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Wigging out -- it's not so bad.

May 15, 2009 - 1 comments

My hair loss from treatment has been about 80% and I've lost my eyelashes and eyebrows too. (I'll take shot No. 37 tonight - out of 48).   I had thyroid issues early in treatment so I think that added to this hair loss issue.  The hardest part of the hair loss for me has been the going-to-work-in-a-professional-office thing.  It's been hard going to work knowing that I look like ****...seriously.  I bought a wig online about a month ago and I started out just wearing it for quick trips to the store where I wouldn't necessarily know anyone so that I could get used to the whole idea of it.  I couldn't quite get myself to wear it to work though.

This morning when I washed my hair enough more fell out that even "The Donald Comb-Over" wouldn't help so I pulled out the wig and put it on for work.  I had butterflies in my stomach over the whole thing and I found out pretty quickly that all my anxieties about wearing a wig were ridiculous because I've had nothing but compliments on my "new hairdo", not to mention the fact that it's a whole lot easier to pull out the wig than it is to try to make "no hair" look like hair.

I found that when I feel like I look better, I actually do feel better.  Before when I looked in the mirror, I saw a sick old woman staring back at me and, with the wig, I see...well, I see a sick old woman with great hair staring back at me.  :)

I have to give Tippyclubb credit for giving me the push I needed to get out the wig for work.  Her simple statement of "Since you bought a wig, you might as well wear it" just seemed so smart.  :)

One thing about treatment that I wasn't very prepared for was how it could take a 54 year old who looked 44 and turn her into a 54 year old who looks 80 (strike that), my mother is 80 and she looks better than me right now so I'll have to say 85.





Where did "me" go, part 2.  The reveal!

Mar 10, 2009 - 8 comments

You guys are all great!  I'm so much better today just from having people understand and say "I've been there"...etc.

I have to tell you all about something really coincidental that happened concerning my journal post yesterday.  Sunday night I started reading a book called The Grief Club by Melody Beattie.  The reason I decided to read this particular book is because a co-worker suggested it to me because of all the "grief" I have gone through in the past year...not necessarily all loss by death...but other things too.  My family has always been a very blessed family over the years in that we have really never had any catastrophies, etc...until 2008.  First was my shocking dx of Hep C, then my middle son was injured in Iraq 5 times and when he came home from Iraq he was immediately diagnosed with testicular cancer (he had surgery, radiation and we expect 95% success from that), then my beloved sister-in-law died after a 13 year battle with breast cancer, my brother in law went through prostate cancer surgery, another sister-in-law was dx'd and tx'd for breast cancer, then my sister was dx'd with breast cancer and she had her surgery last week.  It was one heck of a year!  Ever since I found out I have Hep C, there's been someone else to worry about so I never really dealt that much with me.  I postponed the start of my TX so I could get my son through his cancer treatment and then I started my TX in September and continued to stuff everything.

After reading the first few chapters of this book, I realized that I've been stuffing everything and putting on my POSITIVE face instead of dealing with anything and it's been taking a toll on me.  Yesterday, I decided to put something really, really honest in my journal instead of the positive face stuff and BAM! just like that you guys came to me and said some things that just blew me away and I immediately felt better than I have since last April when I first found out I have Hep C.

Last night, I was reading another chapter in this book and it totally explained what happened yesterday.  I'm going to quote a paragraph from that book (this is good stuff):  "It's not easy to have faith when we're burning in the fire.  We're not all going to get our miracles.  More times than not, the miracle we get is life as-is and no guarantees.  Plain faith, the kind most of us have been schooled in, applied to tomorrow.  It says, Things are going to be okay---if and when we get our happy ending.  When we talk to someone who has been where we are, we get the courage to have radical faith--the extraordinary kind.  It's powerful when somebody looks us in the eye and tells us we can do it and we are okay, because he/she has been where we're at.  Our bodies respond right down to our cells.  There's enough disaster and pain in our world.  Make a contribution.  Give people some hope."

Okay...you guys gave me the radical faith...and that is why I feel like a new person this morning.  You all made a contribution!!  Thank you all!  

I've been so programed over the years to believe that we all need to be positive all the time and not let negative feelings get to us so I've stuffed and stuffed.  I even believed that if I talked about my true hurt about something to people, it would actually be disrespectful to others who have a bigger hurt.  I do believe in being positive but I'm realizing that it's okay to feel pain and express it...just like I did yesterday.  Today, I am refreshed and I truly do feel positive -- but only because I let myself express and accept help from you all.

Oh...and another huge coincidence.  Melody Beattie (the author) has Hep C but I didn't know that until I got into the first few chapters of this book.  Not much has been said about it in the book yet but I see there's a chapter coming up.  I am totally curious about her feelings and experiences with Hep C and I can't wait to read that part.

I hope you all have a great day and know that you contributed yesterday!

Where did "me" go?

Mar 09, 2009 - 16 comments

I took shot No. 27 on Friday night and I have 21 to go.  I don't look like myself, I don't act like myself and I don't feel like myself.  So...who am I and will I ever get the feeling of "me" back?  I keep searching high and low for something that I can focus on that will make me feel better but there is nothing that strikes a spark in me.  I'm just blah, blah, blah and I'm just moving from day to day going to work and then back home to rest so I can go back to work the next day.  There isn't anything more than that now.  I can't wait for TX to be over so I can get back to feeling...feeling anything.

