Aa
It's official - I - AM - ***SVR***!!!!!!
Every time I say that to myself, I start to tear up, my head starts shaking like "wow..this is really over!"
It has taken me awhile to even get around to posting that because I've been waiting for it to sink in. I figured that might take awhile so I figured I better post it finally!! There are some people I wanted to tell individually first but there are so many here who mean so much to me that I realized it would take me too bloody long to get around to posting the actual news!! So here it is ....
Wow. It's SVR!!!
I got the news midday Thursday and I waited all day Friday for my lab results on my CBC so I could post all results in one post and then they told me all they did was a PCR. They've decided that a CBC makes sense however, so no current details on where my hgb, lymphocytes, ANC, CD4, ALT, AST etc is at but I'll get them.
On to the good stuff!!
Physical treatment details - I'm Geno 1, Stage 1 Grade 1, have had HCV for approximately 27 years, started with VL of 2.1 mil:
---------------------------------------------------------------------------------------------------------------------------------------------------
Roche Phase IIb PI Polymerase Inhibitor R1626 trial and was in Arm E which means my treatment regimen was as follows (for those who note these things):
Week 1 - 12:
1000mg R1626 Polymerase Inhibitor daily
1200mg Ribavirin
90mcg Interferon weekly
The trial PI got pulled at the 12 week mark instead of the 24 week mark due to adverse effects on components of the white blood cells, particularly lymphocytes therefore concerns about the impact on the immune system.
Week 13:
180 mcg interferon
1000 ribavirin
Week 14 - 26:
180 mcg interferon weekly
1200 ribavirin daily
Week 27 - 34:
125 mcg interferon weekly
1200 ribavirin
Interferon was reduced for 7 of the 9 weeks due to low level lymphocytes and/or low CD4 count. Antibiotics started as a preventative measure to protect from infection. Doctor wouldn't do neupogen and finally agreed in Week 33, started neupogen and then...
Pulled from treatment at Week 34 of 48 - CD4 count had dropped to 109 which is very low. Trial / treatment stopped across the board for everyone in the R1626 trial at that point in time due to adverse impacts on white blood cell components that directly impact the immune system that were not recovering and worsening even though PI was pulled at 12 weeks or earlier for some. Some had 5 weeks of treatment to go, some longer like me. A number of people had dosage reductions over the course of the trial due to the impact on their white counts.
Antibiotics continued for two months after the trial ended until white counts recovered enough to forgo the antibiotics. I had an operation for a perforated appendix in December and while I'm not sure I'll ever know, I think the appendix issue was brewing inside for awhile due to the inability of my body to respond properly. Having said that, I recovered quickly. :)
---------------------------------------------------------------------------------------------------------------------------------------------------------------
I went UND at the 6 week test - was at 217 at the 4 week mark, so could have gone UND a day later for all I know.
Considering first 12 weeks are critical, interesting that my arm was half the interferon. full riba and 1000mg of the PI, reduced INF for 7 weeks at the Week 27 mark and then pulled off of treatment at Week 34 .. and yet ... here I am ..
SVR
I developed thyroid issues while on treatment and while I was hoping they would go away after treatment ended like they do for some folks, that's not going to happen. We just upped my thyroid meds slightly a little while ago and that's going to be a lifetime thing. I have a nodule on my thyroid, we're testing again in a couple of months to make sure it's not doing nasty things - not talking cancer, more like depleting calcium stores, etc. which we'll deal with. We're on top of it and I like my endocrinologist. Hasn't stopped me from doing anything - I'm pretty active. So I take that pill a day and it doesn't impact my life too much so far.
I have spoken enough in previous posts about the nasty depression that came on me not during treatment but after treatment so I won't go into that again. I am relieved to say that I'm off the AD's I started AFTER treatment, depression is completely gone and I feel better than I ever have in my entire life - physically and mentally.
On that note, I now wonder if the HCV impacted me more over my life than I previously thought. I'm feeling better physically and mentally than I have in my entire life. I used to always have a bit of lethargy over the years physically and I now wonder if that was the HCV. Not sure I'll ever know.
For other people considering or already on a trial, what I want to say to you is to ask questions about the rescue drugs. Find out what rescue drugs are available on the trial, when they will force a dosage reduction due to trial parameters and get ready to be proactive to ask for rescue drugs to proactively keep you out of dosage reduction territory or get you out of it once you're there, particularly during those critical early stages and to keep yourself at 100% of the drugs at 100% of the time as much as possible as long as it's not causing you undue harm. They are not always forthcoming if rescue drugs are available on a trial and sometimes don't like to use them. So you may have to be your own advocate here.
