Tuesday, May 31, 2005

Rest..........glorious rest.

The last 5 days have been heavenly with gorgeous weather for the most part. I've spend most of it either on my computer on ensconced on the swing surrounded by reading material or beads. I even managed to have a couple of naps out there.

I still have a bruise and puncture mark on my side but overall I feel fine. It still hurts a bit both in my shoulder and under my ribs on the right side when I take a deep breath or yawn but I expect that to go away soon.

I'll phone Dr. Erb's nurse today and set an appointment to get the results. Fingers crossed. I really just want to get on with things and forget about my liver for awhile.

Edit: called and my appointment is Thursday the 9th at 11:45

Friday, May 27, 2005

Previous Drug Trial

I went and hunted down my "Patient Informed Consent Form" from the last go round to check and see how much ribivirin I was actually taking. After reading some of the other blogs and comments it seems that 800 is quite low so I thought I should check and see what I was taking.

The study was Protocol Number: BV16209C Study Title: Multicenter Open Label Expanded Access Program of Peginterferon alfa-2a (Ro 25-8310) Monotherapy and Combination Therapy with Ribavirin (Ro-20-9963) in Patients with Chronic Hepatitis C

I was in Treatment Group C: PEG-IFN + ribavirin for 48 weeks: Inject PEG-IFN, 180 micrograms, under the skin, once a week, and take 4 ribavirin tablets (800mg in total), two tablets twice daily with your meals.

Well considering what 800mg did to me I cannot imagine having to take a larger dose. I am thinking positive at the moment and planning on the biopsy showing no or very little progression and no treatment for the time being. :)

Thursday, May 26, 2005

The biopsy

My appointment was at 9:30 this morning. I think the anticipation is the worst. They came and got me and took me to the area and the girl gave me a gown and told me all i had to remove was my shirt and put on the gown with the opening to the back.

Then to a room. She explained what she was going to do and what the doctor would do. Then she did a scan of my liver area and went off to figure things out and then she came back with the doctor not too long afterwards. Very nice guy and he also explained what would happen and talked to me each step of the way explaining what he was doing.

He did some scanning himself for a wee bit and picked his spot. He marked it with a straw (indentation) and then swabbed the area with alcohol and whatever else and then he said he would be putting in some freezing and it might sting a bit. I hardly felt it but did feel a bit. When it was frozen and he again made sure of his spot he put the little machine up there and click click and it was done. He showed me what it looks like and i was pretty surprised to see it is only the size of a piece of thread!

He cleaned me up and had me roll on my right side and he explained what to watch for (redness, swelling and pain) for infection and what to watch for for bleeding but otherwise to just take it easy for the rest of the day. I had to stay for an hour lying on my right side to make sure there was no bleeding and then I was allowed to leave.

When I did turn onto my side it hurt with both pain on my side and pain in my right shoulder (referred pain) but this was to be expected and didn't get any worse so I was let go. At that point all I wanted was to go home and relax and have a cold drink. Which is exactly what we did. My sweet husband took me to a Timmy's on the way home and I got a nice cold Iced Capp! It was wonderful!

I won't get any results for probably a week from Dr. Erb. I will have to phone and make an appointment. Then we will know where we are at and what needs to be done next.

Monday, May 23, 2005

How this all began.

I was a runaway teen. I guess this is pretty much where it started. I ran away and ran away until I ended up in foster care for a year. I eventually went home again but continued to have problems and the day I turned 18 I moved out. I spent so much of my teen years running away and being unhappy that school was not a happy place either. I didn't graduate so when I left home I had no education and no job. I worked for a theatre and shared an apartment with a girlfriend. I got a job at a veterinary hospital and enjoyed that. I eventually got pregnant and had a son alone. Then another. The loves of my life :)

Briefly in 1976 my life went totally out of control and I dabbled in injectable drugs maybe half a dozen times and quickly realized this was not for me and if I adopted this sort of lifestyle I would lose my boys either physically or through neglect. I walked away from everything and took my kids and moved to an empty house in east Vancouver. We were sleeping on the floor but we were together and happy and healthy and just about that time I happened to meet my now husband. We just meshed immediately and he took on my boys and within 5 months we were married. In 1979 we had another son and called our family complete.

