week of UND + 36 approach to extended tx

[wyntre9]

I'm continuing to weaken and considering cutting TX short; instead of the 72 weeks for slow responders I'm thinking about the study (can't remember the name) that said to add 36 weeks to the date of UND (mine was week 17).

Does anyone know the name of that study and does anyone have feedback about that approach?

wyntre

[wyntre9]

meant I'm NOW within an hour of Ordway.

[wyntre9]

Thanks for the info, CS.

Ironically, I moved 7 months ago and I'm not within an hour of the Ordway research institute.  i don't think Drusano sees patients but I may call over here to get a couple of referrals.

Thanks very much,

wyntre

PS - I'm going to check the Poordad  (what a name  :) article and see if I feel it's worth my while to download it.   Someone sent me the entire Drusano article.

[amazzon]

Hi Wyn!  I am new to this forum.  I have been on my tx for 43 weeks and also was considering getting off of it again.  First time I had to stop 24 weeks in my tx because my gastro was not monitoring me properly and I developed severe hypothyroidism which landed me in the hospital for a week because of a stroke and a heart attack.  In the hospital it was discovered that my thyroid levels were astronomically high at 149.  Needless to say, I recovered from that (thank God) and looked for another gastro.  This time I did my homework and found one that actually knew what he was doing.  I have been through so much but like Lonestar said, "just do it."  You have to keep your chin up and know that you are not doing this in vain.  If you have undetectable VL, why stop now? There is so much to live for.  People who have not seen me in months comment on how different I look.  I look and feel like **** everyday but I try not to let people see how I really feel.  I somehow get the energy to put on makeup and dress up so that my kids don't worry about me.  People tell me I don't look sick.  I am always smiling even when I feel like crying.  I have lost so much hair I always have it in a pony tail.  I have lost teeth.  I lost my gallbladder.  I have a hiatal hernia with gastritis and erosive esophagitis. I also inject myself with Neuopogen, which hurts like hell soon after you take it.  I cannot stand up for one day sometimes more. Now, at this late stage in the game, I have developed an allergic reaction to the interferon.  My doc told me to get off the tx.  I said no.  I will not do this again.  I can't! It's too hard!  I can't put my family through this.  I saw an immunologist and she decided to help me through this to the end.  She gave me a protocol.  She started my on Prednisone 3 pills before my injection with 2 Benadryl one hour before my injection.  She gave me Symbicort inhaler for everyday and Albuterol for bad days.  She will be monitoring me during the rest of my treatment.  I break out in hives and my lips and eyelids hands and toes swell up.  She also gave me a couple of Epi-pens in case I go into anaphylactic shock.  My family is scared to death but supportive nonetheless.  You need your support group.  You need to know that we, although we have never met, support you.  We know what you are going through.  It's hard...damn hard but you have to have faith.  I put my life in God's hands everyday.  I tell him to do with me as He wills.  I am only a servant.  I figure this to be just another test of faith and I will be rewarded in the end.  I am sending you a big {{{{{{HUG}}}}}.  Please know that I will be praying for you and will ask God to carry you through this.  I also say to myself that the pain I am going through right now does not compare to the pain Christ went through for me.  That alone puts me in check.  You take care and God be with you and everybody else in this forum.  

Amazzon

[CockSparrow]

The article I was referring to is below. It not free, it discusses a lot more than RVR. Goes into when 72 weeks should be considered.

Rapid Virologic Response: A New Milestone in the Management of Chronic Hepatitis C
Fred Poordad, K. Rajender Reddy, and Paul Martin
Clinical Infectious Diseases 2008;46:78–84
http://www.journals.uchicago.edu/doi/full/10.1086/523585

The Dusano article is also available from The Journal of Infectious Diseases 2004;189:964–970
http://www.journals.uchicago.edu/doi/full/10.1086/382279

A 48‐Week Duration of Therapy with Pegylated Interferon α2b plus Ribavirin May Be Too Short to Maximize Long‐Term Response among Patients Infected with Genotype‐1 Hepatitis C Virus
G. L. Drusano and S. L. Preston

Ordway Research Institute, Albany, New York

But it too isnt free. Let me know if want copies.

cs

[wyntre9]

CS,

Thanks for the link.  I'm gonna check it.

What do you mean, the Poordad studY?  But if you have it would love to see it.

lonestar,
'
You're right that I'm in nightmare country.

I was fortunate to get a reprieve today, for a couple of hyours, and actually managed to take a pleasure-drive and admire this gorgeous area I moved to coz of TX.

Thing that gets me the most is the complete randomness of it all - nothing is preductable anymore - and that makes it hard to conserve and preserve and mange time coz ya never know how much of that there's gonna be in any particular day, or week, or month !!!!!

And I'm NOT a control-freak - i swear.  

"We can't even stand the phone or doorbell ringing."

*LOL* - I didn't even put a doorbellIN the cottage and I only gave out the new phone number to a couple of people; plus I put the ringer on soft and the fewest number of rings.

you're right that the only way to finish is to find the willpower.  I do need ocassional reminders, however, like today, to give me hope.

thanls to everyone who chimed in on thie thread and gave some to an exhausted, worn-outfellow hepper.

119 more days to go for the 72 weeks.

wyn

[Lonestar823]

Wyn, You are right about bringing in outsiders.  Those of us who have done the long haul or are at the point you're at now know this.  This many weeks into treatment is nightmare country. We can't even stand the phone or doorbell ringing. I'd have to take naps in my grocery parking lot before I had the strength to go inside.  I think New York did this too.  Like it or not, for me anyway, the only way to finish this is to find the willpower and strength to go on.  Week by week then day by day then hour by hour.  Now may be a good time to pull out that poem Invictus I gave to you.  When I look back through my old calendars I see hen scratches about the Drusano and Berg studies.  I'd count 36 weeks, then add a couple more, then a couple more and then more still.  Intellectually you already know what you must do for your best chance of success.  I know you do. I'd picture myself in a Nike ad, "Just do it," to the very best you are able.  My very best for you Wyn.