Interferon freeeee just might be the bomb...

[Donnie54]

I called Dr Bacons office and they told me the interferon free drug has been approved and they are just waitn to be released and should be after first of year, I am goin to present that to my GI dr today because she said may be a reason for him to want to start the interferon now and the new drug may not be for everyone, I told the nurse that lots of iron was detected in my liver and she said dr Bacon normally has his patholigist look at it first but she could really not tell me what I should do without seeing me but she said my dr should have no issuses with me seeing Dr. Bacon so we will see what my dr says when I see him today :}

[Donnie54]

I have been educating myself and with lots of help from everyone here and been watching videos at the site you posted about Dr Bacon and also on how important diet is to Hep C,
http://www.youtube.com/watch?v=8BPbPZjFxVs

Here is another I watched on HepC with Dr Bacon in it
http://www.youtube.com/watch?v=9V9kc3pB0mk

This video talks about Gilead Sciences has a 100% cure with no bad side effects and they will not proceed to get it to the market, Just watch the video and I am not sure why they are doin this but should be criminal against Gilead Sciences and people should be outraged if true..
http://www.youtube.com/watch?v=6ERIP-ipjQ8

And Hepcat1954, I will definetly have you in my notes for Dr Bacon :}

[hepcat1954]

Bacon is a great doc Donnie!  When you visit him, tell him his patient in Alabama sends warm regards!

[nan535]

I just watched the video posted by hepcat1954  (thank you, hepcat).

Donnie
As his caregiver, my husband and I  have been through so much together dealing with his Hep C treatment, ESLD, transplant, continuing post-transplant complications, and the return of his Hep C. He has had good doctors and also doctors who, shall we say, miss important details. As the saying goes, sometimes "it's all in the details".  I hope you have someone who is standing by your side to help you with the details. It's important.

Based on the video, I think you are in great hands with Dr. Bacon.  Just remember that he likely has many patients he is treating and so it is very important to continue to take an active role in your own healthcare.  Doing online research  in order to be able to ask the right questions and understand your disease better is I think crucial in helping yourself.  Being a member of this forum I think will continue to help you do that. Feeling that you have some control of this sitution, goes far in helping you "deal" day to day.

Hang in there. I think the new treatments that are out there and those that are up and coming make this the best time in the last 30 years to be in your particular situation.
Nan

[Donnie54]

Wow that is way too cool, Thank you so much for posting this, This guy was definitely put on this earth for a reason and the Lord has blessed us to have such a man with a special kind of healing power :}

[hepcat1954]

Here's a video of Doc Bacon:

http://www.youtube.com/watch?v=1eFed-CxqQU

[Donnie54]

I am so grateful and relieved that I decided with everyones help to go to Dr. Bacon as I found out yesterday the local Dr. I was seeing misdiagnosed a lady at work with Diverticulitis, she even had to go to the emergency room and only then did they find it, very scary to think I was going to let this Dr treat me with a very serious problem :{

[orphanedhawk]

It's important to have a good doctor and support team. You've learned that you need to be your own advocate.

Good luck with your treatment !

[ceanothus]

I'm so glad you've gotten such great advice here! I'm one who was recently cured after 48 weeks of triple tx, after having previously treated for 12 weeks in the early 1990's and for 72 weeks in 2004-2006, both unsuccessful. I've been cirrhotic since 2004, and I still managed to handle the triple tx without any life-threatening complications - though I was awfully sick the whole 48 weeks and it took longer than a year to really make progress on recovering from it. Current triple tx was definitely worth it for me, but this new tx would have been an awfully big improvement. I'm so glad its getting easier for people!

[Willy50]

Here is one of Dr Bacon's colleagues.  He also sees patients at SLU and is involved in running some of the new HCV drugs trials at SLU.

He is also soon to be the 2014 president elect of AASLD.

http://www.youtube.com/watch?v=u9KPOpG7Aes&feature=youtube_gdata

I also spoke w/ a HCV nurse friend of mine, it also turns out that she said that they (in a different hospital and clinic) are also warehousing patients for the new treatments wherever possible.

