Just diagnosed- terrified and alone.

[DayLyn]

I was just recently diagnosed - March 2006.  1a.  In BC, Canada.

I've finally gotten the courage to post, but have been reading posts here for weeks.

I feel alone in this - the stigma is great, and many people are ignorant or uneducated, or both.

I'm being screened for treatment next Tues.

My question was - Pegasys or Peginteron?  Any opinions or suggestions would be welcome.

[sunspot]

I hope you see this post as it is a bit old and I missed your reply in Sept. I never hear of underweight being a factor in treating. Over, yes but not under.


bowdeen
Why don't you post at the top of the more active threads?I ask because not many folks are bottom feeders, like me, and you will get more responces that way.
I hope you are well today.
Dana

[bowdeen]

hi i am new here too i posted a couple of times here. i am in bc canada too.hope tou are doing well.my treatment starts jan 2.this is a great place to come and get support and lots of information.good luck.your in my preyers.

[DayLyn]

Thanks for posting.  I have had my treatment pushed back, which is a real downer.

My doctor thinks I'm a little "underweight" and wants me to try and gains a few pounds before starting.

We are meeting next tuesday to do the needle training.  I will be weighed on Friday, and maybe set a new date then.

:(

Daylyn

[sunspot]

Your first shot is tommorrow. Let us know how it went. I have my fingers crossed that you have no sides.
Dana

[DayLyn]

Hi again Donna....
I did post my e-mail earlier- feel free to use it.  I know how hard it is to feel alone - but u r not.  U have me.  Anytime.  Pegasys is the standard treatment for HCV, along with Ribavirin.  I have to keep it short here - I'm at work, but please do send me an e-mail.

Keep me posted on the Dr. and labs, and such.  

Yes, I do have some sx.  mostly sick to my stomach and fatigue.  I also have very sore bones and achey muscles.

I've been somewhat depressed as well, but have to keep your chin up and smile on your face......

Take care.  I hope I hear from u soon.

Daylyn

[ex-city-slicker]

Hi Daylyn,

I have been watching for your response. I start reading through some of the other postings and find it upsetting some times.  I had blood work done @ my PCP to confirm the the DX. The PCP made an appointment for me w/the specialist. I have no idea what to expect. I have tryed not to think about it, and have been keeping busy. What is Pegasys?  Do you have symptoms?  I have lived in NH almost 3 yrs.  I am from Phila.  I moved to NH for some peace.  I like the mountains. I live w/someone. We have been together 6 yrs. He is supportive, although I have been spending too much time alone on the weekends, because he is working. I don't have any close friends. I have work friends, but  I would not  share my HVC Dx with them. I am going to go hiking, w/a few co-workers on Sunday.

Take Care,
Your in my thoughts, and I do pray.

Donna

[ex-city-slicker]

Hi DayLyn,

I was thinking about you.  How did you make out at the doctors?  & how was the SPA?  My anxiety level is alittle high, I think it will be until I see the Doctor on 9/28.  

Donna

[DayLyn]

Good morning Donna.

The dr. went well.  I am very pleased with my new specialist.  It took me a few tries to find one that I felt comfortable with.

We discussed all the treatment options (there aren't many), and decided that Pegasys is probably the one for me.  I will be seeing him again, prior to starting treatment, so I have some time to think of any more questions.  

My start date is still Sept 22nd.  I will keep you posted on how that goes, and what is happening.

I remember waiting for that first appt. - what a horrible few weeks that was.  I didn't get much info. that first time, the Dr. spent about 5 min with me, told me to go get some blood tests, and come back in 6 weeks.  Boy, was I devastated!

I hope this is not the case for you.  Where are you at?  Have you had any blood work done yet?  Do you have a specialist?  I hope you're hanging in there.  Do you have support at home? A Where do you live?

Take Care. I'll keep you in my prayers.
Day

[DayLyn]

I know what you mean about needing the day off.  I spent one whole day at the spa - just cause.

I was exactly where you are about three months ago.  Gosh, can I ever feel your pain.

I found out from routine bloodwork prior to heart surgery.  I was worried about everything under the sun, but never, in a million years did I think I would have hep c.

