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I should be completing my treatment next week; at my 48 week point however it was announced to me last week that I need to do an extension of the meds. This has really thrown me for a loop and I'm not feeling well about this at all. Since I found out that I will continue on with the medications and not be able to stop at my 48 week goal, I can't get all of this out of my mind and put it in it's place. I want to be able to do just that 'say hey you...gotta do a few more weeks now...what the heck...you can do this...right? Yes, right you can'. I just want to leave this alone now for a while.
I've tried so very hard to be strong and get along with this treatment the very best I can. I would like to think that I've done a good job with striving towards and accomplishing my goal of taking the meds day after day, after day after day.
I feel so overwhelmed. I keep thinking and re-thinking how long its been since I've been on this medicine that's when I see it all flash right in front of me. I keep thinking about how powerful this treatment is to do and how it robs you of your life, body, mind and soul. I keep thinking that I should be done and have this over with....I just keep thinking, and thinking and thinking.
I now start to cry when I get ready for my day. I now cry during the day. I am now up at night pacing the floors and telling my husband that I'm just not sleepy. I now cry before I go to sleep. I now sit and daze out somewhere (really don't even know what I'm looking at). I cry and feel so badly for the new people who come on this forum and announce that they have hepC and have to treat. My mind is wandering with all sorts of things like why does this have to happen to people, why is this so painful to do these meds only when we are trying to heal ourselves. Is this really going to work. If I have to retreat will I be able to handle it again?
These last few weeks are consuming all my power and energy that I have left. I truly do understand why I need to do more than 48 weeks. I know that it is only for my benefit and may/can possible up my chances slightly to stay clear of this virus. I understand all of that. I just want this treatment to be over. I just want to have my life and myself back.
I'll be able to discuss things with my GI on the 16th. Discuss things like how much longer will I have to do the meds....period. Discuss what I tell you all on this forum and what we all discuss with each other....never. He will never begin to understand. He really wants to and is so compassionate towards me and his other patients.....but he will never begin to understand.
I am so sorry you are feeling so badly. It must really suck to be so close and find out you must continue. You had the strength to make it this far, so you must have the strength in you to go on a bit more. I am sure the extra time will go by really fast although it doesn't seem like it now. My prayers are with you...
G
Where are you at the damage leve and when did you clear?
twotells - I believe BobK posted that link. IMHO, the projectsinknowledge site is full of useful CME information and is a very good resource.
I am trying to take it a day at a time; maybe an hour. There are times when I don't feel terrible, I try to grab onto those times for all I am worth.
Hang in there. We are with you.
I always stare out the window at nothing like you do ....but it can be very meditating and grounding.....
Downthisroad, I was really down and out for a couple of months, feeling pretty depressed, no energy...no amibition....and really feeling like there was no joy.......it finally did pass. Please let us know what you need to do next. Many hugs to you and your family.
Peace
Luckily for me, my doc has already planted the seed in my mind that I may do an additional 12 wks. I'm now on 21/48 or 21/60??
It's tough for me to imagine doing the extended time but, on the other hand, I want to give these meds the best chance I can of kicking this dragon's butt.
Good luck with your decision. We are here with you whenever you need us.
ambush :)
I have a viral load of over 4,000,000, and my fibrosis rating was 3 out of 4, with the other ratings all being 1's. My enzymes were sgpt 248 and sgot 100 last summer. A couple of weeks ago, they were much lower, one was within normal limits. I don't know why this is, maybe my liver inflames and recedes or something like that. Anyway, I'm a social worker and am worried about how this is going to affect my ability to work. I am considering informing my boss b/c I don't know how bad the sides are going to affect me until it happens, but I certainly don't want to lose my job b/c I'm in treatment.
I wanted to introduce myself and say that I intend to participate in a helpful manner. God bless all of us.
your friend ~Neal~
Pete
All: Well, I am about to do my 40/48 shot!!!!!!!! (My palms are getting all sweaty already) I do not think I will ever get used to the psychological apprehension of "the shot"...(the "plunge" is my hang-up) and really, it is not all that bad. So, I wonder why I have to count to 3 about 20 times.....before I can do the "hit". I am really looking forward to "scratching" off another shot date on my "countdown" list.........Take THAT, you "bleeping" dragon!
well to make a long story short after fighting for a month
and finaly threating to sue medco health finaly sent the riba.
they had sent the peg-intron 3 weeks ago.
so i'm trying to see the hep np at the university and start treatments on friday.
will be at least 48 weeks and dr. will let me know if we need to extend near the end.
going to be a long haul for me white cell count is 1.4 so will
be neutropienic fast, h&h are good but because of the leukeamia
my platlets are at 80 and havent started treatments yet.
but after fighting with medco health since december to get the meds at long last i can get started. will try and post again friday night and let ya'll know how its going.
