Thanks for accepting my invite!I love to hear others stories & how tx worked or didn't.I am still waiting on my viral load. The CBC every 2 wks are always good,but they didn't get enough blood to get a "true" viral load.So I go back in next week although I should hear about my blood work this week sometime. I know they got enough blood to get a good "read" on the viral load this time, so fingers crossed.I started Victrelis, this will be the start of my 3rd week on it (you start Victrelis 4 weeks after you start peg-interferon/ribavirin)I feel all alone.I am so happy to hear I am not alone even though I already knew that, but still my brain was playing tricks on me.Nice to "meet" you & happy to hear you were able to beat it after the 2nd round!!! That's giving me hope, thank you for that :)
Thank You, I'm hanging in there. I don't know who is happier with 2VL came back undetected me or the staff at my clinic. To be UND is like music to my ears. I didn't hear that with the other txs I'd clear and then 3 mos latter the Virus was back. I know this is the one. I feel it in my heart♥. I love my hepper family, I don't know what I would do without all of you.
IU have Bronchitis on top of everything. I feel like I'm dying.
Just a quick note to say hi! There are no stupid questions only stupid people and you are not one of them! Click on your current profile pic, it will take you to your profile page. Change the option to upload a new profile pic in the three options, its the last one-it should pop up your pictures (windows) and you pick the one you want from there. Click on the picture then click on OPEN-then be sure to scroll down to the bottom of the page and click on save! If that doesn't work let me know and well go over it again. It's no unusual to take a couple of trys to get it right. I will be looking for your new pics, let me know please :P Darla
You deserve a big bear hug! Haven't heard anything lately, you doing okay hon? I couldn't sleep so I'm up way to early. Take care
Gosh, good luck with your upcoming treatment in January! With significant fibrosis, I'm very happy to see you jumping back on the horse so quickly. Please keep me posted as to your progress, okay? --Bill
Just a quick note to say hi!
I just realized that I haven't checked my notes in months... sorry about that. We only have 6 shots to go... I will be sooo glad to be done with this! I know you feel the same
Just a quick note to say hi!
Yep... 9 shots to go. March 18 is my last shot. I am sooooooo looking forward to my energy coming back. My doc says it will take about 2 months for my anemia to go away, but any increase in my hgb will be a step in the right direction.
How have things been going for you during tx?
Alright...I ran out of room, as my dear friend Marcia can attest, I "talk" A LOT! Whadda ya gonna do...I'm a writer, and I'm from the South, hence my name "Peach",as in Georgia Peach. Anyway, I did the baby wipes, alcohol (which sent me into orbit!), hydrogen peroxide, corn starch, baby cornstarch with aloe and E...according to my dermatologist were "all the wrong things" I actually "fried my crack"! Yep, I did it, cause I think I'm so darn smart, more like "smarty pants"! I had to do the "braille system" to discover the "craters" I created with my own "home remedies". This morning she calls and says I need to come back for a biopsy! She FORGOT that I'm an HCV patient in treatment with Riba and Interferon...ya know, you'd think doctors would read a patients file? That's my "latest".
Please forgive my tardy response...I'm a goofball, and dealing with all this lovely thing we "share"...dammit!...seems to cause a slow 'leak' in the old cerebellum! Currently, actually tonight I ended Week 19...getting close to "half way there". I truly feel I have 'endured' most of this because I have been (still am) on so many pain medications, that besides sleeping a lot, my meds seem to either work REALLY WELL...or not at all, and I'm back to being vampire lady! I'm tolerating everything...EXCEPT the latest "gift" from this hateful thing...RASH FROM HELL...and of course "Dr. Debbie" performed her own 'treatment' for this, baby wipes,...oh yeah, it's on my big butt, actually where the Good Lord split me...yep, ye old crack...dammit!
Hi sorry my late reply. I haven't been on the forum much. Have been traveling since the beginning of June. Hope you are doing well. Marcia
Hi Mary, Sorry that it took so long for me to get back to you. I was on Ribavirin but I dont remember what my count was at the point you are at now It sounds about right though. Your Dr. would not encourage you to continue tx unless he thought that you were doing well. I would stick with tx but it has to be your decision. Also I found out that because of protocol, they wont usually keep you on tx longer than 24 weeks if you arent responding well. Thats why I had to stop. So you wont usually go the full 48 wks if you are a non responder. I hope this helps. Keep up the good fight. Your friend Terry
Thanks. There is much info here.
Also, if you have concerns about your teeth - go see your dentist, make sure your teeth are ok now, and ask for a fluoride tray that they give to patients on chemo. Many dentists provide these to their patients on chemo for free. It helps keep your teeth protected.
Mary Ann, I've been on tx non-stop since June 2009. First I did pegasys+riba, but I didn't clear by week 12, they kept me on the same drugs till week 16, watching how I was responding. It became obvious that my VL started climbing up again, that pegasys was not working for me. Starting week 17 we switched to daily 15 mcg infergen and kept riba dose the same. Some people take a break before starting a different tx. My doc strongly advised to continue non-stop, and I did. His argument was that we brought down my VL with pegasys a little bit, and now, while it's low, infergen has better chances to kill the virus. And it worked - by week 4 on infergen I was still detectable, but the VL was so low that they couldn't give me the number, it was lower than 43. My week 5 PCR showed UND.
:) Thank you for the note, Stalion. That's a picture of my 2 year old daughter, I was concerned that one of her teeth didn't come in on time. We are waiting for her to turn 3, so that they can do x-rays on her and figure out what's going on. Her dentist says that it's pretty common with baby teeth, and that hopefully all her permanent teeth are there.
