start with two or three?

[CherylBarton]

I am just about to start treatment. I have one of the harder genotypes to cure, so may use a third medicine. Has anybody in this forum used the third, just approved last month? Does anyone know if it is better to start with the two traditional medicines and if my viral count doesn't respond, then add the third, or to just start with the three?
Thank you for sharing any knowledge on this subject.
Cheryl

[CherylBarton]

Hi Snapple,
thanks for your response and I think you have a good plan.  
Yes, please. Let's keep each other updated on our research re: food, etc. and managing side effects. A friend of mine not on this site, said when on the treatment, he found he would start to eat, take two bites, and then just couldn't continue...absolutely no appetite. So, he carried Saltines or something similar with him all the time. He said it's hard not to lose a lot of weight. He stuck out the treatment, finished about a year ago now, and he is clear and free, back to normal weight, amount of hair, and feels good.
Thanks again for your thoughts and ideas. And best of luck to you (and me!).
Cheryl

[snapplecandy]

"as for more might not be better"...well, I guess it is an individual decision to make based on your own personal factors and research. I have been watching and waiting for treatment now for 13 years and now finally taking the plunge. My IL28 shows all positive factors exist and my doc says I would have 70% SVR on standard treatment (INF +RIBA) with those results. My biopsy alarming has gone from stage 2 to 3 in just 3 years so I can wait no longer. Im not up for 1 year of treatment and always said went it went to 6mths, I would do it. I'm going for the gusto and taking all the drugs out of the gate because I don't want to do one year of treatment and want to increase my chances of only 6mths.
Cheryl, I have put together a "team" of medical and mental health professionals to manage me. Not all so warm and fuzzy but hopefully I have enough of the warm "accessible" ones to balance out the mix. Im looking at the food and exercise components right now and how best to manage the side effects to minimize them as much as possible and making sure it is all in place before I start in a few weeks. I am new to this community and hopefully we can all share and learn from each other how best to walk this past. snapple

[CherylBarton]

Thanks for your thoughts; interesting thinking about reliability, life, trying to control outcomes.... Trish you are wonderful. I appreciate your support. all of you. And the information that each of you has found or considered.

I talked to my NP some more last evening. I really don't love her manner, but yeah, I can hear the heart in there now. But I still think she is too busy to be my only medical support. I also stopped by my primary care doc's and asked if she is willing to be there for me to help with side effects if the Hep NP and doc are unavailable. I'm waiting to hear back from her on Monday. Will made me realize how important it is to have an accesssible medical team. My primary care doc is quite knowledgeable on the topic and will take my request quite seriously and follow the Hep Doc's protocall...if she agrees.That would make me feel a lot better.

Trish, you've clearly done loads of research and I think you have been in treatment for some time (I think,  looking at your page). You mention "knowing what can increase or decrease chances of success and what you can do to tweak those chances upwards where possible and then giving yourself the best shot you can possibly give yourself by tailoring your treatment approach as best you can in companion with your treatment team."

Can you expand on this and/or can you suggest a site that offers how best to care for oneself while undergoing treatment?

I'm assuming that you mean minding one's health through food and exercise, and of course, nothing at all abusive (how do sugar and caffeine fall in here?) All I've been told is to keep my weight up and eat lots of protein to avoid anemia and of course no alcohol and no also no herbs, as the latter may interact with the treatment.

Thanks for you thoughts and support. All the best to you, too.
Cheryl

[coeric]

Trish - thank you for your reply.

you state " The earlier you go UND with the current tests, the higher your rates of success."

so don't we have the greatest chance to get the earliest possible UND with all three rather than just two?  

eric

[Trish77]

Interesting thought.  The tests we do have that rate the improbability of relapse are when you go undetectable.  Even though the tests are not as precise as you might like, the tests that are available have been able to provide the data that tells us of the much higher success rates based on an RVR and even when going UND earlier in the 4 weeks.  The earlier you go UND with the current tests, the higher your rates of success.  That's relatively reliable data.  

Even after treatment ends...the data is reliable in that still being UND at 4 weeks and then 12 is almost all the way to SVR.   The unfortunate part is for those who fall on the outside of the probability...the ones that are in that minority of people who relapse after an RVR or relapse after an UND result from a 12 week EOT PCR.  I had one dear friend who did that and I really thought he'd bagged it with his 12 week UND result.

