Hi everyone! Haven't been around for awhile. Between the fire move in and out and being in the hospital twice for internal bleeding, I haven't been here much. Hope you are all doing well. I found out today that I replapsed. My viral load is 6.5, which I think is high? I am NOT ready to do this again. The ischemic colitis could have been caused by the interferon, which I stopped at 47 weeks, although I planned on going to 72 weeks due to my not clearing at week 12. I am not sure what to do now. My energy is pretty low, but I got out of the hospital 2 weeks ago. I am depressed now, of course. I really want to dump my dumb a$$ dr and get the Gish group, but haven[t sent in the appeal to there rejecting from my ins. I know if I were to do this tx again I would double dose, and do everything full speed, but I really am not ready to get back into it again. I have been so sick since tx that I can hardly go a couple of weeks without something happening. Not sure all of this is related to the hep C or tx. I had the fibroscan which showed stage 1 or 2. I am 55 and I just don't know what to do. Anyone have some suggestions? I have been away long enough to forget some stuff and know new things are up and coming. Are there vertex trials for relapsers? Apprieciate any comments and HI to all my friends from the past and HI to all you newcomers!
I am in the Vertex Prove 3 trial. I have failed 7 previous treatments, but I never give up. I think this one is finally going to do it for me, so why don't you wait for FDA approval of Telepravir before doing the really toxic stuff. Not that this is a walk in the park, but it has a high SVR rate and a short (24 week) treatment regimen.
I hope you feel better soon and don't ever give up.
I am very sorry about the relapse. You have gone through more on treatment than could be expected of anyone. You're only stage 1 or 2 (maybe even less now with all that interferon) so my suggestion is to forget all about Hepatitis C for a long time and get yourself better.
If all these things started happening after treatment, 2 plus 2 suggests it's from the treatment drugs and not from the virus. Let the virus wait for better drugs. You need a long rest from the current drugs.
Oh honey, I am so sorry you relapsed. It almost seemed like the odds were stacked against you with the fire and getting sick. Please take a little while and recover, get your health back. I had hell the last year post-treatment from various things (appendix, thyroid) but I have faith next year will be better. Let your body heal, your liver is okay for now, just wait for the new drugs. The janis site may have some new info on vertex treatments (www.janis7hepc.com). You and hubby are in my prayers.
I have been wondering about you and how you are doing. So sorry to hear about your relapse, but you didn't get to finish your tx. I would wait for the new meds if I were you. Dr. Gish says they will be available in 2009. I sure hope so.
I had a very good appointment with Dr. Gish, he covered everything. He's very thorough. Today was my last shot.
I sure hope you feel better soon.
Take good care and God bless.
How are the kitties?
Thanks for your comments! I agree I just can't jump back into that toxic stuff unless it was for a short time, the last tx almost killed me. I was so sick all the time. I would love to get into the Vertex trial, as I am afraid of the colitis and the horrible times I had on tx. I do feel better at times and it feels like a miracle off tx. I won't give up and know at my age, I need to do something before I turn 60. It's been 6 mos since tx now and I am still not ready to do it again with those toxins. My WBC is still low and my liver function tests are slightly elevated, but it seems my damage isn't horrible. I guess I need to get back into the frame of mind to re; tx. Nothing will be a piece of cake, but I realize I should do something before I turn 60. Thanks so much for both your comments! and nice to meet you!
So happy to hear from you! Your last shot! Time to celebrate...did you extend? I know you didn't clear early either. I hope and will transfer to the Gish group, but I have to fight my ins. first. So glad you got to go to them.
My momma kittie died. We live in the wilderness with coyotes and mtn lions. After the fire they moved outside as the contractors moved in. I miss her so much. I still have trouble getting the others inside. Thanks for asking.
So happy for you that your last shot is done! Please give me a call and visit me anytime, I would love to show you all our art work and visit.
Wow! So glad you are still here! Your opinions mean so much to me! I have to wait, I have been so sick for so long that there is no way I am jumping back into tx. I hope that the vertex could be an answer for me, since the tx reqieum seems to be not in my best interest. I can't imagine going back on the drugs for 72 weeks again...Thanks for your suggestions. I guess I just needed to hear this, although my heart and mind were thinking the same thing. Thanks for your prayers! Great to hear from you and everyone again, I have missed you all!
