Week 9 of Treatment and Looking for Encouragement Please
Zlikster said
Nov 17, 2013
Congrats on UND!
Go for 36 weeks, i went with 22w and relapsed soon after ;(
Do not let em reduce your Riba dosage :)
fight on!
PL said
Nov 17, 2013
Thanks for the encouragement everyone. It is truly appreciated.
Treatment is 36 weeks Malcolm. Fingers crossed it doesn't go any longer!!
2willy said
Nov 17, 2013
Can't say much more than what JoAnneh and the others have said just hang in there
Bill and the girls
JoAnneh said
Nov 16, 2013
PL,
Hang in there, fight the good fight!
I ended up having to do 48 weeks.
It was hard but I achieved SVR!
This forum was a life line to me
And I will always be grateful for it.
You are not alone and we get it:)
Bloomster said
Nov 16, 2013
Hi there, I just wanted to encourage you. Firstly, I'm glad you got some good news - this will help lift your spirits. Every bit of good news helps whilst on treatment. From my own experience with my husband, I found the forum a great comfort getting through the treatment phase. There is so much knowledge here and the people are lovely and will lift you up on those flat days - and we all have them! All the very best as you progress along with your treatment. Caroline
mallani said
Nov 16, 2013
Hi PL,
Congrats. It'll be interesting to see what Rx length your doc decides on. Hope the Sx are manageable. Cheers.
Matt Chris said
Nov 16, 2013
Hey PL
Super fantastic news UND is best possible news and something you will always remember. Congrats to you.
matt
Tig said
Nov 16, 2013
That's fantastic news PL! That qualifies for a big WOOT!!! Cutting that treatment time in half is a wonderful thing, congrats buddy!!
PL said
Nov 16, 2013
I wanted to give you a quick update. I got good news on Wednesday with my 8 week blood results. My virus is non detectable. :) Feeling a little happier after this. Thank you all again for the positive support.
PL said
Nov 12, 2013
Thanks for all of the info Malcolm. I'm still getting used to all of this medical lingo, but think I understand. I do not know if I have IL28B gene. Will ask on Wednesday if they know (is this standard ?). If I understood, then I guess the longer treatment is preferred under my circumstances.
I can't thank everyone enough for all of your support!! I have a great medical team (I think!), but am looking forward to the learning from those that know it best!!
mallani said
Nov 12, 2013
Hi Loopy,
Sorry, I have so many subscriptions that I often forget. Medscape is very good, and you don't need to be a Medico to Register. Anyway, I'll try to find another link. Cheers.
Loopy Lisa said
Nov 12, 2013
Hi Mallani,
This link is to a professional site that needs to be joined. Is there anyway you can copy and paste? Thanks, L
mallani said
Nov 12, 2013
Hi PL,
Sorry about my confusion regarding your Rx drugs. I hadn't come across Pegatron before. Tailoring treatment length for Geno 3's has been the subject of several Trials. Here is a link to a discussion.
As you can see, about two thirds of Geno 3's obtain an RVR. In the remaining third, about 50% go on to SVR. Factors such as IL28B genotype, body mass, platelet count, initial VL are all prognostic factors. The dose of Ribavirin is very important. The old fixed dose of 800mg/day has been discarded in favour of weight-based dosage. It has been suggested that Ribavirin is the most active of the 2 drugs for this Genotype. This is why there is a problem when anaemia becomes severe and Riba dose reduction is suggested. In Australia, Hb levels are allowed to drop to about 9 (90 over here) unless there is a contra-indication. In the USA, it seems levels below 10 are considered undesirable. I would prefer a drug like procrit to a Riba dose reduction, but I managed to survive on 1,200mg/day of Riba, even though my Hb eventually dropped to 7.2. I'm sure your Doctor will look after you, but it's worthwhile getting as informed as possible. Best of luck- hope your 8 week VL is Undet. Cheers.
Biggyb said
Nov 12, 2013
Very good luck to you PL, keep us posted on your TX, were all here to help.
Loopy Lisa said
Nov 11, 2013
Good luck fellow GT3, I hope it goes smoothly through treatment. Time will go fast and this time next year you will be sitting in a good place Hep C free hopefully.
Good luck!