Unfortunately, no guarantees with this treatment...or with much in life, for that matter.  However, looking at the research and understanding the variables, knowing what can increase or decrease chances of success and what you can do to tweak those chances upwards where possible and then giving yourself the best shot you can possibly give yourself by tailoring your treatment approach as best you can in companion with your treatment team.... and leaving the rest to the uncontrollable aspect of life....assuring yourself you will deal with what life hands you that is out of your control...seems the best we can do with this treatment, I think.

[coeric]

opps that should have read virions per milliliters.  
blessings to all
eric

[coeric]

the concept of more might not better might make sense to me is if we had sensitive tests to sample the presence of the virus.  but since the most accurate tests can only measure down to a few virions per millimeter we are stuck waiting months after treatment ends to know if treatment succeeded. it we had tests that we could use while treating that would give us assurance that relapse is improbable, then it would be easier to tailor treatment.  but i guess there are no guarantees in life, except death.
eric

[Trish77]

Cheryl - I'm glad to hear that there is a heart and a caregiver under that curt professionalism of your NP.  My NP was my angel.  Keep us posted how your own research goes and what you settle on as best for yourself.  Wish you well with this.

Trish

[Trish77]

Your post illustrates why it's so important for each person to take in whatever information, suggestions, comments are offered and take what applies to one's own situation and make the best decision for themselves.  In your situation with advanced liver damage, regardless what the data says, maybe I would want to throw what I can at it.  Each person and situation is so individual, from liver damage to current life situation, etc.  I wish you the very best also in determining what is best for you and finding the best care you can.

Trish

[coeric]

i've been turning the 'more might not be better' concept over in my mind.  unfortunately the virus could go undetected during treatment and then relapse after we stop treatment. and if we were on just interferon and riba we may end up saying - dang, i should have added the telaprevir!  while i agree that it makes sense to only use as much as necessary, in the real world we may not know how much is necessary.  if does sound like you do have wiggle room, and if the first treatment fails you may have another chance at treatment.  unless of course the world ends in 2012.
eric

[coeric]

Last week i spoke with a hepatologist that was involved with clinical trials of incivek aka telaprivir.   although the doc would not support a lead in with the 2 drugs, she said i could start with interferon and riba and if i was detectable at 4 weeks she would add the telaprivir.  another member of this board, willing, presents an excellent argument about about using a lead in.  you might want to read some of his posts.  trish77 has a good point about IL28.  i had the test run twice and it came back cc both times.  however the hepatologist said that she would not use the test to guide treatment.  like you i am unsure about which way to go, but with stage 3 to 4 and severe portal hypertension (hvpg 11mm) i probably should treat soon.
blessings
eric

[CherylBarton]

I appreciate all the information and your opinions on this issue, Trish. Thank you. Yes, I understand that you and others who have kindly responsed are not doctors. However, many of you are the people who are going through the treatment, have been through it, or will be; and frankly most have done A LOT of research. I find these very valueable, especially the first issue.
I really posed the issue because is, according to my doc, incivek is quite new and still experimental. Maybe that is not right and he is being conservative.
You clearly have some smart suggestions, especially regarding more is not necessarily better, and about working with the nurse. Just since I posted this question, she has been more responsive and let me know her schedule so that it is easier to reach her...or, rather, leave a message for her to reach me.
Regarding the 'wait,' and what my doc will be checking after starting with just two meds is viral load, as I understand it. I will question the nurse on some of the 'type' issues and see what she has to say.
Thank you again. This all helps so much.
Take care,
Cheryl

[CherylBarton]

Thanks for your response, Fred. You are probably right about FDA guidelines.
Do you have any idea why you relapsed? Was it after your treatment was finished.
Best of luck with new treatment.
Cheryl

[Trish77]

Ditto on what Will said, Cheryl.  No doctors here, only opinions as I said.  You'll get plenty of support and the best suggestions we have to offer you and then it's you and your doctor who will determine what is best for you.  It's a serious undertaking to go through treatment and important to choose a good treatment team.  

