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]

I'm so glad that you are nearly finished but be careful!  I have epinephrine injections coz i have serious allergies and bee stings can do the same thing to me.  luckily, i don't inject myself weekly with bee venom and besides, it's winter.

Wow.  you're really going through a lot.  And your friend did treatment 5 times?  There are a couple of marathon master TX'ers here, too.  i think Andiamo is up to # 7 and Susan did 9 . . . .

Do you know what week you got UND?

wyn

BTW - that's MY blue-front amazon, Venus, in my profile.  (correction; I'm her human)

PS - what do you mean your friend's husband is in remission?  I think with hep-C you're either SVR or not.  Do you mean he's on maintenance therapy?

[amazzon]

I am only scheduled for 48.  My genotype is 1a.  My viral load is undetectable...it has been since I started the treatment.  I don't know if I will be able to go further than 48 weeks because of my allergy to the interferon.  It really is taking it's toll on my body.  I start to swell up and then I get hives all over my body.  I feel a pressure in my chest like my trachea is closing up and I can't breathe.  I only have 5 more injections to go and I will follow through but more than that I doubt my gastro or immunologist will approve.  My immunologist was reluctant to help me with these last 6 weeks but I cried and told her I needed to see this through.  I had to sign a consent form acknowledging the risks...anaphylactic shock and/or death.  It's scary but if this does not work, I will just have to live with my disease.  One of my co-worker's husband went through the treatment 5 times.  Now he is in remission but my friend says he is not the same person.  He is always grouchy and complaining about pains here and there.  He is still fatigued and sometimes goes into a deep depression. The medicine that is supposed to help us islowly kills us.

You can vent all you want...I guess that is what these forums are for huh?

AMAZZON :-P

[wyntre9]

You are absolutely right and i do try the 1-week-at-a-time approach but I seem to LOSE it every Friday (coincidentally the night of injections) and then i log on on forum or community and moan and groan and flip out and get self-indulgent or furious or helpless, hopeless, disgusted and then i do the injection and Saturday's i feel ok and the whole cycle starts all over.

Wish i could get through Fridays a little better coz I'm embarrassed as heck when I reread my friday night rants and feel very wimpish and i keep telling myself NOT to go online but I HAVE to or else i can't make myself do the shot . . . or, i could i would but it's easier after expressing yourself to those who have been there done that or are currently on the journey with me.

I was gonna go for labs tomorrow coz of extreme weakness but it's gonna snow so I won't be able to get outta the driveway 'til the plough guy stops by ......


this next NJ visit SHOULD be the last as once i get the final 3 months of meds in my hand i will switch Doctors.  if it weren't for the distance, i would stay with my current gastro.

i just found out, from sparrow, that drusano's lab is less than half an hour from me.  

Thanks for the advice and warrior words and hugs to all the kind patient tolerant souls here!  :)

wyn

[wyntre9]

Thanks for the info.

I'm gonna google this and see if i can find any studies or, if you know of any, i would appreciate it if you can post the links.

wyn

[NYgirl]

Jez Wyn I wish there was somebody closer to you who could work with your GI for the remainder - like an overseer who could prescribe the meds and talk to the doc or something so you wouldn't have to travel so far.

I went to Dr. J when I was at week 46 and just walking through NYC I thought I would die, cry, scream...but tried to hold on to the thought that if he ok'd it I might have a better chance at SVR.  Sometimes at the end it gets to the point you stop even caring about that doesn't it?

I can just encourage you to do a one week at a time sort of program now. That is I held it together for so long. Thinking "I'm still so far from 72" would have made me quit for sure.  So many in here helped just encourage me along I could never have made it without them.

Sadly you really are almost there...if you close your eyes and just say one more week.  Don't know how it would affect anything to knock off a week or two - nobody does. Drusano was older data then Berg but how could anybody know what's really going on inside you.

It's a chance and a gamble we all have to take.  Go as far as you possibly can and when you CANT do another week then you will know it's time to stop, regardless.

You are such a strong woman - I know how hard you've fought for this and hey...it could be all gone already for good right?

One week at a time. Don't think about anymore than that for now.

Your friend, Deb
PS 72 weeks tx SVR 11 months and counting!   ;)

[MYS]

This is what my friend wrote after people asked her why her doctor wanted her to do 84 weeks of treatment:
"Why my doctor is offering me to do 84 weeks? It's because they are being changing protocols of treatment for genotype 1 and 4. Now they say there is almost guaranteed chance of clearing the virus if you go 72 weeks AFTER you are undetectable. I was undetectable at 12, so they start counting down 72 after 12. If I was undetectable at 4 weeks I would have to do 72+4.
Again, I don't know if I accept this offer, and my insurance has to approve it too. If not, there will be no discussions about either 76 or 84. I'm not sure what I want my insurance to ban it or to approve it."
Her doctor's name is Dr. Hillel Tobias and he's in New York City.  I think she told me what the percentages were over the phone and I didn't write them down, but every extra week increases the percentage of people who reach SVR.
MYS