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UND and EOT numbers for triple Tx
I am 7 days post EOT. 12 weeks Triple Tx Sovladi, Pegasys, Ribavirin.
Just got back from my EOT meeting with my doctor today—and I am also UND!
For those who like stats and numbers:
The HCV RNA QN test using COBAS® TagMan® HCV, v.2.0 (limit of detection (LOD) and LLOQ is 15 IU/mL)
HCV Not Detected.
ALT is 41, AST is 50.
HGB 10.3 / Platelets 139 / WBC 2.4
I went walking at the zoo for the first time in 12 weeks today, and wasn't exhausted at the end. My mental energy is improving all the time, physical energy is improving slowly, really just the last 2 days. Appetite is returning too.
My skin is really giving me a lot of problems this week it seems hyper sensitive. Like it really hasn't healed at all in 3 months. But that should subside as the drugs exit my body, and my blood levels even out. Will go to dermatology if it drives me crazy. Have a follow-up with opthamology later this month too. Will have a 1, 3 and 6 month follow up blood and viral load tests. My doctor will be retiring in 2 months, but will turn me over to a new doc, whom I will meet, next month for follow-up consults, and for yearly monitoring.
I do want to let people know that the treatment really wasn't that bad, (though it was interesting that my doctor was surprised when my husband and I were telling him that each and every time I got the Interferon shot, it would just knock me out for a day or two, not just the first time or two, but every shot).
He said that the Navy was now starting off-label with Sovaldi and Simeprevir for the more seriously ill patients. I thanked both him and his nurse for believing in me that I could do this.
Thank you fellow dragon slayers on this website for you support. You were more help than you will ever know. Knowledge really is power!
Sandi
Just got back from my EOT meeting with my doctor today—and I am also UND!
For those who like stats and numbers:
The HCV RNA QN test using COBAS® TagMan® HCV, v.2.0 (limit of detection (LOD) and LLOQ is 15 IU/mL)
HCV Not Detected.
ALT is 41, AST is 50.
HGB 10.3 / Platelets 139 / WBC 2.4
I went walking at the zoo for the first time in 12 weeks today, and wasn't exhausted at the end. My mental energy is improving all the time, physical energy is improving slowly, really just the last 2 days. Appetite is returning too.
My skin is really giving me a lot of problems this week it seems hyper sensitive. Like it really hasn't healed at all in 3 months. But that should subside as the drugs exit my body, and my blood levels even out. Will go to dermatology if it drives me crazy. Have a follow-up with opthamology later this month too. Will have a 1, 3 and 6 month follow up blood and viral load tests. My doctor will be retiring in 2 months, but will turn me over to a new doc, whom I will meet, next month for follow-up consults, and for yearly monitoring.
I do want to let people know that the treatment really wasn't that bad, (though it was interesting that my doctor was surprised when my husband and I were telling him that each and every time I got the Interferon shot, it would just knock me out for a day or two, not just the first time or two, but every shot).
He said that the Navy was now starting off-label with Sovaldi and Simeprevir for the more seriously ill patients. I thanked both him and his nurse for believing in me that I could do this.
Thank you fellow dragon slayers on this website for you support. You were more help than you will ever know. Knowledge really is power!
Sandi
Hi Jo,
Yep, you would think that a Navy Hospital would be able to do that test, but they send it out, I don't know where, maybe another Navy facility. I am not as anxious about it now that the blood has been drawn. Someone from the Gastro Dept did call me today to let me know it takes 10-14 days, and I told them yes I know, but was anxious to know the results.
Life is busy. I was panicking because I was having some minor twinges below my rib cage, but I think my gallbladder (w stones) was acting up a bit, I was on a brownie binge in my anxiety that my body did not like. So it is ok now. I always think the worst! If I am doing healthy stuff I feel so much better. Have started drinking the ACV drink (2 tsp apple cider vinegar with 8 oz apple juice) before dinner, and it seems to be helping whatever was going on with me. It is suppose to help calm the gallbladder. I will text my nurse starting next Wednesday the 6th about the results. I want to go in and get a printout of the test too for my files.