Zlikster said
Nov 11, 2013
Hi PL,
my fellow GT3 fighter :) (I am also GT3, Stage I) Doubt you are on monotherapy with PegIntron, since it was long time ago while it was only choice. I was also on PegIntron + Ribavirin for 22weeks. Be strong man and have a lots of patience. Seems Riba is working "nicely" if your Hgb is getting really low. That would put a smile on my hepa's face (Riba is working!) :)
Belive me, all side fx are manageable, even serious ones like anemia (low RBC/Hgb) can be sorted with Procrit injections or if there is a need in the end a blood transfusion. Neutropenia/Leukopenia can be sorted with Neupogen shots. Do not let them reduce dose of Riba or Interferon without a fight!
I wish my hepa didn't reduced interferon and that i went with full 24 weeks (or even 36 weeks). I wasn't scared of anything that much (heavy weight loss, extreme neutropenia, headaches, joint pains) except one interferon side fx that damaged my hearing. I had/have persistent high tinnitus, and still haven't recoverd from it (professionally it hurts). I was undetected from week 8 until first week post therapy. I have relapsed soon after. With hepatitis c seems it's pretty important duration of tx and dosage of meds. If your viral load was 500k pre tx, then it must go down to <2500 (2.5 log drop) on the 12th week. Otherwise they might stop with therapy.
I was taking PegIntron shots every Saturday round 18-20h. I would crash round 23-00h before first side fx (headache) kicks in and would sleep it over (sx). For nausea i was taking ginger/lemon/honey juice. Helped a bit. Somewhere round 3rd month i have become a couch slug. Riba started kicking in harder and i lost a lot of weight. Some folks on this forum managed to be active fully during tx. Seems that helps a bit, no matter how hard it seems when you are anemic, some physical activity helps.
If you fail do not despair, new meds (without interferon) are coming, but at least give it a good fight while on this therapy. Your chances are indeed 70%.
There are a lot of folks willing to help you on this forum and some are really knowledgable (Hi Malcolm!) ;)
time to reclaim your liver back!
best
Matt Chris said
Nov 11, 2013
Hello PL
Welcome from me also, I hope your journey these next months go well. The forum can offer you deep insight on everything HCV all you have to do is just ask or use the search engine.
Keep your positive side the best you can as it helps with dealing with all the side effects.
Hopeful of your future results
matt
PL said
Nov 11, 2013
Thanks for the positive feedback Zlikster. I also appreciate the advice of not allowing them to reduce my dosage due to the anemia, as that was discussed if it continues to drop. On the last visit it was a minor drop from the previous visit, and everything was left as is.
Matt, your kind words are appreciated. I think that this group may become my salvation through the treatment. My family have been extremely supportive, however as we all know, they do not fully understand what we are going through.
Mallani, I'm in Toronto, Canada, and I'm on Merck "Pegetron Clearclick", which is a Ribavirin capsules (I take 600 mg morning and 600 at night), and peginterferon alfa-2b injection once a week. At this point, treatment is 36 weeks, assuming my next results come back showing the virus is non-detectable. If not, then 11 months.
Thanks again!
-- Edited by PL on Monday 11th of November 2013 12:07:17 PM
-- Edited by PL on Monday 11th of November 2013 12:12:45 PM
-- Edited by PL on Monday 11th of November 2013 12:13:02 PM
-- Edited by PL on Monday 11th of November 2013 12:13:19 PM
mallani said
Nov 11, 2013
Hi PL,
Welcome to the Forum. Surely you're not on Peginterferon monotherapy? I hope you're taking Ribavirin as well. Could you please clarify?
Even with a low VL, monotherapy should not be used for Geno 3. It has been used in Geno 2, but if not Undet. by week 4, Riba was added.
You say your Hb is dropping which makes me think you must be on Riba as well. Cheers.
PL said
Nov 11, 2013
Hi - this is my first time posting so I'm hoping I'm including everything you need to give me some advice. I started treatment with Pegatron on Sept. 6 for what I had hoped was 24 weeks. I have genotype 3 and my liver is a stage 2. I was told I have a 70-80% chance of a cure. My starting viral load was low at just under 500,000. After 4 weeks of treatment it was still detectable (100,000), so I've been told treatment will now be 36 weeks...maybe longer if my 8 week results still show the virus is detectable.
