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

[pooh55811]

Will has not been around in a very long time.

I would suggest that you contact HectorSF. Hector knows a great deal about Cirrhosis and liver transplants. He has had both Cirrhosis and a liver transplant. Hector will give you the information you need and he may very well have specific contact information for you (doctors, transplant centers, etc.)

You can find Hector on the Cirrhosis of the liver forum. Either post on that forum or send Hector a private message and he will respond.

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

http://www.medhelp.org/personal_pages/user/446474

I wish you the best going forward.

[albany]

Hi Will
I remember you from before
i am back now
relapsed and drank from 2012-2015
developed cirrhosis
started harvoni feb, cleared hep c in 4 wks
where was this miracle drug back then eh
now i need to learn about liver transplants
and how sick i should BE to be eligible
wondered if you had any leads news about where i could go on here, and what i should be doing
thnks
albany

[flyinlynn]

Hi Albany

I suggest you write a new question in the cirrhosis group as pooh suggested below. This thread was started by you in August 2008.

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

I also have cirrhosis since Jan 2008 and was cured by harvoni. From what I have read we should not get worse and we might get better. Our biggest risk unless you are decompensated is liver cancer because we have cirrhosis so we need to me monitored by a hepatologist and have at a minimum a blood test called AFP and abdominal ultrasound to monitor for possible liver cancer (HCC).

One good thing to know about is your  MELD score that is how we're are ranked for liver transplant. Mostly we need a MELD score above 15 to be on the list and most transplants occur around MELD 30. My MELD score is 7 lowest possible is 6 so unless I get liver cancer I will likely never need a liver transplant.

Good luck to you
Lynn

[Proactive]

It's good to see you posting here Albany, wish you had better news, but life does throw us curve balls at times. The important thing is to take one step at a time, solve one problem at a time- pick yourself up, dust yourself off, and remember today is a new day, yesterday is old news.
Wishing you the very best and you can always count on support from this side of the keyboard.

We're here for you and rooting for ya,
Pro

[Trish77]

Hi albany - hellluva journey since your treatment ended, eh?  

First off....on the depression.  That's alot more common than you'd think.  Various reasons for it perhaps but doesn't change the fact that it's common to go into a depression after treatment ends.  And not just Hep C treatment, it's a known occurrence after cancer treatment also, etc.  So if you were thinking you were alone in that, you're not.  There are some threads on here about all that, if you need to read more.  I tend to think it's part emotional and part physiological but doesn't matter....it's a known thing for a certain number of people and important to address it.  With everything you have had going on in your life....all I can say is I'm not surprised you would be impacted like that.

Next....I'm sorry you lost your job.  I lost a job I really liked and we had an "arrangement" also...that turned out to be a good thing in the end.  I took on a contract job and got my diagnosis during that time. I was able to do treatment while on that contract job and get that out of the way before starting a good job that wouldn't be interrupted by treatment.  To me....all of that was getting all the stuff out of the way that needed to be dealt with before taking on a new direction in life.  I did end up getting through treatment, getting the good job...and I'm doing well now.  So....maybe this is your time to clean up all the stuff you need to and then get on a good path again....and time to sort out what you want that path to be.

I'm sorry to hear that you lost your 9 years of being clean.  I think you can get that back again.   Someone I know who I think can help you with some thoughts on that better than me and I'll send you a PM about that.  I just want to say that I totally believe in you.  I know what you're capable of and the beautiful person you are....and I know you can get clean again.  I'm rooting for you BIG time, albany.

I saved the best for last!!  :)  Exciting to me that you're going to see Dr. Wong at TWH!!!  I think that's just stupendous news and an amazing step in the right direction.  Good for you.  Dr. Wong is no student.  He's a very knowledgeable Hepatologist in his own right.  He's also really personable and just a terrific guy.  He was my hepatologist and I adored him....probably cause he put up with me and all my questions and the audacity of this little person challenging ideas on how they were treating me...LOL  :)  He's terrific.  The clinic at TWH is very good.  They have a psychiatrist on staff, Dr. Sockalingham.  You might want to consider asking them about seeing him, even as 2nd opinion and also if you do treatment.  He's experienced at dealing with persons with chronic illnesses and Hep C is one of his specialties.  

On top of getting hooked up with a good treatment centre, there are some new drugs coming onto the market that don't seem to be too far off and that have very good success rates.  AS well.....sometimes a different approach can have better results and Dr. Wong will surely analyze how you were treated last time and will be able to determine what might have been the problem. He'll also help you sort out the disability issues and all that stuff.   He's a good and skillful doctor and you are in good hands and I have very high hopes for you, knowing you're going to see Dr. Wong.  

