Aa
Happpy Thanksgiving and words of encouragement
To all,
I have not been on this site in quite some time. I was a regular here for several years. I want to wish everyone a very Happy Thanksgiving. I know for those who are doing treatment this is a difficult time and for those recently diagnosed this is a scary time. I will tell all of you that it will get better and offer you some words of encouragement.
To give those who do not know me here is some background. I was geno 1A with a very high viral load like many of you here. I was stage 2 grade 2 on my liver biopsy's and had been infected for anywhere from 20 to 30 years. I was a regular here and had done a lot of research on HCV to try and learn what exactly i was dealing with. I used to try and answer peoples questions when I could. This site was a great place to discuss this disease with others who are going through it as well. There were and I am guessing still are many here who are very knowledgeable. I made many friends and we all helped each other through tough times.
I had decided that I was not going to treat with the Standard of Care (SOC), which is pegalated interferon and ribavarin, for those who are new and do not yet know what I am referring to. For geno 1's the success rate for achieving a sustained viral response (SVR) aka cured was pretty low and the side effects from the drugs were harsh. I studied about all the new drugs that were in trials and read everything I could get my hands on. I was fortunate that I work for a major University and had access to every scientific paper out there. I did not understand everything but enough to where I could make educated decisions for myself. I learned early that many doctors were not experts in this and they tried to get me to treat with conventional drugs when they did not understand this disease or these drugs themselves. I came very close to participating in several trials including telaprevir and Boceprevir but decided against it due to the side profiles or just some things that I was not comfortable with with the drugs. Some of the trials I rejected were canceled for the very reasons I was concerned.
I ended up participating in a trial for a drug in the early stages of development called R7128. It is made by a company called Pharmasett. my leg of the trial was run out out of the University of Pennsylvania with Dr. Rajander Reddy (who is excellent). The trail lasted for 48 weeks. you were given a combination of the R7128 (or placebo) with Peg and Riba for the first 8 weeks. you then continued with just Peg and Riba for the next 40 weeks. To make a long story short I cleared at week 4 and have stayed clear every since. The R7128 had no side effects but the peg and riba did. They were horrible. I had all the usual sides you read about; rage, insomnia among the worst. I ended up having to take several other drugs to counteract the side effects from the peg and riba. I had antidepressants (lexapro) and Xanax for the rage and depression, Tricor for cholesterol (it shot up to over 1000), ambien for sleep. It was not a picnic by any stretch of the imagination. It was also very difficult on my family as I was an a$$h0le to the nth degree from these drugs. I am lucky as my family is the best. They supported me and we all knew going into this what it might be like. It was everything I thought it would be and then some. Not everyone goes through it but I certainly did. They stuck with me through it all. They even gave me a nickname "the Choad" A choad is slang for a male member that is as short as it is fat. My daughter said it was because I was short tempered, had a fat attitude, and was being a D!ck. LOL we still laugh about it to this day.
I am not mentioning these things to scare anyone but just the contrary. If I had to do it all over again I would. I am now over 2 and a half years out from my treatment. I am still clear and I have my life back. For a while a felt a little run down as the drugs worked their way out of my system. After about a year or so I had some odd sensations and aches and pains. I even began to think that some of the things I was feeling had to do with my treatment. I read a lot about post treatment side effects and wondered if I was suffering from them. I had many tests to check my thyroid, diabetes, heart etc. everything came back OK.
I finally decided to clean up my diet and get in shape. I have to honestly say that I have never felt better in my life. I have energy, my head is clear, many of my aches and pains have gone away. I honestly and truly feel good. I did not take some magic diet or techniques. I just ate good food. Whole grains, lots of fruit and veggies, a little less meat and some good old fashioned exercise. I have dropped 20 lbs. and plan to slowly get back to the weight I was when I got married. I am even contemplating trying for a 5k in the spring.
So as I come into this Thanksgiving day I have a lot to be thankful for. For anyone who is currently treating or contemplating treatment I want you to know from someone who has been there that this is not a death sentence. It will be difficult and the road may be bumpy along the way but I promise you that here is light at the end of the tunnel. It really does get better. Stay the course, keep you heads up, and forge ahead. Do your homework, read everything you can and educate yourselves. Knowledge is power! May God bless all of you as you enter these holidays and continue on your journey. Here is to hoping all of you achieve a SVR and get your lives back!
