extend treatment news / Albany

[albany]

So I got the news today that after 46 weeks of Treatment for HEP C that the virus is still detectable in my blood.  

I have genotype 1A and have been on Pegetron since September 2007, doing a 48 week course of weekly injections and 5 Ribavirin a day.  My viral load was something like 1,141,000 PRIOR to treating, and think stage / grade was 1.5 & 2.   After twelve weeks they tested the viral load, and I had achieved ‘close enough’ to a two log drop (which translate to a drop to a level of 10’s of thousands from millions?).  
What this means is that I was to continue treating and push for a further drop to the desired “undetectable” level. After 46 weeks I did the viral load test last week, and was informed today that I am still detectable, although the viral load is still dropping, and that I am a “slow responder”.  

Now what?  I had asked my nurse ALL along, throughout the treatment, if we would be able to extend treatment IF I had not achieved the viral responses, and was repeatedly told that in her experience it is not feasible. She said that it was her experience that the doctors in Canada do not seem to go for extended treatment and that this was partly due to difficulty getting approval for an extended “section 8”: (read government approval for funding assistance).  I referenced the practice that I had read about in the USA where treatment can be extended from 48 weeks to 72 weeks to improve the response and sustain it.  

When I met with my doctor last week, this was the first thing he said- we may have to extend treatment if the virus is still detected, another 6 months he said, and ordered the blood work so there would not be an interruption in treating as my last ‘originally’ scheduled injection would have been this Friday August 8th.  

So not I am here- days away from what I thought would be my last injection- sad that I have to go, yet determined to continue to battle.  Besides the most obvious reasons for wishing treatment to be done, like an end to the terrifically horrible, cycling, various and ever present side effects I think I am more focussed on my the fact that I will have to delay getting my hair done – (lightened or red, whoo hoo,) and getting a new bed set- as mine has suffered horribly through this hell too!

So- what is the purpose of this post?  Really, I think I just wanted to inform you all of what is up.  There are a few more specifics that I hope to attain, and will actually post more direct questions to seek your experience, strength and hope in following posts, as I think this is more of a vent here.  

Thank you all for listening, and for allowing me to share my news with you.  Thank you all for being here for me throughout this treatment.  Although I do not have the energy to post much, I do read and stay in contact with this forum and believe it has been a great source of comfort to know I am not alone.  
Albany – from Toronto , ON

[albany]

Thank you all for your advice / support / and referrals.  FINALLY got some numbers, and am here hoping someone get help me to translate. I will also post this query as a separate thread ... in case this does not get bumoed back up.i was told that my pre=Tx load was 1, 141, 000 ... and now i have the 'formula /weirdness' numebrs, for all the viral load tests.  i have NO idea how to calculate- make it a number i can understand / compare- math is NOT my frist langauage, nor do i like it much. i will post as i reda it, and hope SOMEONE can help .... by the way- you ALL rock!

(dec 13 2006)      pre-tx = 2.14 E+6 IU/mL
(oct 16/07)        4 week = only says virla RNA is > 600 I.U. / mL
(dec 12 /07)      12 week = 5.52 E+4 IU/mL
(July 23/08)      FINAL 46 weeks = 1.93 E+6 IU/mL

the final was taken two weeks prior to the finish- to see IF detected- to decide IF tx to be extended.
ANYONE have any idea how to run these numbers / code thingamjiugs to something i can compare

or any thing?
thanks again all, i am truly gratful for all your supprt and help, and have read ALL the posts very carefully, and appreciate all your informed / educated / expereinced input.  
I have been so sick n depressed/ just overwhlemed to repond.  
Hearing what you all said was what i had been hearing in my heart  / head already- but wasn't ready to listen to me.
holy hell, you know what- i sound crazier thaan i am when i say it that way-
oh well, i didn't answer myself, and that is what counts right ----  anyways
i eagerly anticpate ANY reposnse, pr dreiction to the code breaker formula

Thanks
Albany S
Durham ON

[Trish77]

Hi Albany, I saw your post this morning and I haven't had time to answer, working 12-14 hour days and then some lately.  I'd recommend you contact the Liver Clinic at Toronto Western and while that is where Dr. Jenny Heathcote is, so is Dr. Wong and you might want to give him a spin instead.  He is my preferred doc there and I have been under the care of three hepatologists there in various ways.  I find him to be very knowledgable and doesn't mind answering patient questions. He's known to be the "aggressive" doctor when it comes to treating .. so a second opinion from him would perhaps be very useful with regards to stopping treatment or continuing.  Here's his link:  http://www.uhn.ca/Find_a_Doctor/results.asp?MDid=803  You can also look up Dr. Heathcote in the same way.  Gotta admit .. I'm kinda lukewarm on Dr.Heathcote.