Good luck. My sides (I am at 22/48) turned out to be relatively OK and I have been at work almost every day. The mental effects have been the worst for me--forgetful, mentally tire easily, not as sharp--but I am dealing with it as best I can. Here's hoping yours are bearable, too.
As far as telling people, I own the business so that is a little different, but my employees all know and are OK with it. I have had some wierd experiences in telling business clients that I am in tx, so my advice is to be circumspect at work and open with your family and friends. Every situation is different, of course, so make your own decision.
Hang in there, visit us a lot, and remember that rage is a recognized side effect so when we give in to it on the board, just stand back and try not to let any spatter on you. It's going to be a ride, but at least you're not alone.
Thanks,
Pete
There is no reason. I am not a Christian, so I don't have the consolations that offers people. I do believe that the only thing that does matter is how one treats his world and the people in it. I don't know about God, but there has to be some essential goodness in this world.
You have taken 11 months of what sometimes feels more like poison than medicine. You can do the rest if you have to. If you need to take some time to acclimate to the news, then take it. Don't confuse the side effects of treatment with legitimate feelings.
None of us deserve this, no matter how self destructive or how innocent in the contracting we might have been. Yet we have it. So **** it, the only thing to do is fight it. (I'm at 22/48 and the thought of not clearing scares me, but I don't know what else to do except try.)
Sorry for the invective. I used get angry when my daughter would tell me how this one girl was mean to her at school. "I'm not angry AT you, I'm angry on your behalf," I'd tell her. DownTheRoad, I'm angry on your behalf. Treat yourself well. You're one of the heros.
Pete
Kathy
Downthisroad, hang in there as best you can. My last 2 months of tx the last time were the worst for me and I probaly would have made my doc match me shot foe shot and pill for pill if he'd told me I had to keep going.
Lucky Welcome aboard!
berlynn As one Kim to another, I'm sorry things are hitting you this week the way they are. As for the Riba Rage well... as Bones on star trek would say "Damnit Jim, I'm a doctor, not Oprah" It's very hard to keep our cool when the meds work on us the way they do, we especially don't want to hurt our families and when/if we do we feel like dirt! The sides do fluctuate and let's hope that things get better. You may need ADs adjusted if things get out of hand! Hang tough, we're rooting for ya'.
Kim
is a great website. They also have a mailing list -- I just received a study on fibrosis this morning from them. You can download a copy (or read it in html by going here >> <a href="http://www.projectsinknowledge.com/Init/G/1664/index.html">Monitoring of Hepatitis C Progression:
Assessment of Fibrosis Using Liver Biopsy
and Noninvasive Markers</a>
Thanks for posting the link twotells.
1. I was scared to death of stopping treatment completely. I remember nearing the end of treatment and getting pretty freaked out.
Treatment, to me (even though it is rough etc.), meant I was clear of the virus and no more damage was destroying my liver (I am Stage 3). So, odd as it sounds, it was a comforting place.
2. I want to reverse the fibrosis if I can. I want to go back to Stage 2 or 1 or 0 (like BobK did).
Last time I saw my doctor he told me I could be on this treatment for years.
What is funny is during treatment the doctor and his trusty assistant said I could stop at 48 -- they almost insisted (because treatment has made me crazy -- a real whack job -- and I refused ADs and took solace in a bottle of Xanax). After researching this damned disease and mulling over things (how long does progression for Stage 3 to 4 take - would an extension hold back that - would doing 72 weeks prevent me from developing HCC - lots of junk - emailing Dr. Ben Cecil and other doctors) I decided in my mind I would push for extended treatment. Okay, then I made a frantic call to my nurse and asked for MORE Pegasys. When I saw the doctor he acted like that is what he intended all along -- to keep going. He laughed and said Nurse Booze Bottle (name changed to protect the innocent) is a hard taskmaster, and he (the doc) would have given me 2 weeks off during the holidays. Ha, like 2 weeks off of this **** -- I mean life saving medicine -- is going to make anyone feel like their old self. Right.
I hope that made sense.