I didn't have any problems with my teeth due tx - the trick is to keep drinking a lot of water and keep yourself well hydrated. This affects saliva production. The more saliva, the better your teeth are protected. If you feel like you have a dry mouth, drink water, keep those teeth-ruining germs away. Good luck with your tx!
Hi Mary ann, thank you for the welcome :) Havent started tx yet, diagnosed 6mths ago, dont know genotype yet or how much/little damage to liver or how long i have had HCV? I see specialist again soon, had a ultra sound and 4 blood tests, looking forward to results. What is rebitron? =/
Just a quick note to say hi! Hi Mary. Thank you for your nice note. I hope your tx is going well and that you arent having too many side effects. I had a lot of them so if you have any questions about some of them, maybe I can help. I started tx in May 2009. Unfortunately, I didnt respond well and was taken off of the tx in Dec. I am waiting for the new drugs to be approved sometime next year. Im sorry to hear about your back problems. I had a ruptured disc in my lower back in 2006 and had to have surgery. I thought my upper back problems might be from liver swelling but I just wanted another opinion, so I dont have to call my doctor again. BTW my name is Terry. It was nice talking to you. Thanks
Thank you for everything!
Thank you Mary, yea I am going through the heebie jeebies right now, gotta stay strong and get through this, I am so glad you are all there, thanks again, Bree
My Dani is 21 and guess what? She has butterfly wings on on each ankle - butterflies are her THING she ever grew them from little tiny things into coccoons and then they came out as real butterflies and she released them at school! Boy is that a coincedence that you said your daughter was your butterfly! :) I too had it before I had my kids too - we are SO lucky. A friend of mine on the forum was not as lucky and one of her children did contract it. She's about the same age as our daughters. It really puts things into perspective doesn't it? Thank God we got so lucky! See that is a definite positive to remember when you are on treatment right? :)
Dont worry there are plenty of us who got it the same way - back in the days when we were young and stupid and didn't think we were mortal. oh what a shame to find out that we are! nobody needs to know how/why/when nothing. None of that is important. The only thing that is important is that you found out you had it so you can treat it and get rid of it before it's too late! There are all sorts of prejudices in the world and hcv has a pretty bad stigma but we all understand - and if someone doesn't, hey that is THEIR loss not to get to know a wonderful person!!!!!!!! :) Deb
Hey Stalion! My VL went down to only 411 at week 4 PCR but then at week 12 it was 419 - I was not UND. I was UND at my 24 week test though. I had read the Berg Study and the Sanchez Tapias study and between the two of them it suggests if that situation happens and you aren't UND at 12 (best to be UND at 4 at least) then you should extend. I didn't really want to but it worked. Towards the end I thought I was going insane but didn't want to give up and have to do this treatment ever again. Thank God it worked!!!!!!!!!!!!!!!!!!!!!!!!!! :) Deb
Hi Mary, I was diagnosed in April 09. Just did a routine cholesterol screening and that is how I found out. I assume I have had it for about 30 years...I am not certain. My ex-husband had the same genotype 2 and was treated for Hep C. He is viral free now. I think the worst part was reading all of the stuff that could happen with the tx and the expectations...than the actual symptoms. The symptoms are bad until you learn how to deal with them...I believe in being proactive...and don't believe in sitting around and saying "woe is me" I am going into this with the "eye of the tiger." Have you noticed how many people our age have this disease? It is crazy. It makes me wonder what we got into in our younger years that maybe even the doctor's are unaware of? Debbie
It if fun picking out which pictures to post I tried to put ones up that were different but I had more fun going through all my pics just looking at them anyway! :) Yes my name is Deb! A very exciting name don't you think Mary? ;) Keep in touch I am always around!
I live about a half an hour out of the city now but I moved to CT where I work because I got tired of the commuting and traffic. Fortunately i don't work in the city any longer I'm too old and tired for those LONG days anymore! I still love the city though it's the most fabulous place in the world - but it's just so much easier a day when you are not spending an additional 3 or 4 hours commuting you know? I live about a tenth of a mile from my job now - it's closer for me to walk then to drive and park in our back parking lot here! Can't beat that!!!!!!! :)
I don't think when that particular picture was taken it was public knowledge and I didn't know I had it then either. Fortunately we are both SVR now so that is why i have his picture as my profile pic (plus he's the greatest :)
Glad to here your doing good. I just did my 4th shot yesterday feel fine besides I did some crazy sleep walking thing last nigh, I wrote about it! Thought and prayers are with you.
Just a quick note to say hi! No most of my pain is from going undx for 10 yrs with diabetes it ruined my feet and I have neuropathy, legs & feet. I have alot of joint pain in knees and fingers & hips lately so I think I have arthritis too. six tramodol will usually manage it okay, vicodin when a little extra is needed. Recently my docs been trying to reduce me but thats NOT going to work. ow-ow-ow I have alot of fatigue and have no idea where that comes from. hope your day is going well!
Just a quick note to say hi! I'm glad to hear that the tx is bearable for you, looks like your going to be able to continue! Yea!
I'm sorry it makes you feel lousy but I guess one can expect that also. When do you go and get your bloodwork done? I'm okay but pain real bad because my doctor lowered my tramodol to four a day and after going all night without it has eight hours to get real established on me. I don't think this is going to work. I've got to feel good enough to work everyday. I hope your Sunday was a relaxing one and I will catch you tomorrow (((((((((HUGS)))))))))
You deserve a big bear hug! When I think of how many times I rode horses green, I don't know how I didn't break my neck. I'm really sorry about the chronic pain, I too live with pain everyday, I take tramodol some vicodin when it hurts really bad. I have a lot of real bad fatigue and that makes you hurt too. My pain probably isn't as bad as yours though. What does your doc have you on for it? When did your accident happen again? I'll bet you have come a long way since then. Have a real nice evening and we'll talk later or tomorrow .