NO! TX Being stopped

[tahoeunicorn]

Well I didn't make it. Week 12 NOT UND.  DR.'s PA called me. Stopping Treatment as of today.. Don't have the numbers but will on Valentines day. Just very depressed rght now.

[charm27]

Im really sorry to hear this.Wish you had your lab numbers. Perhaps there's a chance of doing 72 weeks if your numbers dropped to some degree.
I hope you have a shot at that.
None of us know with this illness what will happen tomorrow.
It sucks....please dont give up the ship yet!
Hold on.
Prayers are with you.
Charm27

I know what the past few weeks have been for you.

[frijole]

I don't understand.  Your profile says you are stage 4 grade 3.  What are your other options?  I would ask myself and my physician several questions before I stopped.  I don't follow the forum close enough to know your stats.

What exactly was your viral load at week 12?
How are handling treatment?
Are you anemic -- has your hemoglobin dropped?  If it hasn't, you may be ribavirin resistent and need to increase the ribavivin.
Do you also have steatosis (fatty liver) - a lot of 3a's do.

I would think the stategy would be for you to go 48 weeks with weight based ribavirin or even more if it is not impacting your hgb.

Have you consulted or could you consult with another doctor before you quit?  If it were me, I would continue treating, get a complete copy of all your tests, and consult with another doctor.  Perhaps you have already done all of this.  I appologize if I am speaking out of line.  All I know is we have to advocate for ourselves because many of the doctors are very behind with their information.
frijole

[Deb_c430]

So sorry to read this, I know they are hard words to hear.  

Don't give up yet,  there are options still. Frijole  has offered some great options!

So breath deep,  

Good luck

deb

[tahoeunicorn]

I don't have the number from my lab yet. I'm going to start talking to insurance company and see if I can get 2nd opinion. PA said dr. would not even consider weight-based Riba. He is wanting to wait until something "NEW" yeah right. Thinking of taking to University of TN in Memphis, if insurance will cover. This is just hitting at the worst time. It's gotta get better now. that was third strike. my bad luck runs in threes. So maybe and hopefully I can get something else going. Just got me extremely depressed at the moment.

Thanks for the support I will still be here.

Lynn  

[Bill1954]

Frijole has given you some good thoughts above. I feel like I’m missing some info here as well, though.

The Standard Of Care doesn’t require a patient to achieve HCV RNA negative status at 12 weeks; it only suggests that a two log-10 drop is recommended for treatment to continue. What were your baseline VL numbers, vs. the 12 week labs?

You will want to discuss this with your doctor *prior* to ending treatment- if necessary, call/fax your treating doctor/PA with the following questions:
~~~~~~~~~~~~~~~

What is my net log-10 RNA reduction over the last 12 weeks of treatment?

What other therapeutic options are currently available to me, especially considering the somewhat dismal results of the HALT-C studies regarding maintenance therapy released in the Nov ’07 AASLD meeting in Boston?

As a stage 4 patient, how do you interpret the risk/benefit ratio for continued treatment? Wouldn’t it be wiser for me to continue treatment (assuming you’re tolerating Tx from a subjective as well as hematological standpoint) through 24 weeks, and consider jump-starting with increased IFN/riba?

Discuss changing ‘flavors’ of interferon at this juncture. If you’re currently using Pegasys, consider changing to high-dose PEG-Intron or Infergen, and see if you achieve a favorable response.
~~~~~~~~~~~~~~~~~

Do this *before* stopping treatment- this means dealing with things tonight if necessary. Leave a message with the doctor’s service, asking him for a telephone consult this evening. He may have some very good reasons for these decisions, but ask him to explain them before hand and make sure you fully understand his logic.

Good luck to you, and let us know how this turns out. Get busy now- you don’t have time to be depressed; that can come later :o).

Take real good care,

Bill

[Deb_c430]

More VERY GOOD advice, from Bill, you should also be able to get a second opinion from your insurance,  it is your right.

This is time 3 for me also, I am on infergen/riba.  

Agrees with Bill again, get busy!  Prayers are with you!  

