love to all

[starfish30]

hi everyone -

i read this forum every single day, looking for someone to relate to
and to see everyone's progress. i am amazed  everyday of the support and courage i see in so many newbies and those currently under tx.
its like our own little world, its unfortunate we all have to meet this way but its a blessing we have each other.

just wanted to say to everyone that there is a sense of comfort to know i have you all!

i hope a blesseing is bestowed on each and every one of us and i will have you all in my prayers!

m

[annainitaly]

starfish
yes I have the same feeling as you. I really found a great support and got affectionate to these people. I feel lucky and thankfuI I came across this forum.
may you keep  the serenity, energy and determination you are having now.  and when they will be thinner, knowing that this incredible community will help in the  "weak" moments is a great resource.


travelmom
it is so good to hear that amanda is recharging some of her strength from here. she certainly has an enormous energy, and she needs it all to keep fighting. you and your family are in my /our thoughts. may you all succeed in your effort. we are holding your hands.

love from anna

[Showboat]

Starfish.....Your words and thoughts are uplifting....and you are thought of the same way.  Peace.

Jodi::::Thanks for the update.....Amanda just amazes me....she is a special young lady.  I am praying for her SVR.

TonyZ:::;Your posts are always so warm and loving...I just want to say "thank you".

[cuteus]

You are absolutely lucky that this doc is willing to go beyond the established standard...very fortunate indeed. If you check the hepatitisdoctor.com, you will see how Dr. Cecil adjust his dosages per individual out of norm casses.
with a dr. like yours, you have a great chance of getting a cure.


I pray this is the time, your family is released from the hcv grip.

[TravelGrl]

To all:

I wanted to thank each and every one of you for all the love and support that you have sent my daughter, Amanda's way.  You  can't imagine how much it means to her and has helped her cope with this next round of treatment tremendously.. Facing the fact that she has this horrible disease and is not alone is bitter sweet... She has received over 200 notes from people all around the globe...It is just wonderful.  I

Amanda took her second Pegasys/Actimmune shot on sunday.  She experiences a mild fiver and headache from time to time, but that is really it.. She gets up, goes to school, cheer, work, etc...so she is definitely hanging in there, to say the least.

Last night Amanda had to go for an MRI/MRA...She had an elevated AFP(tumor marker) and since she already has cirrhosis, they needed to do this testing.  They are almost sure it will show nothing, it was just a precautionary measure...so wish us luck...

Amanda or myself will continue to post updates either here or on her site and keep you all updated on her newest progress....

If you would like to visit her page please do so...she is trying hard to get back to each and everyone that emails her or leaves an email adderess...which has been so many of you...just give her a little time, she is trying to answer in between school and also adjusting to the meds..

I would also like to thank my good friend Miles for making this page up for Amanda...with so much going on in his own life right now, for him to take the time out to do this for us has just been heart warming, to say the least....

Thank you!

Love to All,
Jodi/Travelmom

[Tony-z]

You have created us to live in community,
O God of love;
bless our friends who provide us
with the grace and love of an extended family.
Endow them with the riches of your blessings:
good health, sight, and mobility,
that they may enjoy the wonders of your creation
and share their delight with others.
Bless them with keen minds and compassionate hearts
that they may create a better life for all.
Guard them from injustice, oppression, and evil
that they may know freedom and hope lifelong.
In their waking and in their sleeping,
in their laughter and in their tears,
surround them with your love
until the end of their days;
and so bring them to eternal life in peace.

         <B>Through Jesus Christ, our Savior.</B>

                    <B>Amen.</B>

        This morning I can rejoice. For when I need encouragement I come here, When I am suffering, I come here, When I feel so lonely and tiered because of TX I come here.
What I find are friends like you <B>Starfish30 and all the rest</B> To talk to learn from and get revived.

              Thanks to all.

               Bless all


                 TonyZ

[TravelGrl]

Yes, I have heard of this...quite often

My daughter, Amanda was on double (full) dose of PegIntron...The insurance company asked some questions and the doctor had to write a letter stating that she had a "life threatening illness" and does not respond to the "normal" dosing protocol.  She was approved almost immediately.  You may want to have your doctor write you the same letter and send it in with the script to save time...another thing that may help is to collect some research (plenty out there not) showing that higher doses work in some people that are not responding to the usual doses.

Hope this helps and please keep us posted.

Good Luck!!
Jodi

[Amerabrit]

What a lovely post to read, it's great to know this forum is of help to you.  Very best of luck with TX, wishing you SVR:).

[Amerabrit]

Thanks for the update on Amanda.  May you all continue to stay strong as individuals and a family unit.  I wish you all the very best possible TX outcome..

[LvdByGod]

thanks starfish! i feel the same about you!!!
you're in our prayers too...and may you also be blessed!!!

I have a little question if you don't mind me asking on your post starfish?...hope ok...

Q?
Has anyone heard of a doctor being able to prescribe MORE than 180ml of pegasys a week?  my specialist wrote me a prescription for 240 ml of pegy, weekly...that's 60 more ml's than the normal 180 that i took for the last 7 months...(some of you may recall i still had a RNA of 2,000 iu of virus at 24 weeks for type 3a. so i'm either a slow responder,nonresponder,or (?)

Doc said he didn't know if my insurance will cover the new dose of peg...and i was also thinking, i don't know if they can dispence it in that exact amount...to me it makes more sense to order 3 vials for 2 weeks and let me use about one and a half one week and one and the other half the next week...i just can't imagin them making or having a vial of the exact amount he requested from Pegasys...what do you guys think?...ever heard of such a thing?

He agreed with me that 180ml is NOT nessesarily a "correct dose" for a person who is my weight/BMI...he wants me at a higher dose....(my bmi 7 months ago was 49% and due to weight loss from tx it is now 43%, still way too high obviously...
(a healthy bmi is 30% or less)... He will be leaving my copeg at 1,200mg.  

if worked out,this will be my new regimen...that is,"if" Pegasys and my insurance company will allow and supply it.. if not, he will switch me to the "weight based" pegintron,(i weigh 225 lbs...how many mg's of Pegintron would that be?)

He wants to see me again in two weeks after i begin the new regimen...i guess to see if i'm still alive!!! :O}

he is a very serious dr. and seems very intellegent...an old timer, and blind...he has an assistant to help him read charts and keep notes...His name is Alfred Baker from Northwestern Memorial Hospital in Chicago...hope he is as good as he is serious!!!

thought someone might think this interesting...and there might be others here that are overweight. something to think about BEFORE starting tx...

[jonihs]

Many blessings to you also, and may your journey ahead be symptom free and successful!  Joni