So good to hear from you as well although I feel so bad for what you've been through. Personally, in your condition, wouldn't even jump at Vertex as soon as it comes out unless you have reason to believe (Fibroscan or biopsy) that your liver damage has progressed. Vertex plus SOC is hopefully just the beginning of a new generation of treatments. Interferon may even be dropped at some point within the next 5-10 years. Let's hope so.
Yes, I know that vertex is combined with SOC, which scares me due to my colitis. I HAVE to have a break and at least get a couple of months of no illness in before I could even consider re-treating. Thanks for your input, if you have any other thoughts I would love to hear them. How are you now? I know you have passed your year, and are you clear? I would be surprised if you weren't! Thanks for sticking around to help all of us.
I had a horrible fall and couldn't even lift my head (another reason I haven't been online) I appreciate your help and am sure all these newcomers do, as well. Glad to hear your responses and am so glad you are still around!
Yes, I'm 16 months post treatment and UND as of the one year mark. Thanks for asking. As you may have remembered I had a very difficult 54 weeks but did not have to deal with the type of critical issues you recently had to. Just starting to emerge from the post treatment haze which is probably as much mental as physical although I was having significant skin problems up until this summer, not to mention a worsening of the metabolic syndrome. My thinking is that with many of us interferon magnifies and brings out just about anything that is going to come out, but it brings it out sooner. In that sense interferon ages some of us which is ironic because we're supposedly treating to live longer.
Anyway, as to other thoughts, just want to reinterate that you should seriously think about staying away from interferon for perhaps as long as you can. And I don't mean "months" after you start feeling better, I mean years, or perhaps forever if your liver holds up.
Because of the nature of this place it seems that the whole world is treating and ought to treat but that is not the case at all. Did you read "Kstar's" post? He's seeing the excellent Dr. Mc H., and the doc told him to wait. Best advice I've heard all day.
Hi Sweetie! Thanks for your post. Deputy Bug has done an amazing job in my absence. She could step into the sheriff shoes any day, this is true. My kitties have moved outside since the fire and I have lost the big mama, very sad about this. Have you run over anymore skunks? I sure hope not, they can really stink! Next time, please don't try to rescue them!
Hey sweetie!!!! Thanks for your comments, I agree. I really need a break from this stuff, although b/c of my age I worry about not jumping back in. It is so great to hear from you and all my other buddies on the board, I have missed you all so much. I do need a break and your story about having post tx illness helps. God knows I need to hear all these stories from my friends. I feel guilty I haven't been here, except a few posts here and there. I need this place so much!
So obviously you are no longer on tx and Clear for how long? I knew I was going to be positive after stopping early, even if it was a week. I wasn't surprised, but it still feels like hell. I agree with you about taking a break. Almost everyone else has said so too. Know any studies on age? Anyone?
Thanks for your continueing comments. I don't want to do interferon again. I did and is and could kill me. Why would I want to do that again? I know I don't want to now, for sure. I am worried about age....I know you know the age after 60 on tx. It does seem that my liver isn't suffering too much. Yes, I have some symtoms, but my bx and fibroscan 5 years later say the same thing. Perhaps I am one of those 80% that never have escalating liver damage. Of course, reading and being on this board I am worried as hell that it will hit me at some point and kill me. My best friend died of liver cancer from Hep C. All I know is that I CANNOT do this again anytime soon. Who knows how I will feel in the months to come, or a year or two? It does scare me and I want to live a long live without the symtoms of Hep C.
I didn't do all I could have on tx, like the diet and excercise I should have done. Remember Rocker from Canadaa that followed that incredible diet? I always felt guilty eating ice cream and drinking Ensure. I have lost 30 lbs post tx. I am sort of happy to be at my 19 year old weight, but those wrinkles on my arms are disturbing. I hope to get that energy to get into some exercises, but it hasn't happened yet. I think having some hope that things will work out helps alot, although at times it is hard mustering up those thoughts. So glad to hear you have 16 mos, I can't believe it! I am soooo happy for you! Also, thanks for still being here and posting when I needed you!
Hi Linda - I'm really glad to run into you here. I also really feel for what you have, and continue to endure. With your low damage - I'd try to forget about it. How much was it bothering you for the first 20 years or so? You and the bugs can probably coexist quite fine if you're willing to share your body, so to speak. Take care.
hi, I've been meaning to get in touch with you, been wondering about you as well...so, yeah, of course I'm so sorry to hear that this happened...after all that you've been through. I'm with Good on this, I at least wouldn't go again till the new drugs are up, perhaps you could get on to some of the last trials, so you wouldn't have to wait til it's on market. Usually the last trials are really huge, like for the present drugs, and many, many more people can get on.