Has anyone tried a hoola hoop lately...my mom got some for my grandkids...I tried to do it...I used to be able to..what a laugh....hips going in all directions....hopefully my grandkids weren't traumatised by watching me try....LOL
rev..thanks for the reminder of what you have been through...and thanks for all the info you share with us. So what if we are wacked...we desrve to be with all the shi# we deal with on tx. you take care, kim
I found this article about Liverite, I know some folks are on it. I also found that sea silver or any kind of supplement with silver in it isnt safe, silver is toxic to the liver. And coral calcium isnt any better than regular old calcium, that it is of no use to the human, when to you see humans grazing on coral? I cant remember where I read it, but it made sense to me. I am embarrassed to say I bought a bottle of it and gave it to my husband 6 months to a year ago. He lived thru it thank goodness, but I wouldnt buy anymore. My mother-in-law is a big sucker for those "new alternative therapy" stuff out there.
Here are some other sites that help you weigh the pros and cons:
Liverite marketers ordered to stop improper claims. Liverite, Inc., of Tustin, California, Corinne and Steven Jacobson, and James and Sheri Grant, have agreed to settle FTC charges that they made unsubstantiated claims in Internet, radio, and print ads that their herbal products were effective against liver diseases, hangovers, and many other health problems. Under the agreement, the Jacobsons and the company will pay $60,000 in redress, and all of the defendants will be prohibited from claiming making unsubstantiated claims that any product cures or prevents any disease or disorder. The FTC's complaint indicated that Liverite's Web pages used metatags so that people searching for information about AIDS, hepatitis A, B & C, liver problems, liver disease, liver detoxification, alcohol, hangover, cirrhosis, anabolic steroids, interferon, and hepatotoxicity would be more likely to go to defendants' sites. [Marketer of dietary supplement purporting to treat liver diseases agrees to settle FTC charges: Must have adequate scientific evidence in the future. FTC news release, Aug 21, 2001]
http://www.ncahf.org/digest/01-35.html
http://www.truthorfiction.com/
http://urbanlegends.about.com/cs/healthmedical/
One thing that is hard to remember for some of us on tx about that darn Riba Rage.......is: "this too shall pass"....the guilt factor can be the most dreadful, because we hate to hurt the ones we love. My hubby was on tx a few years ago, so he can relate, BUT, we still have "stand-offs". I can spend a whole day hating myself, and feeling like an "Ogre" and the worst person in the world.....keep your family informed of the sx....(I always warn my hub, and even tho it is hard to admit that I am feeling "less than"...I lay it all out on the table before anything happens. I feel so unattractive now...(I do not even make an effort to change out of my pj's, no makeup, hair looks like the current "internet forward of the persian cat with the "bad hair day"..do not know if you know the one....I started feeling mentally better when I started to not fight any of my feelings....I felt like I had to hide my "womanly imperfections" from my man....(I was hiding from myself) One day I just had him take pictures of the back of my head.......those darn bald spots...instead of hiding them anymore....well...I only wanted one picture...and he kept saying "let me do one more" hahaha..I think he finally got that the hair loss factor DOES trigger a lot of lost self-esteem for me....I know I am rambling...sorry, just one more thing....I have no children but many nieces and nephews....of course, I have the one favorite that just adores me....(I am lucky) she is going to be 13 in April...she spends some weekends with me and brings one or two friends....we have a blast shopping, cooking, baking, dancing, singing, going to nice "big girl" restaurants, ghost stories....you know, wonderful and fun girl stuff....well I have been so sick in the last few months (getting better every day, now and feeling new zest for life) I had to cancel our last "girl time"...well, she cried and cried and I felt so guilty........I felt like the meanest bad Auntie in the entire Universee....well, she did get over it like kids do......and today is a new day. I have learned to put myself first...not easy for me....I had to learn to "respect" my health issues and lack of "everything" and make that my priority. I always know that my chaotic moments will bring with it more peace of mind...down the road.
I am here for you....................I am so sorry I did not see your post, but am so glad that you feel better...........Everyday is a new experience, and we never know when our sx's will turn our world upside down........we hopefully remember that each moment is a new beginning. I hope I am not sounding weird....I am having a weird day too. This is the first day I feel REAL ENERGY, and I feel "all over the place"....but I think that it is good, because at least I am not laying on the couch.....maybe I can clean house for 5 minutes...hahaha I am not going to overdo it....PEACE
Let me know if you would like to email each other.