Everyday I struggle

Everyday I struggle with the decision to treat now or wait, but I'm getting all the test in order so when it's time I'm ready. This truly feels like the hardest thing I've ever had to decide.

[IAmTheWalrus]

I haven't seen any staging (biopsy) results if you have posted them. I would think that if your disease progression was still in early stages that you would be able to wait for telaprevir or boceprevir. If not, then it is a tough decision and one you will have to make personally with the assistance of your doctor.

Wishing you the best of luck,
Brent

[orphanedhawk]

All I can say is my heptalogist is advising people to wait for the new meds unless their livers are in poor shape.
.
Perhaps you could give yourself a deadline, like if the new PI's aren't available in 6 months, you'll start treatment, then.
Try to find a way to give yourself peace of mind.

[Bill1954]

I can’t imagine what you’re struggling over, Streamline. You have stage 3-4 fibrosis, your platelets are diminishing, and the window to undergo therapy is likely closing rapidly around you. If you fear possible side effects of interferon therapy, you should be terrified of end stage liver disease.

If it were me, I’d have some faith in my doctor. You seem to have trouble with critical thought; your doctor is trained in weighing risk/benefit and making these decisions for you.

You received some pretty good info from others in here previously; this is a list of your thread history to review:

http://www.medhelp.org/user_posts/list/1301567?personal_page_id=1382621

As well as one in particular that covers this topic in detail:

http://www.medhelp.org/posts/Hepatitis-C/paltete-question/show/1361741?personal_page_id=1382621#post_6217288

There isn’t much anyone can do to remove your fears; you’re going to have to take the initiative and dive in. For what it’s worth, I didn’t find treatment too awful; I got tired and grumpy towards the finish line, but I’d do it again in a heartbeat if it was necessary.

If you try and eventually fail, which is a real possibility given your genotype and degree of liver damage, you can try again later when/if new meds are available. In the meantime, you might surprise yourself and beat this before any new interventions are available.

Right now you have options; if you continue to delay, those options are likely to diminish.

Good luck,

--Bill

[IAmTheWalrus]

I did not realize where your disease stage was currently. Waiting is for those with early stages (1 & 2). It certainly sounds to me like time is critical and I would not waste it!

If it is fear of the treatment, don't be afraid. It is not all the bad. We joke around with gallows humor like it is "hell", but really it is just like a long case of mile flu for the most part. The alternative is much more grisly.

I treated for 84 weeks (Bill is the only one I know that treated longer) and relapsed, but it reversed my fibrosis by one stage and bought me time to wait so I can take advantage of the new PI drugs. The same might happen for you. You definitely do not want to wait around while you advance to ESLD.

Brent

[HectorSF]

Great advice Bill and Brent!

hectorsf

[Diane12855]

Instead of thinking about the side effects of treatment, you should be thinking about the possibility of helping heal your liver and getting your health back. Do you want to try to get your health back or would you prefer to give up on yourself and die the long, slow, painful process of end stage liver disease? Seems like an easy choice to me.

Diane

[paen53]

I agree about jumping into tx sooner rather than later. The new drugs seem to be ready for release soon, but there is no definitive timetable to count on. I was dx'd with cirrhosis in Nov. 2008 and started tx in Jan. 2009. I went the full 72 weeks as recommended by my Dr. I was undetecable by 12 weeks, but not 4 weeks. Was still UND 3 months post, so regardless if I reach SVR, I know that I gave my liver a tremendous break from the virus - by at least 17months (and counting). An added bonus is that some of the pre tx symptoms have disappeared or lessened to a great degree, most noticeable the fatigue and cryo-related issues.

Time is of the essence with the late stages and really, the choice is pretty well laid out for you. I remember exactly what I was feeling when I was in your shoes a couple years back - scared spitless - so I understand your quandry. But, I gotta tell you, once I agreed to it, the burden of choice was lifted and my focus directed towards healing. Still scary, can't buffalo about that, but I felt I could finally DO something about my dx instead of worrying about it. That transition was amazing!

[nygirl7]

Streamline if you have ever seen what happens to someone who dies of end stage liver disease you would realize just how worrying about side effects and things is just absolutely nothing, at all.

Treatment isn't fun but it is doable.   If you had advanced cancer would you still be contemplating treatment? You have advanced liver disease and every day that goes by your chances diminish as the cirrhosis gets a more firm hold on that liver of yours.

I did 72 weeks and made it through.  If you treat now and are not successful at least perhaps you have saved yourself enough time to wait to see if/when the new drugs come out. They have been 'coming out' and 'near FDA submittal' for a long time. If you save yourself some liver time then should treatment not work you always have them as a backup.  But I'm sorry your time is running out now it's time to get this disease taken care of before it is too late.