Also, that would give you time to recoup and regroup, get your strength back and all. I'd like to email you if I could, and catch up. I know you'll be feeling better soon.
Our friend Ina (an old member here) had so many things go wrong with her because of tx, one thing after another. She was on two years) some of the things that happened were quite alarming. But I just spoke to her today and she's really so much better. She found out she had been low on some vitamins, other things she did to make things better for herself, plus she's on a really good diet. Just some of my own personal thoughts on this, course take what you need and leave the rest behind.
I know you'll be better soon, and it's a godsend that you have such relatively low damage too. Maybe the next time you do a fibroscan, we'll do one together. Hang in there girl, we're all pulling for you. At least youre in such a beautiful area to get healthy in. Be well....
Deputy Bug reporting as ordered!
So glad to see you're back, sorry about the circumstances. That stuff nearly killed you. 60 is just a number, and it's a long time away. Give your body a break, you gave it your best shot (or shots!) and look at all the sides you got for your effort. Your best friend died of hep c but what else was going on in her life? Permanent liver damage from alcohol abuse? Late tx of the disease? I have to wonder about people who die from hep c, as my best friend from high school died of it also. She also had very liitle liver left from drinking, was on a methadone program and was not able to tolerate tx.
I think I might have relapsed too, but I'm not going to worry about it at this point. I have so much GERD and hot flashes, getting sleepy in the middle of the day. Hope I'm just a big hypochondriac and it's all in my head. If not I'm not going to jump back into tx for awhile. I like the Christmas package tx, good excuse to not do shopping!
Oh well, Goof had a good idea, although I don't think he meant it this way:
"You and the bugs can probably coexist quite fine if you're willing to share your body, so to speak."
Are you willing to share your body with me?:)
How about when the time comes, we just treat together again??
Take care good friend....I've missed your humor and great attitude!
I'm so sorry about your relapse - you are one of my heros on this forum and I always appreciated reading your comments. I'm back after a long absence. My son treated and is doing great, my daughter is still in a little denial but she did ask the doc about options at her last appt and they will discuss in january. my concern for her is once she finishes college I cant insure her. as for me, I am still followed by doc a in boston(we all are) and still advised to wait. how did i end up with my liver in better shape than my kids?
I am so glad to see you, I have been thinking about you alot lately.And wondering how you were doing, and feeeling. Going thru some new sx myself and wondering now if they will let me continue for the next 10 - 13 weeks. 10 more and I will be at 48, but he is still using that 12 month. I have lost over 90 lbs now, and all of a sudden ( as of weds this week) dr is now concerned over the weight loss. I am scheduled for a colonoscopy on the 19th, and they ran 9 blood tests yesterday, and a couple of those were to test me for cancer ? I seem to have some pinched nerves from the excess skin.. Not sure though, just know that I feel like someone is putting a branding iron to my hip sometimes, just turning over in bed , then it started that in my arm on the same side of my body. So will have to wait till I see the neurologist. I have been on vacation all week, and we have really been doing alot around the house. While outside yesterday , we were doing some painting on the entrance way to the house, and I kept hearing something cracking. I could not tell what it was or where it came from. Then all of a sudden.. the big Acorn tree in our front yard, split right in 2. So then we finished what were were doing, and had to get out the chain saw, as the tree was blocking half of the street. So we trimmed the branches off and today have someone coming to cut it up and haul it away. But we have to remove the other half too, before it ends up coming down into the house, which would be in our bedroom if it did. I really do not have the money for this, but I guess we have to do what we have to do. I am so broke this year, with going thru treatment and all the copays. I really hope something new comes out for you soon, or like everyone else says, take a break from it for a while, and see what comes about as far as new tx drugs.
Before I turned on the pc this a.m. I was thinking about you and how you were doing. Daughter had a girls' sleep-over here last night and the movie of choice was Jumanji. Kind of fitting, huh? Even though you may be feeling boxed-in with the current conditions, I think you are aware enough to know that there may be other choices and alternatives out there. First, I hope you get all those other issues resolved and feel better so that another go at hcv, at some point, can give the the opportunity to resolve that too. Hi to John, ok?
