Aa
Am going to start treatment
I had my session with the clinic Nurse julie,she actually gave me a choice of bocepravir or telepravir
she said in my situation I would have a clear indication at 4 weeks and if is not good I stop I've been thinking
and that's not good all these people struggling with side effects,and he gave me the form to sign consent
as certain thing could happen I'm scared and as I've read alot of stories it seems such a long time to feel
yuk I need to realise my life is at stake and I guess just hope I can do it and that the side effect are not as bad
I have a cirrhotic liver so I really have to give it a try. but It putting toxic substances in my body,goes against everything I,ve believed in my life anyway I will be starting around November 6th,I hope I don't cop out early as it really is my only hope sorry folks just a bit depressed today,the day after the meeting.
she said in my situation I would have a clear indication at 4 weeks and if is not good I stop I've been thinking
and that's not good all these people struggling with side effects,and he gave me the form to sign consent
as certain thing could happen I'm scared and as I've read alot of stories it seems such a long time to feel
yuk I need to realise my life is at stake and I guess just hope I can do it and that the side effect are not as bad
I have a cirrhotic liver so I really have to give it a try. but It putting toxic substances in my body,goes against everything I,ve believed in my life anyway I will be starting around November 6th,I hope I don't cop out early as it really is my only hope sorry folks just a bit depressed today,the day after the meeting.
hi Marco, i am about 7 weeks post-treatment with incivek. i am experiencing compensated cirrhosis with grade 1 esophageal varices. the hvpg was 12mm before i started. I no longer have the constant liver ache that i once had and the muscle cramps that i had every day for years are gone. i don't know if the treatment was successful and will find out in about 17 weeks. i would not hesitate to do it again. in a clinic that is currently treating about 120 with triple therapy i experienced, according to the clinicians, one of the worst rashes they have seen. i posted photos of it on my profile. i was fortunate to have a good dermatologist that prescribed clobetasol, the post powerful topical steroid cream. i was told that incivek would be a better choice for me because it was more powerful than boceprevir. however, that was over one year ago, and the docs may be more knowledgeable about the right drug to use for someone with cirrhosis. i agree with the posters above and i would gladly accept the side effects of these drugs over the suffering of end stage liver disease.
godspeed my friend
eric
godspeed my friend
eric
Oops, Marco, I meant you would have to take all 3 meds for 44 weeks, if you chose the Boceprevir, as opposed to 12 weeks on 3 meds, if you chose the Incivek.
So on Incivek, you would have a rough 12 weeks on Incivek, but then you would only have to do the last 36 weeks, on just the Inf and the Riba, which will seem like a piece of cake, in comparison to being on the Incivek!
I only know of 2 people who did the 48 weeks with the Boceprevir. And they did have to do Procrit shots every 5 days, other-wise, they would've had to have had blood trsansfusions, from the anemia
So on Incivek, you would have a rough 12 weeks on Incivek, but then you would only have to do the last 36 weeks, on just the Inf and the Riba, which will seem like a piece of cake, in comparison to being on the Incivek!
I only know of 2 people who did the 48 weeks with the Boceprevir. And they did have to do Procrit shots every 5 days, other-wise, they would've had to have had blood trsansfusions, from the anemia
They say when you have cirrhosis your not as responsive as if you just fibrosis so they would rather know that you will have some response rather than hit you with a ton of bricks as people who are cirrhotic can have worse side effects,that's why.
Yes your absolutly right Hector It just goes against alot of things that I have believed in my life,and scared I will bugger up the treatment,and it's toxic,and I wonder wether I can go on living that long with the side effect,but as you say sometimes we have to suffer,I'm havig an ultrasound before treatment,and I may know something more,I'm just feeling sorry for my self,and I will try to look at the bigger picture tthank you for your encouragment.
That is one reason, but also to see how your body responds to Interferon; rapidly, or barely at all.
How fast someone responds to Interferon/Riba (in terms of their viral load going down, or undetected) within a 4 week period, is a good indicator, of future Sustained Viral Response.
The Doctor doesnt want to damage your liver, and not cure you.
How fast someone responds to Interferon/Riba (in terms of their viral load going down, or undetected) within a 4 week period, is a good indicator, of future Sustained Viral Response.
The Doctor doesnt want to damage your liver, and not cure you.