I used to say I would always come here but the fact is I do not get back here near enough. That is actually a good thing because I have my life back and I am honestly so busy I don't have time to get here. Use this site and ask questions to the people who do come here regularly. Lean on each other for support. I may not be here in person but this site and wonderful people here are truly in my mind and my heart always. Sorry for the long winded post.
I have not been on this site in quite some time. I was a regular here for several years. I want to wish everyone a very Happy Thanksgiving. I know for those who are doing treatment this is a difficult time and for those recently diagnosed this is a scary time. I will tell all of you that it will get better and offer you some words of encouragement.
To give those who do not know me here is some background. I was geno 1A with a very high viral load like many of you here. I was stage 2 grade 2 on my liver biopsy's and had been infected for anywhere from 20 to 30 years. I was a regular here and had done a lot of research on HCV to try and learn what exactly i was dealing with. I used to try and answer peoples questions when I could. This site was a great place to discuss this disease with others who are going through it as well. There were and I am guessing still are many here who are very knowledgeable. I made many friends and we all helped each other through tough times.
I had decided that I was not going to treat with the Standard of Care (SOC), which is pegalated interferon and ribavarin, for those who are new and do not yet know what I am referring to. For geno 1's the success rate for achieving a sustained viral response (SVR) aka cured was pretty low and the side effects from the drugs were harsh. I studied about all the new drugs that were in trials and read everything I could get my hands on. I was fortunate that I work for a major University and had access to every scientific paper out there. I did not understand everything but enough to where I could make educated decisions for myself. I learned early that many doctors were not experts in this and they tried to get me to treat with conventional drugs when they did not understand this disease or these drugs themselves. I came very close to participating in several trials including telaprevir and Boceprevir but decided against it due to the side profiles or just some things that I was not comfortable with with the drugs. Some of the trials I rejected were canceled for the very reasons I was concerned.
I ended up participating in a trial for a drug in the early stages of development called R7128. It is made by a company called Pharmasett. my leg of the trial was run out out of the University of Pennsylvania with Dr. Rajander Reddy (who is excellent). The trail lasted for 48 weeks. you were given a combination of the R7128 (or placebo) with Peg and Riba for the first 8 weeks. you then continued with just Peg and Riba for the next 40 weeks. To make a long story short I cleared at week 4 and have stayed clear every since. The R7128 had no side effects but the peg and riba did. They were horrible. I had all the usual sides you read about; rage, insomnia among the worst. I ended up having to take several other drugs to counteract the side effects from the peg and riba. I had antidepressants (lexapro) and Xanax for the rage and depression, Tricor for cholesterol (it shot up to over 1000), ambien for sleep. It was not a picnic by any stretch of the imagination. It was also very difficult on my family as I was an a$$h0le to the nth degree from these drugs. I am lucky as my family is the best. They supported me and we all knew going into this what it might be like. It was everything I thought it would be and then some. Not everyone goes through it but I certainly did. They stuck with me through it all. They even gave me a nickname "the Choad" A choad is slang for a male member that is as short as it is fat. My daughter said it was because I was short tempered, had a fat attitude, and was being a D!ck. LOL we still laugh about it to this day.
I am not mentioning these things to scare anyone but just the contrary. If I had to do it all over again I would. I am now over 2 and a half years out from my treatment. I am still clear and I have my life back. For a while a felt a little run down as the drugs worked their way out of my system. After about a year or so I had some odd sensations and aches and pains. I even began to think that some of the things I was feeling had to do with my treatment. I read a lot about post treatment side effects and wondered if I was suffering from them. I had many tests to check my thyroid, diabetes, heart etc. everything came back OK.
I finally decided to clean up my diet and get in shape. I have to honestly say that I have never felt better in my life. I have energy, my head is clear, many of my aches and pains have gone away. I honestly and truly feel good. I did not take some magic diet or techniques. I just ate good food. Whole grains, lots of fruit and veggies, a little less meat and some good old fashioned exercise. I have dropped 20 lbs. and plan to slowly get back to the weight I was when I got married. I am even contemplating trying for a 5k in the spring.