I'm feeling so discouraged that treatment will be longer. I'm also starting to wonder if this treatment really does have the potential to cure (70-80%) or do they say this to keep you going, as I'm reading mixed reviews about a cure. I couldn't imagine doing this for 24 weeks, and now 36, possibly 44...God - shoot me please if I get that news.
My hemoglobin is dropping, which I understand is common. I am so exhausted that walking up stairs is a real chore. That is probably my worst side effect. Second one would be that my stomach bothers me a lot. I was not sleeping at all, but have recently been prescribed an antidepressant which is helping me sleep, yet I'm still exhausted after being up for a couple of hours. I'm working (as I'm in an office). I could go on STD, but think working is keeping my mind off of this treatment so it is best to continue to do so.
Congrats on UND!
Go for 36 weeks, i went with 22w and relapsed soon after ;(
Do not let em reduce your Riba dosage :)
fight on!
Thanks for the encouragement everyone. It is truly appreciated.
Treatment is 36 weeks Malcolm. Fingers crossed it doesn't go any longer!!
Can't say much more than what JoAnneh and the others have said just hang in there
Bill and the girls
Hang in there, fight the good fight!
I ended up having to do 48 weeks.
It was hard but I achieved SVR!
This forum was a life line to me
And I will always be grateful for it.
You are not alone and we get it:)
Hi there, I just wanted to encourage you. Firstly, I'm glad you got some good news - this will help lift your spirits. Every bit of good news helps whilst on treatment. From my own experience with my husband, I found the forum a great comfort getting through the treatment phase. There is so much knowledge here and the people are lovely and will lift you up on those flat days - and we all have them! All the very best as you progress along with your treatment. Caroline
Hi PL,
Congrats. It'll be interesting to see what Rx length your doc decides on. Hope the Sx are manageable. Cheers.
Hey PL
Super fantastic news UND is best possible news and something you will always remember. Congrats to you.
matt
That's fantastic news PL! That qualifies for a big WOOT!!! Cutting that treatment time in half is a wonderful thing, congrats buddy!!
I can't thank everyone enough for all of your support!! I have a great medical team (I think!), but am looking forward to the learning from those that know it best!!
Hi Loopy,
Sorry, I have so many subscriptions that I often forget. Medscape is very good, and you don't need to be a Medico to Register. Anyway, I'll try to find another link. Cheers.
Hi Mallani,
This link is to a professional site that needs to be joined. Is there anyway you can copy and paste? Thanks, L
Hi PL,
Sorry about my confusion regarding your Rx drugs. I hadn't come across Pegatron before. Tailoring treatment length for Geno 3's has been the subject of several Trials. Here is a link to a discussion.
http://www.medscape.com/viewarticle/739955
As you can see, about two thirds of Geno 3's obtain an RVR. In the remaining third, about 50% go on to SVR. Factors such as IL28B genotype, body mass, platelet count, initial VL are all prognostic factors. The dose of Ribavirin is very important. The old fixed dose of 800mg/day has been discarded in favour of weight-based dosage. It has been suggested that Ribavirin is the most active of the 2 drugs for this Genotype. This is why there is a problem when anaemia becomes severe and Riba dose reduction is suggested. In Australia, Hb levels are allowed to drop to about 9 (90 over here) unless there is a contra-indication. In the USA, it seems levels below 10 are considered undesirable. I would prefer a drug like procrit to a Riba dose reduction, but I managed to survive on 1,200mg/day of Riba, even though my Hb eventually dropped to 7.2. I'm sure your Doctor will look after you, but it's worthwhile getting as informed as possible. Best of luck- hope your 8 week VL is Undet. Cheers.
Very good luck to you PL, keep us posted on your TX, were all here to help.
Good luck fellow GT3, I hope it goes smoothly through treatment. Time will go fast and this time next year you will be sitting in a good place Hep C free hopefully.
Good luck!
Hi PL,
my fellow GT3 fighter :) (I am also GT3, Stage I) Doubt you are on monotherapy with PegIntron, since it was long time ago while it was only choice. I was also on PegIntron + Ribavirin for 22weeks. Be strong man and have a lots of patience. Seems Riba is working "nicely" if your Hgb is getting really low. That would put a smile on my hepa's face (Riba is working!) :)
Belive me, all side fx are manageable, even serious ones like anemia (low RBC/Hgb) can be sorted with Procrit injections or if there is a need in the end a blood transfusion. Neutropenia/Leukopenia can be sorted with Neupogen shots. Do not let them reduce dose of Riba or Interferon without a fight!
