Failed!! Tired of being tired.

[Sonsfeld]

Apri 12,2012 : 1050965 IUml
Ast 58, Alpha-fetoprotein 9.6 ng/ml, ferritin 565ng/ml. Genotype 1A
Started treatment on May 11,2012 with peg interferon , ribavirin and victrelis.
October 12,2012: AST 18. Viral loaded undetected.
Jan. 14,2013 528503 IU/ml. AST 25 . As you see it's back. Changed doctors and started seeing a new one from Boston.
April 1,2013.  3,712,982. Hepascore 0.37, metabir f0-f1 81.9%. GGT 83, bilirubin 0.7, K 5.8, ferritin 559,ALT 40, AST 36 and alpha 2 macroglobin 290.  Going into Boston on Sept. 30th for an MRI. I don't know why the first doctor did 24 and not 48 weeks guess won't know if it would of made a difference. Wish I would of educated myself the first time around. I find myself tired a lot not sure ifs its still from when I did treatment or not? I find that I have a yellow tint in my eyes now. I guess I'm wondering if anyone knows when a treatment is coming out seeing I'm told that it was a one shot deal with the triple treatment or if there is already one out? Just for the record I do not drink or smoke. Sorry for going on so long. I truly wish I would of found this forum earlier I would of bad more info to go with. Thanks

[bluebird305]

thank you for your comment on my husband but he even refuses to look at anything with me.  He says I am just making myself crazy by reading this forum. And when I said to him, dont you care or dont you love me, regardless of what is happening to me.  He says why are getting mad at me, I am not a doctor.  WOW! It ***** that it took 20 yrs to find out he doesnt really care.  I was just anothe roomate.  Oh well. say la vee.  As far as paperwork goes, I have only just started saving everything.  I am having a hard time what questions to ask my new doctor.  I am nervous that he will be the same as the other one.  My kids think I should move back up ther with them so they can help me find the best doctor I can.  Maybe I should  I just dont want to be a burden to them.  Well I guess I"v covered as much as my small brain can handle at this time.  Its nice to know That i am not alone.  thankx for everything bluebird305

[Dee1956]

I am sorry I saw the 70 iu and thought that meant DET.

[Sonsfeld]

Dee, the lab paperwork said undetected. The only one that didn't was the one in January. My situation was similar. I started with Klarrisa Foy and in August she went to Italy that's when Reddy took over I remember She had told him to do thirty six weeks but he said he didn't think I needed it seeing I was undetected so early. But at this stage of the game I can't worry about the should of, could of or would of !!! I'm going to live a healthy life and as soon as new treatment comes along give it another shot.
Bluebird305, I'd do it all over again just would if educated myself and went longer. I've always been very organized, I keep a binder with all my paperwork that had to do with this. I read your other post I would hope that your husband is just dealing with it in his own way. My wife and kids support me , but I'm sure it's hard on them. I don't know what it is but I do find that I'm more at ease reading or writing here on this forum. Well, thanks for all the feed back and hope the best for all of us.

[bluebird305]

I am going to start treatment maybe in sept but I believe you are right.  I said to my husband that i am going to have copies of everything.  thanks for the reminder  gc

[Dee1956]

p.s. I am not that smart however the first post looks like you started in June and did not get to UND until October.  There is something called futility, if you don't respond by a certain time they are supposed to stop the tx.
I am probably reading it wrong but just wanted to mention in case you did not get to UND in by 4 and 12 weeks after starting tx.

[Dee1956]

I wanted to come back to say that what happened to you has happened to others.  It happened to me the first time.  I trusted that the Hepatologist I was sent to would help me.  Instead he put me on a trial, it was awful and I lost my job.  It all would have been worth it if I had gotten to SVR.  All he seemed to care about was his trial.  I had a receptionist as a trial coordinator.
Sorry...running on I just wanted to say that you did the best you could with what you knew at the time.  I treated a second time, new doc and am SVR
I wish the best for you.

[Sonsfeld]

Try to answer some of the questions,
Yes it did say undetected.
The test they did was a fibrosis panel test(blood)
My bilirubin has been no higher than 0.7
I go Sept. 30 th for a ultrasound .
I left message with the doctors office today about the eyes just waiting to hear back.
I am healthy the only issues I have is this.
I work every day and stay somewhat active. I'm not over weight .
I'm not nor will I give up hope. I have a great wife and great kids. So I have a lot to fight for. Hopefully some of these new treatments come along and I have a better outcome. Thanks again everyone you guys are great.

[pooh55811]

"My big question is whether or not f0-f1 is accurate and whether it was determined by biopsy.  I would definitely call the doctor's office and ask about the yellow tint.  If you are f0-f1, and your bilirubin is fine, I wouldn't think you would be jaundiced, so I would follow up on that. "
---------------------------------

I definitely agree with Advocate on everything she said in her post and especially want to point out these points again. I would be concerned about the yellow tint and I would follow up on it ASAP..