When I was still lurking, not posting, I followed your story and learnt much about how to interpret viral load results and the benefit of getting an UND by week 12. I am shocked to see that after all you have been through you relapsed. Zazza
I'm so sorry. I'm in that wait and see period. Just had my 4 week post PCR yesterday. I thought you were being treated by the Gish group? Since you helped orphanedhawk and recommended she get herself to CPMC Hepatology Center I thought that is where you were being treated. I'm in the SOC (placebo group) of the Vertex Prove 1 trial. I've seen all the hepatolgist including Gish during the study. I've discussed with Gish relapse because I did not get the telapivir and the confusing 3 UND and one 29 PCR from week 12. They did 4 PCR's at different time intervals week 12 total or what Vertex calls day 85. He said if I relapsed then he recommends at least 1 year recovery and then evaluation at that time. So take some time off and recover and live life awhile. I do recommend CPMC Hepatology Center in San Francisco highly. If you do not have confidence in your doctors it is time for another opinion as Jim has stated many times. Another opinion can never hurt. Take care and work on healing yourself.
Geez, it is great to hear from all of you. I am so glad for your posts. I went to Gish group on my own dime and tried to get my ins. to transfer me there. He is in my group, but not my specific group. So I will try again. I am NOT going through this with the numbskull doc I had before. He would have only let me go to 48 anyway. I have had to see him for my GI bleeds and problems, but he never remembers anything about me. Even after seeing me in the hospital for a month. I like Goof's dx right now. Perhaps a bx later on when I am feeling better. The fibromyalgia seems to be much better and the Gerd is killing me too. I would love to hear how all of you are doing! I also would like to see Rockers diet. Not sure I could handle it though. My appetite is still nil. I lost 35 lbs since tx ended. Not that I mind! Please if you have my email, feel free to do so! I have missed you all. Thanks for all the posts and I am so glad most of you are still here!
How disheartening! I am so sorry to hear, with all you have had to endure, that relapse has occurred. Sounds like it is time to detox from these meds...and get back your strength. I will also remember you in my prayers.
sorry to hear aboout your relapse. suggest you take a break,relax for some time before making any decisions on how to proceed from here,and you would be surprised that you do have a few options
So sorry to hear of your relasp.But I am very glad that you are at an early stage. like someone said you may be one of the majority who do not progress. I hope you are back in your home and recovered from the bleeds etc. i agree, just forget about the Hep c for a while and get strong and healthy, enjoy your life. As for the fear of the big 60, those are just numbers and statistics. You are a unique individual. I am 60 and on treatment, doing OK.
I am still keeping on. Did some double dose and now back on single or 1.5 if I can take it. heading for 72 weeks. Got denied for the extra time by my insurance company - appealed it and won. I'm back at work now and hoping I will maintain my energy. I sure miss my naps.
Thank you so much for all the help you gave me in the spring. You were an amazing support and inspiration. Glad to hear you again.
I am in agreement, hold off retreatment. Eat a healthy diet, and do all the stuff that is good for you. Build up your strength, and look at possibilities 6- months to a year from now. Get a Dr. to follow you closely. I can't imagine your anxiety level at hearing this news. It sounds like you are a fighter.
Sending you positive thoughts.
You will beat this.
I agree with beamer and I horn. This really stinks, but maybe it won't progress. Hope not. I did get rid of the skin problems I had before tx, only to get a few other things like blood thinners for the rest of my life. I do not feel as bad as I did on tx with those up and downs in my bloodwork. I would love to eat a healthy diet, but I am still having a hard time eating at all. So I am still drinking Ensure and eating what I can. I did give up the ice cream! Oceanliver and Wntre, glad to hear from you and all the others. It seems as if the 72 weeks are becoming more these days. I wish I could have made it to 72 weeks as I planned, but it just wasn't to be for me. I keep thinking if only I had done it maybe I wouldn't have relapsed. I knew I needed that extra time on tx. I try not to think about it and am just trying to get back to a regular life again and be more healthy. I have been thinking about at least a part time job, but my energy level has dropped this past month. Could be depression from not being able to stay well. We had a nice summer vacation in southern France and the beach in Spain. I was in a wheel chair and had to use a cane from my fall, but boy did I get through the airports and museums quickly!
Wyntre, Glad to hear you are not going back to the classroom. I am trying to figure out what I can do with my credential and use it. I was given 10K to go back to school, so I may do so in the spring and finish my masters in Instructional technology. Maybe teach in college. I really want to go to law school, I have helped John win his last 5 cases and I am pretty good at it. Watching all those judge shows...hahahaha. Actually that was my major in college; law. Three years in law school sounds really difficult right now.
Thanks all for your posts. It's so good to hear from you again. Hopefully I can stick around and not get sick again.
Here is some infor from a Rockerforlife post, about a year ago I think.