Deb

[Bill1954]

Are you certain that you are Stage 4 (cirrhosis)? And your doctor wants to wait for new meds? I’d like to know what meds he has in mind. I’ve talked to three fancy-schmancy Hepatologists over the last several months about the “new drugs”, and none of them advised basing any treatment decisions around them. If they materialize, that’s wonderful- but as a stage 4, I wouldn’t want to get caught waiting.

Are you certain this decision is predicated by insurance? I was a slow responder at 12 weeks in my first treatment; my insurance not only approved continued treatment, but authorized a substantial increase in riba dosage without any quibble at all.

GRRRR, this makes me mad!

Bill
( A former Lake Tahoe resident)

[lor325]

I am sorry!! Know that depressed feeling with the phone call. Just recently got that call to.

[Bill1954]

Geno 2 and 3 have traditionally been linked together in studies as having comparable response to therapy; recent data shows differently;

J Powis, KM Peltekian, SS Lee, and others (Canadian Pegasys Study Group). Exploring differences in response to treatment with peginterferon alpha 2a (40kD) and ribavirin in chronic hepatitis C between genotypes 2 and 3. Journal of Viral Hepatitis 15(1): 52-57. January 2008.
http://www.hivandhepatitis.com/hep_c/news/2008/012908_b.html

An excerpt from the conclusion:

In conclusion, the authors wrote, "There is significant interaction between cirrhosis and genotype 3 leading to a poor antiviral response in such patients requiring an alternate management strategy."

Double GRRRR!!

Bill

[zazza]

Duh - not being on weight based dosing is probably the reason you are not UND. 48 weeks and weight based dosing is what you need. No waiting for new meds. Go to another doctor right away.

There is a small risk of course that you are a true non-responder, but that is rare with geno 3's.

Keep fighting!

[Deb_c430]

Also have they mentioned to you a  low dose matienance program?

That was an option they gave me should infergen not work

I am 1a don't really know much about 3's

[tahoeunicorn]

I have called Insurance company and they will cover 2nd opinion. I just have to find the Doctor. Think I'm gonna call UT drs tomorrow. to late to do anything today.
Thanks yall are just what I needed to pick myself back up.

Bill-- According to bx done 5/07 Stage 4 grade 3 cirrhosis.

Now I start Fighting again

Thanks

[Deb_c430]

Way to go!  Glad they will pay!  Good luck and GB!

Deb

[susan400]

I know how bad this news makes you feel, as I've heard it too many times myself.  Don't give up!  Definitely check out a 2nd opinion and get another doctor's perspective on this.  Let us know what happens.

Susan400

[Rangle]

Sorry to hear the news ...I wouldn't stop treatment Until I got a second opinion also
I'm glad your able to ....I'm a geno 3 also,though I don't know much about that geno except what I learned here... Comments by frijole & Bill are right on

Hang In there

[Bill1954]

I’ll be very interested to hear how this resolves. I am GT-1, last treatment I didn’t clear virus until between weeks 16 and 20. We increased treatment dosage and duration, extending from the assigned 48 weeks to 56 weeks.

I relapsed within 28 days of Tx completion, but the point I’m trying to make is that I DID respond to treatment, just late in doing so. As a responder, I’m *aggressively* re-treating again right now; this time I reached Early Viral Response (EVR). Time will tell if I can stick this response, but at least I have the opportunity.

If your doctor refuses to let you continue with this particular treatment, discuss how he is going to ‘flag’ you; I’d argue against letting him label you as a non-responder at this point.

Again, good luck to you, and please stay in touch;

Take care—

Bill

[Kalio1]

