Need some positive notes

[tulips27]

Hi everyone. As you all know Im new here 2 weeks. However not new to the disease HCV.
I have made a clear and consious decision to treat by Christmas the latest. You guys that have treated Im sure you know how Im feeling ( the pre tx jitters-uncertainties) SInce Im not txing yet..hate to bother all of you before the fact..I was planning on being in tx and then bothering you!
Can you please send some assurance this way....Ive read all there is to read....I ve read ALL your tx stories...and now Im left with me and my thoughts.
I know its very scary to go thru "the challenge of your life" I was told by someone who has cleared the virus. I also know the tx is doable..for most.
Just looking for positive feedback. THANKS ALL OF YOU FOR YOUR SUPPORT SO MUCH!!

[tulips27]

thanks eveyrbody  for all your support and info.I think my eyes are popping out of my head from all this info and all this reading.
I think i have read enough (thanks to all of ya) to see me thru until time to tx.

I will post when doing my 1st shot around x-mas.

computer burnout hahahah

[tulips27]

Im not starting treatment probably until Thanksgiving or CHristmas. I havent begun yet.
Hope your doing well with your sx.
take care & we'll touch base again soon.

[GrandmaA]

If you are genotype 1A why do you hope to  be SVR by Xmas? That's only 6 months. I started on Sept. 22nd and I won't be done until Sept. 7th is my last shot. I have to go 51 weeks, that's almost a year. Best wishes to you in your tx and acheiving SVR. Sounds like you are well prepared. I had trouble with nausea at first on the riba. Take it with fat - almonds or ice cream. I lost 17 lbs.
Sleep was my biggest hurdle. But I come from a family of insomniacs. The riba seems to wake you up too early in the morning.

[orphanedhawk]

I thought of something else to share with you. Prior to beginning tx, I tried to surround myself with pictures that made me feel serene. I have a lovely view but also pictures of calm lovely places and enlightened smiling faces. I put a book by the bed with simple inspiring thoughts. I did a little ritual whenever I took my shot, welcoming the medicine to heal me. I even tried sending love to my liver!!!
     You do get hit with strong emotions from the meds. I never took AD's or felt personally depressed but the news would have me sobbing until I learned to turn it off.
     Light and Joy from the northcoast,                                OH
  btw: ladybug finished tx early and is still UND.

[tulips27]

Thanks so, Yep Im a liitle anxious all par for the course right? Glad you are making it well thru your tx. Wish you well. I will be here on the forum keeping you all posted. Hoping not to complain much.
Thank goodness yes I have good doctors.-


Peace & Health

[ladybug52]

I treated in Dec also. Like you I had was a little anxious before hand ( only the naive' are free from pre-tx jitters) My dr's thought I was crazy to tx during the holidays. One would not tx so I went to one who would. I had the meds since Sept, and just got to the point that I HAD to start before I chickened out again. Glad I did it, the timing was good for me, the holidays served as a distraction to the tx, and the weather was cooperative also.
Good luck, glad you have a great team of drs.
Hugs,
Bug

[tulips27]

thank you so much . that was very sweet. Ive always had a great sense of humor i hope it works !
Life is a bunch of if's and cherries!
thanks so
be well and stay that way!

[orphanedhawk]

I see life as an adventure book. Some chapters are more fun than others. I certainly wouldn't have chosen this route but I have learned from the experience. I think you are wise to try and educate yourself as well as you can prior to beginning tx.
      One piece of advice that helped me was, that the sides don't last. I think if you can retain a sense of humor, you'll do fine.                                OH

[tulips27]

yep! its a heavy!I cant even come to terms with it... Question and  then have to get back to work..before you treated were you anxiously awaiting the unknown too? or did you take it with a grain of salt. This is a very common question, were you sx worse or better than had antipated before your tx.

EVerytime someone passes my desk they see MED HELP FORUM uh oh!!
thanks fl guy for all your support

[FlGuy]

The decsion to consider a trial comes with a lot of factors; the ones you mentioned and others.  Existing insurance coverage, travel and lab committments at the trial site, any progress of the trial drug to date.  I had looked  a few and would have considered one or two  but the timing was not right when the doc said get on some treatment as soon as possible.  Lots of decisions and info to analyze.

[tulips27]

I WOuld I be better off with a trial you think? Threre was mention of it ...from all 3 doctors.when I go back for bloodwork he told me it would be discussed further.......
Im totally a layman when it comes to trials...Ive read and sort of undertand to some degree but from what I gather its a difficult thing being in a trial not knowing whether you;ll be omitted from study, placebo situation and other things..I Just dont have the brain power right now to truly understand the mechanics of it all and I get very weary from it.....very draining for me  anyway.
From what i learned phase II trials are the best to participate in? AM I wrong?
thanks

[tulips27]

This is bizarre too..but maybe not..since I got the results onthe 13th..(Im VERY young at heart)
Ive been drivivng with the radio on 10 volume!! Ive been really acting like a kid again in many ways.
Maybe Im afraid these will be my last happy days?? WHo knows..Maybe normal. Its normal for me anyway. I feel like Im too happy!! Trying to get alot in before treatment.