I wish my hepa didn't reduced interferon and that i went with full 24 weeks (or even 36 weeks). I wasn't scared of anything that much (heavy weight loss, extreme neutropenia, headaches, joint pains) except one interferon side fx that damaged my hearing. I had/have persistent high tinnitus, and still haven't recoverd from it (professionally it hurts). I was undetected from week 8 until first week post therapy. I have relapsed soon after. With hepatitis c seems it's pretty important duration of tx and dosage of meds. If your viral load was 500k pre tx, then it must go down to <2500 (2.5 log drop) on the 12th week. Otherwise they might stop with therapy.
I was taking PegIntron shots every Saturday round 18-20h. I would crash round 23-00h before first side fx (headache) kicks in and would sleep it over (sx). For nausea i was taking ginger/lemon/honey juice. Helped a bit. Somewhere round 3rd month i have become a couch slug. Riba started kicking in harder and i lost a lot of weight. Some folks on this forum managed to be active fully during tx. Seems that helps a bit, no matter how hard it seems when you are anemic, some physical activity helps.
If you fail do not despair, new meds (without interferon) are coming, but at least give it a good fight while on this therapy. Your chances are indeed 70%.
There are a lot of folks willing to help you on this forum and some are really knowledgable (Hi Malcolm!) ;)
time to reclaim your liver back!
best
Hello PL
Welcome from me also, I hope your journey these next months go well. The forum can offer you deep insight on everything HCV all you have to do is just ask or use the search engine.
Keep your positive side the best you can as it helps with dealing with all the side effects.
Hopeful of your future results
matt
Thanks for the positive feedback Zlikster. I also appreciate the advice of not allowing them to reduce my dosage due to the anemia, as that was discussed if it continues to drop. On the last visit it was a minor drop from the previous visit, and everything was left as is.
Matt, your kind words are appreciated. I think that this group may become my salvation through the treatment. My family have been extremely supportive, however as we all know, they do not fully understand what we are going through.
Mallani, I'm in Toronto, Canada, and I'm on Merck "Pegetron Clearclick", which is a Ribavirin capsules (I take 600 mg morning and 600 at night), and peginterferon alfa-2b injection once a week. At this point, treatment is 36 weeks, assuming my next results come back showing the virus is non-detectable. If not, then 11 months.
Thanks again!
-- Edited by PL on Monday 11th of November 2013 12:07:17 PM
-- Edited by PL on Monday 11th of November 2013 12:12:45 PM
-- Edited by PL on Monday 11th of November 2013 12:13:02 PM
-- Edited by PL on Monday 11th of November 2013 12:13:19 PM
Hi PL,
Welcome to the Forum. Surely you're not on Peginterferon monotherapy? I hope you're taking Ribavirin as well. Could you please clarify?
Even with a low VL, monotherapy should not be used for Geno 3. It has been used in Geno 2, but if not Undet. by week 4, Riba was added.
You say your Hb is dropping which makes me think you must be on Riba as well. Cheers.
Hi - this is my first time posting so I'm hoping I'm including everything you need to give me some advice. I started treatment with Pegatron on Sept. 6 for what I had hoped was 24 weeks. I have genotype 3 and my liver is a stage 2. I was told I have a 70-80% chance of a cure. My starting viral load was low at just under 500,000. After 4 weeks of treatment it was still detectable (100,000), so I've been told treatment will now be 36 weeks...maybe longer if my 8 week results still show the virus is detectable.
I'm feeling so discouraged that treatment will be longer. I'm also starting to wonder if this treatment really does have the potential to cure (70-80%) or do they say this to keep you going, as I'm reading mixed reviews about a cure. I couldn't imagine doing this for 24 weeks, and now 36, possibly 44...God - shoot me please if I get that news.
My hemoglobin is dropping, which I understand is common. I am so exhausted that walking up stairs is a real chore. That is probably my worst side effect. Second one would be that my stomach bothers me a lot. I was not sleeping at all, but have recently been prescribed an antidepressant which is helping me sleep, yet I'm still exhausted after being up for a couple of hours. I'm working (as I'm in an office). I could go on STD, but think working is keeping my mind off of this treatment so it is best to continue to do so.
Thanks for listening!