I had one of the best possible resources that anyone going through treatment could have and that is the people on this forum. No matter how tough and resilient that I am and that I imagine myself to be .. I can't imagine having gotten through treatment nearly as successfully without the love, courage, support and knowledge of the people here. There is no way at all to fully express how much that has meant to me. I'm starting to choke up while I write this. There are amazing people on this forum. I wish I could name each of you by name to honour you. I would be afraid in doing so that I'd miss someone or minimize someone's contribution to my life, big or small. I have so many names running through my head right now.
I'm particularly grateful for those people who stepped up with knowledge, encouragement, wisdom love and support in any way big or small when I got the dosage reductions, when I got pulled off treatment and when I got hit with the depression and at so many times throughout treatment. I have been encouraged by the resilience and courage of so many of you as you fought and continue to fight your own battles with treatment and HCV whether successful or not.
Thanks also for the jokes and the laughter. God, you people are funny. Laughter is such *great* medicine.
Thanks to the gurus in this place. I'm not naming them. We all have our own particular guru's here that resonate with us and thank you to those wise people with their depth of knowledge that help us to advocate and manage our treatment in partnership with our medical teams or in spite of them sometimes unfortunately.
My hat off to those people in particular still waiting for your SVR and waiting on better treatments and options.
Wow. I get to say "I am SVR". My sincere and fervent wish is that everybody would get to say that and I hope someday that will be true.
(Nobody really thought my SVR post would be SHORT, did you???? And I edited HALF of it out! :)
Love to all of you.
Trish
It has taken me awhile to even get around to posting that because I've been waiting for it to sink in. I figured that might take awhile so I figured I better post it finally!! There are some people I wanted to tell individually first but there are so many here who mean so much to me that I realized it would take me too bloody long to get around to posting the actual news!! So here it is ....
Wow. It's SVR!!!
I got the news midday Thursday and I waited all day Friday for my lab results on my CBC so I could post all results in one post and then they told me all they did was a PCR. They've decided that a CBC makes sense however, so no current details on where my hgb, lymphocytes, ANC, CD4, ALT, AST etc is at but I'll get them.
On to the good stuff!!
Physical treatment details - I'm Geno 1, Stage 1 Grade 1, have had HCV for approximately 27 years, started with VL of 2.1 mil:
---------------------------------------------------------------------------------------------------------------------------------------------------
Roche Phase IIb PI Polymerase Inhibitor R1626 trial and was in Arm E which means my treatment regimen was as follows (for those who note these things):
Week 1 - 12:
1000mg R1626 Polymerase Inhibitor daily
1200mg Ribavirin
90mcg Interferon weekly
The trial PI got pulled at the 12 week mark instead of the 24 week mark due to adverse effects on components of the white blood cells, particularly lymphocytes therefore concerns about the impact on the immune system.
Week 13:
180 mcg interferon
1000 ribavirin
Week 14 - 26:
180 mcg interferon weekly
1200 ribavirin daily
Week 27 - 34:
125 mcg interferon weekly
1200 ribavirin
Interferon was reduced for 7 of the 9 weeks due to low level lymphocytes and/or low CD4 count. Antibiotics started as a preventative measure to protect from infection. Doctor wouldn't do neupogen and finally agreed in Week 33, started neupogen and then...
Pulled from treatment at Week 34 of 48 - CD4 count had dropped to 109 which is very low. Trial / treatment stopped across the board for everyone in the R1626 trial at that point in time due to adverse impacts on white blood cell components that directly impact the immune system that were not recovering and worsening even though PI was pulled at 12 weeks or earlier for some. Some had 5 weeks of treatment to go, some longer like me. A number of people had dosage reductions over the course of the trial due to the impact on their white counts.
Antibiotics continued for two months after the trial ended until white counts recovered enough to forgo the antibiotics. I had an operation for a perforated appendix in December and while I'm not sure I'll ever know, I think the appendix issue was brewing inside for awhile due to the inability of my body to respond properly. Having said that, I recovered quickly. :)
---------------------------------------------------------------------------------------------------------------------------------------------------------------
I went UND at the 6 week test - was at 217 at the 4 week mark, so could have gone UND a day later for all I know.
Considering first 12 weeks are critical, interesting that my arm was half the interferon. full riba and 1000mg of the PI, reduced INF for 7 weeks at the Week 27 mark and then pulled off of treatment at Week 34 .. and yet ... here I am ..
SVR
I developed thyroid issues while on treatment and while I was hoping they would go away after treatment ended like they do for some folks, that's not going to happen. We just upped my thyroid meds slightly a little while ago and that's going to be a lifetime thing. I have a nodule on my thyroid, we're testing again in a couple of months to make sure it's not doing nasty things - not talking cancer, more like depleting calcium stores, etc. which we'll deal with. We're on top of it and I like my endocrinologist. Hasn't stopped me from doing anything - I'm pretty active. So I take that pill a day and it doesn't impact my life too much so far.
