Hi all. I found this forum 15 months ago, and at that time i was looking to get into a trial using the new drug from Gilead, and as it turned out i was accepted into a trial using sol/riba 16 weeks. The information and member experiences gleaned from this forum made 16 weeks of riba understandable. I had a lot of questions,got a lot of answers.Kristen I remember reading your threads and noteing that we both were starting treatment at about the same time. The last year was toughf, washing out the riba took me a long time. I was never a anxious person, but post treatment I"m very anxious about everything. However - from what I have seen on this forum and from my study Dr"s and nurse is that UND at 4 week post and 12 week post is very favorable for SVR long term. I"m geting ready for round two , could not have made it through round one without this forum. Thanks all. RC
mallani said
Apr 4, 2015
SuziQ,
You're an inspiration!!!!!
suziq said
Apr 4, 2015
Hi,
My 15 month EOT ultrasound and bloodwork is scheduled for this coming Friday. The trial did a 3 month after SVR follow-up and will pay for follow-up bloodwork every six months for 3 years. I schedule a 6 month ultrasound at the same time to check for HCC because of cirrhosis. I've had blood work recently for a dreaded colonoscopy ( At my age, with my dad and brother both dying of colon cancer, it is routine every few years. Asleep during the procedure, but sure hate the prep. ) Anyway, all the recent blood work was fine. The clinical trial will do the viral load when I go in next week, but I feel sure it is fine. Don't really know what all they check for their records. I'll post results when I get them.
I am disappointed that Merck was taken off the breakthrough status as their trial results were excellent. Don't understand the politics of the pharmacy industry.
My life remains chaotic. Took in a stray golden lab. She turned out to be pregnant so have 6 adorable, very fat puppies. They are just stating to walk, eat a little and explore. Time to neuter the kitties people gave me after I lost too many in my house fire. Grass is growing so fast after a wet Spring. And the clinical trial did NOT stop my aging process. But, all in all, I do have just enough energy to keep up with everything and a little left over to be grateful.
SuziQ
mallani said
Apr 1, 2015
Hi Greg,
Wouldn't hurt to ask for a liver Ultrasound. TFT's are probably a waste of time unless you've got thyroid symptoms.
The full blood count, LFT's etc and VL should be all that you need. Cheers.
beingsassy said
Apr 1, 2015
I will be at my EOT + 1 year in June. I'm right behind you. I'm not really feeling any anxiety about it. A year ago I was in my 2-3 weeks of tx. Wow, a year, that's a long time. I don't see my infectious disease doctor u til August so no lab results til then. But life is good now and im positive that all our results will be good.
Gigi
Greg D said
Apr 1, 2015
Thank you Kristen for your post! Amazing timing really, as I just logged on to see if there were any other things I should have tested aside from the routine 12 month EOT blood work before I head to the drop in clinic today or tomorrow. Thoughts on this would be appreciated. How about a thyroid function test? Is it a BMI value I would be after? Perhaps an MRI to look for a fatty liver I may have developed? You see I have no recollection of what a normal liver feels like lol. I can feel it, and there is no pain but it might be enlarged. Not sure if that's normal.
March 29th 2014 I finished treatment. Wow, seems a long time ago! I have accomplished many things in this past year, not the least of which is SVR+24. I'm not particularly proud of myself as much as I am honoured to be amongst those who feel enough compassion and care to give of themselves so freely and unselfishly. Thank you all.
I like to visit the site quite often actually and even thought I don't have experience with the new treatments I understand that they will be there along with all of you, should another round of treatment be required so...I am not afraid but look forward to the good news I will be receiving in the next week or two.
Cheers!
Tig said
Apr 1, 2015
Hey Scruffy,
I understand the feeling and anxiety that comes with it. We all had it prior to confirmation. Sitting where I am now, I can tell you that relaxing and being confident will reduce the need for antacid! I know that your odds of continued SVR are better than excellent. I think that regardless of the time following our first SVR, each test no matter when, is going to result in a little anxiety. The value of SVR is priceless and nobody knows that better than we do! Share the good news when you get it!
Tig
Scruffy said
Apr 1, 2015
Oh boy 1 year coming up for me also. Well my vl tests haven't been on time. I had my 24 week eot at 32 weeks so my one year will be at 14 months. Am I nervous about it? You bet I am.
Best wishes for all. Lets cheer for lots of SVR's
Cinnamon Girl said
Mar 31, 2015
Hi Kristen, just want to wish you all the best of luck with your EOT + 1 yr result!
I`m quite sure it will be fine but I think all of us who have been at this stage can well understand your anxiety!