I go see the specialist tomorrow, and yes, I have tons of questions - all written down - three pages full.  I am to start tx Sept 22nd.  I will keep you posted for sure.  I would like nothing more than to have someone to go through this with.  People in our lives who don't have hep c just will not ever understand.  Please feel free to e-mail me @ ***@****.

I will add you to my prayers tonight Donna.  Funny - I was never religous....

[ex-city-slicker]

Dear DayLyn,

Pleas call me Donna, as that is my name.  I was very happy to see your response, it made me fell better, almost made me cry. I see a gastro doc. on 9/28. I have been very emotional all last week.  I was just DX on Wed., but I got the news in the mail,last Sat.  I applied for life insurance & was rejected. When I read the letter, it felt like I was given a death sentence. I have a positive outlook on life & have overcome many things.  This is just 1 more to add to the list.  I went into some of the chats rooms on other sights, and felt worse, afterwards. I want to connect with someone through this who will understand, and stay tough.  I think that is you! It great to meet you, please stay in touch.  Your doc. appointment is before mine, I'll be thinking if you. Are you going to write down questions for him/her. I have been checking information online like crazy. Today  I' m going to give myself a break and go out to buy a new pair of shoes!

Your new friend,Donna

[DayLyn]

It's nice to not feel all alone...  

The news is hard when you first get it, I guess it takes a little while to get used to it.  I still haven't.  I am going in on Tuesday to discuss which treatment the specialist thinks is best.  Will be staring on Sept. 22nd.  I am halfways excited to get started on killing this thing and halfways completly terrified.

Please keep me updated, and let me know what is happening with you - we can go through this journey together.

I wish good luck, comfort and strength to you!

Day

[ex-city-slicker]

Hi, I just got DX last week.  I also am terrified and did feel alone until I found others on line. .  I cryed off & on all last week. Have you dicussed TX w/your docotr yet.  What has helped me over the last week , is understanding HEP c is not a death sentence, but it is going to be a battle.  I'll be glad to be part of your support system as I start my journey to battle this V.

DS

[ex-city-slicker]

Hi, I just got DX last week.  I also am terrified and did feel alone until I found others on line. .  I cryed off & on all last week. Have you dicussed TX w/your docotr yet.  What has helped me over the last week , is understanding HEP c is not a death sentence, but it is going to be a battle.  I'll be glad to be part of your support system as I start my journey to battle this V.

DS

[strator]

DayLyn,
Welcome to the forum. You sure are talking about a familiar place, with the fears and the worries in the beginning. We humans should all  put our heads together to come up with a name for that room, where we feel overwhelmed and alone and afraid and uncertain about the future. I

[FlGuy]

Which interferon to use? In the words of William S. "2a or not 2a" or "2b or not 2b".  As you know the are two choices with traditional combo therapy Alpha 2a or Alpha 2b.  Studies that I've read show not appreciable difference in the effectiveness of either.  If you research further you'll see a lot of these studies are sponsored by the drug makers themselves and the people who conduct a lot of the studies are funded by the makers.

I am facing the same choice and don't know what to do. The first time around I used Alpha2b (Shering's).  I got to undetected virus levels and then relapsed after treatment (tx). So I've decided to take a scientic approach to the decision. But, I am undecided even with what scientific approach to use.  But, it will be one of coin tossing, rock-paper-scissors with my self (this one needs more thought), throwing a syringe a a target while blindfolded, or by polling this group (ala Family Feud).  So stay tuned.

One hint, if you are a heavy person (and I don't mean ponderously thoughtful but ponderously large, alpha2B might be for you).  If you are normal size Canadian, it's back to a toss-up.

By the way, love your geese but they **** all over my neighborhood.  Good luck.

[Moniker]

Don't feel too alone; you have this web forum. Maybe you could find a support group in your area. There is a good support group at my VA Hospital in Connecticut. It's a good place to find out more about treatment, and to know that your not alone. There might be a hep c a support group in your area.