[Mary4now]

If you have the choice, you have a doctor, you can get the meds and the care, and you are at this stage of liver disease, go for it.  If you cant take it you can stop, but from what I've seen here even that may help your liver.  
I'm not treating yet, but my last biopsy showed stage 1, and I dont know how financially I could do it w/o insurance etc.
I dont know what your situation is, but you are at a late stage and if you can, go for it, and see.
Good luck, please let us know.
M4now

[eureka254]

streamline:
Just get ready, and take the leap.  You can't float or choke if you don't even get in the water.  If you take the plunge you can always resurface, but if you don't, you'll be sure to be left high and dry. Start treading the waters while both feet can still move.  Don't let yourself let the ground get pulled from underneath you.  Best wishes moving forward.

[streamline569]

All appointments in place this month for clearance to start treatment...I'll keep the forum updated. I know my time is running out, I feel it everyday. I'll keep the forum updated as to the progress I''m making....

Thanks.....

[Bill1954]

I think you’re heading in the right direction, streamline. Keep the burden on the doctor; make sure that nothing sits in your inbox or to-do list, and that any waiting is on their shoulders, not yours. Keep up with all appointments, and have faith that the doctors have your best interest at heart.

The folks in here will support you as best they can; many people have told me that this waiting period you’re currently in is the worst part of it all, and that once they actually get started it’s much easier.

Best of luck to you; let us know how things proceed,

Bill

[lalapple]

Hi there, I believe this is the first time we've met.  I'm an oldie from this group and I must admit that I admire the time you've spent debating over this matter.  I agree with Bill that you are definitely heading the right direction whatever your decision may be.  

I was diagnosed at age 15.  It was denial at first, but as adolescent started to set in, I had to take my future into consideration.  I was in college away from home and it finally hit me that I had to make a choice about what to do.  I wasn't very familiar with the disease at the time and thought it could be transmitted by drinking out of the same cup as other people.  Not knowing things definitely made me even more afraid.  I've seen probably all the well known liver doctors in this state, many have insisted that I do a liver biopsy just to see how far the damage has gone bc it was speculated that I had received hcv during a transfusion as an infant.  But I felt like I would want a future free of worry about this disease, why should I wait for the disease to get worse to treat?  Wouldn't it be too late?  Also what if the new medications have some not identified side effects that would affect me permanently?People have also said that the younger you treat, the better you are able to cope with the side effects.  I am also planning to go to graduate school, have a family and children.  I didn't want my future to be hampered by hcv.  So I took the plunge in 2009 (oh gosh it seems so far away!)  was it 2009?  I can hardly remember.  Trust me when I say this:  you should be as prepared as you can but you are never prepared enough for the real thing.  First month was great.  I went from about 5 mil counts to only 26!  The drugs definitely worked wonders but was also wrecking havoc on my bone marrow, I was on rescue injections throughout the rest of my 48 weeks of treatment in addition to other issues.  So I guess in my case, being young and treating didn't necessarily prevent me from having more side effects.  It is important to realize that everyone is different.  Treating became incorporated into my life for a little more than a year.  After that, I didn't know what would be next, I was lost!  My first 6 mo post treatment pcr came back undetectable.  I can't even remember if I did a 1 year pcr, but I'm always so nervous about pcr's!  

I felt like I lost a part of myself during treatment.  It was the hardest thing I've encountered in life thus far.  I've lost many friends because they never understood what I was going through.  Getting back to life is honestly harder than I thought it would be.  But I will tell you that I do not regret making this choice to treat.  Life has no guarantees I realized, even if you feel like you can't trust yourself, you must, because during times like these, no one will understand you better than yourself.  

To help you make your decision it is absolutely vital to find the appropriate physician.  Get second or even third opinions until you are comfortable with the choices you are offered.  I am writing this not to sway your vote on whether to treat or not, but to hopefully make you feel more confidence about the choice you make.  Whatever decision you make, I know it will be for the best.

[streamline569]

All the advise I have received here has been wonderful. As you all know this is a lonely disease so hearing from everyone has done wonders for me. I'm going along with my plans, but I'll tell you a month can seem like a year as you wait for all the appointment that are necessary.

Thanks any and all advise is always appreciated.

[orphanedhawk]

Good for you!
Go forward and we will be here supporting you and rooting for your success !

[streamline569]

My second opinion suggested I wait for the new meds. So that is what I am considering doing unless something changes and he suggests otherwise.