I think you are very wise to wait to be seen in the larger and well respected clinic.  You will get good guidance on your best treatment options.  The amount of wait to be seen is not a significant factor.

willy

[Donnie54]

Right on! I have copies of all the records and need to get over to the hospital and pick up biopsy slides, I may see if the hospital will send it all down because purdy sure the should be sent before my appointment so the Pathologist can look them over before seeing Dr Bacon, Even though I am depressed and already having my moments just think'n I feel real good about going to see him, I just get cold chills think'n I could be already on the triple tx that this local dr wanted to rush me on but I owe it all to everyone on this group for telling me to wait and see Dr. Bacon, I sit and think about hoping this local dr is wrong about my condition and Dr Bacon gives me better news and the new meds will be ready to go..BTW the Pharmacy called me and was wundering when I wanted the triple tx to be sent and when I told her I was going to wait and see Dr Bacon she said no problem because he uses them also and she put it on hold till I see him...

[Advocate1955]

Donnie, there's nothing else you need to prepare or look over before your appointment with Dr. Bacon in February.  Just make sure you have copies of all of your labs, imaging results, biopsy report, etc. sent to Dr. Bacon.  He may also like to have the actual slides from the biopsy to have his own pathologist review them.  Forget about your local gastro guy.  He is not current on the new treatments coming out.  Dr. Bacon is current.  Regardless, you need to be treated by Dr. Bacon because you are stage 3-4, which means you are on the edge of or have beginning Cirrhosis.  It is not a death sentence.  If you did the current triple tx with your local gastro guy, you would be taking interferon, ribavirin, and incivek, and you would be very sick for 12 weeks and moderately sick for another 36 weeks.  Not a good plan.  When you see Dr. Bacon, he will probably recommend the new treatment that will be available shortly, which will probably be interferon, ribavirin, and sofosbuvir, and you will be mildly to moderately sick for 12 weeks and you will be done.  Waiting 3 months will not change the progression of your liver disease, but it will give you a shorter and easier treatment with less side effects and less likelihood of quitting early due to length of treatment and terrible side effects.  Take it from me, the wife of a 3 time treater for whom treatment has not worked.  Get everything transferred to Dr. Bacon and then relax and wait to see him.  In the meantime, no alcohol, no ibuprofen or other NSAIDS, eat fresh organic fruits and veggies, and don't worry.
Advocate1955

[hepcat1954]

I used to travel from Alabama to St Louis to see Bacon.  He is a great doctor & very kind man.  You can't go wrong listening to him...

[Donnie54]

Dr. Bacons nurse called me today and I told her I was on my way in february, When I told her I was seeing a local dr and he did not know about new drugs coming out see was shocked and said well Dr bacon is trying his hardest to help people wait if all possible for the new drug because he absolutely hated to prescribe the interferon, ribavirin and incivek to his patients unless he had too, I told her when I went back after the biopsy the local dr wanted me to start triple tx right away and he knew nuthun about the new drugs coming out till I handed him what I had printed out on it myself and she said omg, And I told her with the blessing of people on a hep c forum I was able to tell him I would rather wait to see Dr. Bacon. She did say she did not have a crystal ball and would not tell me if I had time to wait because she said Dr. Bacon has is pathologist look over the slides to determine treatment, she said if I notice any yellowing of eyes, skin or bloating to call immediately about gettin in..But without him seeing me she could not tell me much about my case,, Is there anything I should be looking at on the paperwork I got from my local dr that could tell me anything else about my case?...

[Willy50]

I agree with much that has been written in the thread.

but.......
The FDA approval date is December 8,,,,, BY December 8 for Sofosbuvir.

and also for the other treatment....

For the Sofosbuvir/Ledipasivir FDA submission, Gilead themselves says submission 2nd quarter and approval by last (4th) quarter 2014.

Understand.....nobody knows and it won't be fact until it happens, but these dates seem to suggest that approval or either therapy may be earlier than what is mentioned in this thread.

My opinion......
Is  to ask Dr Bacon.  Since he would be the prescribing doctor with the drug, he will have a far better idea than any of us.

Likewise....he is the person to go to with asking whether to treat or wait for the DAA's which *could* appear in just about one year.

He has a superior understanding of the past, new upcoming Soosbuvir and SOC TX, and the new DAA treatments.
He will factor in your staging and other health issues.

I personally think that getting in position with being seen and have health care insurance coverage is the first step.  Dr. Bacon will help you make the best decision based on your needs.

The approval date is one thing, when when and where the drug comes available is another.  I think the drug will first be released to the larger prescribing clinics (like w/ SLU-Dr Bacon) but won't be immediately available in every doctors office for the initial release.

Insurance coverage is yet another issue that could slow some people down, and once again the larger clinics are better suited towards moving things through payment systems.