I'm really glad you came on here today.  It's good to hear from you.  Send me a message if you want - I'll be sending you one :) - and I'll do what I can to help with whatever resources I'm aware of.  I think you're on the right track and good for you for making moves in the right direction.

Trish

[willbb]

I wasn"t here  when you were posting before...however just wanted to say hello.as I am also in the care of the "Liver clnic" at TW  and   also live in Durham, Ont.

  I am waiting to re-treat at TW  when the new meds are avail here in Can.

Feel free to get in touch ...if there is anything I can help with..

WILL

[albany]

Hey y’all certainly has been a long time since I have been here-it just hurt too damn much.
Still on and taking more depressions meds.
Going to liver clinic at Toronto western hospital now, thank god, and I think I see a Dr. Wong, all students working under the ever famous heathcote I think.
I see the psychiatrist monthly, he monitors mood & dispenses meds
Been off & on & off & on & off again at work, eventually (just in Sept 2010) I lost that job, now I am Laid off, (due to agreement thing with work).
Thinking about going on Canada Pension Plan- disability, but will I qualify- has anyone else from this side of the border successfully received ODSP or CPP-D while on OR after Tx?
\thinking about how some of the Sx seem to still linger around, or rear their friggin ugly head at time.  
I do not think I mourned my loss- the loss of the possibility of SVR.  being HEP C FREE
I often wonder if I get another chance, I NEED to take it, and SUCCESSFULLY complete it, for my life to go back to the way it was, an ambitious courageous goal oriented / completing loving woman with passion for things.  I just am now, just AM.  
oh ya, I relapsed a yr after failing Tx, badly, - so bye bye 9 years of clean time, and hello playing the game of getting & trying to stay clean, but like I said, I just do not feel the passion I once did, although I do have a desire to be clean, I no longer want to do the things I used to do to stay clean, go to meetings, have a sponsor, do step work, have home group, do service etc.
so- why did I post this, I guess to ask A) has anyone else felt this depression or other Sx so long after completing Tx either way, SVR or no?
and to say HI, did anyone else re-Treat and make all this bad stuff go away??
and how is everyone, I will be catching up - but expect I may see some older names, but a lot of newer ones
thanks for listening
albany S
Durham 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

[FlGuy]

I have read, in various places, that there is a well-respected hepatologist practing there in Toronto.  Is involed in research, trials and direct patient Name is Jenny Heathcote (I think that's the spelling). You can google for more info.

[jmjm530]

Studies basically show that if you're UND by week 24, then treating 72 weeks is reasonable. So why is it such a leap that Dr. D. recommends treating 72 weeks for someone like Smaug who was UND to 10 IU/ml at week 24 and UND to the limit of his tests at week 28? Don't remember the sensitivity used in the 27 week trials but my guess is that being UND to 10 IU/ml would have put him in the 72 week extension group. As to the disinfectant thing, Dr. D. was not referring to office procedures (autoclaving) but to someone's earrings where an autoclave would not be at hand. Obviously the "Expert" Doc format has significant limitations, but I still find it very enlightening.

[jmjm530]

I think we're pretty much in agreement with what you said but I'm still unclear why you state that adding 60 weeks of UND is not supported by the study in question for SLVR's per study data and analysis. That's pretty much what I was saying -- that and I didn't see any support for this thesis beyond 48 weeks of still being detectible. The other issue which you barely touched on -- and more subjective -- is when does it make sense for someone to extend tx to "x" weeks (even with "decent" odds) as opposed to cutting losses and perhaps tx with better drugs in the future. If  I had minimal liver damage and was told I would be cured with 72 weeks of tx, I'd pass, thank you. I know others may disagree.

