Caroline's Blog Within a Blog.....to be continued

TUESDAY, JANUARY 26, 2010

First time for everything....

So this is my first time writing a blog. It will be the first time I also talk about my Hep C. I have lived with this now for about 30 years, I figure, and the time has finally come to try and deal with it. I will go next week for my first visit to try and get enrolled in a new Study to treat and eradicate this viral timebomb that I have been worrying about for 10 years now. I'm nervous, anxious, excited. I will try to keep this updated with my feelings, troubles, etc that go along with this long treatment.

As a side note, it's bright and sunny here, but they forecast ran this evening. I am hoping they are wrong. :)

TUESDAY, FEBRUARY 2, 2010

First appointment for the study...

So today I had my first appointment with the medical research group that will be doing the study I'm trying to get into. I had thought I might actually be starting the treatment today, but the visit was the first of their screening process. Guess they need to make sure I qualify for their study. My liver doctor is helping to run the study as well, so I had assumed I was a shoe-in. Anyways, they took about 7 tubes of blood, and did an EKG and a physical to make sure I was ok. My bloodwork will take a week to get back. At first they told me it could be as long as 8 weeks before I could start up on the treatment, but because I am a patient of the study doctor, it might go quicker. So, I probably won't be on the juice until next month. One thing I am hopeful for is that my liver biopsy from 2007 is sufficient for them. They want one every 3 years, and it will be 3 years to the day next month. I REALLY do not want to get another one so soon. The thing that was a little un-nerving was when they read the consent form. It had pages of possible side effects (I guess some aren't just possible but most likely probable) and how they can try and deal with them all. It went over the amount of pills I will need to take daily. I new I would have to take some pills, but they said it could be as much as 15 pills a day! So going from taking no medication daily to 15 will be interesting. My stomach is upset just thinking about it. The other thing that was interesting was how I would have been required to take birth control pills, even if I had my tubes tied. Luckily, (I say this now), I had a hysterectomy 2 years ago, so I will not have to take those pills on top of the others. Guess they can't take any chances that a woman might get pregnant in the study, as the baby would have to be aborted.

So for now I wait til the next phone call, which will be next week. I still need to get a couple more tests done, but none are invasive or painful. I will update this when I know more.

FRIDAY, FEBRUARY 19, 2010

Last test before the study starts...I hope.

Got a call from the research group. All my blood work came back, and the results were all within their boundaries. I needed to go get a chest xray next. I asked about the liver ultrasound, and they said it would not be needed. And, they said my liver biopsy from 3 years ago is sufficient as well. So I ran down, got the xray, and now am waiting again to hear what the next step is. I believe, there are no more prelim tests needed. The next visit should be for when we actually start on the meds. She said it could be as soon as next week. It's getting a little scary now, knowing it's coming up so quick. I'll post again, when I have more to report.

FRIDAY, MARCH 19, 2010

It's begun...

Well yesterday was the big day. I have started my treatment. I took my first interferon shot. Was very nervous about the shot...I hate needles. It's a shot/pen device though, so the needle was very short and very thin. I decided rather than having the nurse do it, and then telling my husband how, I would bite the bullet and do it myself. It was a piece of cake. I went home and took my first dose of Riboviron, had lunch (they say it's best to take that stuff with food) and then went home. By evening, I felt like I had the flu...chills, aches, and a headache behind my eyes. I took a nap, had dinner, and then noticed I was hot. I had a fever too. Took a couple tylenol, and went to sleep. Today, the chills/fever are gone. Fell pretty good...have a small headache, but nothing bad. Hopefully, thats the last of the flu-like symptoms I will feel until next week for my next shot.

They packed me up with all kinds of stuff, and it was overwhelming. I have an electronic drug diary I have to use every night to input what pills/medicine I have taken. I have to make sure I take my blood pressure the day before my next injection. I have to note all over-the-counter stuff I take to combat side effects. Today, I don't feel so overwhelmed.
While I'm glad I no longer am waiting to start this thing, I'm apprehensive about what is to come. Guess I'm just a worry wort.

MONDAY, MARCH 22, 2010

So far, so good...

The weekend went pretty well. I am doing my ribavarin doses, twice a day. Have not had any bad side effects from it yet. It seems so far, the only bad reaction was to the interferon shot, and that only lasted 12 hours. I will keep my fingers crossed that is the worst of it. I do seem to feel a little itchier than normal, but the little bit of a headache I have had is gone. No digestive problems to report.