Just my 2 cents.  We will see what happens.

willy

[jules2551]

I am glad you are waiting to see Dr Bacon.  On your biopsy you said S3-4 did your Dr do an iron stain on the biopsy? This will determine the reason for your high iron levels, whether it be alcohol related or genetic.  If its alcohol you can control that if genetic you cant.  Either way it will take time before you can start tx.  You will have to do phlebotomies until your % saturation levels come to a normal and stable level.  This could take months to do.  I was dx w/ hep C in Sept, dx w/ PCT & Hemo in Dec, started phlebotomies in Feb and did weekly for 3mo, took another month of bloodwork to make sure Iwas stable, i surance issues, and finally started 3x  w/Vic.  It was a long wait but i felt i was.

So waiting a few mo isnt goingto hurt in finding an experienced Hepa. He's one of the best in the midwest.  Take someone w you to take notes because you will be like a deer in headlights w all he has to say.take it in and take a deep breath.

IMO..i would not wait for the INF free drugs.  That could be a year + down the road.  If Dr Beacon recommends INF I personally go for it.  Being S3-4  that is very risky.  You dont want to become cirrhotic.

I was g2S3 when dx, gameplan was 48 wks w/3x and vic, 2 log drop @ wk 9 (due to human/lab error), UND since wk 9, DET 6 mo post tx.  More than likely I am cirrhotic now.  

So i wish you the best.  If you have any questions ask cando and pooh.  They know these txi inside and out and are extremely supportive.

Jules

[Donnie54]

Right on Pooh that's awesome, I am so glad I found this forum and so glad all of you kept tell'n me to get to Dr Bacon, I had my mind made up when I went to my Dr today that I was walking out with my paper work, I could tell he didn't like it too much when I gave him a copy of alot of things ya'll said and also when he never heard of new treatment coming out all I could think about was what someone posted do not walk but run out of his office I really had this weight lifted knowing I was goin to get way better care, and if all I have to do is 12 weeks i'm just gunna think about you all doin 48-72 weeks and tell myself to suck it up and get thru it.I feel like I may finally get some sleep tonight because since I found this out and the treatment I was about to go thru with this local dr I have been a mess, no sleep not remembering things and just could not focus but now even thou I will go thru the treatment and the fact my liver is still damaged I will beat this monster to keep from further damaging it to go on living, Seriously thank you all so much for the awesome advice that didn't cost me a dime :}

[nan535]

Wonderful post, Pooh.

[pooh55811]

Donnie, it is NOT too good to be true. It IS true. There is a new treatment regimen which contains Sofosbuvir, Ribavirin, and Interferon. It is 12 weeks long and has an 89% cure rate for Genotype 1 (I said 90% before but that was a typo, LOL). It is probably going to be approved in Dec. 2013 or early in 2014. It is for Genotype 1. It has a lot fewer side effects than any of the previous treatments. It is also a lot shorter treatment than the [previous treatments. This is a great advancement. All of us would have loved to have a treatment that was only 12 weeks long. Most of us did 24 weeks or 48 weeks or even much longer, 72 weeks. I did 48 weeks of triple med treatment (Interferon, Ribavirin, Incivek). Some have done treatment several times. There are many, many on the forum who treated when they were Cirrhotic (Stage 4) and they are now cured and living their lives Hep C free.

If I recall correctly, your liver biopsy was Stage 3 - Stage 4, so it appears you are late Stage 3 - early Stage 4. Your liver is compensated and still functioning. You are NOT decompensated. Most people in your situation have tolerated treatment very well and have gone on to be cured. If you do the newer treatment with the Sofosbuvir, Interferon, and Ribavirin, your chances for your are 89%, depending on various factors. Those are great chances.

Your new doctor, Dr. Bacon, will evaluate you and discuss your treatment plans. I am sure he will monitor you closely. You have a great chance of beating this thing and getting rid of Hep C.

Just keep in mind that most concerning side effects can be treated and managed. Rashes can be managed effectively. Depression can be managed effectively. Anemias and other blood count problems can be managed effectively. Nausea can be managed effectively. Yes, you may get tired and have some other side effects that one cannot do a lot about, but it is only for 12 weeks. Since most of the side effects are cumulative, your side effects may be a lot less than many of us had because you will be on the drugs for only 12 weeks (if you do this new regimen).

If you have a history of depression, Dr. Bacon may have you see a Psychiatrist who may start you on antidepressants before going on Interferon. I have a history of major depression but I was on Wellbutrin (an antidepressant) throughout Tx and I never got depressed at all while on treatment, and I did 48 weeks of treatment.  