Incidentally, I didn't see my Hepatologist very often throughout treatment either and his office was down the hall from my NP. :)  I saw him a handful of times and never for very long of an appointment but always when it counted and there was always a great deal of value in a short appointment.   Again, good luck with weighing out all the information and deciding what is best for YOU.

Trish

[willbb]

Cherly...no one here is a doctor.. like I  said above what treatment to do  or not to do  especially dosing advice should only come from your doctor....,ours are just laymens opinions.

best ..Will

[screaming48]

Cheryl I believe the reason for my Doc not doing a lead in is because of the teleprevir (incivek) protocol you start all three at once, with the other one Boceprevir I believe there is a lead in of 4 weeks then add the Boc... ditto to what everyone else is saying..

[Trish77]

I'm going to step outside the box a bit, at least outside the "more drugs is better" box.  The cure rate for a Genotype 1 with an RVR is equivalent to adding a PI.  So I think your doctor is saying that if you have an RVR, then you don't necessarily need a PI.  I'm sure that point of view will be a little controversial however when the cure rate is about the same, I don't see the benefit to a treatment naive person in adding a 3rd drug that brings resistance issues, extra cost and side effects with it unless there is good clinical reason for it.  If you had relapsed in a prior treatment, I'd say that would be different but you haven't.  Your doc is already agreeing to starting a PI if you don't have an adequate response at Week 4.  I'd discuss with him what he means by that - does he mean RVR?  UND for virus at 4 weeks?  I'd also ask if he's willing to do a viral load test at 2 weeks.  That RVR is a great indicator of SVR but going UND earlier in that 4 weeks than later in that 4 weeks is an even greater indicator of SVR.

The other piece of information I think you should consider that would have some bearing on whether you start out from the gate with a PI is an IL28B test.  There are three results to that test - CC, CT and TT - best to least response, respectively. If you are a TT, I would most definitely start with a PI from the outset, as the chances of a TT getting an RVR are virtually zero.  If you are a CC, the most responsive IL28B allele, then your chances of RVR are much higher and you may not need the PI, which is where seeing what the 3 - 4 weeks of SOC treatment results are.  

While you only want to have to do this treatment once, you also don't want to take any more - or less - drugs than are necessary.  I think ribavirin is magic but I wouldn't increase it beyond what is reasonable and the same goes for treatment drugs overall.

Now...that's an opinion only and I welcome input on that from others and perhaps some input would have me changing my view on that, however that's how I see it at the moment.

As for your Doc being far away...in my community we have a Hep Nurse Practitioner who travels to this community and represents the doc who is an hour away.  It helps if you have good communication with your NP though...since she's the one you're going to communicate with the most and if you disagree with her and want to consult with the doctor, you want to know she's going to be open to your concerns.  So she may be curt, but now is a good time to plunge in anyway and see how she responds if you express concerns or have questions you think might rile her.  Not everyone who is curt is lacking in compassion.  Just sayin'.  :)  

Good luck with this.

Trish

[fredpacc]

Hi Cheryl,
I'm pretty sure there are strict guidelines set by the FDA as to the administration of the therapy. Your doctor really can't decide to add medication after the fact, the protocols are usually adhered to. I agree with all the comments and will be going on the triple treatment with Incivek soon.
I wouldn't even consider just the two treatments, I did it once and relapsed - You really don't want to go through this twice if you don't have to. Best of luck, get well soon - Fred

[CherylBarton]

Wow, you are a wealth of knowledge, Will, and thanks for taking the time to respond.

You've clarified for me that because of the two new medications, there are two ways of treating. I am assuming and will verify the third med my doc is thinking about is Victrelis--this is what it sounds like.

You make two really great points: 1. wait for other options because I can (actually this is what I've been doing for the last 12 years). This is still a consideration, but it stresses me out so much knowing I have it...and not being able to have a drink here and there without great guilt has gotten to me. But the real reason is that my doc said 'just do it,' this is good timing for you now. Also he did not seem optimistic about better drugs any time soon, where he has been in the past. Stilll...I know.

and 2. lack of access to timely care. This is really a wise thought. My primary doctor is very accessible, and probably knowledgeable enough...but I willl talk to her about it. good idea.

thanks so much.
Cheryl

[willbb]

  I also meant to add...being stage 1 on the other hand  ..would also allow you to possibly wait  to treat for even more and better efficient meds that are currently in research ( some trials are  running currently without the use of Interferon and also polymerase Inhibitors.

