To Treat now or wait

[streamline569]

So one doctor is wants me to treat now SOC and another doctor wants me to wait the 8 months when the new drugs will be most likely be available. The one who want me to wait is also a liver transplant doctor. Oh in know my paranoia, just trying to make a decision here. Maybe a third opinion is in order. Wonder if insurance pays for third opinions......Also wondering if the IL 28b test would hurt us in the long run if it is found out that we may not be a good candidate for treatment

[eureka254]

"...it's not any easy thing to decide..."
----------------------
... but it IS a wonderful thing to be able TO decide.  
The option to be in a position to choose is truly a gift.  
Don't waste the present options if you have them.
The future may take away YOUR right to decide.  
Once a Stage 4, you start losing the right to make those decisions.
It often becomes your doctor's decision whether to treat or tell you to just wait...
~eureka

[willing]

thought I would pass along my $0.01 on another  approach to this decision. I had also decided  there was nothing to be gained by waiting further and that approval of 1st gen PIs is close enough to be likely within the duration of a newly-started  tx.  So I've started a  soc+ntz protocol and am planning to add either tela/boce by next summer (if available). The protocol I'm following is one reported by Basu at last spring's EASL.
http://www.kenes.com/easl2010/Posters/Abstract130.htm  
which  has  been discussed several times around here. Basically it's just soc +ntz and high dose rbv. I'm also taking 1600mg SAMe, another point discussed in other threads.

Today got my 2w VL which shows  a drop of 2.96 from 1st ifn. If you look at the SVR prediction algorithm on my journal, a vl drop gt 2 by w2 is a strong predictor. Since I'm not sure whether I'll have to wait and/or fight my insco for the PI I'm collecting a lot of early VL data to get a sense of how essential the PI will be (including 1st phase decline, time 0 to 48h, another good predictor, which came in at 1.53 in my case).

No strategy is perfect. A couple of problems with the one I'm following are (1) no approval by next fall (2) the insco fight (3) the shorter post PI period. However it seems I now  have a decent shot at cEVR which should put my relapse odds down to 30-40% or so and the PI even without a long follow-on should be cutting those odds at least in half.

Also, bizarrely, my  platelets which had been hovering at/under range (140-150s) bounced to 200 after my ntz/rbv preload and have since dropped with the ifn - but only to 173. Go figure... Anyway, uncle, I know you're ready to start, but you might want to take a look at that protocol. Best wishes to both of you.

[Trinity4]

The FDA has approved Promacta tablets (eltrombopag, from GlaxoSmithKline) for the treatment of thrombocytopenia in patients with chronic immune (idiopathic) thrombocytopenic purpura (ITP) who have been unresponsive to corticosteroids, immunoglobulins or splenectomy. This indication was based on results from two short-term studies and one ongoing long-term study of patients with chronic ITP. In order to assure the safe use of Promacta, healthcare providers and patients must be enrolled in GlaxoSmithKline's Promacta Cares program.

You're right FlGuy, very doubtful hepc patients would have access to the drug like Neup or Epo.

[FlGuy]

Promacta (eltrombopag) is very narrowly available.  The stuff is pretty scary.  There have been a couple of people here (Hoodbud is one).  

Thing is, an HCV patient can't count on Promacta to be the calvary riding to the rescue.

http://www.fda.gov/downloads/Drugs/DrugSafety/ucm088990.pdf

[Trish77]

Right now you have the option to treat and with low platelets.  Your platelets aren't going to go up, they're going to go down if you do nothing.  Beyond a certain point, they won't treat you if your platelets get too low and you've blown your opportunity - or you'll need a drug like Eltrombopag that is still in trial and not so easy to get access to.  I wouldn't waste much more time thinking about it if I were you.  It's a no-brainer.  In fact, I'd be busting my a$$ to get on it.  

Alot of us started treatment with a healthy dose of fear, in fact that is downright common as none of us knew going in what kind of side effects we'd face and what lay ahead but that's the gamble to achieve a cure.  Never, never let fear hold you back in life and certainly NOT when fear will potentially COST you your life.  Facing fear can be it's own adrenalin boost.  You CAN do this.  Good luck with all this.