I didn't worry about the stigma; I told everybody about my hep c and treatment. I didn't have any problem. People we're nice to me. Maybe it would be wiser to not tell people because if you tell one person, you better expect that everyone will hear about it. Still I told people and nobody seemed to shun me or anything. When I talked about it, I always said that hep c isn't casually contagious, you can only get it from blood transfusion, or if you share a tattoo, or that sort of thing. People gave me a lot of nice support and they still wanted to go out with me, or come over to visit.

Bob

[jmjm530]

Day: and many people are ignorant or uneducated, or both.
------------------------------------------------------------
(With my best DeNiro Voice)...."Ya talkin' to me !!!!   :)

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Pegasys or Peg Intron?

Not surprisingly, the studies sponsored by Roache suggest Pegasys and the ones sponsored by Shearing, suggest Peg Intron :)

Probably most people here treat with Pegasys and probably because their doctors recommended it and probably because Roache (makers of Pegasys) have a bigger marketing budget in the States.

Personally, I treated with Pegasys -- successfully I might add -- but from what I've read and heard, to do it all over again (and believe me I have no desire to :) ) I'd probably go with Peg Intron due to the molecule size and some other stuff I really don't understand all that well.

Molecule stuff aside, Peg Intron is dosed per body weight, while Pegasys is dosed the same for all weights. Therefore an argument could be made that if you're on the Twiggy side, you get more drug for the pound (kilo in your case) if you treat with Pegasys. On the other hand, if you're on the heavier side, Peg Intron may make more sense. There's also the issue which drug your medical team has more experience with, however I imagine the managment of both is fairly similar.

Anyway, welcome to the discussion group and try and learn as much as possible before making any decisions.

All the best.

-- Jim

[Sweetie6852]

Join the fridge brigade - someone posted that to me and it made me laugh.  I start today with my first tx. And the PegaInterfuron is in the fridge like the 10,000 lb gorilla.  Again I was petrified when the Dr told me.  It was how could I have that and what is it and how did I get it. The unknown is scarey.  I'm single and high stress job and it's like I'm at the peak of my career and this has to happen now.  But I'll be tougher, more educated, more empathetic to others going through this and I will get through this, but I won't be able to do it alone.  I researched, and learned a lot.  The people you discuss things with here, you think sometimes they read your mind and tell you things you haven't asked yet but were going to. They become your support and you can learn from the experiences.  Everyone here is so helpful, caring and kind.  You need a positive attitude and a will to get better and you will.  Good luck and welcome.

[rifleman]

Jim works by himself because nobody can stand to be around him for long.
Just kiddin, Jim.  How did those beverages taste w/ your triple lobster platter?
As for pegasys v. pegintron. . . . .  My opinion is that Pegasys is like Jennifer Aniston and Pegintron is like Angelina Jolie.  Jennifer is very nice, but sort of vanilla.  Jolie is salsaaaa.....
DJL

[jmjm530]

I guess that would make Consensus Interferon (Infergen) more like Scarlett Johannson :)  Yeah, Lobster dinner was great with a couple of cold ones! May have to repeat soon. Hope this finds you well.

-- Jim

[FlGuy]

If Pegasys is Jennifer Aniston and PegIntron is Angelina Jolie then ribavirin must be Roseanne Barr.

[Snookmiester]

No wonder I threw up after ever Riba!!!!!!!!!! Agggghhhhh!!

But personally, if I had the choice described to me like the ole' Rifleman put it, it would defiantely be Pegintron for me. I have Anniston at home already!

[cuteus]

welcome to the place you will call home during tx, a lifeline. Ignore the hissing fits when they happen and enjoy the happy chats and jokes. \
Choose any of the interferons, they are statistically the same as stated by some. Some that have relapsed with Pegintron try Pegasys and get SVR and some that relapsed with Pegasys try Pegintron successfully.
Members have said that pegasys was easier on the sides so I chose it. I liked the vials because I squeezed every drop out into the syringe. After they switched me to the prefills, I was mad!  But the prefilled syringes are very convenient to have.  
I got my SVR with Pegasys/copegus after 72-74 wks of treatment.

[Mister beagle bailey]

Welcome to the forum, and just know you'll never be alone here.  You'll find a lot for support and knowledge on this forum, from people who care.

Hang in there and let us know how you make out.

Beagle