[streamline569]

Was just re-reading all the post. My liver is early cirrhosis but my liver functions are all still good. What you posted was how I have been thinking. I'll give it 6 months which will get me through the holidays and the winter. I'll have my 6 month check up of liver functions and talk to my hep doc about starting SOC this way if the telaprevir is close to being on the market I can add it. It will cut my treatment time if they release it and if they don't I can just continue on with SOC. My doctor doesn't think 6 months will change much.
By the way my results from the IL28b gene test came out cc. Was nice to hear some good news.......I wish the same for everyone......

[Bill1954]

CC allele? Treat now, regardless of genetics. If you get a less than ideal response at 12 weeks, rethink then. You might be finished and achieve SVR by the time any protease inhibitors are released and approved. I think if you’re honest with yourself, you’ll realize waiting for other drugs is another delay tactic, and I don’t think this serves you well.

--Bill

[FlGuy]

What is your strategy for your already deficient platelets, one of the greatest risks to treatment?

[FlGuy]

I just read some of your prior posts and see that you also have thalessemia minor.  Does the doctor who is recommending that you wait know that?   Is the liver doc working with a full set of records from your primary doc?

[streamline569]

I'm at a very good hospital with a very good doctor. My stage is early cirrhosis. My blood work has come back again stable. Everything is good but slightly elevated ast alt. Which is normal. My platelet count was actually up to 72 from 52. I have given this so much thought and I really feel if the doctor suggests waiting for the new meds that 6 months is not going to matter that much and it could shorten my treatment time, which will be much more doable both physically and financially. I'm trying to make the most best decision I can with my circumstances. I can start treatment at anytime, If I can put it off just a few more months and it's not out of fear, I given this much thought. I want the best possible chance to cure this virus in the shortest amount of time. The doctor doesn't seem to be worried about the platelets so much and the liver functions which he says are all good.

[streamline569]

Sorry I didn't answer you thalessemia question. Yes of course he knows all my history. Thalessemia Minor means that I carry the gene, but I don't have the Anemia. I have never had a problem with it. I have always run a little anemic, but this is common with quite a few women. From what the doctor says the low platelets are the liver disease not coming from thalesemia minor, which is what I knew all a long as I never had low platelets come up in previous blood work pre hepc progression to liver disease. Does any of this make sense to you. Believe I try and make sense of all of it all the time. All I want to do is get into treatment, but the best for my situation, not to repeat myself......

[nygirl7]

I have given this so much thought and I really feel if the doctor suggests waiting for the new meds that 6 months is not going to matter that much and it could shorten my treatment time"

you have cirrhosis and your chance of success is hurt by that fact. NOBODY is sure that those meds will be out in six months........what will you do if you wait and find out they won't be out for a year and your cirrhosis has advanced passed the flash point?

I dont personally think you have any intention of treating or understanding how direly your situation is moving along but whatever it is your life and let us know how you are doing again in six months.

I can't believe you found any knowledgable doctor who would advise to watch and wait with cirrhosis but...........it's your decision to go against the personal advice of just about every person on this forum.  I feel badly for you but really dont have anything further to say. You have a right to commit hari kari if you feel  like it but I would not be gambling  with my life like you are. NO way.

[streamline569]

Comment all you want, I truly love to hear opinions. I don't know if I'm making the right decisions all the time so you can say all and everything you feel I need to hear. This is going to be quite a trip not only physically but emotionally and financially. Maybe I think to much, but I will go for blood work in 4 month and then again at 6 months. The only thing I have to do is the cardiogram which will be a one time deal because they already refused me. I didn't appeal this time, but will the next time. If I have to I will pay out of pocket when the time comes. Sorry for rambling on......

[nygirl7]

PS When Orphanhawk posted this she believed you were in an EARLY stage of the disease NOT cirrhotic.  You can ask her what she had to go through to get a transplant and just how far she had to go and how much she had to spend to accomplish this............this six month stuff is not applicable in your case at all. You have a chance of stopping the disease now - what will you do if the 'new' meds dont work on you and you are out of time? you realize they do not work for everyone?

"I'll give it 6 months which will get me through the holidays and the winter."

Oy vey.

[streamline569]

Even with CC and a good responce isn't the treatment time still 48 weeks or longer??

Oh Geez I didn't mean to get you guys going again, but I do understand what you're saying.

[streamline569]

I'm thinking these drugs will be out in 9 months. So if I give myself 6 months and start treatment I can always add the drug at that point. Do you really think I will progress that much in 6 months and why does this doctor seem to be so positive that it will not progress that fast ???

[streamline569]

I have to leave for work now. Again stressed and confused.......