[FlGuy]

I agree that 'getting your poop in a group' beofre tx is a good idea and something worth doing. the list of stuff to do will feel endless  You don't know what tx will be like til you start and until then you fear the worst.  Since you're a geno 1 you'll expect to be on it a full year, so you'll get to do the stuff through every FL season and the summer months here are draining - even withou tx.  Starting in cooler weather seems to make sense since you'll need several weeks to 'acclimate' to the meds and the routine of tx.  In the meantime, and as you're 'poop grouping'  keep an eye on possible trials that might be available to you at UM.

[tulips27]

Well he did have a specific recommendation whether to treat. He gave me a time frame of this year I told him I was anxious..but I wanted to start after summer. He agreed. We went over blood work, and bx results..and he basically told me I have a good chance at killing this thing. I have to go back one more time for more blood work and then the story will begin. I also told him I have been waiting 5 years for a better remedy to come around. He sort of looked at me like I was off the wall. SO more blood work...and then will see. I was the one who told him I dont eve want to think about proceeding with tx till the winter. I have lots to do before that.  Sort of in denial right now??
take care
Last night I had read your post re: the fatty liver problem we had on the forum. I was eating corn on the cob. Never laugh with that in your mouth!! lol

[FlGuy]

Jeffers is a pretty decisive and definitive doc.  At least that's my experience.  Did he have any specific recommendation on whether to treat or not and if so did he give you a timeframe in which you should take action?  He was very specific with me, gave a timeframe in which I needed to start, dose,  duration and hematological instruction for tx doc and me.  Removing some of the unknowns, even though I know that some were somewhat arbitrary and subjective, was helpful to me in getting focused.

[tulips27]

How are you? Im genotype 1a. My viral load was 7million 2 weeks ago when I was tested.
I was tested 5 years ago and my VL was 1 million. I know VL has no bearing on the way we feel and I know it flucuates. Very hot..that why I couldnt thinkof tx right now..I will wait till X-mas.
Besided I just got my results I need time for all this to set in. lol

Hope your doing ok.
Here's to killing this virus forever.
take care

[Lilla]

what geno type are you? you may have mentioned, forgive me if you have posted that before.  has your viral load remained fairly consistent?    

I took my shots Monday mornings.   The first week was the only time I had flu like symptoms and they were mild - Tylenol took care of low fever and aches, which only came about for 2 days.  I had read that the peg-interf. peaks about 80 hours after administering and I do believe that as around Thursdays of each week I usually have the least energy.  However, some weeks prove me all wrong. I think that was the most frustrating - I  would never be a gambling person to say you will feel this way or that way on any certain day because  with me, I'd was  proved wrong.  One week would be a good one, the next would be all different.    Good Luck to You.  (I am in Florida also and the heat really has taken its toll on me.....can't be outside for too long, and I love being outside)

[tulips27]

You got that one right!! We sort of will be sharing Christmas together this year. Just hope I dont complain too much!  Feel good.
take care

[livindabest]

      The Heading was supose to be  ' Tulips my soon to be tx. partner'.      The censored word was not that bad , but now I know.  So.... We will laugh (and complain politely) to each other  through It !   lol    
                                       C-yas,      R.

[livindabest]

     Hi !!  
       I am on mainland on vacation so not checking forum every day, like when back home on island.   Hang in we will cruise.   Remember we will do it together, and will laugh (an *****) through it . I am tx in  Nov /Dec . No mattah what ,so I no worry .   Would be nice to have you on here to go for it with.  This family reunion has been good. I got to tell the ones that asked, about hep c, and let them know the facts and that I can handle it.  They are behind me all the way, so now I way committed.  Glad you put up profile,, still waiting to see pic! lol.                        Aloha ,,,
                                                 R.
                                    

[tulips27]

Hi It seems everyone does their shot on Friday. I probably will do the same. Im here 2 weeks but probably have been reading for at least 5 years...and have learned alot. Just now learning about tx.

It sounds like your very much holding your own. Thanks for replying.
I put the tx off for 5 years. Now its time for me to get real with this and treat.

best wishes
& svr

[VXman]

I think that you are very wise for soliciting feedback from each of the participants of this forum before you start treatment. It is almost impossible to receive this kind of emperical information ifrom books or libraries. You will be well ahead of the process by being an informed patient. After all, it is your body and mind, so you owe it to yourself and your loved ones. If there are any words of wisdom that I may impart to you, I would have to say to choose Friday evening as your consistent time for taking the interferon. I'm into my 12 week of treatment in a Prove 3 triple combination trial. I easily recalled from my previous experience on SOC, that my first couple of weeks on interferon was rough on me that evening and into the next morning. The interferon in subsequent weeks iwas easier for me to tolerate and has had a lesser impact on me as it relates to side effects. The issue: however, is that you will be expected to be consistent with your day of the week for the injection. I choose Fridays because I have the weekends off. If I felt weak with flu-like symptoms on Saturday morning: oh well - the dogs can wait a couple of hours before they get their walk.  

Regards

[tulips27]

Ive read your post and know you are at the end of you tx. Congrats!
I also read your having difficulties from your tx. You'll be better soon.
Your probably saying  yeah right..but takes time for it all to leave you body.
A long haul but ya did it.
Hope I can too.
The best to you.
SVR

[mustangshelly]

Your decision to tx is a good one. I know when I first read all the possible sides etc. I got freaked out..but I went ahead and my sx's came and went we all react differently to the meds. I wish you the best with tx..:)shelly