Undie

Oct 08, 2008 - 2 comments

I just learned that I'm undie at week 4 and since I'm at 1B and I started with a very low VL, I might qualify for a shorter duration???  I'll have to ask my doc about this:

March 6th, 2007

PEGASYS(R) Gets European Approval for a Shorter Treatment Duration for Some Genotype 1 and 4 Hepatitis C Patients who Show a Rapid Response to Therapy
http://www.prnewswire.co.uk

- Shorter, Simplified Treatment Option May Encourage More Patients to Seek Treatment

Some hepatitis C patients with difficult-to-treat HCV genotype 1 who respond quickly to treatment with a combination of PEGASYS(R) (pegylated interferon alfa-2a (40KD)) plus COPEGUS(R) (ribavirin) can benefit from a shorter and simplified course of therapy, following Thursday's Commission decision. With the new approval, a subset of patients with genotypes 1 and 4 HCV who achieve rapid viral response can now receive a shortened, 24-week duration of treatment with Roche's PEGASYS plus COPEGUS. This is half the normal treatment duration.

Shorter, Simplified Treatment Shows Excellent Chance for a Cure
The EU approval is based on data from two pivotal clinical trials for PEGASYS plus COPEGUS.(1,2) Results from these trials show that among patients who achieved a rapid viral response (undetectable viral load at week 4) in the first month of treatment up to 93 per cent of patients with genotype 1 HCV with a low pre-treatment viral load and 83 per cent of patients with genotype 4 were cured following only 24 weeks of therapy - a similar cure rate to that seen following 48 weeks of therapy.(3)

"This is excellent news for patients with hepatitis C," said Dr Peter Ferenci, Professor of the Department of Internal Medicine IV, Gastroenterology and Hepatology, at the University of Vienna, Austria. "This means that patients can find out within one month of starting therapy if they have an excellent chance of being cured and can benefit from a shortened treatment duration. This is likely to encourage patients to seek treatment and motivate them to stay on therapy."

New Recommendations for Treatment
A shorter, 24-week course with PEGASYS plus COPEGUS is now an option for the following patients:(4)

Genotype 1 HCV with a low pre-treatment viral load (defined as <800,000 IU/mL) and an undetectable viral load at weeks 4 and 24;
Genotype 4 HCV regardless of pre-treatment viral load and an undetectable viral load at weeks 4 and 24.
"This licence change reflects Roche's commitment to finding better treatment solutions for patients with HCV by improving treatment with existing therapies and developing new medicines to treat hepatitis C," said Claire Steers, PEGASYS Lifecycle Leader at Roche in Basel, Switzerland. "Roche is committed to finding solutions for a broad range of hepatitis C patients by continuing to simplify treatment with PEGASYS."




(http://hivandhepatitis.com/hep_c/news/2008/101408_b.html)

24 Weeks of Pegylated Interferon plus Ribavirin May Be Sufficient for Selected Genotype 1/4 Chronic Hepatitis C Patients with Rapid Response

By Liz Highleyman

Given the side effects and cost of interferon-based therapy for chronic hepatitis C virus (HCV) infection, researchers continue to explore shorter treatment durations, especially for individuals who respond rapidly after starting therapy.

The current standard of care is 24 weeks of pegylated interferon plus ribavirin for chronic hepatitis C patients with HCV genotypes 2 or 3, while those with hard-to-treat genotypes 1 or 4 are treated for 48 weeks. Many experts recommend longer therapy for individuals with HIV-HCV coinfection.

In a study described in the August 2008 issue of Gastroenterology, Peter Ferenci and colleagues from Austria aimed to determine whether 24 weeks might be adequate for patients with HCV genotype 1 or 4 who achieve rapid virological response (RVR), or undetectable after 4 weeks of therapy.

The study initially included 516 genotype 1 or 4 patients treated with 180 mcg/week pegylated interferon alfa-2a (Pegasys) plus 1000-1200 mg/day weight-based ribavirin. Participants who did not achieve RVR (HCV RNA < 50 copies/mL) at week 4 were randomly assigned to receive 48 or 72 weeks of treatment (this part of the study was ongoing at the time of the report).

Among those who did achieve RVR, the investigators analyzed rates of sustained virological response (SVR), or continued undetectable HCV viral load 24 weeks after completion of therapy.

Results

• 150 of the 516 patients (26%) achieved RVR.

• 143 of the 150 completed 24 weeks of treatment.

• The overall SVR rate in this subgroup was 80.4%:

• 78.8% for genotype 1;
• 86.7% for genotype 4.

• The following factors were predictive of RVR:

• younger age;
• lower body fat;
• low baseline HCV RNA (< 400,000 IU/mL);
• HCV genotype 4 rather than 1.

• However, once a person had achieved RVR, no baseline factors significantly predicted SVR.

• Treatment was well tolerated overall.

Based on these findings, the investigators concluded, "This prospective study confirms that a 24-week regimen of peginterferon alfa-2a plus ribavirin 1000-1200 mg/day is appropriate in genotype 1 and 4 patients with a low baseline HCV RNA level who achieve an RVR by week 4 of therapy."

Medical University, Vienna, Austria; Kaiser-Franz-Josef-Spital, Vienna, Austria; Wilhelminenspital, Vienna, Austria; Elisabethinen Hospital, Linz, Austria; Hospital Hietzing, Vienna, Austria; Medical University, Graz, Austria; Rudolfshospital, Vienna, Austria; LKH Hörgas-Enzenbach, Gratwein, Austria; Krankenhaus, Oberndorf, Austria; Roche Austria, Vienna, Austria.

10/14/08

Reference
P Ferenci, H Laferl, TM Scherzer, and others. Peginterferon alfa-2a and ribavirin for 24 weeks in hepatitis C type 1 and 4 patients with rapid virological response. Gastroenterology 135(2): 451-458. August 2008. (Abstract).