I got my 8 week results today and was still Detected so I decided to stop treatment and wait for the new drugs as the odds of SVR were just not looking very good at all. I'm going to try and find out about a trial otherwise I'll just wait for the new drugs to be generally available. Thanks for all your support.
Regards
Poppy
Cinnamon Girl said
Aug 5, 2013
Hi again Poppy, really sorry to hear that but I guess it didn`t come as too much of a shock to you. Keep your spirits up and take good care of yourself, you`ll get there in the end one way or another. Remember this is just a temporary setback and new interferon-free treatments will be along at some point, or the chance to get into a trial.
Wishing you all the best of luck with whatever the future may bring, we`ll still be here when you need us! ~ Jill
Poppy said
Aug 3, 2013
Hi Jill
Many thanks for your reply - I am holding out till Monday and will decide then once I see the results. My specialist went away about a week after I started treatment and has only just returned so I am also going to try and talk to him on the phone next week as well if I'm not UND just to make sure I am not reducing my chances of getting approval for any future treatment.
Regards Poppy
Poppy said
Aug 2, 2013
Hi JoAnneh
Thanks so much for your support which I really appreciate. I will post my results on Monday.
Regards Poppy
Poppy said
Aug 2, 2013
Hi Malcolm
Thanks very much for your reply which confirms what I was thinking. Just wanted to make sure I wasn't talking myself into stopping treatment prematurely. I'm keeping my fingers crossed for a miracle result on Monday otherwise might defer things for the new treatment.
Regards
Poppy
JoAnneh said
Aug 2, 2013
Poppy,
All your medical info is over my head.
I was on triple therapy w Invicek
Malcolm is well informed and I trust his opinion
100 percent.
I just want you to know my heart goes out
To you. I can't imagine the loneliness you feel
Without a support system. This forum was my
Lifeline on treatment. Amazing how close
You can come to people going thru the same things!
Glad you spoke up.
Keep us posted on your next results.
mallani said
Aug 2, 2013
Hi Poppy,
The odds are stacked against you with the Victrelis triple. As a previous non-responder and with the TT allele, you were up against it from the start. With an increased VL after the lead-in, you are not Interferon sensitive. I would wait for the 8 week VL, and if it is > 1000 i.u./ml, I would give up on the Victrelis, and wait for an Interferon-free combo. The IL28B allele is not relevant with the new DAA's and Interferon response is also not important. I would try to get on the Gilead combination as it does not include an antiprotease. I know from experience how much the Victrelis triple can knock you around, so why go on with it if the chances of success are minimal? That's just my opinion, but don't be discouraged, you'll get there eventually but may have to wait for a couple of years. Anyway, be guided by your doctor. Best of luck!
Poppy said
Aug 2, 2013
Hi Everyone
I was diagnosed in 1990 - genotype 1b - I did 12 weeks IF in 1991 with no response. I started Boceprevir triple therapy in June and am up to week 9 but am struggling to stay on it, keep working and pretending to everybody that everything is normal. I find it really hard not to be able to let anyone other than my husband know that I am on treatment and he's not very supportive - says I am choosing to take the treatment so if I don't like the side effects I should stop. I have ILB28 TT which was disappointing and an increase, can you believe it, in VL after the 4 wk IF and Ribavirin lead in. I am getting my 8 wk results on Monday and am thinking if I'm not UN there's probably not great odds of it working. I understand the 4 week lead in is still the strongest predictor and if there is not a 1 log drop there is only about a 28% chance of SVR and if not a 3 log by week 8 virtually no chance. Knowing that there are new easier drugs coming makes me wonder if I am better off waiting for them. Has anyone else had no response at the week 4 lead in and gone on to SVR. It has been really helpful to read all your posts.
Regards
Poppy
Cinnamon Girl said
Aug 2, 2013
Hi Poppy, welcome from me too, you`re amongst friends here!
You`re obviously doing the best you can to carry on as normal despite getting no support, and I wish you all the best with your results on Monday. I have to agree though that your chances of success with the victrelis treatment aren`t looking good, and unless your 8 wk results show a much better response there doesn`t seem any point in continuing.
This treatment is hard enough in any circumstances, but without a good support system in place it`s likely to be a lot more of a struggle, and in my opinion it`s actually easier to go through treatment on your own than with someone with such a negative attitude as your husband appears to have. If you do have to stop tx, remember that the new Gilead drug combos coming along in the pipeline, as mentioned by Malcolm, should be easier to cope with as well as offering you a much better chance of success.
