Aa
NO! TX Being stopped
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.
I will post tomorrow after I go to the dr. and let everyone know what he tells me. Thanks for everyone's support it really helps.
Lynn
Lynn
Your post got me thinking. My GI wanted me to stop at 6 weeks due to low platelets. Thanks to coming here and going bananas, I got a second opinion and continued.
I relapsed but I don't regret pushing on.
Go see a good heptalogist and tell your mom that even if you do have cirrhosis, that doesn't mean you don't have many good years ahead of you.
Best of luck, OH
I relapsed but I don't regret pushing on.
Go see a good heptalogist and tell your mom that even if you do have cirrhosis, that doesn't mean you don't have many good years ahead of you.
Best of luck, OH
Sorry @ the 12 weeks results, and glad your not giving up yet.
Good for you.
My sympathy to you and family in the loss of your dad. Much to go thru for you right now. Your poor mom, loosing him and you fighting this.
I agree....keep fighting! Specially as Geno 3.
Prayers, good luck, stay strong,
LL
Good for you.
My sympathy to you and family in the loss of your dad. Much to go thru for you right now. Your poor mom, loosing him and you fighting this.
I agree....keep fighting! Specially as Geno 3.
Prayers, good luck, stay strong,
LL
Just caught your post. Haven't read the other responses but saw where you're considering the University of TN. I didn't like the answers, or lack of answers from my previous doctor (horse doctor from down east NC) after I relapsed last Sept. Went up to Duke University last week and found out more in an hour than those previous 48 weeks of treatment with the old doc. Don't give up the fight!
Recognize the Lake????
Thanks All I really Appreciate the support..
A Nutty Unicorn,
Lynn
Thanks All I really Appreciate the support..
A Nutty Unicorn,
Lynn
Obviously you aren't in the Lake Tahoe that Bill and i used to live in!
I am so glad you are going to fight. It sounds like you have no other choice. I agree with everything people have said about the Riba not being weight based, not stopping a week 12. If you are getting drugs through your ins. co, I believe the script lasts longer than that. I would be furious if my dr said no weight based Riba. Is there some reason for this, except for the old studies that say 2's and 3's should be on 800? They are so outdated. I disagree with Bill about trying to talk to your dr. If he is so adamant about your stopping and not doing weight based Riba, he isn't going to change his mind. You should try and get into that teaching hospital ASAP, before you run out of meds.
This really makes me angry too. At a stage 4 you can't wait for new drugs, they will be a few years at least! I didn't clear at week 12 either. I wanted to go 72 weeks b/c I was a slow responder, but had to stop suddenly from illness. I relapsed, but if I had gone the full 72 weeks, I had such a better chance of SVR. Don't give up and keep us posted. As you can tell we are not shy with our opinions! lol If you can't get a hep dr soon, some of these rock star docs like Gish will at least talk to you and your dr about tx. Let us know!!
I am so glad you are going to fight. It sounds like you have no other choice. I agree with everything people have said about the Riba not being weight based, not stopping a week 12. If you are getting drugs through your ins. co, I believe the script lasts longer than that. I would be furious if my dr said no weight based Riba. Is there some reason for this, except for the old studies that say 2's and 3's should be on 800? They are so outdated. I disagree with Bill about trying to talk to your dr. If he is so adamant about your stopping and not doing weight based Riba, he isn't going to change his mind. You should try and get into that teaching hospital ASAP, before you run out of meds.
This really makes me angry too. At a stage 4 you can't wait for new drugs, they will be a few years at least! I didn't clear at week 12 either. I wanted to go 72 weeks b/c I was a slow responder, but had to stop suddenly from illness. I relapsed, but if I had gone the full 72 weeks, I had such a better chance of SVR. Don't give up and keep us posted. As you can tell we are not shy with our opinions! lol If you can't get a hep dr soon, some of these rock star docs like Gish will at least talk to you and your dr about tx. Let us know!!
Good for you! I read your profile and saw that your dad had just died. My condolences. This is a hard time for your family, and then to be dealing with a doctor who apparently doesn't know the ropes here, that is too much.
You drew a lot of good folks out with your post - Kalio, glad to see your post, you being a 3 as well. And Bill and NYgirl and many others who have modified their treatments. The goal, I think is to only do this once, so whatever you can do to change up treatment may get you there. Lots of good advice here.
I am glad you didn't stop and wish you the best.
frijole
You drew a lot of good folks out with your post - Kalio, glad to see your post, you being a 3 as well. And Bill and NYgirl and many others who have modified their treatments. The goal, I think is to only do this once, so whatever you can do to change up treatment may get you there. Lots of good advice here.
I am glad you didn't stop and wish you the best.
frijole
So glad your fighting!
I think the one thing I learned through all this hcv and accident is that you and only you will fight for your body!
As so many have pointed out above sometimes you have to advocate for your self,
GB and proud of you!
Deb
I think the one thing I learned through all this hcv and accident is that you and only you will fight for your body!
As so many have pointed out above sometimes you have to advocate for your self,
GB and proud of you!
Deb
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
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
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.
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.
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
Thanks All
Lynn
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
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
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
Thank ya'll all
Lynn
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.
I wish you good luck with this all will work out.
You must be on weight based Riba no wonder your not UND.
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.
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.
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
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
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
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
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
Susan400
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
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
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
That was an option they gave me should infergen not work
I am 1a don't really know much about 3's
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!
There is a small risk of course that you are a true non-responder, but that is rare with geno 3's.
Keep fighting!
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
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
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