The opinions in the medical community is that these could be 3-5 years out  or possibly longer.

again ..these are just thoughts of mine . you should always be guided by a knowlegable docs advice.

Will

[willbb]

Hi Cheryl.. good news that even tho you have had HCV for a long time you  still have mild liver damage(St1) and that is something that  leave you more options in regards to treating rather than less.

your docs suggesting possibly treating now  because you are healthy and  have a low viral load  seems sound ...as going through treatment starting in a healthy state is always preferable and a low viral load is one predictor of a good outcome.

The 2 new meds that have just been approved (victrelis and Inciveck) have had approx. 70 -80 % success rates in clinical trials for geno type 1"s

Both these drugs are taken with the standard Interferon and Ribavirin for a triple therapy,however what you doc might be talking about when he says take 2 then a third or just start with three....is the fact the Incivek is taken right from the start with the other 2  for 12 weeks(depending on response) then you take the  INF/Riba for the remaining time(could be another 12 weeks or possibly longer.

Victrelis is usually started after taking INF/Riba for 4 weeks as a lead in.then take all three for a length of time (again time depending on response)

As far as being reluctant to treat  because of the inaccessibility of the doc and  the poor response from you nurse  ..would concern me as this is a serious long term commitment you are making to treat and there are side effects often that need to be addressed etc.. so having access ,,to good  and timely care and advice ..to me would be important.  

Just some thoughts...and hopfully others will chime in with their thoughts

Welcome;...;

Will

[CherylBarton]

Thanks also for your response and the welcome to the forum....this is really wonderful to be able to communicate with others facing similiar situations. And it is such a stigmatized disease, what a relief to find compassion.
It does help to hear what your doc is suggesting. Do you know why he is not bothering with a lead-in? Please see my response to Will for why I am not really easily able to get this kind of information.
Thank you so much, Cheryl, the newbie.

[CherylBarton]

Thanks so much Will for your response. Actually, I've had Hep C a long time, researched it ton at first and then forgot all the terminology. But yes, the geno type is one of the 1s.
I will be treated by a Hepatologist. I have been seeing one for 12 years and have had 3 biopsies. My fibrosis has been 1 on all results; inflammation 2, 1, 2. My viral load is pretty low. I didn't want to do the treatment because it seemed like my liver is not getting worse, but when I saw my hepatoligist, he suggested being treated now, while my viral load is low and while I am still healthy. Plus there is the third (or two new meds) to higher the cure percentage.
My real problem and reasoning for asking people 'who really know bcause you have or are experiencing it' is that I live in a somewhat remote area. My doc is from Standford and comes to the area once a month. SOOOoOO many people want to see him, it takes months to get an appt. Then, he is so busy, I don't think he really has time to read each chart very well. There is a nurse that oversees my area, but I always have to leave a phone message and then wait for a couple of days for a response. When I've really probed about this new med, I get different answers along with, it's new, and we really don't know much about it. She is of the mind that it is my choice to start with 2 or 3. My doc suggested starting with 2, then going to 3 if there was not viral load response within 3-4 weeks, but from what I've read, it seems some start with 3. I just want the best chances for cure of course, but it's very hard to get any kind of straight answer. Also, the nurse is pretty curt, so I'm intimadated to really ask questions. She's always in a hurry.
I'd love to hear what you know or suggest.
Thank you,
Cheryl

[screaming48]

Hey Cherly, I will be starting treatment at the end of July, I will be on teleprevir, I did ask the Dr if he was going to do a lead in with the other two drugs then add Tele, and he said I would start all three at one time. I don't know if that helps you, just thought since I haven't started tx yet it might help you out with what my Doc said, and welcome to the forum lots of informative people on here that can answer just about everything nothing is too silly either so if a question comes to you go ahead and ask, alot of compassionate people on the forum who were newbies at one time themselves... I am still a newbie so learning as I go along too.