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UPDATE ON 36 WK BREAKTHUR
Hi , I posted 2 wks ago on my 36 week breakthur. My doc told me to continue treatment. I tested a week later and got my VL of 22,000. It's official treatment FAILURE!. I was UND wk 12 and 24 on Vic. I have 2 weeks left of the 3 meds if someone needs.
My doc talked to a transplant specialist about seeing me. So hopefully I'll be accepted for 1 of his trials for hard to treat patients. So waiting for my interview date!
Good Luck everyone and I'll update when I get my interview!
Linda
My doc talked to a transplant specialist about seeing me. So hopefully I'll be accepted for 1 of his trials for hard to treat patients. So waiting for my interview date!
Good Luck everyone and I'll update when I get my interview!
Linda
Hi, Sorry to hear your news. I have treated twice in the last year (one SOC and one trial with SOC + 2 direct acting antivirals) - both times I was stopped early as I didn't reach a 2 log drop in 12 weeks with SOC and had a viral breakthrough at week 8 in the trial. My trial coordinator is confident that there will be a cure for us "hard to treat" folks within the next 2 to 4 years. For trials, my recommendation based on what I learned from folks in this community and my own experience, is do as much research as possible, make a list of every question you could possibly have and reach out to this community for ideas before you meet with the trial people. Good luck moving forward. Get some rest and relaxation - do something healthy that makes you feel good.
Sorry to hear the news. Hard to hear after being undetected for so long. At 20 weeks I may be in the same boat will know soon. My trial doctor said trials are coming with the new drugs for breakthroughs on protease inhibitors which look very promising. I know after being on the drugs for so long and feeling terrible It is hard to contemplate another round. But I know in the end we will beat this virus. Good luck going forward and let us know how you do.
Sorry to hear about you not having the desired result on your treatment,however it is encouraging that you now may be able to garner the advice from a hepatologist that hopfully is much more knowledgeable and experienced with HCV and its treatments
From prev. posts I recall your current doctor did not know to do the all important "critical "PCR at week 8 while doing Vic . Being you were a non -responder from a prev. therapy and without this 8 week test he then thought you should only do 36 weeks rather than the 48 recommended(especially in light of the fact he did not know your 8 week VL)
. Then at week 36 when you had a breakthrough with a VL of 1400 he suggested you just keep going
.Now he is suggesting you just dive right back into treatment again with no regard to possible "resistance issues" ?
Like I said ..I am glad you have been referred to someone else as this direction has been against many protocols..
I am sorry to be so blunt ,however this is your life and for some doctors to have such ill regard for their patients care is careless IMO
I would imagine the new physician ,if he is connected to a transplant centre will have experince and discuss with you in depth the appropriate testing recommended now,being the "Genosure" resistant variants" test and the IL28B gene marker test to possibly help ascertain the reason for two treatment failures.
I also agree with Hectors comments about there certainly being no rush to treat currently with just the moderate fibrosis you have and hopfully the new doctor will discuss all your options with you after doing the appropriate testing ...
I wish you the best ...
Will
From prev. posts I recall your current doctor did not know to do the all important "critical "PCR at week 8 while doing Vic . Being you were a non -responder from a prev. therapy and without this 8 week test he then thought you should only do 36 weeks rather than the 48 recommended(especially in light of the fact he did not know your 8 week VL)
. Then at week 36 when you had a breakthrough with a VL of 1400 he suggested you just keep going
.Now he is suggesting you just dive right back into treatment again with no regard to possible "resistance issues" ?
Like I said ..I am glad you have been referred to someone else as this direction has been against many protocols..
I am sorry to be so blunt ,however this is your life and for some doctors to have such ill regard for their patients care is careless IMO
I would imagine the new physician ,if he is connected to a transplant centre will have experince and discuss with you in depth the appropriate testing recommended now,being the "Genosure" resistant variants" test and the IL28B gene marker test to possibly help ascertain the reason for two treatment failures.
I also agree with Hectors comments about there certainly being no rush to treat currently with just the moderate fibrosis you have and hopfully the new doctor will discuss all your options with you after doing the appropriate testing ...
I wish you the best ...
Will
linda, so sorry for your news. hopefully you'll get into one of the trials and you'll defeat the dragon. best wishes. belle
Hi Hector,
My gastrologist recommends I do a trial now and spoke with the doctor. I told him I thought I had to wait a couple years, He said no. If I could treat now and get this black cloud off of me I'll do it! If I have to wait so be it!