Wishing you all the best of luck, whatever happens. Keep us posted!
Hi Everyone
I got my 8 week results today and was still Detected so I decided to stop treatment and wait for the new drugs as the odds of SVR were just not looking very good at all. I'm going to try and find out about a trial otherwise I'll just wait for the new drugs to be generally available. Thanks for all your support.
Regards
Poppy
Hi again Poppy, really sorry to hear that but I guess it didn`t come as too much of a shock to you. Keep your spirits up and take good care of yourself, you`ll get there in the end one way or another. Remember this is just a temporary setback and new interferon-free treatments will be along at some point, or the chance to get into a trial.
Wishing you all the best of luck with whatever the future may bring, we`ll still be here when you need us! ~ Jill
Hi Jill
Many thanks for your reply - I am holding out till Monday and will decide then once I see the results. My specialist went away about a week after I started treatment and has only just returned so I am also going to try and talk to him on the phone next week as well if I'm not UND just to make sure I am not reducing my chances of getting approval for any future treatment.
Regards
Poppy
Hi JoAnneh
Thanks so much for your support which I really appreciate. I will post my results on Monday.
Regards Poppy
Hi Malcolm
Thanks very much for your reply which confirms what I was thinking. Just wanted to make sure I wasn't talking myself into stopping treatment prematurely. I'm keeping my fingers crossed for a miracle result on Monday otherwise might defer things for the new treatment.
Regards
Poppy
All your medical info is over my head.
I was on triple therapy w Invicek
Malcolm is well informed and I trust his opinion
100 percent.
I just want you to know my heart goes out
To you. I can't imagine the loneliness you feel
Without a support system. This forum was my
Lifeline on treatment. Amazing how close
You can come to people going thru the same things!
Glad you spoke up.
Keep us posted on your next results.
Hi Poppy,
The odds are stacked against you with the Victrelis triple. As a previous non-responder and with the TT allele, you were up against it from the start. With an increased VL after the lead-in, you are not Interferon sensitive. I would wait for the 8 week VL, and if it is > 1000 i.u./ml, I would give up on the Victrelis, and wait for an Interferon-free combo. The IL28B allele is not relevant with the new DAA's and Interferon response is also not important. I would try to get on the Gilead combination as it does not include an antiprotease. I know from experience how much the Victrelis triple can knock you around, so why go on with it if the chances of success are minimal? That's just my opinion, but don't be discouraged, you'll get there eventually but may have to wait for a couple of years. Anyway, be guided by your doctor. Best of luck!
Hi Everyone
I was diagnosed in 1990 - genotype 1b - I did 12 weeks IF in 1991 with no response. I started Boceprevir triple therapy in June and am up to week 9 but am struggling to stay on it, keep working and pretending to everybody that everything is normal. I find it really hard not to be able to let anyone other than my husband know that I am on treatment and he's not very supportive - says I am choosing to take the treatment so if I don't like the side effects I should stop. I have ILB28 TT which was disappointing and an increase, can you believe it, in VL after the 4 wk IF and Ribavirin lead in. I am getting my 8 wk results on Monday and am thinking if I'm not UN there's probably not great odds of it working. I understand the 4 week lead in is still the strongest predictor and if there is not a 1 log drop there is only about a 28% chance of SVR and if not a 3 log by week 8 virtually no chance. Knowing that there are new easier drugs coming makes me wonder if I am better off waiting for them. Has anyone else had no response at the week 4 lead in and gone on to SVR. It has been really helpful to read all your posts.
Regards
Poppy
Hi Poppy, welcome from me too, you`re amongst friends here!
You`re obviously doing the best you can to carry on as normal despite getting no support, and I wish you all the best with your results on Monday. I have to agree though that your chances of success with the victrelis treatment aren`t looking good, and unless your 8 wk results show a much better response there doesn`t seem any point in continuing.
This treatment is hard enough in any circumstances, but without a good support system in place it`s likely to be a lot more of a struggle, and in my opinion it`s actually easier to go through treatment on your own than with someone with such a negative attitude as your husband appears to have. If you do have to stop tx, remember that the new Gilead drug combos coming along in the pipeline, as mentioned by Malcolm, should be easier to cope with as well as offering you a much better chance of success.
Wishing you all the best of luck, whatever happens. Keep us posted!