[nygirl7]

I've been hearing that they will be out since in joined this forum in 2005.  Plus why would you add it at the end that is not the purpose of the medication at all - since there is no study done to determine this would have any effect I highly doubt any insurance company is going to just throw them out at you cause you hope it will make some difference. You are so afraid to do treatment now how in the world are you going to take an EXTRA medication on top of the SOC meds?

And  what if they decide it's too late by then for you to treat and you need to transplant? I honestly am not sure what you are waiting for but you are ruining your chance at success not mine I SVRd years ago.

[streamline569]

No you can not just add the drug, but I can try the SOC and stop if desired at 4 weeks and it will not hurt treatment with telaprevir is what my doctor has told me.
PS Got approval for echo...happy about that as they were denying......
Will have all  interferon approval tests in place.

Both doctors said today very probably for spring/summer approval of telaprevir.....Let's keep our fingers crossed. If not for me, for those who really can wait....a cure is on the way......

[James10500]

On May 3 2010. You said your Doc said you 4-5 years to live w/o treatment. Now he's telling you to wait 6 months for a drug that might not be approved ?  Seems like your cutting it pretty close.

For me after my biopsy doc had a very serious tone, and told me I was stage 3, you should start treatment.  Not a second past and I said "write the srip when can I start".  I never could and never will be able to understand why people question treatment.  It's not fun but it's doable !  If you would have started 6 months ago you be half way through !  But instead now you have 3 1/2 to 4 1/2 years to live.  

Time to make some pancakes with extra butter for my RIBA.  BTW I skied powder all morning on 12/6 in Breckenridge Colorado while going through treatment smiled hooted a laughed the whole time.  You can do it !!

[smaug48]

I've been diagnosed as stage 3-4, which is pretty close if not the same as you.  I tx'd 88 weeks (gotcha by a few, Brent) and relapsed.

I see the appeal of waiting for telaprevir, but like nygirl said, there are no guarantees when it will come out.  If you tx'd now, you're likely to give your liver a break even if you relapse, which would be a very good thing.

Another option is to tx for 4 weeks and see if you RVR, and quit if you don't.  If I remember correctly, RVR on SOC has the same SVR percentage as telaprevir.  If you do RVR on SOC, then you get to miss out on that lovely telaprevir rash.

smaug

[James10500]

Interesting in another of you posts in a "so scared" thread you said in 2006 your doc told you that you have a year to live. Stange.

[nygirl7]

James now that is truly the most interesting post in this entire thread. Why we try so hard and give so much time trying to help sometimes escapes me when I see things like that. Sometimes you just gotta wonder how much you are being played or what the agenda really is but just know we have done all we can at this point.

[streamline569]

Yes James that was how the first doctor approached me. With total scare tactics

NY Girl as far as agenda, you'll find none here. I'm just trying to do the best I can for myself. I think things through, maybe that doesn't seem normal to you. I'm sorry for that. I posted here because I'm scared yes. This is a life changing decision. At the point I start to treat my whole life will change and at my age that is not an easy thing to do. I just want to kill this virus the first time around. I'm sorry you're so much stronger then I am, but we are all different.

I put this in the back burner for two years because my health was good and I was feelng well. Well those things have changed and I am taking it seriously. I don't need the sarcasm. So please don't post if you don't have anything nice to say. So sorry I annoy you so much......

[nygirl7]

Streamline I have tried very hard to make sense to you over the course of this thread.  You have a dire disease and your liver is almost gone past the point of no return.  Whether you have had this disease for a year or twenty years - the damage has been done already and you are out of time.

There is really nothing more useful to add to the conversation.  If you do not want to treat and do get to end stage liver disease, we have done every single thing to prevent this that is humanly possible - over over and over again.

It is quite frustrating to watch someone not 'get it'.  I have seen people die from this and understand the ramifications of where you are. You do not yet seem to but I hope you do before it is too late.

I wish you were stage 2 or even a 3 and it didn't really matter but as a beginning cirrhotic who is not listening to sage advice, I'm sorry if you do not understand why this would irk some so much but I have given you the best advice possible. All of the others have too and said the same thing.

Now, one can only hope that you realize and do something about it because really there is nothing else to add.

[Trinity4]

I'm a stage 3/4, 72 wk relapser and waiting for the PI's.  If you don't want to treat with the current SOC because you want better odds then wait for the PI's.  Either way, both treatments are going to take you out you comfort zone and you just have to suck it up and keep moving forward.  Living requires decison making all the time, some are more life altering than others but you have to get past the fear, reconcile things in your head and go down whatever path you think is best.  Don't be your own worst enemy.