Thank you for your kind words. Take care,
Linda
My gastrologist recommends I do a trial now and spoke with the doctor. I told him I thought I had to wait a couple years, He said no. If I could treat now and get this black cloud off of me I'll do it! If I have to wait so be it!
Thank you for your kind words. Take care,
Linda
Linda, I very sorry that you have a viral breakthrough after all of your efforts. It has to be very disappointing after all your time and efforts.
Looking on the bright side, it shows that you are tough and can do treatment of a long period of time and secondly and more importantly, you say your your liver's stage is only Stage 2. ("I'm stage 2 so I have a little time!") If by "a little time" you mean a decade or more I guess we have different concepts of time. I am not sure why you feel the urgent need to treat, it normally will take many years until your liver so damaged that with treatments your odds old treatment success would be less. I understand that it would have been great to have cure your hepatitis C now but apparently you are resistant to current drugs. In the future there should be more effective treatments for had to treat patients like yourself.
In the next 5-10 years we'll look back on current treatments as primitive. Remember the first direct acting antivirals have only been commonly available to patients for less than a year. You have plenty of time to wait for new more efficacious treatments to be available. They will have less side effects and have shorter treatment duration times. You are in a great position to wait for future treatments.
Of course consult with your gasto or hepatologist as they are fully aware of your treatment response and health status.
Good luck to you!
Hector
Looking on the bright side, it shows that you are tough and can do treatment of a long period of time and secondly and more importantly, you say your your liver's stage is only Stage 2. ("I'm stage 2 so I have a little time!") If by "a little time" you mean a decade or more I guess we have different concepts of time. I am not sure why you feel the urgent need to treat, it normally will take many years until your liver so damaged that with treatments your odds old treatment success would be less. I understand that it would have been great to have cure your hepatitis C now but apparently you are resistant to current drugs. In the future there should be more effective treatments for had to treat patients like yourself.
In the next 5-10 years we'll look back on current treatments as primitive. Remember the first direct acting antivirals have only been commonly available to patients for less than a year. You have plenty of time to wait for new more efficacious treatments to be available. They will have less side effects and have shorter treatment duration times. You are in a great position to wait for future treatments.
Of course consult with your gasto or hepatologist as they are fully aware of your treatment response and health status.
Good luck to you!
Hector
I am so sorry to hear the bad news. It's good you are working towards next steps. So much promising research recently, more options keep coming. Stay positive, you can do this.
My doc didn't check me at 8 wks, but yours is low. My 4 wk was still at a million. 21% fail and I just happened to be 1 of them. 79% go on to UND like I'm sure you will.
Sure I'm very disappointed that something that makes you feel so awful didn't work. I'm very confident that my doc will get me on the trial! I'm stage 2 so I have a little time!
Thank you everyone for your well wishes! Hope everyone suceeds on their treatment!!!
Linda
Sure I'm very disappointed that something that makes you feel so awful didn't work. I'm very confident that my doc will get me on the trial! I'm stage 2 so I have a little time!
Thank you everyone for your well wishes! Hope everyone suceeds on their treatment!!!
Linda
sorry to hear of this. 36 weeks is a lot of dedication! Dont ever give up!! Best wishes to you!
I cannot imagine how discouraging this must be. What a disappointment to remain UND all the way to week 36. I hope things work out with the transplant specialist and you continue to post how things are going. Hang in there♥
I am so sorry, Linda. It must be devastating. I am hoping your doc can get you in to see the transplant specialist and you can get into a successful study. I am wishing you the best.
Hi Linda,
I'm so sorry to hear about your breakthrough! I'm hoping you get in a trial very soon. It must be so hard to go through all that work. The only bright side is that you have given your liver a much needed break and thus prolonged your life.
I've also heard that a new round of drugs will be out in a few years. At the rate I'm going with my viral loads (week 8 at 102 vl on victrelis) , I may be in the same boat as you. Keep us posted!
Best,
Falala
I'm so sorry to hear about your breakthrough! I'm hoping you get in a trial very soon. It must be so hard to go through all that work. The only bright side is that you have given your liver a much needed break and thus prolonged your life.
I've also heard that a new round of drugs will be out in a few years. At the rate I'm going with my viral loads (week 8 at 102 vl on victrelis) , I may be in the same boat as you. Keep us posted!
Best,
Falala
I'm so sorry to hear this. I can' imagine the disappointment. You really are going to have to shift your focus to the next opportunity. I'm hoping that you'll find the perfect trial for you. There are so many options coming down the pike, please just do your best to stay healthy. All the best.
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