BREAKFAST:greens powder shake...1 tbsp flax seed...i tbsp cummin seed...1 tsp beet powder...1 shot AVC...1 probotic multivitamin...1 glass orange juice...1 gram vitamin c...500 mg NAC...1 tbsp blackstrap molasses...LUNCH:`1/4 pound of alfalfa sprouts...SUPPER:1 organic egg and veggie burger bagel sandwich...25 grams raw almonds...1 tsp flax seed...i tsp cummin seed...1 soya protien shake with carob powder and raw sugar...1 apple...i bananna...1 tbsp raw crushed ginger...10 OCLOCK SNACK:air popped corn lightly sprayed with canola oil and saa salt..........I WOULD EAT MORE BUT BY THEN ITS TIME TO HIT THE SACK......................hope this helps........JIM....could you please retype this out in a list form....i dont know how...THANX
APPLE CIDER VINAGER....YES ALMONDS TOO IN MORNING...25 GRAMS...MY GREENS POWER SUPPLYS ME WITH THE EQUIVELENT OF 8 ORGANIC SALADS WITH ONE SCOOP...ALSO SPROUTS ARE MORE NURTIOUS THAN SALADS,LOADED WITH MORE VITAMINS....DISTILLED WATER IN ALL MY SHAKES AND JUICES....YVES BRAND OF VEGGIE BURGER,I TRIED OTHER BRANDS BUT THEY SUCK...NO MEAT...NO FISH...NO CHICKEN....JIM.....i am still trying to keep the weight off...and i work 48 hours a week....walk 3 miles a day....pump weights 2 times a week...light weights....its not the calories that are important...its the nutrients in the foods...IT WORKS FOR ME....give it a try....you will be thanking me
Vege Greens is a comprehensive combination of over 60 land, sea and cruciferous vegetables, as well as super green foods, EFAs, pre and probiotics, enzymes and herbal extracts. One small scoop is equivalent to six to eight servings of vegetables, and offers a full spectrum of nutrient-rich and highly alkaline foods. Professionally formulated and energetically tested, Vege Greens contains no artificial flavours, colours, or sweeteners, and no hidden ingredients...................8 SALADS IN ONE FRIGGIN SCOOP
are one of our finest food sources of another compound, saponins. Saponins lower the bad cholesterol and fat but not the good HDL fats. Animal studies prove their benefit in arteriosclerosis and cardiovascular disease. Saponins also stimulate the immune system by increasing the activity of natural killer cells such as T- lymphocytes and interferon. The saponin content of alfalfa sprouts multiplies 450% over that of the unsprouted seed..............
Rocker now posts elsewhere and unfortunatly appears to have relapsed. One word of caution regarding any supplement heavy diet and that is to run whatever you're taking by your doctor as less doesn't necessarily equal more. Also, make sure your diet has enough fat (for ribavirin absorption) and not too much fiber (flax, psyllium, etc) close to when you take the ribavirin. The absorption issues again. Rocker was one of those who flew through treatment without hardly a side effect. I hate to generalize, and I realize there are many exceptions, but it seems like at least a few here who didn't have hardly any side effects also relapsed. In addition to "Rocker", "MyOwn", and "TheFly" come ot mind. Rocker can be found here now:
I neighbor, I am so sorry to hear that you relapse. I hope you will wait for a while before you get back on the toxic meds. See if you start feeling better. I am just a month post tx. I feel like hell. I have no energy what so ever. I'm calling my nurse practitioner tomorrow to see what i can do to feel energized. I take a walk up stairs and I can't wait to lay down. I can't leave the house because of tiredness. I am having a hip replace me on 9/21 and I'm not so sure if I should have because of the lack of energy. I am in so much pain from the hip that I can't wait to get it over with. I hope you get better sfbaygirl. I'm in Walnut Creek remember me.
I’ve thought of you often in the last year and was wondering how you were doing. So awful that you relapsed after the horrible year or more that you had.
I’m glad you checked back in here.
Best to you, Dana
Oh sweetie I am so heart broken for you - you went thru so MUCH to treat the first time it's just not FAIR how some people seem to skate through it unscathed and others who have so many problems relapse.
You are so strong to have gone as far as you have already. I agree take a breather and get your strength back up before you even THINK in the FUTURE about trying something else. You've earned it.
I'm so sorry I know how hard you worked and how crappy everything went from the interferon...it's just not fair.
Thanks again for all the posts! They mean a lot to me.