I have spoken enough in previous posts about the nasty depression that came on me not during treatment but after treatment so I won't go into that again. I am relieved to say that I'm off the AD's I started AFTER treatment, depression is completely gone and I feel better than I ever have in my entire life - physically and mentally.
On that note, I now wonder if the HCV impacted me more over my life than I previously thought. I'm feeling better physically and mentally than I have in my entire life. I used to always have a bit of lethargy over the years physically and I now wonder if that was the HCV. Not sure I'll ever know.
For other people considering or already on a trial, what I want to say to you is to ask questions about the rescue drugs. Find out what rescue drugs are available on the trial, when they will force a dosage reduction due to trial parameters and get ready to be proactive to ask for rescue drugs to proactively keep you out of dosage reduction territory or get you out of it once you're there, particularly during those critical early stages and to keep yourself at 100% of the drugs at 100% of the time as much as possible as long as it's not causing you undue harm. They are not always forthcoming if rescue drugs are available on a trial and sometimes don't like to use them. So you may have to be your own advocate here.
I had one of the best possible resources that anyone going through treatment could have and that is the people on this forum. No matter how tough and resilient that I am and that I imagine myself to be .. I can't imagine having gotten through treatment nearly as successfully without the love, courage, support and knowledge of the people here. There is no way at all to fully express how much that has meant to me. I'm starting to choke up while I write this. There are amazing people on this forum. I wish I could name each of you by name to honour you. I would be afraid in doing so that I'd miss someone or minimize someone's contribution to my life, big or small. I have so many names running through my head right now.
I'm particularly grateful for those people who stepped up with knowledge, encouragement, wisdom love and support in any way big or small when I got the dosage reductions, when I got pulled off treatment and when I got hit with the depression and at so many times throughout treatment. I have been encouraged by the resilience and courage of so many of you as you fought and continue to fight your own battles with treatment and HCV whether successful or not.
Thanks also for the jokes and the laughter. God, you people are funny. Laughter is such *great* medicine.
Thanks to the gurus in this place. I'm not naming them. We all have our own particular guru's here that resonate with us and thank you to those wise people with their depth of knowledge that help us to advocate and manage our treatment in partnership with our medical teams or in spite of them sometimes unfortunately.
My hat off to those people in particular still waiting for your SVR and waiting on better treatments and options.
Wow. I get to say "I am SVR". My sincere and fervent wish is that everybody would get to say that and I hope someday that will be true.
(Nobody really thought my SVR post would be SHORT, did you???? And I edited HALF of it out! :)
Love to all of you.
Trish
Congratulations Trish!!!!
That is great news. I know how hard it has been and how disappointed you must of been when they pulled the plug on the trial. After all the heartache now you have your reward. I am so happpy for you. I also want to thank you for participating in this trail. It is a tough decision to make to participate in a trial or not. The information gained from them is invaluable.
Good luck and congrats again.
That is great news. I know how hard it has been and how disappointed you must of been when they pulled the plug on the trial. After all the heartache now you have your reward. I am so happpy for you. I also want to thank you for participating in this trail. It is a tough decision to make to participate in a trial or not. The information gained from them is invaluable.
Good luck and congrats again.
Ditto on the tears. I love the idea of an SVR card!!!
All this happiness and success in the air puts me in the mood for a .......................
((((((((((((((GROUP HUG)))))))))))))))))
Love you guys!
All this happiness and success in the air puts me in the mood for a .......................
((((((((((((((GROUP HUG)))))))))))))))))
Love you guys!
Beautiful Trish, you actually got me in tears with your few words right now.
Love, happiness and good health are such an amazing 'thing'
Hugs, Marcia
Love, happiness and good health are such an amazing 'thing'
Hugs, Marcia
Thank you to everybody for your lovely and meaningful words. I've captured them all in a Word document and have self-indulgently called it "My SVR Card" and I keep adding to it. For a person who generally says little with alot of words, well, words fail me right now while I read all of yours. Could not have gotten to SVR nearly so well without all of you and I'm blessed that you''ve all come out to celebrate with me. I'll be rooting for you all as well and I look forward to the SVR parties to come. For those that have had a detour come up on the way to your SVR party ... hang in there and keep up hope. I will for you also.
Trish
Trish
Yippie-ki-yay!!!
I know exactly how you feel Trish. The tears too. It's all so mixed up and complicated. Me? Why me? It's a mistake. Why not someone else? And then finally, one day you just wake up and know it's real and gracefully accept the blessing. Godspeed Trish.
