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

[nygirl7]

Enough was enough for me...........72 was bad enough but I would have had to do what 96 weeks? Oh forget it at that point I would have just taken the chance with the hep - and I was crazy aggressive but really, ouch I couldn't have done that!

[MYS]

I don't know of any studies about going 48, 60, or 72 weeks past the point of being UD.  My friend told me her doctor treats a lot of HCV patients and she thought his statistics were anecdotal, and that he may even be using her in an anecdotal/retrospective study.  
It wouldn't have been me doing 72 weeks, I had a hard enough time going 24, but my friend is in her 30's, about 20 years younger than I am, so she has a lot more at stake.
MYS

[wyntre9]

I'd like to know the name of the 72 beyond UND study as well.  MYS did say her friend's Dr. was Tobias.  i googled that but most of the articles i found were hep-B related.

Then i got tired.  And then i had to dig up some more about the BB tragedy.  Curiouser and curiouser.

Hey, what you new yawkas call snow we hardy mountain people (i'm one, now) call frost.  *LOL*

i remember the storm that closed the city down;  (don't ask me the year), looking out the window of my Second Avenue studio and seeing skiers gliding by.  :)

FWIW - you can shovel with the best of them.  hahahahaha.

wyn

[NYgirl]

I've never seen any study data about going 72 weeks AFTER clearing the virus and to tell you the truth the 72 was enough for me.  But it worked and I'm glad I hung in.

Do you know where we can find this information?  The last really big study that was done was the Berg study and the Sanchez Tapias study (in Spain) but that doesn't mean we just don't know the name of this new one to search for it.

On the way of a followup as note as soon as the data was gone through and put into English I paid a visit to Dr. Ira Jacobson the lead investigator of the Berg portion. My insurance company completely denied flat out to pay for anymore medications however - the drug companies are PHENOMENAL about giving you more to extend treatment. I contacted Commitment to Care (I was taking Intron) and they gave me such little hassle I couldn't believe it. In fact the only paperwork they required was the script from my doctor and the denial from my insurance (who said it was "experimental but if I needed they'd of course pay for a transplant later").

So it's not really an insurance denial that will cause you to stop.  If your viral load follows along with the guidelines you have every reason in the world to go for it (if you are able to tolerate and it's not easy) because ANY bigger chance of success is a good thing.

WYNTRE - I don't think we're going to get much but a touch of snow...I hope, I still hate shoveling and I don't think that has anything to do with treatment LOL!

[wyntre9]

I don't think the term 'remission' is applicable in hep-c, as it's a virus and not cancer, but i could be wrong.  (wouldn't be the first time).

Just be careful with this 'interferon allergy'.  that is very scary.  A couple of times i had severe reactions to bees, or even flowers, and my symptoms are much like you are describing now;  the closed throat, the swelling, the hives, the trouble breathing.

i wouldn't fool around with that.

wyn

[amazzon]

I am trying to follow the protocol given to me by my immunologist.  I will see her again Jan 7th.  She tells she hopes I'm still in one piece.  I hope so too.

They are very strong people...hardcore stuff.  I know I would not be able to go through this again having gone through what I have gone through and putting my family through this.  My 5-year-old cries at school and tells his teacher how sick I am.  We were watching the video on how to use the
Epi-Pen and I had a trainer pen.  During the time that my husband and older kids were learning how to use it, my 5-year-old cried "Please don't die."  It is heartbreaking to see them go through this.

I was undetected at 8 weeks.  

My viral load was about 11,000,000+ and my bx was stage 3 grade 2b.  After they stopped my first TX at 24 weeks, the bx results were stage 2 grade 2a.  So I felt that was an indication that had I continued, I would have reached a SVR.

My friend is a nurse and I have heard it called remission not only by her but my gastro uses it a lot.  

Steven Tyler from Aerosmith also had HCV and went through the 48-week TX.  I don't know if you read but they wrote that he was now "in remission."  I guess they treat this disease like a cancer.  Dunno. .Ha!

I've called myself Amazzon since I grew to a height of 5'11".  That is what my husband calls me...his amazzon princess.  :-)

AMAZZON

[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  

[wyntre9]

Yup - I'm at week 56.  Ironically, I have felt almost normal for the past 2 days.  If tomorrow is tolerable, guess that means i should do the 200 mile RT Gastro visits on Mondays instead of later in the week.  It drives me nuts how everything in your life revolves around treatment.

Best of luck with your 6 month PCR and be sure to post results.  (gotta be SVR for you).

wyn

[ponyshel]

I wanted to add my 24 week pcr should be in this week...thyroid is not right yet, patience..

[ponyshel]

Hang in there as it gets bad esp. around the 56-??72 ...I was so sick and tired of it also. Try to relax and ride out the bad days. It gets really hard nearing the end but when you are finished hopefully all will look up. Hugs :) shelly

[wyntre9]

Elaine,

you are such a doll to help us all out.  thanks for saying that Nick is incommunicado on shot nights.  i have no one to speak to, anyway, except for the flock, which studiously ignores me on Fridays, so i guess my stress must go through the roof in anticipation - of what, i never know anymore.  For example:  i felt GREAT yesterday, day after peg, and even managed a 20 minute walk in a nearby park and then a sightseeing tour!

guess I'm just a greedy little piggy; wanna feel good ALL day EVERY day!

Glad to hear Nick is on maintenance dose.  From what I've read, that is a good strategy.

MYS,

Oh yes, please post what your friend's Dr. said.  Mine doesn't talk much but he always makes sure i get my meds and contacts me the second my blood levels go into alert.

wyntre

ps - Elaine, now that I know YOU know, i'm gonna haveta try and post a happy thread next week.  *LOL*

BTW - so where is wanda?

[MYS]

Hi, I know someone who was UD at week 12 and her doctor convinced her to do 72 weeks of treatment, she just finished about 3 weeks ago.  He had wanted her to do 84 weeks of treatment, but she thought that was overkill.  I think her doctor had this planned all along - recommending that she extend.  He started her on riba 4 weeks before her first injection, hoping that she'd go UD by week 4.  When she didn't, but tested UD at week 12, I think he knew he was going to suggest that she extend, but didn't tell her until she was very close to finishing the 48 weeks.  
This doctor treats a lot of Hep C patients, and I think he's seen far too many of them who were clear at 12 weeks not reach SVR.  
The percentages of SVR go up dramatically the longer you stay on treatment.  If you'd like, I can ask her what her doctor told her they are.  
MYS

[wyntre9]

Thanks for the kind words.  It sounds like you have been tortured by SX!   Far worse than me.  That's another reason I post this type of thread, I think, to understand how much worse others have it and try to put my measly discomfort level in perspective.

Still, I NEED to express, vent, connect, at least on Fridays when i do the shot!  *LOL*  

Elaine, you picked up on that!  It seems to be the ONLY predictable thing about TX right now.

Amazon, are you scheduled for the 72 week TX?  What is your genotype and VL?

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.