I am not a pill taker. I have never been on any prescribed medication, except for antibiotics when they were needed. It's quite an adjustment for me to now have to remember taking pills twice a day. It will be even more annoying when I start taking the 3rd drug, which I will need to take 3 times a day.

Well thats it for now.

FRIDAY, MARCH 26, 2010

TGIF!

Yay it's Friday. What a long week. While I am not having any troublesome side effects so far, I am tired a lot. Been taking naps in the afternoon, and then sleeping through the night as well. Thursday was my 2nd injection. Since I knew more of what to expect, it went along better than the first shot. Speaking of my first shot, I have a bruise there. Been going on a week now...it doesn't seem to be fading either. I asked my doctor about it...they said if there is no pain, then don't worry. I have an appt to see them next Friday. I'll see if it's still there at that time.
I have all these things I want to do this weekend. I'll see if I'm not too tired to do them all. :)

Wednesday, March 31, 2010

So things seem to be going well. I have not been overwhelmed with any crazy side effects yet. I worry something will happen down the line, but so far nothing is too bad. I've been very thirsty, so trying to drink lots of water. I normally have caffeine free diet pepsi, but I've been so thirsty, I find I can drink a 6 pack easily. Don't want to drink that much soda. Of course, all the drinking is also making me pee more often as well. Been noticing my skin seems to be very dry, so using more skin lotion. My initial injection site still has a dark blue bruise...gonna have to have it checked out this Friday at my bi-weekly checkup. I've also been very tired. Been taking naps in the afternoon, and still am able to sleep through the night. Have also been getting out of breath easily...I recover, but that is a new thing to me as well.

Not sure when I will know if things are working yet or not. I'll ask this Friday and find out more. But so far so good. Have not had to miss work or not do anything I wanted to do.

Laterz....

MONDAY, APRIL 5, 2010

Another shot, another day...

So took my 3rd interferon shot last Thursday. Did this one in my thigh as it seemed my stomach area was getting kinda sore. My jeans are a little snug in the waist. :) So prepped the area on my thigh, stuck the needle in and...eeek! Forgot to set the dosage on the syringe. Had to pull the needle out and do that, and then stick again. Won't forget to do that again! It seemed to burn a little this time when I pushed in on the plunger. Other than that, it's ok...no bruising, no swelling. It does itch from time to time. Felt a little crappy later in the day...sensitive skin. Did not get a fever.

I've been getting itchy...scratched a couple spots on my back, and have one on my chest as well. I will have to make sure I use my eucerin lotion to help stop the itchiness. Still feel pretty tired most of the time.

Found out some interesting data on my Friday visit to the clinic. My starting viral load number is 4,260,000. In order for this treatment to be considered working and effective, that number needs to drop 2 log. That means it needs to drop 2 decimal points to something like 42,600. This is measured at week 12. However, I will know if something is happening this coming Friday. It probably won't be dramatic, but I would expect to see a drop of some kind. I will also know if I am heading towards anemia this week as well. I'm keeping my fingers crossed for all the tests.

FRIDAY, APRIL 9, 2010

4 shots down...44 to go.

Took my 4th peg-interferon shot yesterday. Put this one in my lower belly, like my first 2. The one I did in my thigh is pretty red looking...like a rash. It was a little itchy...gonna see if it fades a little. So far everything seems to be ok, as far as side effects go. Still tired, and getting more itchy. I have some itchy spots now on my back, and on my chest. And on my ankle. Will have to ask the doctor on the 13th, when I go for my next checkup. I may know if the treatment is working as well that day.

The initial bruise I have on my belly is finally starting to fade. I have noticed my eyesight is more blurry than it was before I started. Not sure what that is all about. I will ask the doc that as well. I think next week, I will start up on the boceprevir. Joy...more pills. But, I have been reading alot about boce and everyone that has taken it, seems to have cleared the virus. Something to look forward to!

Well thats it for me...laterz

THURSDAY, APRIL 15, 2010

April 13th visit update

Went in for my next check up get more blood drawn, and this time see my doctor. He went over my numbers...this is after 2 weeks on treatment, using the peg-interferon and riba. Starting viral load was 4,260,000. As of 2 weeks it's 680,000. Yay! I am hoping it doesn't start going back up. However, my red cell count has dropped, and so has my white cell count. That is normal, but still something to keep an eye on. I started on the boceprevir on the 13th as well. I have to take 4 horse pills, 3 times a day in addition to the riba pills. So far, no side effects from the boce that I can notice.