You can do this Donnie. It is worth it to get rid of the Hepatitis C and be able to go on with your life. Hang in there.

[nan535]

Donnie
I posted my last post because I believe my husband started a treatment with the best intentions of his doctor but ultimately made him much sicker than he was.  This abstract and study confirms what I already knew - he never should have started that treatment given the condition his liver was in. But as they say, hindsight is 20/20.

From what you have posted, you are NOT where he was.  Others have successfully treated at your stage and with the new medications that are about to be approved next month, you will likely do much better than he did.

I believe that its important to know what you are going into with your eyes wide open and that will help you get through it.

Stay positive. You are in a very good place.
Nan

[Donnie54]

Well rats, new it was too good to be true, Oh well Thank you all very much, I will deal with it when the time comes, just hope the meds don't make me too sick and depressed :{

[nan535]

Today I found the following abstract published by Dr. Eugene Schiff of the University of Miami's Schiff Center for Liver Diseases.
http://liverlearning.aasld.org/aasld/2013/hepatitis.single.topic/document?c_id=26532&type=description

An excerpt:
"There are many reasons for treatment failure of HCV.
Among the most predominant issues, medication side effects
contribute to treatment noncompliance,while drug-drug interaction in patients with co-morbidities may prevent optimal therapy regimens. Other factors that play a role include viral subtype, genotype, race, and previous extent of liver damage.

Interferon has been documented to have severe adverse side effects, including hematopoietic, dermatologic, and
psychiatric manifestations. Side effects are not well tolerated and are known to cause medication discontinuation.
There are additional side effects from the protease inhibitors,namely rash and anemia in Telaprevir, while Anemia and dysguesia has been documented
in Boceprevir. One study, CUPIC, demonstrated alarming rates of SAE’s and mortality in patients  with cirrhosis on triple therapy, which was more substantial than the data reported from the RESPOND-2 and REALIZE trials.
The results of the study concerned many hepatologists, who
are now actively “warehousing” patients with previous treatment failure in anticipation of safer, direct acting antivirals that will be available by mid-2014."

Here is the link to the CUPIC study on Triple Therapy in Treatment Experienced Patients with HCV-cirrhosis
http://www.journal-of-hepatology.eu/article/S0168-8278%2813%2900290-0/abstract
Results:
A high incidence of serious adverse events (40.0%), and of death and severe complications (severe infection or hepatic decompensation) (6.4%), and a difficult management of anaemia (erythropoietin and transfusion use in 50.7% and 12.1%) were observed. Independent predictors of anaemia <8 g/dl or blood transfusion were: female gender (OR 2.19, 95% CI 1.11–4.33, p = 0.024), no lead-in phase (OR 2.25, 95% CI 1.15–4.39, p = 0.018), age  65 years (OR 3.04, 95% CI 1.54–6.02, p = 0.0014), haemoglobin level (⩽12 g/dl for females, ⩽13 g/dl for males) (OR 5.30, 95% CI 2.49–11.5, p = 0.0001). Death or severe complications were related to platelets count ⩽100,000/mm3 (OR 3.11, 95% CI 1.30–7.41, p = 0.0105) and albumin <35 g/dl (OR 6.33, 95% CI 2.66–15.07, p = 0.0001), with a risk of 44.1% in patients with both. However, the on-treatment virological response was high.

Conclusions:
The safety profile was poor and patients with platelet count ⩽100,000/mm3 and serum albumin <35 g/L should not be treated with the triple therapy.

[LN55]

Good that you are waiting to see the specialist. Hopefully he can also put you in the direction you need to take with the PCT as it relates to HCV treatment. I had a very good dermatologist and he turned tx for the PCT over to my GP and my hepatologist. Usually phlebotomies are prescribed prior to HCV tx. I had 4 over a 3 month period before starting tx to reduce iron (serum ferritin). Not something you can do during tx. The good news...the PCT treatment was free...just like giving blood...only a lot more frequently. Glad you are seeking the best possible care. Good luck.

[can-do-man]

Them drugs are still involved in trials and not yet even submitted for approval. They are still at least a year and a half away. Waiting that long in my opinion would not be a good ideal because of your liver stage.

Your at the point where waiting a few months is not a problem but waiting more then a year on something that we don't even know will be approved would not be wise. Just my opinion.

[Donnie54]

What about this man? This is what I showed my local Doctor..
http://www.healio.com/infectious-disease/hepatitis-resource-center-2013/interferonribavirin-free-triple-therapy-highly-effective-for-chronic-hcv-genotype-1