A lot of people do tend to drift away once they`ve reached SVR and have recovered enough to move on with their lives, and naturally we`re happy to see that, but we`re always very pleased to hear from our members post tx, and I`m glad you`re still around being helpful and supportive! Very much appreciated!
I hope a few more of your treatment buddies will see your encouraging post!
Do let us know when you get your results, we always look forward to a celebration!!
Tig said
Mar 29, 2015
Hi Kristen,
You're right, I read your post soon after you wrote it! I guess I'm too predictable, lol! I can't help myself, I'm hopelessly but happily connected to this place and everyone here! I'm glad my old stories are still proving helpful. It's nice of you to mention that, thanks...
I remember your journey well. You had such a difficult time but your persistence and appeal writing skill, which has been referred to many times as a go to example, proved successful. Your success was a big morale booster for so many. Your efforts helped many here and we're grateful you're still here helping others!
I know the little voice in the back of your head, saying what if. You should put tape over that and understand that the odds that you aren't SVR + 1 year are so small you wouldn't see them with a magnifying glass! You have this, I'm confident of that. This test is nothing more than proof this is over for you. I expect to hear that just as soon as you hear the good news!
Thank you for your nice message to everyone. As usual you're here giving thanks and giving others hope and confidence for their own cure. I believe that you're right though, many are with us for months or years and we like to believe that when they leave, it's because they have killed their own Dragon and helped many others while they killed their's. We value everyone here and are fortunate to have the involvement of so many, no matter how long they are with us. It's a good thing!
Please stay in touch and let us know your good news when you get it. It's always a joy to celebrate this milestone with each other. We know the value of those three letters, SVR and will always enjoy the party!!
Tig
Enavigo3891 said
Mar 28, 2015
I am 5 weeks and 3 days from my EOT + 1 year lab work. The anxiety has begun already. It also got me thinking that this time last year I was entering week 7 of treatment and it was about this time that the Riba really had a hold on me. I remember marking days off one by one from the calendar (I had printed my own calendars with an 84 day countdown) just convincing myself I was on the downhill side of things and hanging on with all I had.
It also got me thinking about all the people on this site who were on the journey with me. Those who had already torn their calendars down as well as those checking the days off right along side me. There were many of you good people who I recall being right around the same schedule as me which means that you folks are either approaching your year or have already made it. I don't see many 1 yr posts so I'm hoping that because everyone is out enjoying their post HCV lives and not too depressed to come around here!
Hope everyone is doing well!
Oh and Tig (as I know you're reading this) ... I did just re-read your 1 yr post and as usual, it made me feel better about my own anxiety!
Hi all. I found this forum 15 months ago, and at that time i was looking to get into a trial using the new drug from Gilead, and as it turned out i was accepted into a trial using sol/riba 16 weeks. The information and member experiences gleaned from this forum made 16 weeks of riba understandable. I had a lot of questions,got a lot of answers.Kristen I remember reading your threads and noteing that we both were starting treatment at about the same time. The last year was toughf, washing out the riba took me a long time. I was never a anxious person, but post treatment I"m very anxious about everything. However - from what I have seen on this forum and from my study Dr"s and nurse is that UND at 4 week post and 12 week post is very favorable for SVR long term. I"m geting ready for round two , could not have made it through round one without this forum. Thanks all. RC
SuziQ,
You're an inspiration!!!!!
Hi,
My 15 month EOT ultrasound and bloodwork is scheduled for this coming Friday. The trial did a 3 month after SVR follow-up and will pay for follow-up bloodwork every six months for 3 years. I schedule a 6 month ultrasound at the same time to check for HCC because of cirrhosis. I've had blood work recently for a dreaded colonoscopy ( At my age, with my dad and brother both dying of colon cancer, it is routine every few years. Asleep during the procedure, but sure hate the prep. ) Anyway, all the recent blood work was fine. The clinical trial will do the viral load when I go in next week, but I feel sure it is fine. Don't really know what all they check for their records. I'll post results when I get them.
I am disappointed that Merck was taken off the breakthrough status as their trial results were excellent. Don't understand the politics of the pharmacy industry.
My life remains chaotic. Took in a stray golden lab. She turned out to be pregnant so have 6 adorable, very fat puppies. They are just stating to walk, eat a little and explore. Time to neuter the kitties people gave me after I lost too many in my house fire. Grass is growing so fast after a wet Spring. And the clinical trial did NOT stop my aging process. But, all in all, I do have just enough energy to keep up with everything and a little left over to be grateful.
SuziQ
Hi Greg,
Wouldn't hurt to ask for a liver Ultrasound. TFT's are probably a waste of time unless you've got thyroid symptoms.
The full blood count, LFT's etc and VL should be all that you need. Cheers.