I think that's why the doctor is treating me for four weeks with just standard therapy riba and inter then depending on the response add Telepravir,
because I am compromised and he's being careful not to wack me to hardto start.
because I am compromised and he's being careful not to wack me to hardto start.
Oh, and I wanted to add, that I also got used to the Interferon. So, my main challenge was the hemolytic anemia. As soon as my HGB went below 10, at 9 wks into Tx, I began taking a rescue drug called Procrit. You have to stayon top of the anemia, or it gets out of hand quickly.
It would be best if you lined up your Procrit now, and make sure your medical insurance will allow for it, because it's not FDA regulated, over here in the U.S, to be used in conjunction with the triple Tx.
The Teleprivir frequently has a rash. So if you cant stand rashes, go with the Boceprevir. But then, be aware, you will be on all three meds, for 24 weeks, twice as long as the time that all three meds are taken, with Teleprevir.
Since taking the three meds causes worse anemia, than the two, you will have a longer dtruggle with the hemolytic anemia, if it occurs. It doesn't always occur though~
It would be best if you lined up your Procrit now, and make sure your medical insurance will allow for it, because it's not FDA regulated, over here in the U.S, to be used in conjunction with the triple Tx.
The Teleprivir frequently has a rash. So if you cant stand rashes, go with the Boceprevir. But then, be aware, you will be on all three meds, for 24 weeks, twice as long as the time that all three meds are taken, with Teleprevir.
Since taking the three meds causes worse anemia, than the two, you will have a longer dtruggle with the hemolytic anemia, if it occurs. It doesn't always occur though~
Not everybody has many side effects. The Teleprivir is fast and hard, but shorter, the Boceprevir is mild, but longer. My side effects werent so bad.
After my 4 week lead in, my virus was undetectable, and my liver enzymes were normal, for th efirst time in 20 yrs. So I didn't think of the meds as toxic (but yes, they are), but as this amazing substance that was most likely gonna cure me.
Of course, because you are cirrhotic, you will have to treat for 48 weeks.
The Boceprevir never bothered me, it was the ribaviran that caused most of my symptoms.
After my 4 week lead in, my virus was undetectable, and my liver enzymes were normal, for th efirst time in 20 yrs. So I didn't think of the meds as toxic (but yes, they are), but as this amazing substance that was most likely gonna cure me.
Of course, because you are cirrhotic, you will have to treat for 48 weeks.
The Boceprevir never bothered me, it was the ribaviran that caused most of my symptoms.
Chris is right. Treatment ain't perfect but is it tons better than it was even two years ago and a new generation of interferon meds are in the pipeline for those behind us so hopefully they will have it a little easy than us.
Worrying about things that haven't happened and may not happen is not a good use of your thoughts or energy. It drains your positive energy for your coming battle with hepatitis C and produces only compounds all you have on your plate already. There is no dress rehearsal for life. Do it and do the best you can. That is all any of of can do. We aren't superman or superwoman. We fight as best we can. We get discouraged and sometimes feel defeated. And then we get back up and fight another day. Like life. Take it one day at a time and don't look too far ahead. It can be overwhelming. Take it step by step and you will get through it.
If I started worrying about my cancer killing me before I get my transplant, or being sliced and diced in surgery and taking meds every day for the rest of my life I would have gone insane long ago. Be hopeful and find your own inner strength. Think about all the people here who have successfully cured their hepatitis. Some retreated many, many times and suffered a lot before finally succeeding. Let them be an inspiration to you. If they can do it so can you.
Hepatitis C treatment? Chemo for my liver cancer? Liver transplant?
I say "Bring it on!" The sooner begun, the sooner done.
Hector
Worrying about things that haven't happened and may not happen is not a good use of your thoughts or energy. It drains your positive energy for your coming battle with hepatitis C and produces only compounds all you have on your plate already. There is no dress rehearsal for life. Do it and do the best you can. That is all any of of can do. We aren't superman or superwoman. We fight as best we can. We get discouraged and sometimes feel defeated. And then we get back up and fight another day. Like life. Take it one day at a time and don't look too far ahead. It can be overwhelming. Take it step by step and you will get through it.
If I started worrying about my cancer killing me before I get my transplant, or being sliced and diced in surgery and taking meds every day for the rest of my life I would have gone insane long ago. Be hopeful and find your own inner strength. Think about all the people here who have successfully cured their hepatitis. Some retreated many, many times and suffered a lot before finally succeeding. Let them be an inspiration to you. If they can do it so can you.