BAW- Yes, I remember you live in WC. My energy is come and go still. Hopefully it will improve. If you are in so much pain perhaps you should do the surgery. You are already laying around. Are you still with the same doc?
Yes, i am still with dr. hosseni - i was suppose to take blood work a month after tx but, i have not done that yet due to going to texas with hubby to see his parents. i did not want to go but he made reservation 6 month in advance. My hip surgery dr. is dr lazarini. My wbc count was below the standards at the end of tx. My primary dr and hepc dr said it would go back to normal but did not say when. i believe thats why i feel a latch of energy. i will pray and pray for you every night for you to get better. maybe when we both get better we can meet for lunch.
So good to see your post and I am so sorry that you relapsed. You helped me so much during tx. We were just a few weeks apart and you were leading the way. I also relapsed at my 3 month pcr.
I am making efforts to get strong for another round of tx. I will be watching with hope that the new drugs make their way to the market. Untill then I will try to do all I can do to boost my immune system through a good healthy lifestyle. 11 days ago I began a 30 day intensive herbal and juice cleansing program. I had to do somthing I was caught in a rut that it seemed I coundnt get out of. I am starting to feel much better. You hang in there and if you are interested in the program I am doing it is called The Incurables Program by Dr. Schulz. May God Bless You and Keep You!
Yes, I saw Hossini, he agreed with my doc and was friends with him. I wanted more than SOC at that point. He actually agreed at the end of the appt. to MAYBE extend me due to my knowing more about the cutting edge stuff than he did. Kind of abrasive, but at the end of the visit willing to comply, sort of. When do you do your 6 mos. PCR? Hope you get your PCR. White blood count didn't make me as tired as Red..
Yes, it would be nice to meet for lunch! Let me know...
So So sorry you relapsed too. Yes, we were close in dates of tx. I always enjoyed interacting with you. I guess we join the relapse club, we were of course had a 50% chance. So much more studies show that that 24 hr, and especially 4 week PCR show whether we should continue or not.....or extend. Now we need to be even more diligent on how we proceed with re-treatment. Perhaps double dosing, Vertex etc. At least there are options....one of them being nothing. For the moment that is what I am choosing. Maybe I am one of those that dont' progress. Knowing that the trials wouldn't be good for me, b/c I NEED rescue drugs, I most likely will get a BX and wait and see how the Vertex comes out and on the market. Hope you are doing well and not concentrating on the depressing thought about us relapsing. I had a good day today and am hoping for the best. I hope for the best for you and all of us relapsers. We are now in a new club, huh?.
It was great talking to you today. Helped make my day much better. You are a special lady. That picture is awful. John wants me to take it down, so I will. He looks so much heavier a few years ago. I am thinking of putting up one of me and my kids soon. My family being so special. They stuck by me and I have not lost a lot of friends, but lost touch with a lot during tx. Looking forward to more days like today. You helped make it good for me. Your pic. is great!!
I believe my 6 mos PCR is October 24th. Don't you see a doc in S.F.?
I am so sadden about your situation, you are such a beautiful person. You were the first person that gave me info here. I was so terrified about the TX in Aug. 2005 when I first signed on here. You made me fill much better and I thank you for it. Everyone else did too. Its only been a month since my last shot and taking the riba. I fill so bad and if I am still on the meds. The doc said it takes 2 wks before it all out of your system, but I don't know if that's true. Because I feel the same, just lousy and I told you about the hip surgery.
I in S Lake Tahoe as I write this to you. I love gambling, but I am in the Resort and not at the casinos with my husband. You know I feel lousy. But enough about me, you are feeling worst and I will keep you in my prayer daily.
I remember your first post neighbor! I love S. Tahoe too, although haven't been for a while. I felt awful for 6 mos post tx. Only now am I feeling a bit better. So it may be awhile, but you will eventually feel better. Thanks for the nice words, I was glad to be there for you. I am hoping for your SVR! It is such a rough road, but you made it. Post tx can be really hard, it sure was for me, but I think I am starting to feel the better side of it, thank goodness. Things seem to have gotten better for me, although I never thought they would. Good luck to you (in gamblng and SVR) I like craps! When I felt like them I couldn't even play! Money is tight from not working, but I love South Tahoe and hope to go soon.
hey guy, I agree w/ you...I try to always think that one person's truth does not make a universal, but hey, we've both been here long enough to make at least some guesses at a possible generality, lol...
over and over again when I hear that someone does not have hardly any side effects all through treatment, i figure uh oh...but I do remember that a few people I've heard of had very few side effects but svred anyway....
even some of my friends, 2Irish for example, relatively very few side effects, didn't SVR...so great, I have to get kicked in the butt, whatever..
