3rd round of tx starting around March

[mindy]

   Hi to all my friends, sorry I have not posted lately, I stay in touch and check in but now
I went to see my liver doc on 2/11/10.  He wants me to have a second liver biopsy, an MRI of my brain to see
why the seizure on July 17, 2008 happened, I am going back to see him in 2 months after all these tests are
completed and I will begin a third round of Pegasyst.  He said it will be more likely that the clinical trial drugs
Telaprevir Vertex and Boceprevir will not be fda approved until late 2011 begining of 2012.  I cannot wait that
long so it will be a 3rd round of pegasyst.  I will survive, I took care of the twins myself through the first 48 weeks
and then the 70 long weeks of Peg-intron which was much more difficult for me.  Now at least they go
to full day kindergarden and I will be able to rest when they are at school.  Will keep you all in my heart
our fellowship and my friends here in PA, friends of Bill W. will also help me, I pray to my HP for guidance
one day at a time.  love you all MINDY

[DougV]

Mindy,

I wish you the best of luck.  As a two time vet I confess though I hope your biopsy turns out better then expected and you can wait.  Are you doing lower dose attempting maintenance of full speed ahead?  How long this time? 

Doug

[skydiverbill]

good luck, stick around here and keep us informed

[willy]

Mindy. I have to wonder if you could/ should wait?  Here are a few things to consider......

1) Why does it appear that the decision is made prior to the biopsy outcome?  I would think that results of the biopsy would drive the actions.

2) I wonder since you have treated twice and have not succeeded why one would expect a different outcome.  Now, bear with me..... I don't think it's a bad idea if you have made some changes that could result in a changed response.
   
Many people who had been poor responders in the past may have been carrying excess weight and/or may have had insulin resistance issues.  If these are addressed in can help with ones response speed.  Missy for instance had treated twice but prior to treating this third time she undertook a few lifestyle and diet changes and instead of being a slower resppnder this time she carved out an RVR.  I wonder if a few changes could also help you, although maybe you are already there.

Even though this may delay somewhat a start date it could still make all the difference in that initial and crucial 12 week response.

3) I wonder when Teleprevir is going to be released also but have been assuming that it could be mid 2011.  That is only about a year from now.  The telaprevir trials have stopped all doing a little while ago; (I'm somewhat skeptical that it could take the FDA more than a year to approve the drug)
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"Mr. Emmens continued, "Our primary focus remains on the completion of the telaprevir Phase 3 development program and the subsequent submission of a New Drug Application for telaprevir, planned for the second half of 2010."
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I believe that your chances of clearing with triple therapy to be quite good since you are a proven responder.  The people who have the lower chances of success are the null responders.

There may also be other chances for drug trials of other compounds.  Telaprevir will not be the only good treatment; Boceprevir is also looking like it could be very comparable in SVR rates, even with past TX failures.  It will be very interesting to see how insurance will cover these new forms of TX.  I believe that triple therapy will becoame the new "SOC".

These are just a few things to consider.  If your biopsy indicates that you may be able to wait there will be other more successful and shorter courses of treatment soon. 

best,
Willy

[mindy]

Thanks for your thoughts.  Willy you are right, the first 2 rounds of tx, I was at times drinking white russians.
When the virus broke through after the 70 weeks of Pegintron, I was in fact drinking quit a bit.  I told
my doctor these facts and my lifestyle has changed big time.  My A.A. sober anniversary one year was June 24, 2009
I live one day at a time, with my HP and this fellowship as well as all my friends of Bill W.  The doctor
wants a 2nd liver biopsy and then the decision will be made.  I will be doing a bunch of tests and
he wants them all done at the hospital he is the director of liver transplant at.  Not worried
just confused.  One Day At A Time.  mindy

[willy]

Hank has repeatedly mentioned (I think) your hospital as one of the best in the nation.  I'm sure that you are getting good care.

So it sounds as if you are in a different situation this time, if you were to restart TX.  You might ask the director what actions you might take this time before starting TX that might help your immune response.

There are some studies that have shown that for (particularly for women) people with IR (insulin resistance) both diet and possibly some drugs like metformin can improve the response rate.  I know that you were heavier last time ans this could have caused a deficient response.  Maybe you are good this time what does your doctor think?  IR issues are often overlooked or dismissed because they are not yet well documented enough.  Addressing this issue would not hurt you in any way IMHO but could possibly help..