[Advocate1955]

I'm sorry to hear about your relapse, if indeed you were UND throughout and after finishing treatment.  My husband has had 3 failed treatments.  The first two didn't work, he never reached UND.  The third worked, but then he had a viral breakthrough during treatment.  All I can say is, don't give up hope.  It is important to stay optimistic.  You should be seeing your doctor at least about every 6 months for lab work.  Your doctor should probably do an ultrasound or a CT scan at least once a year to screen for liver cancer.  Since you don't have Cirrhosis, I'm not sure if the doctor would do the ultrasounds every 6 months or once a year, but I think at least once a year is probably appropriate.  Maybe you said this above, and perhaps I just didn't understand, but how was your stage of fibrosis determined?  Did you have a liver biopsy?  My husband's hepatologist believes that sofosbuvir will be combined with ribavirin and interferon for a 12 week treatment for G1's.  Hopefully that treatment will be approved by the FDA and available by December of this year, she thinks.  Since you've already treated with triple tx, you don't have another treatment option at this time.  If indeed your liver damage is only f0-f1, you are in good shape and you should be able to try the next treatment when it's available.  My big question is whether or not f0-f1 is accurate and whether it was determined by biopsy.  I would definitely call the doctor's office and ask about the yellow tint.  If you are f0-f1, and your bilirubin is fine, I wouldn't think you would be jaundiced, so I would follow up on that.
Advocate1955

[pooh55811]

By the way, are you sure all of those tests were Undetected. Or did they not say Detected or Undetected.

I am trying to figure out if you were truly  < 5  UND  or if you were  <5 DET. Also the last one, <43. Did it say < 43 UND  or  <43 DET.

[pooh55811]

"I'm just wondering if I should be concerned about the yellow tint on the eyes?"
--------------------------------

Does your new Hepatologist know you have a yellow tint to your eyes? If not, I would call him and let him know. That is what I would do if I was you.

He may want to order some blood tests or see you in his office.

[Sonsfeld]

Everything you are saying makes perfect sense. I keep a complete folder of all my medical. Rechecked it and I had an appointment on June 12, July 10 and Aug. 15 but no blood work was done. I did start the victrelis on June 8. Saw the GI on Oct. 16 th told all set to stop on the 19th and was retested on the 24th. I did the same here I switched just a little to late. I am now seeing a hepatologist Dr. Lake-Bakaar from Beth Israel hospital in Boston. I really do appreciate all the help and I do have to stop beating myself up with the what ifs. One good thing is the new doctor saids that I have time on my side seeing I'm healthy and I do plan on staying on this forum because I've learned a lot just reading some other questions. I'm just wondering if I should be concerned about the yellow tint on the eyes? Thanks again.

[pooh55811]

In the second paragraph I said this " then you should have had a 4 week VL test one on June 9th. "

It should have read " then you should have had a 4 week VL test done on June 8th. " (before you took your first Victrelis)

[pooh55811]

Unless you left out some VL test results, your VL tests were not done correctly.

It looks like your lead in was only 3 weeks long (it should have been 4 weeks long). If the lead had been 4 weeks long, then you should have had a 4 week VL test one on June 9th.

Then you would have started Victrelis on the June 8th after the first VL blood test. Then you should have had a VL test done on July 6th (at the end of 8 weeks) (after the 4 week lead in and after 4 weeks of Victrelis).

If the 8 week VL test was UND then you would have done 28 weeks total treatment. If the 8 week VL test was DET then you would have done 48 weeks total treatment.

If that July 23rd VL was your first VL after starting treatment, it was done at 10.5 weeks, and it tells you nothing about how long treatment should have been.

So, if you did not have an end of 8 weeks VL test, then your doctor would not have known how long you should have treated.

However, it looks like he/she did not know that information anyway if you did only a 3 week lead in, had no VL test until 10.5 weeks, and treated only 23 weeks total.

That 8 week VL is crucial because it tells you how long to treat, 28 weeks or 48 weeks. If you were UND at end of week 8, then you would/should have done a total of 28 weeks (4 weeks of lead in with Inf. and Riba and an additional 24 weeks of Inf., Riba, and Victrelis.) If the 8 week VL was DET then you would have done 48 weeks of treatment total.

You did 23 weeks of treatment total so you were missing the last 5 weeks of treatment (if you were supposed to do 28 weeks of treatment. But if you were supposed to do 48 weeks of treatment then you were missing 29 weeks of treatment.  

I hope all of that makes sense to you. The thing is, the timing of the VL tests is crucial. Plus, it is crucial for the doctor to know the protocols.

It is good that you do not have cirrhosis. Hopefully your new doctor will be able to get you on the new meds when they come on the market.