So as I come into this Thanksgiving day I have a lot to be thankful for. For anyone who is currently treating or contemplating treatment I want you to know from someone who has been there that this is not a death sentence. It will be difficult and the road may be bumpy along the way but I promise you that here is light at the end of the tunnel. It really does get better. Stay the course, keep you heads up, and forge ahead. Do your homework, read everything you can and educate yourselves. Knowledge is power! May God bless all of you as you enter these holidays and continue on your journey. Here is to hoping all of you achieve a SVR and get your lives back!
I used to say I would always come here but the fact is I do not get back here near enough. That is actually a good thing because I have my life back and I am honestly so busy I don't have time to get here. Use this site and ask questions to the people who do come here regularly. Lean on each other for support. I may not be here in person but this site and wonderful people here are truly in my mind and my heart always. Sorry for the long winded post.
Thank you for posting. It is so good to read post treatment success stories. Congratulations and may you continue to live a healthy and happy life.
Dragon Slayer, Thank you for sharing. It means so much to those of us finding out, indecisive about it, starting out, in the middle of it, starting over, struggling to get to the end of treatment, waitng, knowing "its not just me" I could go on and on. You have lifted many hearts today! We are very greatful to you and happy for you!
Lydia
Lydia
Thank you DS45
That was a very positive and inspiring post for someone venturing out on TX such as myself
Question u prob don't know your IL 28 phenotype since u did TX a while back
Or maybe u do cause u where in clinical trial
If you do would u mind sharing it
I am TT and perplexed on TX options with it
Thank u!
That was a very positive and inspiring post for someone venturing out on TX such as myself
Question u prob don't know your IL 28 phenotype since u did TX a while back
Or maybe u do cause u where in clinical trial
If you do would u mind sharing it
I am TT and perplexed on TX options with it
Thank u!
Thank you sooo much for sharing your experience and success as it truly gives such great encouragement and hope. I am soo happy to hear that you slayed that dragon once and for all and are living such a healthy and happy life today! Many thanks for posting.
I remember you. I have been reading this forum for many years trying to make a decision about tx.when the new drugs came out I went for it. Tonight is shot ten, cleared at 4 weeks and 8 weeks so only have to tx 28 weeks total. Geno 1a. Thanks for all your support these past years, go and enjoy life....mo
What a breathe of fresh air. Thanks so much for posting your heartfelt story. Ive been on here for almost 12 weeks now and it has been a while since I have seen you post. I am on week 11 w/Inc and looking very much to achieving SVR. Thanks so much for the sharing the good news and your new life. I am so happy for you. Your story is identical to mine except for me starting treatment with INC.
My Self , I am looking so forward to clearing and moving on with my life, with the upmost passion. God Bless All of Us Slayers.
My Self , I am looking so forward to clearing and moving on with my life, with the upmost passion. God Bless All of Us Slayers.
Very touching and warm words of encouragement , I am a newbie to this disease I also am Canadian , and will be starting tx in new year , my damage is still undetermined ,no biopsy yet , all the others though , Based on previous tests hep doc says mild fibrosis. I hope he is right , Very scared if cirrossis. I also am all alone going though this and need my job. I give thanks for each and every day I am here , and hope my fate does not turn dark. Happy thanksgiving, so glad you beat the dragon. All the best to you.
Your post is a breath of fresh air! Congratulations on your SVR and thanks for sharing your experience and success with folks. 'The Choad' comment made me laugh as well... you obviously kept your sense of humor through treatment!
Great that you are enjoying life and have such a wonderful ending to share with us all. You lived up to your name and then some! Great to see you post again, congratulations, and be well. ~eureka
Great that you are enjoying life and have such a wonderful ending to share with us all. You lived up to your name and then some! Great to see you post again, congratulations, and be well. ~eureka
I remember you. So glad to hear you've won the battle and are doing well.
Happy Thanksgiving !
Happy Thanksgiving !
i love your name because you did just that. you slayed the dragon!! congrats on your new found health. you're an inspiration to all of us that are in treatment. thank you for your post. happy thanksgiving and best wishes. belle
Welcome back. I am happy to hear you are doing so well. Thank you for sharing your story and providing some inspiration to all of us today. I hope you have a wonderful day and i hope you will continue to drop in now and then to inspire those on the forum in the future.
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