My best,
LS
I know exactly how you feel Trish. The tears too. It's all so mixed up and complicated. Me? Why me? It's a mistake. Why not someone else? And then finally, one day you just wake up and know it's real and gracefully accept the blessing. Godspeed Trish.
My best,
LS
Tears in my eyes; I know I'm only one of many who hoped and prayed and worried when you came off the tx, disappeared, went to hospital, reappeared. Each time you posted, I hoped more and more that SVR would be yours, and it broke my heart to witness all that you had to emotionally and physically go through. I'm only one of 100's year that have been truly touched by your story, and your courage.
Congratulations - the best news is that you're feeling better than you have for years!!! Now, go and grab some life back!!!
Congratulations - the best news is that you're feeling better than you have for years!!! Now, go and grab some life back!!!
what a ride, eh? many, many congratulations, and thanks for all you've contributed here
>And I edited HALF of it out!
cut out all the good parts, no doubt.
You should post your CD4 stats when they come in.. hopefully all will bounce back. All just in time for some good spring riding..enjoy!
>And I edited HALF of it out!
cut out all the good parts, no doubt.
You should post your CD4 stats when they come in.. hopefully all will bounce back. All just in time for some good spring riding..enjoy!
Trish,
BEST NEWS EVER!!!!
You so deserved to hear this wonderful news!
Congrats to you!!
peace
rita
BEST NEWS EVER!!!!
You so deserved to hear this wonderful news!
Congrats to you!!
peace
rita
This is the best news I've heard for a while, congratulations Trish my fellow 'started the same day, same trial, similar dose' hepper. I will ring you soon to say G'day and chat, hope you still rise early. I am so so pleased for you. Lots of hugs. PS. 2 shots left for me. Talk soon Emi
Congratulations!!!!!!!!!!! I know how you feel with the tears, when they called me at work I had to walk down the road cause I couldn’t stop the tears and didn’t want to try and explain them!!!!!!!!!!!
Trish.... congrats !!!
SVR
Let it sink in fully and enjoy the unburdened feeling of relief...
apache
SVR
Let it sink in fully and enjoy the unburdened feeling of relief...
apache
Great news. I remember well when you first started and all the battles that followed.
Congratulations!
Eric
Congratulations!
Eric
Hey Trish!!
Fan-bloody-tastic news!!! I'm all teary with happiness for you!! Wishing you the most fabulous Hep C free life!!!
Epi xxxx
Fan-bloody-tastic news!!! I'm all teary with happiness for you!! Wishing you the most fabulous Hep C free life!!!
Epi xxxx
Fantastic news! Always great for those of us still in the battle to hear about SVRs! Enjoy!!!
smaug
smaug
Aw, Trish, this is terrific new! I’m so happy for you; and I also want to thank you for the trial work you’ve done; although it doesn’t look as though the R1626 will go forward, it’s a step in the right direction for all of us. Thanks also for your participation in this group; you’ve given so much to so many here.
Do stay in touch, and I hope all goes well for you in the future—
Bill
Do stay in touch, and I hope all goes well for you in the future—
Bill
I'm so thrilled for you. THat is the best news in a long while. What a great fight you put up, and worth every minute in the end. Dancing in the streets here in your honor - in my red shoes, of course!
Congratulations, you really deserve it.
jd
Congratulations, you really deserve it.
jd
Just saw this now.
Congratulations Trish. I never doubted you would SVR but that's easy for me to say :)
Very pleased and proud of you. You fought hard my friend and you were victorious. Have a wonderful life Trish.
Trin
Congratulations Trish. I never doubted you would SVR but that's easy for me to say :)
Very pleased and proud of you. You fought hard my friend and you were victorious. Have a wonderful life Trish.
Trin
Congratulations!!!! Such great news....I'm crying with happiness....such a hard won battle for you. I am so very glad to hear you are feeling better.
You are my pioneer. I have been following you since the beginning. With all the ups and downs of your trial, you were always there for me when I needed advice with mine.
Thanks for reminding us what it is we are all striving for. Thanks for being in the trial. And thanks for reminding us that we can be our best advocates.
I love success stories and yours certainly had some twists and turns. And you did it!!!!! All with grace and grit and determination.
Sending you (((((HUGS))))), happy dances and Howard Dean girly screams!!!! Wishing you the best in your new hep free life.
Isobella
You are my pioneer. I have been following you since the beginning. With all the ups and downs of your trial, you were always there for me when I needed advice with mine.
Thanks for reminding us what it is we are all striving for. Thanks for being in the trial. And thanks for reminding us that we can be our best advocates.
I love success stories and yours certainly had some twists and turns. And you did it!!!!! All with grace and grit and determination.
Sending you (((((HUGS))))), happy dances and Howard Dean girly screams!!!! Wishing you the best in your new hep free life.
Isobella
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