.I'm not making this out to be a for sure deal, cause how would i know for sure? the docs and scientists don't seem to know much for certain either...
but I do think there is something interesting there...then of course, inversely, just because you do experience a lot of side effects, doesn't mean you'll SVR either...all a **** shoot unfortunately, prob has a lot do with genetic makeup...
I've mentioned this before a few years ago and got roundly trounced...(it was a rowdier, more aggressive culture back then too)I might of been too emphatic about it, now I'm none too emphatic about anything to do with HCV....be well...
And how about us that have horrible sides and relapse? I agree I have seen many here with no sx and no SVR, but also horrible sx an no SVR. I guess it is anecdotal as we certainly aren't doing a study here. All I know is I had a 50% chance as a 1a and after no clear at 12 weeks at about 30% chance of SVR going 48 weeks. Has anyone seen a study on sx on tx meaning SVR, I doubt it. But it does seem to play out here a lot of the time.
I take your point, but I've seen a whole lot of people with bad sides SVR here, and I just haven't seen a lot of people w/ hardly any sides SVR...I hate to say things like this, because if there are patients out there treating w/ no sides, I sure don't want to predict their fates...cause I can't...I just see things that are interesting...I guess one day soon, most people will SVr, the vast majority, won't that be a happy day!!!!
Yes, I see your point. about the sx vs. SVR. It seems to work out here, doesn't it? Won't it be a great day when our odds go up in the SVR department? Vertex seems to be doing fairly well, perhaps in a few years we will see cocktails like with HIV that at least keep us going much longer. I knew the odds weren't great when I started. I knew the odds were worse when I couldn't extend. The longer we are here, learning about what those studies are the better odds we have I think. I sure wish the best for you in your decision of which tx you will do. It does seem like a real live **** shoot, doesn't it?
I echo beamers comments. I'm so sorry this happened to you. It just seems like considering what we have to endure, we are entitled to be SVR. One of these days someone needs to have a talk with the woman upstairs. I truly hope better treatments are around the corner,
consuelo dos gatos (now its 4 cats!!)
Linda, I'm sorry to hear about your relapse. Probably, you remember you and I started at approximately the same time, both delayed responders and were supposed to do 72 weeks. You had horrible SX and stopped at 47 weeks... Well, I continued to the 72 weeks finish line with autoimmune SX getting from bad to worse in the last 3 months. Now 3 weeks off Tx, the SX didn't get better, the pain in the liver area really bothers and scares me, fatigue worse than any day during Tx, digestive problems I didn't really have before Tx, I feel my whole body is destroyed, my immune system in disarray and my liver more damaged than before.
If you regret you couldn't continue 6 more months, I start to regret I didn't stop when you did. Or even earlier - when I didn't clear by week 12. Actually, I wish I never did this second Tx. If I could go back to Feb 2006, when I never had rashes or eczema, or constant liver pain, or lungs that feel like punctured, and somehow I could get just for 30 min in my post-Tx body today, I'd NEVER start the Tx.
Yesterday my GP sent me for 12 different blood tests to see what's wrong with me. My AST/ALT are increased to the level of week 12 when I still had the virus, the total protein is above normal (for the first time in my life), monocytes and eosinophils are way above the norm, suggesting autoimmune disorder and /or HCV relapse. I'll have the results of my viral load by the end of next week. If it turns out that I've relapsed so fast after being UND for more than a year, in addition to being poisoned to a degree where I don't have any semblance of normal life, I don't think I'll be able to handle it very well. Frankly, I don't see how to deal with this bleak post-Tx reality at all.
During Tx, despite the depression and worsening SX, I was able to push further and further, week after week, only because I was constantly dreaming about the proverbial "light at the end of the tunnel". Well, now it seems the tunnel ends up in a meaningless and fractured horror movie of endless torture and body mutilation, directed without a script or sense of purpose and mercy.
So, if it's any consolation, 72 weeks of Tx by no means secure SVR, but for sure bring more severe SX and long-term post-Tx damages.
just so sorry to hear your dealing w/ so much, as you have seen, so I'll only reaterate, many people had soooo many different sides that extended, and they were sure they'd never go away, my friend Ina for example, and many more, but eventually they did clear up...I wish this for you....