Trinity

[James10500]

Sorry I'm just confused.  Bottom line is it's not easy for any of us to do treatment.  You seem to be making decisions on based on things you think you know.  When the truth is you don't know anything about treatment because you've never done it.  People who have done it,and are doing it are telling you about their experiences with tx.  You say you want to get rid of the virus, but yet are unwilling to do what it takes to get rid of it.  You could at least try it and if you find you can't handle it then that's that.  Maybe you'll surprise yourself.  Give yourself a chance !

[GSDgirl]

My doctor told me I had a disease and there was no guarantee the treatment would work.  I thought about it and about end stage liver disease and liver transplants and it did not take long to decide to give it my best shot to get the disease OUT OF ME.  It was not easy but not as hard as I thought it would be.

Many people (long timers here) have read your posts and your concerns that know a heck of a lot more than I do but the concensus seems to be treat now and if you can't handle it or you do not get a response then quit and wait for the new drugs.  

[child24angel]

Please, listen to our members.  You really don't have a choice/time is not
on your side now....treat....at least try? you can always stop please
think about it and try? Please

[Mary4now]

I know how hard it is to listen to the advice that you are seeking.  I too have had a wait and see attitude, still do, luckily I have entered a study and will be able to find out more.  My disease progresssion last time checked was grade 1 stage 1, so i may have some time to wait, i will now see how much progression has occurred over the past 2 years  I hope to get more answers and help with the study.  Once you make the decision its a relief.  
I guess what i'm trying to say is most peeps are scared, but if you can treat at this point, just try it you can always stop, and just that amount of treatment may give you some benefit.  Who knows you may not have a hard time of it.  Fear *****, the only way to conquer it is to meet it head on and take a stand for what you believe is the best choice. you will then meet the results of that choice either way.

[medicmommy]

Hello!
We haven't met before, but I'm an "oldie" here too. I'm a 3A and was stage 1, grade 1 with a 465,000 viral load. my initial AST was 75 and ALT was 65 and I'd had the hep C for about 5 years by the time I treated.
Like you, I explored every possible option I could think of (I think I may have invented a few) as I dreaded treatment and the possible long-lasting effects as I did the disease. -I'm a Paramedic and have seen several patients slowly die from liver failure. It is a miserable, awful and painful process and it is slow. Usually, in the last two years of the patient's life, they have little quality of life, take lactulose to absorb the ammonia building up in their blood. The lactulose gives them horrid smelling projectile diarrhea and their bellies swell from the water that gets trapped inside their abdominal cavity. When the fluid builds up too much (in later stages about every two weeks), they can't breathe because of the pressure on their diaphragm and have to have a large needle pierced into their abdomen to draw off the fluid. Eventually, the ammonia level gets too high, kills their kidneys, makes their brain swell, and they eventually go into a coma and die. Not a pretty picture. -And rarely do heppers get new livers because, by the time they need one, their bodies are too damaged to survive the transplant.

With this knowledge, I tried other things first. Sho-Saiko-To, the Japanese treatment for Hep C support immune system health and liver repair is something I tried for 6 months prior to treatment. My liver enzymes did drop and I had more energy, but my viral load didn't change much. Just before I made my decision, I even tried an experimental treatment -IV germanium infusion, which is still in the dog lab studies. It has had some promising results for abolishing cancerous liver tumors (in dogs) and, since all cancers are caused by viruses, it made sense that it could work on Hep C as well. With one dose, my viral load dropped from 465,000 to 16,000. I still wonder if I'd done a second dose, it it would have done in the hep C...
Anyhow, I decided to go ahead with treatment. I was in good health, my immune system was still strong, I was in early stages, and I was able to take time off work without it being financially devastating. I also had a good support group so that if I became incapacitated, I would have someone to fall back on. I had the usual hemolytic anemia but did not go on rescue drugs, and had some trouble with my thyroid reacting to the interferon. Other than that, I was able to maintain a good attitude and completed treatment. Next month, I will be 2 1/2 years SVR. My liver enzymes are AST 14, ALT 15 and other than some pesky low thyroid issues, I am doing fantastic. I do not regret going through treatment and I feel confident the hep C is gone forever. I will be able to see my daughter graduate from high school and college (if she goes), start her own family and play with my grandbabies if she blesses my with them.
I don't take the little things for granted anymore and I am happy.

Your decision can only be made by you and I completely understand your dilemma. All I can advise is think of what is important to you, put it first, educate yourself (you seem to be doing a good job) and choose.  Whatever your choice is will be respected by folks here. Treatment is not for everyone and everyone situation is different. If you decide to go for treatment, commit yourself fully or you are likely to quit. Good luck and good health. ((((((((((HUGS))))))))) ~MM