I haven't had time to read up through everything.  All I can say is that I find it concerning to read that you're on treatment at 46 weeks and still detectible and that there was no 24 week PCR.  When DID they give you PCR's?  SOC is usually that if you're still detectible by 24 weeks, then your chances decrease so low as to make more sense to discontinue.  

I would second the others, that stopping treatment at this point makes more sense based on what is known about success rates when viral load still exists at 24 weeks, let alone 46 weeks when treatment regimen is 48!!  Particularly with your level of liver damage, you've got a bit of breathing room to step back and regroup and investigate your options.  I'd like to see you with a different medical team who is very up to date on treatment protocols and what's current.

However.  That's my opinion only.  I hope you hook up with a good hepatologist asap for a second look at your situation.  Good luck, Albany.  If I can support you in any way, please let me know.

Take care.

Trish

Trish

[zazza]

Jim, you are correct, I misinterpreted Dr D. I must have read in my own opinion in these words: "As long as you get to < 10 and stay there I would generally treat for 48-52 weeks (...) after they become undetectable." I interpreted it as being "as long as you get to < 10" AT WEEK 24 "and stay there". My mistake.

Trinity, I totally agree with you that Dr D is "only one guide of many".

[nygirl7]

Is involed in research, trials and direct patient Name is Jenny Heathcote (I think that's the spelling).

-------------

I think this is the person that Veggie went to that said that all skinny people achieve SVR ;)  Do you remember those days they just flashed before my eyes.


Still believe that it's a go until week 24 and that is the cut off and defining factor myself. How many weeks treatment would be enough - after a while unless you are stage 4 and working on maintenance of your liver enzymes.....it gets toa point where it ludicrous to continue (and yes I did treat for 72 but was und by 24 had I not been I would have definitely stopped and tried different drugs or protocol, if something doesn't work it doesn't work).  Losing a thyroid and all the other life long problems that I"ve accumulated from one course of treatment I can say matter of factly - these meds might cure one problem and lead to long term problems that are much worse. Just not worth it after the 72 point that is defined in Sanchez Tapias. Not without a MUCH greater study done than are currently out there.

[jmjm530]

I think "not want(ing) to win the discussion" is a bit of a red herring here. I'm just trying to answer your original post and put out some information. Your original post where you suggested I hadn't read the study properly regarding extending tx for 60 weeks past UND for SLVRs.

I conceded that maybe I hadn't, and asked you for clarification/correction a couple of times but so far I haven't received any, so I'm starting to assume that maybe I was correct to start with.

And didn't you just tell Smaug "I wouldn't continue" -- so much for not interjecting your "advice" in a "virtual forum". And no, I don't think "it is not worse to notice the study" or I wouldn't have posted it to start with. That doesn't mean I can't commen/give personal opinions on what I see are it's limitations.

But back to the "advice" thing re "to treat or not" and extending. When you see so many posts talking tx protocols and stats *without* discussing the risk/reward equation and the option not to treat or not to extend -- don't you think it important that someone, anyone, remind people that just because a study says your chances of SVR are better with 72 weeks that doesn't mean that everyone should extend? I think we can give advice/opinions in a general or  "what I might do" scenario and give people here credit enough to factor in their own individual "factors".

You can have the last word if you want.

-- Jim

[drofi]

Hi Jim,
to extend treatment or to start treatment at all is depending on the individual situation. I am not able to advice people to treat, or to treat longer, or to wait for the silver bullet of new substances. Especially not in a virtual forum. Doesn't such an advice depend on many factors, not available for you or me sitting in front of the PC instead of the patient?  I just wanted to provide some new information about the study from Arase and individualisation of treatment. If you think it is not worse to notice the study, it is up to you.
I do not want to win the discussion,
all the best, drofi