Hepatitis C treatment? Chemo for my liver cancer? Liver transplant?
I say "Bring it on!" The sooner begun, the sooner done.
Hector
Great advice all!
Be glad there is the tx today that there is!
For me, the choice to treat was an easy one especially if you look at what ESLD can be like.
Like Hector said, I would regret not treating and though tx could make make decompensate, my hepa and RN watch over me very closely.
I may need a transplant at some time, but I will cross that bridge when (or IF I should say!) I get to it.
No worries, that's an order!
Chris
Be glad there is the tx today that there is!
For me, the choice to treat was an easy one especially if you look at what ESLD can be like.
Like Hector said, I would regret not treating and though tx could make make decompensate, my hepa and RN watch over me very closely.
I may need a transplant at some time, but I will cross that bridge when (or IF I should say!) I get to it.
No worries, that's an order!
Chris
I thought you decided on the Teleprevir?
I remember you posting something like this before and thinking I did not quite understand the four week lead in. You indicated you will know in four weeks whether you can proceed with treatment and I was wondering how you would know.
It is the four week lead in I do not quite follow. How much of a drop in viral load do you have to have for your doctor to consider you responsive? I kind of understand how this works with Boceprevir but not Teleprevir.
I honestly think you would feel less anxious if you had some facts and goals to keep in mind. I would be more worried about having to be UND in week 4 than the side effects. This is just my opinion but the first four weeks on Peg and Riba ought not to be too bad.
I remember you posting something like this before and thinking I did not quite understand the four week lead in. You indicated you will know in four weeks whether you can proceed with treatment and I was wondering how you would know.
It is the four week lead in I do not quite follow. How much of a drop in viral load do you have to have for your doctor to consider you responsive? I kind of understand how this works with Boceprevir but not Teleprevir.
I honestly think you would feel less anxious if you had some facts and goals to keep in mind. I would be more worried about having to be UND in week 4 than the side effects. This is just my opinion but the first four weeks on Peg and Riba ought not to be too bad.
Well since everyone has talked about the two drugs with you many times and the reason for the lead-in theres nothing more to say there. Your cirrhotic and theres a very good chance if you don't treat things will be far worse then putting toxic meds in you... So if you "cop" out Just understand what you might be looking at.... Good luck
Yea, I know what you mean of putting toxic substances in your body
But here it goes: what is toxic for others might not be toxic for you. Think peanuts or fish allergies: some people react badly and some do not have any problem. You can do it and when succesful you will be able to look back and say that it was worth it
As for the side effects: Keep your eyes on the prize !!!!
But here it goes: what is toxic for others might not be toxic for you. Think peanuts or fish allergies: some people react badly and some do not have any problem. You can do it and when succesful you will be able to look back and say that it was worth it
As for the side effects: Keep your eyes on the prize !!!!
Which did you choose? If you have cirrhosis, it's very important that you treat now while you still can. The last thing you want is to wait too long and then find out your liver can't handle treatment.
Advocate1955
Advocate1955
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Yes, treatment can be difficult especially for person's with cirrhosis who on average have more and more serious side effects and lab abnormalities than person with less liver disease. BUT treatment is far less life impacting than decompensated cirrhosis and End-Stage Liver Disease which will affect you every day of your life as long as you live.
Things are not good or bad but degrees of both. Treatments for many serious disease are not easy but the sometimes are the only thing that can stop the disease. Cancer patients don't think chemotherapy is good or fun either but it certainty beats dying from cancer. And that is why they do it. To prevent something worse happening.
You are very lucky to still be able to still treat your hepatitis C. Hopefully you can stop the progression of your liver disease now. Not choosing to treat is just as much as choice as choosing to treat. For me personally I would have had a hard time dealing with myself if I hadn't decided to treat my hepatitis C now, with decompensated cirrhosis and liver cancer, even though I will still need a transplant even if I cure my hep C. I don't want to reinfect my donor liver with hepatitis C if I can do anything to prevent it. Sometimes we have to suffer in the short term to have better long term results.
Good luck with your treatment! I hope you have a good supportive gastro or hepatologist who know how to manage treating their hepatitis C who has cirrhosis.
Hector