I will be at my EOT + 1 year in June. I'm right behind you. I'm not really feeling any anxiety about it. A year ago I was in my 2-3 weeks of tx. Wow, a year, that's a long time. I don't see my infectious disease doctor u til August so no lab results til then. But life is good now and im positive that all our results will be good.
Gigi
Thank you Kristen for your post! Amazing timing really, as I just logged on to see if there were any other things I should have tested aside from the routine 12 month EOT blood work before I head to the drop in clinic today or tomorrow. Thoughts on this would be appreciated. How about a thyroid function test? Is it a BMI value I would be after? Perhaps an MRI to look for a fatty liver I may have developed? You see I have no recollection of what a normal liver feels like lol. I can feel it, and there is no pain but it might be enlarged. Not sure if that's normal.
March 29th 2014 I finished treatment. Wow, seems a long time ago! I have accomplished many things in this past year, not the least of which is SVR+24. I'm not particularly proud of myself as much as I am honoured to be amongst those who feel enough compassion and care to give of themselves so freely and unselfishly. Thank you all.
I like to visit the site quite often actually and even thought I don't have experience with the new treatments I understand that they will be there along with all of you, should another round of treatment be required so...I am not afraid but look forward to the good news I will be receiving in the next week or two.
Cheers!
Hey Scruffy,
I understand the feeling and anxiety that comes with it. We all had it prior to confirmation. Sitting where I am now, I can tell you that relaxing and being confident will reduce the need for antacid! I know that your odds of continued SVR are better than excellent. I think that regardless of the time following our first SVR, each test no matter when, is going to result in a little anxiety. The value of SVR is priceless and nobody knows that better than we do! Share the good news when you get it!
Tig
Oh boy 1 year coming up for me also. Well my vl tests haven't been on time. I had my 24 week eot at 32 weeks so my one year will be at 14 months. Am I nervous about it? You bet I am.
Best wishes for all. Lets cheer for lots of SVR's
Hi Kristen, just want to wish you all the best of luck with your EOT + 1 yr result!
I`m quite sure it will be fine but I think all of us who have been at this stage can well understand your anxiety!
A lot of people do tend to drift away once they`ve reached SVR and have recovered enough to move on with their lives, and naturally we`re happy to see that, but we`re always very pleased to hear from our members post tx, and I`m glad you`re still around being helpful and supportive! Very much appreciated!
I hope a few more of your treatment buddies will see your encouraging post!
Do let us know when you get your results, we always look forward to a celebration!!
Hi Kristen,
You're right, I read your post soon after you wrote it! I guess I'm too predictable, lol! I can't help myself, I'm hopelessly but happily connected to this place and everyone here! I'm glad my old stories are still proving helpful. It's nice of you to mention that, thanks...
I remember your journey well. You had such a difficult time but your persistence and appeal writing skill, which has been referred to many times as a go to example, proved successful. Your success was a big morale booster for so many. Your efforts helped many here and we're grateful you're still here helping others!
I know the little voice in the back of your head, saying what if. You should put tape over that and understand that the odds that you aren't SVR + 1 year are so small you wouldn't see them with a magnifying glass! You have this, I'm confident of that. This test is nothing more than proof this is over for you. I expect to hear that just as soon as you hear the good news!
Thank you for your nice message to everyone. As usual you're here giving thanks and giving others hope and confidence for their own cure. I believe that you're right though, many are with us for months or years and we like to believe that when they leave, it's because they have killed their own Dragon and helped many others while they killed their's. We value everyone here and are fortunate to have the involvement of so many, no matter how long they are with us. It's a good thing!
Please stay in touch and let us know your good news when you get it. It's always a joy to celebrate this milestone with each other. We know the value of those three letters, SVR and will always enjoy the party!!
Tig
I am 5 weeks and 3 days from my EOT + 1 year lab work. The anxiety has begun already. It also got me thinking that this time last year I was entering week 7 of treatment and it was about this time that the Riba really had a hold on me. I remember marking days off one by one from the calendar (I had printed my own calendars with an 84 day countdown) just convincing myself I was on the downhill side of things and hanging on with all I had.
It also got me thinking about all the people on this site who were on the journey with me. Those who had already torn their calendars down as well as those checking the days off right along side me. There were many of you good people who I recall being right around the same schedule as me which means that you folks are either approaching your year or have already made it. I don't see many 1 yr posts so I'm hoping that because everyone is out enjoying their post HCV lives and not too depressed to come around here!
Hope everyone is doing well!
Oh and Tig (as I know you're reading this) ... I did just re-read your 1 yr post and as usual, it made me feel better about my own anxiety!