Like everyone keeps pointing out that there are new better meds on the horizon if this doesn't work for us, we are a bigger pool of test subjects it seems like. I hope that my genotype will be one that is also curable with the new meds too.
Yep, you would think that a Navy Hospital would be able to do that test, but they send it out, I don't know where, maybe another Navy facility. I am not as anxious about it now that the blood has been drawn. Someone from the Gastro Dept did call me today to let me know it takes 10-14 days, and I told them yes I know, but was anxious to know the results.
Life is busy. I was panicking because I was having some minor twinges below my rib cage, but I think my gallbladder (w stones) was acting up a bit, I was on a brownie binge in my anxiety that my body did not like. So it is ok now. I always think the worst! If I am doing healthy stuff I feel so much better. Have started drinking the ACV drink (2 tsp apple cider vinegar with 8 oz apple juice) before dinner, and it seems to be helping whatever was going on with me. It is suppose to help calm the gallbladder. I will text my nurse starting next Wednesday the 6th about the results. I want to go in and get a printout of the test too for my files.
Like everyone keeps pointing out that there are new better meds on the horizon if this doesn't work for us, we are a bigger pool of test subjects it seems like. I hope that my genotype will be one that is also curable with the new meds too.
Hi Jo,
Sounds like you and I are on about the same time table. My last day of tx is 8/7. Too tired to figure out how many days that is! lol!
I feel the same way. Work, exercise and try to do the day to day, but feeling so worn. HgB 10.9, Hematocrit 31 end of week 8. I could tell I was dropping and wonder where I'm at now. Had. CBC on the 25th. No call from the MD, so I'm carrying on. I don't want to reduce anything at this point!
Take care!
Sounds like you and I are on about the same time table. My last day of tx is 8/7. Too tired to figure out how many days that is! lol!
I feel the same way. Work, exercise and try to do the day to day, but feeling so worn. HgB 10.9, Hematocrit 31 end of week 8. I could tell I was dropping and wonder where I'm at now. Had. CBC on the 25th. No call from the MD, so I'm carrying on. I don't want to reduce anything at this point!
Take care!
Thank-You. Day 66. Tired, but I am able to put in my hours at work and exercise. Although my Hgb has come up a bit (its still a couple of points below baseline. I am simply tired and am not able to fully work and exercise like I normally could. That and intermittent traveling mouth sore hot spots (that is the best way to explain them) are the only sides I have. Not a big deal really...totally tolerable. I can't believe you have to wait till Aug. 7 or 8th. My viral load comes back 1-7 days post draw (depends when the hospital runs the in-house viral loads- If I have a draw Wed am...and they run them later that day...I get my results the next day. If they run bloods Wed pm and I get a blood draw on Thursday...I get the results the following Thursday. Waiting can drive you crazy. Good Luck! Soon...I will be done with treatment...and soon...I hope....you will get good news...Jo
Thanks Sandi, Mary and everyone on this forum. I needed to hear a bit of encouragement today.
I am pressing on and very grateful to have so many people who understand the journey. We are all in this together!
Keeping calms and slaying the dragon!
Sue
I am pressing on and very grateful to have so many people who understand the journey. We are all in this together!
Keeping calms and slaying the dragon!
Sue
I'm soo excited for both of you, both so close, an going through this treatment pretty close in times, I just know you two are so thankful for each other an everyone else that helps in this forum. I've got a lot of encouragement from so many people here an we're so blessed to have this forum. Hector has been a Godsend not just to me, but everyone going through this fight. I wish you both a great Hep C free life. Not if but WHEN you get your results of SVR , please don't be strangers in the forum...take care. Mary
Hey Jo, so you are just over 9 weeks into Tx, how are you feeling? Your Tx end is in sight also, only 3 weeks to go too. Then the great vigil for 12 and 24 weeks begins. Best wishes to you too. Sandi
Hi Sue, hang in there you are almost done. I found the last 2 weeks the hardest. I was the most tired, and felt saturated by the drugs, kept telling people I felt toxic by then. The good news is the Tx end is in your sights. Plan on taking it easy after you are done. I started feeling better mentally right away, and could sleep better right away too. But the physical stuff takes a while to recover from.