Exercise, getting in shape before TX may also help in that same regard.

Some people are sold on other supplements.  Milk thistle may be of use (mixed reviews by doctors on this).  Vitamin D is in the news of late for helping response rates.

For instance, Missy did those 3 things; exercise and diet= weight loss, added milk thistle and vit D and this time she got a RVR.  That is just a one person result, but you can't argue with the results. 

best,
Willy

[Pancho and Lefty]

Mindy,

I hesitate to comment. . . but. A typical AA aphorism is "doing the same thing over and over. . . expecting different results each time." Have you made changes other than stopping drinking?

Willy is just talking about one person getting fit and beating the virus. For people who are able to see it, there is plenty of info about being overweight and having insulin resistance interfere with the interferon signaling. A basically healthy person with a body mass index of less than 25 has a much greater chance to clear.

My HP helps me deal with my senile mother, a sister and niece with cancer. . . but leaves my personal health pretty much up to me. I choose the food. . and I decide to exercise, or not.

Apparently, IR is less of a factor with triple therapy. I would definitely wait for the newer treatment. You, and your family, deserve the best opportunity for success.

best wishes all the way (and keep the plug in the jug),

Max

[willy]

Mindy, I had to scan a few posts to see where your staging was.  I saw that you wrote stage 3 (out of 4; I mention that since the ishak system has more stages).  You may have progressed.  It is also possible that your staging has changed little.  It's probably a good idea to get an update on your staging.

I sometimes myself wonder if I am waiting too long.  I feel that I can tell that I should treat soon.  I've been waiting (and waiting) for the new drugs but I don't want to wait too long.  It's a double edged sword.  There are risks in waiting too.  All it takes for me is feeling symptomatic, fatigued, etc and I understand wanting to get it fixed. 

No matter what you decide we will all be pulling for you.

best,
Willy

[MissyMouse]

I truly, truly believe that the changes that I  made before starting this third round of treatment contributed to my rapid response as does  my GI.   He feels that the biggest and most positive change that I made is that I weigh 30 pounds less than I did when I attempted my first round of treatment back in 2006.  I got it straight from the horse's mouth (as Willy and Doug know) that Milk Thistle is indeed a good thing for heppers to be taking.  I pretty much avoided all supplements unless my doctors said I need to be taking them.   After my second relapse I decided that treatment was not going to help me and that it was time for me to make the changes that were within my control.  One of those was taking Milk Thistle.  When I RVR'd Dr. Nelson at Shands at the University of Florida specifically told me that Milk Thistle is a good thing.  I now take the "good" Milk Thistle from liverhealth.com instead of the over the counter stuff at Walgreens.

Exercise, yeppers, I exercise on average 45 min. a day, 6 days a week.  My exercise of choice is an even amount of yoga, strengthening and aerobics guided by the Wii Fit Plus.   All exercise is good, this just seems to be the best for me.  I had done walking for about 6 months before switching over to the Wii.  I had to quit the walking because it was just too hard on my ankle joints which are afflicted with rheumatoid arthritis.  My RA did not make me give up trying to exercise, only  made me explore and dig harder to find what would work for me.   There is SOMETHING out there for everyone.  Heck, even my 75 year old Dad who is suffering from very painful multiple myeloma (a type of bone marrow cancer) works out 30 min. every day on a recumbant trainer.   He found one at a gym here why he has been visiting and he drives the 40 min. every day to go do this while on vacation.

I get my vitamin D via the most natural source you can, the sun.   I take in some our good old Florida sunshine every day that the weather permits.  It's not been as possible the past 2 months because of the unusual cold we have been experiencing, but you can bet, once the temp gos back up to 75 I'll be getting my vitamin D therapy.    Just remember, sun has to been absorbed in moderate and reasonable doses and the skin has to be checked religiously for any potential warnings of skin cancer.

I was once a person that blue off an above average healthy lifestyle, I am now a healthy believer.

Mouse

[Pancho and Lefty]

Mindy,
 
I would definitely wait for the newer treatment. You, and your family, deserve the best opportunity for success.