Fishdoc!!! I was thinking about you lately woman!!! How are you??? I hope you have cleared and are doing well. You made this board so fun and happy, I miss you and glad you responded. Yeah, what a drag I relapsed. I did sort of expect it after the hospitalization, but sure was hoping for SVR anyway! Don't be a stranger, do you have my email? Still on the other board? I was so sick post tx, I could hardly lift my head....starting to feel better. Hope you are doing well. I think of you often...
Of course I remember our shared experiences on tx. What a trip it was, huh? So sorry to hear of your post tx sides now. I went through hell for six mos. post, I can only imagine going the 72. Luckily, many of the sx have gone after the six mos post. I know what you mean about not doing tx at all. I have felt the same way at times. Especially since I didn't achieve SVR. I didn't expect to really, since I couldn't continue. Since you did, I think you have a much better chance than I did.In some ways it seemed that the sx after tx were worse for me than tx. I suffered a lot for quite a while afterwards, with NO reward. You going the full 72 weeks have such a better chance of clearing than I did! Those awful sx mostly go away....it may take awhile and hopefully none will be permanent. Going that distance you will most likely get that SVR and that was our goal, huh? I really feel your pain and can tell you I went through hell and back, but at least yesterday and today, I feel pretty good and am off the fentanyal patches and feel better, not great, but better. God, there are so many times I wish I had never done tx, but I know that it helped my liver. I try to stay positive about it, as awful as it was and is relapsing. Not sure I will ever do tx again, but I am not ruling it out.. I wish the best for you and hope you keep me posted on how you are doing in the aftermath of the toxins and torture it was and is, post tx seemed almost harder than tx. Do you have my email?
Love to you! Linda
PS. Please newbies, don't take this as a message to not treat. I am glad I did, even though I relapsed. My liver benefited from my tx.
Thank you all so much for your well wishes on my relapse. I can tell you that you guys and girls have made it so I am not so down as I was and with the support from all of you I feel loved and part of our community. As we all know, it is hard for our family and friends to understand what we go though. The support I have recieved here is invaluable and I apprieciate it so much! I know I couldn't have made it through this without all your support and caring. Newcomers, please take note that this is the BEST rescue drug before, during and after tx. The support from these people and many others. Thanks so much!
So sorry to hear this. We're in the same relapse boat. I was supposed to be that geno -2 -0 damage shoe in, but its a cr@p shoot no matter how you look at it. I hope you start to feel better real soon. This disease stinks for sure. You have had a tough ride and you are so strong. I'm a little baby next to most of you guys - even had the 24 week baby course so I have no right complaining. I had a very easy time on tx so though it's crumby to relapse, I shouldn't feel sorry for myself when I see what alot of you guys have gone through.
I know John must be really bummed out. My husband looked like he was going to cry everytime he looked at me when this first happened. I was getting the feeling I wasn't going to svr so I was preparing myself mentally, my husband was 'so positive' I was going to svr, so it was harder on him than it was on me. Then when the relapse happened, I actually felt it. I don't know if you experienced that, but I had night sweats so bad and not just at night, during the day too. I also had alot of numbness in my lips, tongue and hands.Now my tongue just has slight numbness and my hands aren't bothering anywhere near the way they were and the sweating hasn't happened at all for at least a week or so.
I don't know where I will go from here. I'm hoping I don't have cryo. If I don't have cryo, I will probably not treat again and just keep an eye on my liver. Hopefully the fibroscan will be available in the near future. I hope you feel better real soon.
Just read this thread again and was so thrilled to see all my support from you all. It's not often that we find such a great group. I am amazed rereading this thread all those that were there, and still are, for me. Thanks and hoping for us all to have a Happy New Year!!!! Especially all the SVR's
I am currently on a tx. vacation. (call it denial.) I won't see my Dr. again until March. My homework is to lose weight, quit smoking, exercise. duh! i am fighting to keep off the weight I lost during tx. It feels great not to think about the Hep C and being sooo very tired. My Hemeglobin jumped back to almost normal. I will start Tx. again & plan to be very agressive with meds.
My only advice is to enjoy today.
Happy New Year to you.
My bleeds were GI, colitis, not my liver. I am concerned about retreating given the fact that the bleeds could have been from the Interferon. Most tx's are with interferon. Do I take a chance this could happen again? I don't think so. Most likely I need to get another fibroscan, see where I am and if I am not progressing, why tx now.
I am now at UCSF with the hepatologist in charge...he knows the Gish group well and talks with them regularly. If I find out about the PI trials, I will let you know.
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