Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> General Discussion -> Tx for 9 year old - go for clin trial or wait?
Post Info TOPIC: Tx for 9 year old - go for clin trial or wait?
Marfa


Newbie

Status: Offline
Posts: 4
Date:
RE: Tx for 9 year old - go for clin trial or wait?
Permalink  
 

Thank you so much for your advice, opinion and references. Given the fact that i personally managed to get ok thru my treatment, i was thinking to maybe it is better to do it before hcv does more damage to his liver, i was kind of inclining toward going with a treatment.. But after reading about recent tx research in this area (i finished min almost 2 years ago) and your posts, i am certaintly much less inclined going with current treatments. Afterall, i lived with it for my whole life, and did treatment in 36 and got cleaned, and until age 19 i even didnt know i had it. With him, i am at least aware and we are doing annual liver tests. On genotype question - yes, it is 1.. I think 1a. Thank you, all!!

__________________
LC


Senior Member

Status: Offline
Posts: 473
Date:
Permalink  
 

Poor kid, and I know that has to be hard on you too. cry I would definitely want to wait for a kid, but I am waiting for myself too.  It looks like in 2-3 years time HCV treatment is going to be a different ballgame entirely. 



__________________

Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
Bills


Guru

Status: Offline
Posts: 648
Date:
Permalink  
 

I see a lot of wait awhile  here  I agree wait  (Of course if your child is not sick or showing symptoms of advancing damage ) (( And get a second opinion ))   A lot of us had Hep for 30 years and more  Some getting real sick and with other additional illnesses near death but these older ones  don't have much choice    And now they are getting better and  even getting cured

A nine year old just shouldn't have to do this ( If they don't have to )  I would  want my kid to just be a kid as long as they can    Treatments are getting better and easier and better results  maybe  there will be a pill like taking antibiotics when he is grown enough to get a better understanding  for now he has a lot of playing and learning to do

My heart goes out to you  Keep him safe and get tested enough to catch anything and keep reading about the new cures  and success rates  Let others do the trials they can be very risky and no guarantee

 

BillS



-- Edited by Bills on Friday 19th of October 2012 12:19:04 AM

__________________

Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

onabugeisha


Veteran Member

Status: Offline
Posts: 72
Date:
Permalink  
 

My heart goes out to you and your son.  I have not even started treatment.  But  could not imagine the pain you are going through making this decision.  Good Luck to both of you.    Cathy



__________________

     Gen2-diagnosed 2012  probly infected 1982   tx started 10-19-12   peg/riba  24 wks
gatekeep


Senior Member

Status: Offline
Posts: 151
Date:
Permalink  
 

Depending on the severity of your sons Hep. I would have to agree with others and wait for the new treatment on the horizon. Or possibly see if he qualifies for early try outs?

__________________

25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
JIme


Guru

Status: Offline
Posts: 733
Date:
Permalink  
 

I am not a doctor nor do I have any other exp regarding hep c tx other than what I have learned the last 2 1/2 years pertaining to myself. That being said I would not subject a 9 yr old to triple tx or any tx available now unless it was a matter of life and death. I would possibly consider one of the oral tx after they were approved in the next few years but I would not under just about any circumstance, tx a 9 year old with any of the tx out there now. I would get about 10 second opinions too.

You are not in an easy position but I'm sure you will know what to do after you gather all the info you possibly can. Good luck.



__________________

jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Lana, I can understand your desire to treat and clear your son of HCV. You don't mention the Genotype but as your Paed. is mentioning incivek and victrelis, it must be Genotype 1. HCV seems to progress more slowly in children, but you mention that his biopsy shows some inflammation. Peg.interferon and Ribavirin have been approved in children, and seem to be well tolerated but the SVR rate remains the same as for adults. As we mentioned in your other post, it is tempting to wait for the newer(? safer) drugs. As with all new drugs, it may be a long time before these are approved for children. This must be your decision, based on the info. your doc. gives you. I don't know what I'd do!



__________________

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
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

 Hi Lana, I really feel for you being in this position, it`s one thing making the decision for ourselves to go ahead with treatment but quite another when it`s your own child.  At the end of the day it has to be up to you, once you`ve research all the facts, taken on board the advice of your paediatrician and weighed it all up.  Having said that, if I was in your position I would definitely want to wait until better treatment drugs are available with less brutal side effects, unless it was critical that your son received tx before then.

 Here`s something else to consider, this is an article I posted in our Knowledge Base a couple of months ago, regarding the effects on interferon therapy on children....

http://hcvadvocate.blogspot.ca/2012/08/height-weight-and-bmi-changes-seen-in.html

I don`t want to scare you, but in your situation I would want to get as much information as possible before deciding whether to go ahead with this clinical trial.

Wishing you all the very best of luck, do keep in touch and let us know what you decide. 

~ Jill xx







-- Edited by Cinnamon Girl on Thursday 18th of October 2012 01:21:34 PM

__________________

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.

 

 
Marfa


Newbie

Status: Offline
Posts: 4
Date:
Permalink  
 

I went thru pegasys/ribavarin treatment few years ago and got cleaned after having hcv for all my life (got it from a blood transfusion after my birth). Unfortunately due to labor complication with my son, he got it from me too. I have been monitoring his liver thru blood tests annually and they were pretty much ok. Few month ago we did liver biopsy for him and he has a mild inflammation. Our pediatrician liver doc suggests to start treatment before it makes too much damage. I know that both new triple treatments are not approved for age under 18, but we have a chance to participate in clin trial for either of them (with invicek or boceprevir) in CHOP (which is one of the best children hospitals in US)... So i am doing research- what should we do: wait for them being approved, wait for new oral only treatments that are being worked ok, or go with clin trial an then with with meds.. Any opinions or experiences to share.. Specifically around treatment in kids or special effects of either of these 3rd components: do they have worse effects than rib/peg.. Thank you everyone and good luck to anyone who is currently on treatment. Lana



__________________
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> General Discussion -> Tx for 9 year old - go for clin trial or 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.