Max

Mindy,

It didn't occur to me to suggest getting fit and trying to treat again. People just can't hear talk of diet and exercise. It seems like there's something intimidating about being responsible for one's own health.  However, getting fit and trying again is a logical option. Exercise, lose weight. . . continue to exercise during tx. . . and the probability of success will be much greater.

Several incarnations ago I quit drinking, lost 55 pounds (over two years) and became a middle age athlete. My opinions are based on my own experiences. At at 38, I probably would have failed tx. At age 59 thru 60 tx was successful. It was not an accident.

Are you willing to go to any lengths to get rid of the virus?

Missy, my dear. If the model of elevated metabolism is valid, those who have a level of fitness will require fewer rescue drugs. It would predict your need for them will be less this time around. 

peace to all,

Max 

[mindy]

Hi, I love you all.  Again, yes my Doctor told me I need to loose 30/40 pounds.  When I started the first 48 weeks of pegasyst, the twins were one, I weighed 174, lost alot of weight the wrong way during tx, because I cannot eat much at all.  Gained about 25 lbs during the 7 months off tx, with alcohol involved at that time, when I did the 70 weeks of pegintron, I went down 128 lbs and was drinking.  Yes, yes, yes, I need to exercise, saying it and doing it are too different things, just like faith without work is dead.  I am going to bundle up and after the girls go to school I am going to walk around a township park near me that has about a 10 mile walk track.  I eat not alot but the wrong food at the wrong time.  I do take a 50,000 ml vitamin D pill once a month thru my rhuematiolgist because of degeniterive disk and arthritis, plus the reynaulds syndrom which I think was caused from side effects of tx and also the damage I did to my veins all the years of drug addiction.  I am in fact going to get moving now and lost the weight the right way before tx, so my success rate may be better.  Willy, the girls just turned 6 and I will be 49 on the 25.  If I keep waiting for the drugs that are not FDA approved, the virus is continuing to slowly take over.  Missy, I will find out about the milk thistle what is that a pill, drink?  how much and where do I get it.  I am going to do what ever my doctor tells me to do.  and the first thing he said was to loose 30 lbs. first.  I am not looking forward to the second liver biopsy or the MRI because they always have such a difficult time getting an IV in me.  My HP will be with me and I will just pray to do the next right thing.  i before e intellect before emotion right?  my sponsor tells me all decisions are mine but she gives me her advise, i before e works well, now I have to stay focused on loosing the weight the right way before tx instead of the wrong way during tx, if I do tx at all in April.  Love you all  lots   mindy

[MissyMouse]

Milk Thistle is a pill and runs about $30.00 a bottle for a month's supply.  I started buying mine on line at liversupport.com per the suggestion of a lot of heppers that came before me.  I use the Maximum Thistle which has no artificial fillers.

Mouse

[mindy]

Missy, I don't buy anything on line because my SSI and what I get for the girls is very minimul.  I wonder if I can find milk thistle through my primary and a prescription just like the vitiamin D pill.  I wish I could afford one of thos wii fit games you have, me and the twins could have fun together.  Thank you all for always be here.  When the time comes after the tests I will be asking for all your opinions of what I should do.  Tx is hard, but so is liver failure.  My kids need their mom.  Let Go, Let God.  I thank God for Bill W. and alll of you.  There are so many people in my other fellowship that should join this fellowship as well.  mindy

[Hank's mom]

mindy -

I'd go the way the doc says without 2nd guessing him by adding anything, including herbals. I can't tolerate milk thistle, so maybe that's why I get nervous about spending $30 in these times over something you may not use. Maybe somebody you know has been taking milk thistle and you can a sample. I wish I'd done that instead of dropping $30. I did get to pass mine on to a friend who takes it with her tx, so I guess that's the good sign.

Whichever way you choose, my thoughts are with you,
Susie

[mindy]

Thanks Susie and all of our fellowship.  It is scary and getting close to the second liver biopsy.  I don't understand why I must be put to sleep for this one but like I said faith, the pic line will not puncture my lungs.  Whatever my doctor feels is the best bet for me will be what I will do.  I pray the snow in PA is gone before March 8th.  love you all and value our fellowship and friendship so much, I pray more people that need our experience, strength and hope will come and find what they need here in our fellowship.  mindy