I agree with everything Bill has said.
I am a geno 3, early cirrhosis   and cleared the virus, but not without a battle and not without some creative adjustments to SOC. You need a doc who will help develop a strategy that will work, from the little I know of your situation it sounds like you are a slow responder ( could be due to not enough riba? just guessing) but you are not a nonresponder and don't let that doc label you as such.
If ins. gives you flack, apply for patient assistance programs from the Interferon companies, they can help. Don't let the doctor cut you off, waiting seems like a bad idea to me, even if you hadn't cleared by week 12, your liver/immune system still got relief and help from the tx.
There is not a lot of info out there for Geno 2 and 3, which makes it hard to treat outside the box.
I am sorry you are having to deal with this, as if you don't have enough concerns!
If your doc won't work with you, get one that will.
What worked for me was presenting my doc with a game plan, backed up with studies and expert opinions. A big bonus was that he didn't let his ego get in the way of my health.
I was "fully insured" which was a joke, they denied me treatment from the gitgo and I didn't have the energy to appeal so I went th Schering Plough and they did right by me and provided me with 2 1/2 years of treatment drugs.
Stay positive, don't let this discourage you, it's your liver and your life and you deserve the treatment you desire.
I wish you strength, hang in there.

[charm27]

Not weight based Riba?? You need to straighten this out and move forward.
I wish you good luck with this all will work out.

You must be on weight based Riba no wonder your not UND.

[Forseegood]

I just wish you the best going forward...hang in there...

[tahoeunicorn]

Thank you all for the support. The support has helped me to bounce bad quicker. Shoot last night I caught my mother sitting in the den (her Bedroom) just crying. She said it got to her because she doesn't want to loose me and now she is afraid for me. I told her  not to worry that my Friends on the Forum had put me back into the fight mode.

Thank ya'll all

Lynn

[nygirl7]

Dear Tahoe
I agree with everything Bill and Kalio and Frijole and everybody have said.

I am a geno 1a and 1b, stage 3and cleared the virus, but not without a battle and not without some creative adjustments to SOC too!  

I was not UND until week 24, most doctors don't expect you to quit until week 24 if you are not UND.  You need to call and find out what your viral load is - if you had near the 2log drop you should be able to adjust your meds and fight!

I extended to 72, took extra riba and got SVR.  You have to fight for yourself against doctors who aren't up on the latest and greatest studies.  You CAN have SVR.  Unless you are truly a non-responder there is no reason you can't adjust stuff and fight.

You call that doctor and get them to send over your PCR results to a fax right now.  Or read them to you.  You just tell them you want them - and make them give them to you.

Come on we are here to support you and help give you the courage to say "no doc you are WRONG" - that is hard to do but you can do it!  Get the numbers, if the guy could tell you you have to quit then he has them in front of him - you shouldn't have to wait for them to type them out to you and mail them that's BOGUS!  

Keep taking your riba for now...........and up the dose if you aren't even on weight based.  Don't stop though until you have absolute confirmation that you can't go foward.

Believe me if I listened to my own doctor I wouldn't have had SVR today and I wasn't UND at 12 either!

BEST OF LUCK!~
Debby

[tahoeunicorn]

I have decided to continue treatment even though I was told to stop. At this moment I am waiting to hear back from my PCP about a referal to another Dr. that I have found with University of Tennesse Physicians (teaching hospital). As soon as I find out about the referral I'll let everyone know. If I need a transplant this is where I would have to go. So I'M STILL FIGHTING, I REFUSE TO GIVE UP!!!!!!

Thanks All

Lynn  

[nygirl7]

Did you find out how much your viral load DID change? I'd bug them forever if I was you until they told me the difference from baseline until now. Unless you are a non-responder why wouldn't he just say go to 24 like everybody else?

Also I'm pissed now - why in the world couldn't the doctor call you directly with this news and not have his PA do it?  My doctor called me with all my big news type stuff to tell me personally. I think that stinks that he couldn't talk to you directly!

Tahoe we are all here hoping for the best for you.

[Bill1954]

Hi Lynn,

Good morning, and glad to see you up and running. I’d seriously consider discussing your plans in detail with your treating doctor. Use tact, but explain your decision to continue current treatment until you consult with another physician. What you *don’t* want on your referral is a note stating that you are “ADA” (against doctor’s advise). This can get you into a real pickle later.

If you intend to continue, even temporarily, call and discuss your plans with your *treating* doctor; if he seems agreeable, then fax a copy of details to his office, and ask that he date, sign and return so you have this documented. Remember that he is privy to information that we aren’t, and he may be basing his decisions on other non-viral related criteria.

Good luck with the UT doc’s, and let us know how things turn out.

Best to you,

Bill