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Mood: alagirl
headachey, but otherwise ok ;)
About Me: Female, 41, AL, member since Aug 2007
Divorced mom of 19 yr old son (my heart and soul).  I'm in sales and work from
home most of the time.
... [More]

Got hep c through being raped in July of 2007.  I know for certain when I got hep c
because I have documented negative tests going back two years, the last one being
nine days before I was assaulted.  

I have normocytic anemia so hepc treatment is somewhat challenging and I've already
had difficulties with my blood count.  I began tx on 10-5 and so far I have had six blood transfusions.  Still, I think this is my best time to treat since I have a new acute infection and a bad genotype.  (1b)
------------------------------------------------------------
update - I treated acutely for seven months with riba and pegasys and I'm now SVR.  I thought about stopping tx earlier due to the research on acutes but my doc wouldn't sign off on it, so finally I went to UAB, and their new hepc doc blessed my stopping somewhere around 26 or so weeks of tx.  Thank God.  Then he said they probably would have blessed my stopping at 12 weeks since I was acute if I'd gone there in the first place.  Oh well.  live and learn. ;)

------------------------------------------------

I'd like to talk to you for a minute about another disease: Waldenstrom's Macroglobulinemia.
I know its a huge mouthful to repeat, but the even bigger problem is that its a rare, or what they call, "orphan" disease.  I believe only about 1500 people in the US are diagnosed every year. Waldenstrom's is a rare cancer, and unfortunately, one of those people is in my family.

As you can imagine, rare, or "orphan" diseases, as they are frequently called, don't get much in the way of research dollars.  And it makes sense.  Pharma Companies pay for research for the drugs they will be able to market.  And its difficult to blame them.  But many times, and this is one of them, there are treatment modalities out there already that may well work for Waldenstrom's, we just need the time and researchers allocated to do the research, and to test out these modalities in clinical trials.

Here is a link to a website where you can donate research dollars to this orphan disease.  This is the website of Steve Kirsch, someone in another family who is going through this.  He is loved by his family just like we love our family member.  But he's really been busy since his diagnosis.  He's put more of his own money into the research of this disease and others than probably anyone else, private or institutional.  Please visit his site.

http://www.bringlight.com/projects/show/127

http://skirsch.com/index.html

http://skirsch.com/wm/wm.htm

[Less]
Problems with insomnia and pain
Nov 25, 2008 06:39PM in the Hepatitis C Community
A few things. Foremost, its lovely that your husband has you to help him through this difficult time. Hep C is hard for...
DOUBLE SHOT...help
Nov 25, 2008 04:56PM in the Hepatitis C Community
Oh yeah, about the blotches. Sometimes I got them from both the procrit and the interferon and sometimes I didn't. So I...
DOUBLE SHOT...help
Nov 25, 2008 04:54PM in the Hepatitis C Community
I like Marcia's suggestion. Do you feel like you got hit by a freight train yet? I guess if you were really worried...

Getting Better


Oct 29, 2008 12:46PM
The exjade experience is improving some. I am having a lot of nausea still, but not as much of the other ummm... unfortunate bowel effects. So I may be able to hang with...[more]

Exjade


Oct 26, 2008 07:36PM
Exjade *****. I've half decided that the the way exjade really gets rid of iron is by giving you so much... how to put this delicately - "lower bowel dysfunction" - that ...[more]

Resimay 


Oct 24, 2008 10:56AM - 10 Comments
Too hoom it mae cunsern, I waunt to apply for the job what I saw in the paper. I can Type realee quik wit one finggar and do sum a counting.... I think I am...[more]
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celtic70
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celtic70
Male, 45 years
melbourne - Australia
Member since Jul 2008
Mood: celtic70 soldiering on
Journal Entry:   "So just when I had convinced myself to gi..." [Read]
Dec 22
I'm doing alright. I hope you are feeling ok...Take care and know you are in my thoughts. Scott
celtic70
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celtic70
Male, 45 years
melbourne - Australia
Member since Jul 2008
Mood: celtic70 soldiering on
Journal Entry:   "So just when I had convinced myself to gi..." [Read]
Dec 21
Hi alagirl Been a while since I last visited site. Just wanted to find out how you were going. celtic70
merryBe
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merryBe
Female, 57 years
portland - OR
Member since Jul 2007
Mood: merryBe 62 weeks down and 20 to go
Journal Entry:   "I just got to thinking how many infection..." [Read]
Dec 07
You're in my thoughts all the time, but especially today. hope you doing well, and had a great holiday. How's your health and hows your son. We miss you in here. mb
MSFEE
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MSFEE
Female, 36 years
Columbus - OH
Member since Oct 2008
Mood: MSFEE sorry im going to be away from the site for a while my laptop is in the shop it will be there for at least three weeks i will try to get to the site when i can
Journal Entry:   "My tumor is smaller than they originally ..." [Read]
Nov 10
Just a quick note to say hi! Your son is to cute he is yummy. are those his baby pictures?
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mremeet
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mremeet
Male
East Fun Buck - Burkina Faso
Member since Aug 2006
Mood: mremeet thinks the mood feature is gay

Male, East Fun Buck - Burkina Faso
debnevada
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debnevada
Female, 49 years
las vegas - NV
Member since Aug 1999
Mood: debnevada .SVR after 42 weeks of treatment and is eight months post
Journal Entry:   "DEBI FOX HAS HEROES Hi All, Most of yo..." [Read]

Female, 49, las vegas - NV
itcouldntbe
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itcouldntbe
Male, 26 years
Member since Sep 2007

Male, 26
child24angel
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child24angel
Female, 52 years
CA
Member since Aug 2006
Mood: child24angel In Loving Memory Nicholas 11/23/1981 - 07/27/2008
Journal Entry:   "I've received numerous notes and pm's tod..." [Read]

Female, 52, CA
justvlm
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justvlm
Female
TX
Member since Oct 2007
Mood: justvlm feeling better about hepc news
Journal Entry:   "Things to ask the doctor: 1. Ability to ..." [Read]

Female, TX
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