As far as trying to figure out what went wrong, I agree it is not beneficial to dwell on it too long or get too stressed out about it, but I do think it is important to review the treatment, and, if there was something wrong with it, figure out what it was. You will never know if you would have attained SVR had you treated longer, and there is nothing you can do about that now. But I think it is beneficial to look at your treatment, figure out what went wrong, and move forward with your added knowledge and experience. This knowledge and experience will help you when it comes to working with your new Heaptologist. You will know how important it is to educate yourself about the treatment you will be doing so that you will know if anything is amiss or not happening the way it should be. Sometimes you have to be your own advocate. Hopefully your new doctor will be very knowledgeable.

Believe me when I say many of us had had similar experiences. I truly wish that I had known more when I started treatment. I trusted the doctor, Big mistake. Mine did not make the same mistakes yours apparently made, but mine did make mistakes and I ended up changing doctors during treatment (changed from a GI 15 miles away to a Hepatologist 70 miles away). I should have done that change earlier, but I knew so little when I started treatment. Many on the forum have had bad experiences with less than competent doctors.

So now you just need to move forward and learn as much as possible so that your next treatment ends in SVR.

Stick around the forum. It is a great place to learn and people are very willing to help and lend support.

[Sonsfeld]

July 23 5 IU/ml. IU/ml 70 log IU/ml
Aug 19 same
Oct 3 same
Oct16 same
Oct 24 43 IU/ml 1.63 log IU/ml
Four week lead in was May 11,18,25 and June 1
Last day of treatment was Oct. 19th. ( Don't know why he didn't do treatment longer if I knew what I do know I would of insisted on longer.)
As far as I know no cirrhosis they did do a cat scan and a MRI last year and said everything looked fine.

[purplecat]

I was going to ask same thing as Pooh with addition to IL28B, are you CC, CT, TT?  All this information makes a difference on guidelines for length of treatment. Did you hit all the RVR guidelines to do your length of treatment?  1A is one of the hardest to cure with current treatment.  I was told by my clinic from my Gilead trial that 1A people are doing a little better than 1B with the sofosbuvir if this is any consolation.

Take care of yourself, recover and these new drugs coming are more advanced. thankfully you are low fibrosis at this point and have time.

Maybe it's better to not Monday night quarterback at this point.  Just move forward get ready for the next round.  You will make it!

[pooh55811]

PS:
The fatigue could still be from treatment or it could be from the Hepatitis C infection. Fatigue is one of thesymptoms that people with Hep C have.

Yes, triple med treatment is a one shot deal. You cannot treat again with triple med treatment (Victrelis or Incivek).

There are new medications in the pipeline and one treatment with Sofosbuvir, Interferon, and Ribavirin may be approved as early as sometime next year. Gilead has filed and asked for approval with the FDA.

[pooh55811]

Welcome to the forum.

I am very sorry that you relapsed.

You said, "I don't know why the first doctor did 24 and not 48 weeks guess won't know if it would of made a difference. "

We can better respond to that if you can give us some more details. We know the following:
Genotype 1a
Viral Load:  1,050,965 IUml
You do not have Cirrhosis
Started treatment May 11,2012 with peg interferon , ribavirin and victrelis
Viral Load Oct. 12, 2012  UND
Viral Load Jan. 14, 2013 528,503 IU/ml

Here are my questions:
*Did you do a 4 weeks lead in with Interferon and Riba before starting Victrelis?
*What was your week 4 (end of week 4, after the lead in) viral load?
*What was your week 8 (4 weeks after starting Victrelis) viral load?
*When did you become Undetectable?
*When was your treatment stop date?
*What was your end of treatment viral load (should have been taken the day after you stopped your medications)?


You said you did 24 weeks of treatment. Actually, the triple treatment with Victrelis calls for 24 weeks of treatment in addition to the 4 week lead in (28 weeks total)  IF you were UND at week 8.

So, if you started treatment on May 12, 2012 then your 28 weeks would have been finished on Nov. 23, 2012.


If you can tell us more information (the questions I asked) then we can better respond.

[Dee1956]

Hi Hope this helps, this is talking about the Gilead, there is also another I will look for

http://www.medhelp.org/posts/Hepatitis-C/is-anyone-else-on-gilead-gs-9451-and-gs-5885-and--soc/show/1711598

[Dee1956]

I am so sorry to hear of your relapse.  There are some new meds being studied, I had read they were going to ask for FDA approval in December.  I am hopeful that one of our more knowledgeable members will be here soon.
You could try a search for Gilead.  Up at the top of screen, click on the magnifying glass and search "Gilead 2013". or "new drugs EASLD2013" This is a conference that occurred recently in Amsterdam and contains new information.   I will try to find the information on the other drug I just read about today; will come back with link.
Don't beat yourself up.  I did a very similar thing back in 2008. I trusted the hepatologist to help me, instead he put me on a trial.  I relapsed, had to wait for Incivek, am now SVR.  I will never forget the pain of relapse.
Take Care
D

[JDB1964]

So sorry if this is a relapse. Prayers that you will find an effective way to beat this!