When I was conveying to a friend that the closer it seems that we come to milestones....the clock seems to slow down as folks wait and count days till the end of each milestone... She stated that it sounded like pregnancy...where the first 8 mos fly by and the last 2 mos take forever... I told her that sounds about right... You have come so far...and now you are waiting for THE results... Distraction...is essential... I know it is for me...I can drive myself crazy at times (grin)... Best Wishes...Jo
Here's hoping and praying your UND status continues! I think all Hep C warriors deserve medals for courage and bravery.
13 more days of Sovaldi/RIBA/Interferon for me. Feeling okay, but tired.
Please know we are all waiting with you and hope to celebrate your SVR with you soon!
13 more days of Sovaldi/RIBA/Interferon for me. Feeling okay, but tired.
Please know we are all waiting with you and hope to celebrate your SVR with you soon!
Went in for my 12 week EOT viral load test this week. Should get results on August 7 or 8. Very nervous, hope I am still UND. Have been power walking at the zoo 3 days a week, doing hard yard work. Have a sweet tooth. Skin has recovered, can be in the sun just fine now. Bruising is not as bad, but is not normal still. Hair is still falling out, and doesn't seem to growing hardly at all. People tell ,e my color looks better. Stopped the vitamins, felt bloated from them. Feel sometimes maybe my gallbladder, but it might be from the yard work, sawing and pulling stuff. Am anxious about my status, am having a hard time being "happy." Taking one day at a time. Making lunch dates and working a lot. What will my future hold for me?
Hi Sister,
Good luck on your journey, I am anxiously awaiting my 12 week EOT viral load test. I am 10 weeks this week. It is hard to wait.It isn't over really until 24 weeks EOT final test.
Good luck on your journey, I am anxiously awaiting my 12 week EOT viral load test. I am 10 weeks this week. It is hard to wait.It isn't over really until 24 weeks EOT final test.
Begining this journey and new here. Read your post...Very encouraging! Thank you for sharing!
6 1/2 weeks EOT, feeling great! Got outside this weekend and hacked away at the ivy, skin not reactive to the sun, yay! Vitamins seem to be helping too. Went into the office and worked 1/2 a day there, there first time since start of Tx, felt good. Hair doesnt' seem to be falling out so much. Thank you Lord for you blessings and angels. Thank you to my forum angels!
6 weeks EOT. I am having a hard time being "normal" again. I find I am not tolerant, have no patience, am emotional. Am able to be out in the sun, appetite is getting better, sleeping better now too. Hair is still falling out and getting thinner, bought a stylish hat to wear into work. Have marked my planner for my EOT weeks, am waiting for that 12 week viral load test. Anyone else EOT feel out of step still too? Thanks in advance for letting me gripe.
I wish I could change my handle, but it doesn't look like I can. I want to be available for future genotype 4 people, to let them know we may be a little exotic but our type is curable! I can't tell you how great I feel at 4 weeks EOT! Just a couple lingering scabs and bruises, but my energy is so great! I am so relieved! I can even tolerate the sun (though I am not pushing that yet).
Wow. Your #s look fantastic! So far that 4 week EOT was a little stressful. Treatment after all, was a breeze when we hear UND. Keep smilin as everyday we get closer. June 20th. Scan time..... So very happy for you. ...Kim
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I'm not surprised to hear of you reactions to the interferon shots. My past treatments all involved some kind of interferon, and I took it on Fridays knowing I would be out of commission all weekend!
-Mark