Trish

[streamline569]

Thank you . I hear you.....I really do.....

[nygirl7]

Good don't talk yourself out of it Streamline you are running out of time and we are trying our best to protect what is left of your liver and perhaps even save your life., We wouldn't lie after all we've all been there - the doctors have not. They just can't understand no matter how much they might try.

[streamline569]

I am listening. I'm hearing you ....... I'm going through all the necessary tests i have to so I can start treatment. I know I have to start, I'm just trying to figure everything out so I make the best choices for me.

[nygirl7]

My second opinion said he would recommend waiting for the telaprevir. He never said to wait for the drugs are that in the pipe line. No one know when we will see those drugs,.
"

No streamline we do not know IF telepravir or bocepravir will be approved either. They have not even filed to the FDA yet.  We have been hearing they will be out in six months for YEARS.

Hey we've all tried. If you get cirrhotic and it makes it harder for you to clear and you fail it's not on us.  You should listen but..........you wont........we all tried.

[FlGuy]

" I know they say not to obsess about platelets here on the board"  May be I missed it but I haven't gotten that idea.  At least from my view,  obsession about platelets is what's it's all about.  In treatment, many other things can be countered relatively easily ans effectively.  Platelets are a different matter.  If they get too low, treatment can be stopped.  And there is not current treatment regime that doesn't have the significant potential to effect them.  Yes, obsess about platelets !

[streamline569]

Thanks uncledudeness. I just took the test today and that's my thoughts. Hoping to be a cc as well. I know they say not to obsess about platelets here on the board,but watching them drop so fast is frightening. All my other liver functions seem to be good except for the alt and ast of course, but there still not unusually high and my viral level stays around 15 million which one doctor told me low viral load is a sign of liver cirrhosis because as the liver becomes more damaged there is less virus. I don't know about that on though.

Good luck to you too. I'll be watching your posts to see how things go for you.

[uncledudeness]

i had the IL-28 B test done and I'm a CC genotype. so my Hepa advised that I start SOC now. i am stage 3/4, with low platlets (89k). i would have treated regardless of the DNA test. i would rather take my chances and treat now, as opposed to waiting any longer. it's a personal decision, i am now waiting for the meds to arrive and i look forward to my first shot....can't wait for it....

it's not any easy thing to decide, but the only thing we have is hope....that it will work...good luck in your journey.

[streamline569]

I know treating without interferon is out of the question for me. My second opinion said he would recommend waiting for the telaprevir. He never said to wait for the drugs are that in the pipe line. No one know when we will see those drugs,.

Thank you for your concern.

[spectda]

There have been a bunch of people on this forum with low platelets from cirrhosis that have treated, many succesfully. A good hepatologist will understand your condition and monitor you carefully.

As Trinity mentioned, you will be using interferon and ribaviron with telaprevir if you wait to treat. If you plan on waiting until they are able to successfully treat you without interferon then you will probably be extremely sick and possibly too sick to treat any longer.

Ask some of the people on the forum what kind of fear they experience knowing that if they don't get a liver for transplant they will die, along with all the other awful complications of end stage liver disease.

I think NY girl was right on in suggesting you use anti-depressants. This is not an insult. It seems you are being shackled by fear and depression and are not able to make the best decision for your health. The anti depressants may release you from those emotional shackles. If you don't mind getting sicker and dying from this disease then that is your right, but if you don't want that to happen do something ASAP!

I don't know you extremely well and I don't presume understand your phycological health.   You are right that many people have fear and depression and hopelessness about their disease (and many don't), but the key here is that you are letting that fear manage your decisions and these are decisions that in the end could result in much more serious health issues and possibly death. This is the reality of end stage liver disease.

-I hope you can pull yourself together and take care of yourself.

- Dave

[Trinity4]

You will also have to use interferon in conjunction with Telaprevir.  Starting treatment with low platelets whether you are doing SOC or triple therapy, your platelets will drop.
The minimum treatment time with triple therapy will be 24 weeks.  That's 24 weeks of interferon and if platelets are going to be problematic, it will happen long before you get to the end of triple therapy, if indeed you can go to the end.