[drofi]

Hi,
sure, here are some thaughts.
The first important point in discussion about prolongation of treatment, which is a result from all the studies known so far, is the differentaition of low-level-nonresponders from slow-responders. It seems to make no sense at all to continue treatment, if someone is a nonresponder, even at a low level! Too bad, but to tell low-level-nonresponders from slow-responders depends on the limitations of the qualitative RNA-tests. For example: A  test, which has a limit of 50 IU/ml, will show a "negative" even if there are 49 IU/ml in the blood. And even a test with a limit of 10 giving a "negative" result never tells you, if there are no copies at al, or just less than 10. This point is often misunderstood by patients.
The hepatologists try to find a point, where the probabilty of being a non responder instead of being a slowresponder is high, and this is UND or at least a drop less than 2log in week 12 or not UND at week 24.
So far we have the same information, right? A big disadvantage of the studies for prolongation was the rough graduation. It was a rough graduation to separate the UND in week 12 from the UND in week 24.  Doesn't simple human intelligence tell you there will be a difference between the one , who is UND in week 13 and the one who is UND in week 23? Should they treat exactly the same time, 72 weeks? Why? A good theory seems to be, that the longer it needs to get rid of the virus in the blood, the longer it takes to get rid of the infected liver cells. The Arase-Study supports this.
Summary: the longer it takes to get "negative", the longer it takes to treat to STAY negative.
Thera are some limitations in prolongation of treatment: The costs, who should pay it?, the sides of IFN and Riba, who is able to tolerate such a long time? Hence nobody promotes prolongation of SOC for all, just the oposite, some are overtreated, eg. some with RVR and genotyp 2 or 3, but is a big step to individualise therapy more and more. This is, what the study from Arase et al. supports.

[desrt]

smaug48:

week 26 - <10 but detected


Dr. D:

"...72 should be plenty... that should work and then the fibrosis should reverse some too! "


The more I read of Dr. D, the less credence I give to his opinions (or at least his ability to express himself). To tell someone who was detected at week 26 *anything* "should work" is controversial at best.
Also sorta sceptical of his thumbs up to using bleach on HCV as opposed to autoclaving.

[jmjm530]

More relevant to you statment than the above scenario is the following  from the study p 1304 per my link above: "..The fact that all 9 patients in LVR or SLVR group showed non-relapse after continuance of negative HCV RNA of >60 week during tx is important and impressive...."

------
I should also add that I'm not a proponent of this study, nor do I think Albany should extend treatment, as I've stated before.

"...

[jmjm530]

Perhaps I didn't make it clear enough in my second post that I wasn't 100% sure of the study details. In any event, instead of critiquing my read and leaving us all wondering, why don't you enlighten us as to exactly what the study does suggest for someone who is still detectible at week 48 and for discussions sake becomes UND at week 60.

[drofi]

Hi Jim,

sorry, you did not read the Arase-study correctly. They did not suggest 60 weeks after becomming UND. It depends... You should read the study again.

Albany, the chance to be a low-level-nonresponder is huge in your case, as Zazza wrote, or even a true nonresponder. I wouldn't continue. Please list the PCR-counts. What means "close enough" to a 2log drop?, what were the numbers?

Best, drofi

[nygirl7]

I have never heard of any reputable doctor (except for this post of Dr. D) letting someone who would not do a PCR at week 24 and advise to stop treatment if still positive.  

Unfortunately these new little studies that suggest you might get to SVR after week 24 seem to fly in the face of the information that we've gone by for years - that the chance is close to zero.  

some people (myself included) have done 72 weeks successfully BUT I was UND after week 12 but before 24.

To me, it does seem extremely negligent for a test not to have been done, especially since you were NOT UND at week 12 - which is crucial to determining the length of treatment.

I would completely advise you to go and get a second opinion immediately - I believe almost all of us would agree that anyone still detectible at week 46 has failed interferon/ribavirin treatment.  i can't think of one doctor who would not agree on that.

A slow responder would have been way back when you were still not even hitting a two log drop at week 12.

Good luck. I certainly would not consider doing any further treatment at this time but rather stop regroup and then find a new course of action. This present one is just not working it would seem.

[Trinity4]

There is much reference to what "Dr D." says.  I would probably take what he has to say under consideration before anyone else but Dr. D is only one of many experts in this field and his viewpoints don't necessarily reflect those of other leading specialists.  We have to keep that in mind.  He is only one guide of many.

[jmjm530]

We're in agreement she should stop, but Dr. Dieterich did not recommend across-the-board stoppage if not UND at week 24, here in answer to "Smaug"s question re extension: http://www.medhelp.org/posts/show/579284

That said, Dr. D. did not elaborate how long he's allow someone to continue without being UND.

Perhaps you are confusing his answer with Dr. Mitchell Shiffman's comments that I posted in Smaug''s original thread.

[copyman]

your doctors should be sued for malpractice for not giving you a test at VL 24 weeks! This is standard protocol and I have never heard of not having a test after 12 weeks. If this is the case they have caused you needless suffering when you could have stopped at 24 weeks if still detectable. if you are thinking about re-treating FIND A NEW DOCTOR ! Best of luck