I started visiting a hep c forum, and that has been a great find. Lots of people like me who are going through treatment, and have gone through treatment. One woman was on my exact treatment, and said she was cleared after 6 weeks. We'll see if I get the same results.

Thats all I got for now...laterz.

MONDAY, APRIL 19, 2010

Wow...I'm anemic already...

Got a call from my research team. My blood draw on April 13th shows I am still trending down into anemia territory. They have now put me into one of the test ARMs for the study. I have reduced my riba dose by one pill...so now I take 2 in the morning and 2 at night, instead of 2 in the morning and 3 at night. This past weekend I was just exhausted...all day Friday, most of the day Saturday, and Sunday too. Tried to catch up on rest. I am hoping the riba reduction will bring my red cells back up and this will help with the general exhaustion I've been feeling now for the past week or so. I don't know how long it takes for the body to rebound. I have to go in tomorrow for another blood draw to see what is happening. I'll know more by the end of this week.



Laterz...

I'm a fighter from way back....... Helena

I found out I had Hep C in September 2007. I was caring for my husband who was going through cancer treatment. Unfortunately he didn't make it and died in November of that same year. It was not a good year. With all the rest of the stress of children and babies and custody going on with my son.

I waited until 2009 to start tx. I was excited about it too. When I found out I had  Hep C I told the doctor I had caught Hep B at work and he said I could have caught it at the same time. Although when I was a teen I experimented 4 times with needles so it may have been that. I didn't take treatment for Hep B because I didn't know I had it. I just felt really tired and had the diarrhea and figured it was the flu. I called in sick for a few days. Its hard to remember exactly how long I was sick. That was in the winter of 91-92. In the spring my doctor said I had a history of Hep B, so my body had done its work and killed that on its own. I was lucky. I really cant be sure of how I caught the Hep C, but it doesn't matter to me.

When I started the tx I was so positive of doing it I just brought the shots and pills home with me. That night I got the shot all ready and was holding it to my stomach and paused .. I just sat there holding it and I just couldn't put it in. I started whining and my son came to me and did it for me. He was my hero, and after that I just did it without any problem. I had never stuck myself before you see.

I didn't get sick or feel much of anything at first. Just slowly I got tireder and tireder, loss some hair, started itching and lost my appetite. I couldn't hike anymore because I had been hiking 3 to 4 miles up and down steep hills. I tried it but I lost my breath and my heart went crazy beating really fast. My hemoglobin levels were were falling as they do and were down to 9.4 and they pulled me off tx. I asked about the emergency drugs, all I got for an answer was "who said anything about that"? The nurse acted all scared and said we don't want to have to do a transfusion. Then she left the room and came back in and said they were pulling me off for 2 weeks. This all happened in week 18, so I finished 18 shots. I was clear though so I thought that was good.

I moved to Florida then and sought other places to go to. After I had called my old medical facility and asked what the doctor said and they wouldn't answer me. I was confused again, so I just figured since I had cleared, maybe I would be lucky and it would be enough. I decided to use a heptologist I had heard of in Florida and talked to him and he said whenever your ready. Since my friend had success with him, and is SVR now, I thought I better try this one. This Doc said it was stupid for them to pull me off and I liked that down to earth attitude of his.

I'm going back on the 26th of May. I don't know if I will start that day or not. My blood test results showed normal enzymes, but over 12 million viral load, where before it had never gone over 400 thousand.

Since my biopsy in 09 was grade 2 stage 2-3, the hepatologist said I had possibly progressed to 3-4. I don't know if that's possible in such a short time. I doubt it, but he did say possibly. So now my plan is to treat again and kill the dragon for good.

In summary, I feel that I waited too long, because I had so much on my plate when I found out. But there is nothing I could have done before my husband passed. Those 2 months were all I had left with him and I sure am glad I wasn't on tx. After that I should have started sooner, but the whole deal was really hard on me and I was half insane already from life as it were.

OK that's my story hope it didn't depress you.
Don't worry about me I'm a fighter from way back and I'm a tough ol chicken too.
Hugs, smile, and love!!!
Helena