I'm a stage 3/4 and my platelets began to tank around the 4th week of SOC.  They bounced around, hits some real lows, leveled out but still remained low.  After tx, they've remained robust.

Trinity

[nygirl7]

SOC could be dangerous if it were to lower my platelets anymore then they are, where if I'm on Telaprivir"

for you end stage liver disease doesn't seem to be as big an issue as platelets.  Let me tell you once again, if you have ever watched anyone suffer through THAT you would realize that all this stalling is just nuts. I dont know what else to say that we ALL haven't said before. The time to treat is NOW and you do not know if and when telepravir will EVER be released to the public. What will you do then when you are waiting and praying for transplant and realize it's TOO LATE to do treatment?

[GreatBird]

"As far as mental health. Has anyone gone through this and not felt depression and fear and I'll add hopelessness at times in there."

I didn't have any of that. I did get teary off and on for a few weeks, but I didn't feel *sad* and I knew the meds were just messing with my chemistry and then it went away. I can do that anyway.

I didn't take ADs. Figured I'd start them when I needed them and never did.

Platelets come back when the meds are stopped--at least that's my understanding.

[vik97]

The bottom line is: Should you do everything possible to avoid progressing to cirrhosis?  If the answer is yes then you must treat immediately.

[streamline569]

At stage 3/4 with compromised platelets what do you have to lose by treating and seeing how you respond within a 12 week period?  If your response to SOC is slow you can stop and wait for the PI's.


That is exactly the question I forgot to ask and now have to get an answer to. My thoughts are that treating with SOC could be dangerous if it were to lower my platelets anymore then they are, where if I'm on Telaprivir, it is known that the telaprivir starts working immediately on the virus in some people. Therefore if I were to have a platelet problem at least my liver would have gotten a rest from the hep c virus. I'm just speculating of course and have to get the true answers.

As far as mental health. Has anyone gone through this and not felt depression and fear and I'll add hopelessness at times in there. I'm working on the mental health issues, but I'm also being proactive in all the preparation I need, because treatment is coming, it's just when and what.

[foofighter]

I believe you posted that you are dealing with your mental health issues with meds and hopefully you will find they help soon.

I suggest you make a list of positive and negative predictors for treatment: age, race, bmi, stage, viral load, labs, pre-existing conditions that may make it more difficult to tolerate meds, etc. (as you see in FLGuy's IL28b post).

If you have nothing in PPV column, then you may want to pursue the IL28b to see if you possibly have one thing going for you. That stage 3/4 is a real kick in the teeth when it comes to SOC.

You will get different feedback from doc's and different advice from people here, but it's down to you. Maybe writing it down and seeing it in black and white will help with the decision. Good luck.

[getridofitnow]

I was at stage 1/2 and I decided to treat because I was geno 3 and I had a great chance to kill the dragon. I did kill the dragon but now I'm  8 months post and having sever side effects. I had bad sides like most through the treatment but I survived. But now I feel terrible with no end in sight. The Drs can't explain or know where to start to help.

Look at all options before you chose!

[Trinity4]

I'm not directing this towards you streamline, I am agreeing with nygirl7.  I've been on this board 3 years and nygirl much longer and I've seen members who clearly had mental health issues before ever beginning tx, but could not see it.  They have vehemently denied any issues in that area prior to starting treatment but during or after treatment their distressed emotional state is blamed entirely on the effects of the drugs.

We know this can happen but the blame cannot be put solely on effects of the antiviral treatment and as I said maybe they couldn't see the problem but everyone else could.

Trinity

[nygirl7]

Streamline perhaps an antidepressent is a good idea. Many times people have no idea that they are dealing with such anxiety and depression and then they blame it on treatment/treatment meds but it has really only exacerbated the situation.

Perhaps a good AD would help soothe your mind enough for you to understand that nobody here is going to say you do not n eed treatment. We are offering the best advice we can from our personal experiences but that is all we can do. Only you can take the meds for yourself or realize that perhaps these new drugs might never ever come to market.

[FlGuy]

Point is ....Streamline is already dealing with a full deck.