senior Member

Status: Offline
Posts: 396
Date:
Permalink  
 

Congratulations!!!  

 



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Neil,

Another Victrelis victory! All the Iron indices are raised in HCV, particularly during Rx, and it's great to see them drop. Recover quickly but at your own pace. 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
Matt Chris


Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Hey Neil 

Thanks great news, keep them UND coming.

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! 
Neil_Canuck


Senior Member

Status: Offline
Posts: 228
Date:
Permalink  
 

A phlebotomy is a process where a quantity of blood is removed every 2 weeks

I believe(maybe not) to reduce whatever your blood is saturated with. For me it

was thought to be iron but now it doesn't look like itwas. The hematologist told

me that whenever there is liver problems, in my case Hep C, then the body

produces more ferritin. He wasn't concerned at all when I saw him 6 mths ago.



__________________

58 yrs, cirrhotic, Genotype 1b 48 weeks Victrelis triple, SOT 7/13/12 victrelis started week 5. Starting VL 4,000,000  Wk 8 33 copies  Wk 24 UND, EOT UND 6 months post Tx DET. The battle goes on.
Biggyb


Guru

Status: Offline
Posts: 820
Date:
Permalink  
 

Neil_Canuck wrote:
Good news! You were undetected at the end of treatment. So we will do this test again

6 months after treatment, if we get same results, you are considered cured.

Have a great day,

 Great news!! so we can wait now, i talked my Doc into 3 month check.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
GodsGrl


Senior Member

Status: Offline
Posts: 113
Date:
Permalink  
 

Awesome News!!! Super happy for you enjoy your success!

__________________

Geno Type 3A  Double TX 1-30-13 2 1/2 week labs VL >43 Lab error on 12 week VL no result

 
Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

Very cool!! That's what we all want to hear and will keep our collective fingers crossed that your good fortune continues! I'm curious though, what exactly are you referring to when you mentioned the "phlebotomies"? Never heard that mentioned here before. Thanks and stay positive, you're done! That has to feel great!



__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Neil_Canuck


Senior Member

Status: Offline
Posts: 228
Date:
Permalink  
 

I finished triple therapy with Victrelis on June 12th.

Received email today from the nurse:

 

Good news! You were undetected at the end of treatment. So we will do this test again

6 months after treatment, if we get same results, you are considered cured.

Have a great day,

 

Also went to see my hematologist today and he said my ferritin level had

dropped from 1200 to 800 so I probably won't have to get phlebotomies.

That makes me think of leeches the way they did it or I guess still do in some cultures...lol

Anyway, the arduous journey was worth it and I'm feeling stronger every day.

Good luck to all still doing Tx.

 

 



__________________

58 yrs, cirrhotic, Genotype 1b 48 weeks Victrelis triple, SOT 7/13/12 victrelis started week 5. Starting VL 4,000,000  Wk 8 33 copies  Wk 24 UND, EOT UND 6 months post Tx DET. The battle goes on.
Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

Hey Neil, thanks for that explanation. Your description reminded me of something and I finally figured it out. We have doctors here locally that used the process called "Chelation Therapy" to aid in the reduction of Iron among other things. But it didn't involve removing blood. Instead a chelating agent was infused which aided the removal of the offending agent by the liver and kidneys. Having compromised blood flow through the liver might prevent the use of chelation therapy. It's all very interesting nonetheless, but as you mentioned, it does sound vaguely like Victorian era practices!

 

I just love this bleeping auto correction! hmm



-- Edited by Tig56 on Tuesday 9th of July 2013 11:22:55 PM

__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Neil, that`s great news, congrats!  Sounds like your recovery is going well!

Yes, it`s not unusual for people with Hep C to develop high iron levels, which is why the general advise is to avoid taking vitamin supplements with iron included.  Sometimes phlebotomies are needed to reduce the levels, but it`s good to know you`ve got nothing to worry about there!  (and no leeches!  wink)

All best wishes for SVR!!  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.

 

 
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> Post Treatment -> Worth the wait
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.