Life went on as life does and the boys grew and were all doing well. We moved to Williams Lake for a few years when my husband got work up there and then for a few years to the back side of Shuswap Lake. In 1984 we moved back down to the coast of British Columbia and out into the Faser Valley which is where we still are. The boys all finished school here and all have good jobs and are healthy and happy. The oldest got married in 2002 and had a baby daughter in 2003 and she is adorable and smart and loves coming to visit Grandma and Grandpa.

In 1990 I went with a girlfriend to a bone marrow donor meeting and was told that in order to be a bone marrow donor we needed to also be blood donors with I was already although I hadn't been for a few years. So Lynnie and I headed off to give blood and be part of the program. I got a letter in the mail not too long afterwards informing me that I had tested positive for Hepatitis C and should see my doctor. He retested because of a maybe false positive but it came back positive again so he started to run liver function tests on me every six months and they slowly started to go up.

In the mean time life was moving along and I worked for Woodwards on the sales floor until they went under. I then decided to go back to school and learn the computer and get off my feet and away from evening and weekend work. I went to CDI and loved it. I got a job right from there and worked for a software company. I was working there in 1998 when my doctor sent me to see a liver specialist out at UBC Hospital. He suggested a liver biopsy to see what kind of damage I had already. I did have one done at that time and he told me the damage was minimal and the chance of it getting any worse was minimal.

I continued to be monitored by my family doctor and was getting counts every 3 months. My job at the software company came to an end and I was very depressed and tired all the time. I just couldn't seem to get it together and get myself motivated to go and look for a new job. I was spending more and more time in front of my comptuer. I would get up and do a bit of housework and then come back to the computer for a rest. I went back to my doctor and told him how I was feeling and he sent me off to Vancouver Hospital to see Dr. Erb. He examined me and explained to me that Hepatitis C is now considered a progressive disease and in some people it progresses quickly and in others it does not.

He was just gathering names for a drug trial that would try pegalated interferon and ribaviran and got me signed up for the trial. In August of 2001 I went and began the trial with learning how to give my self an injection in my stomach area once a week and taking 800 mg of ribaviran a day, half in the morning and the other half at dinner time.

I responded immediately and was no evidence of disease right away as well. The ribaviran drove my hemoglobin down and down until at one point it was at 69 and I ended up in the hospital over night with dehydration and fever. I stopped taking the ribaviran twice during the course of the year long treatmeant with the last time being in May of 2002 and I didn't go back on it for the last two months of the trial. All my liver counts came down to normal and stayed that way the whole time.

I was so sick though that a lot of the year was spent in bed or sitting at my computer. I had absolutely no energy and really was convinced that the ribaviran was trying to kill me. I had a horrible itchy rash that drove me crazy and I lost hair. No bald patches but luckily I have very thick hair and it just thinned it down drastically. I swore when I was done I would never go back on the ribaviran no matter what.

I finished treatment in July of 2002 and when I went back for a blood workup in the weeks afterwards so they can track how you are doing my ALT was up over 300 which was the highest it had ever been and when I went back to Dr. Erb he confirmed that I had relapsed as soon as treatment had stopped and the virus was showing again. He suggested at that time that I should go back onto interferon alone for a two year course. As it is very expensive and I was just starting to feel better from the last year of treatment I was not all that enthusiastic. Dr. Erb said he was trying to get the drug company to pay for interferon for 5 relapsers for 2 years and he would add my name to the list.

I basically left it at that and checked back with his nurse a few times and then let it go. I was feeling better and better and getting my energy back. Dave and Allie moved out to Abbotsford in April of 2004 and I babysat my baby girl for the summer. As it had happened as well, Jude had called me and asked me if I would come to work for her at the tree farm as they were getting to the point where they needed help in the office. I worked for her for the month of April and then daycared Christina for May, June, July and August. In September they decided to move to Delta and move in with Allie's parents to save money for a house. So in September I went back to work full time at the tree farm. I went and saw Dr. Chan and got my liver blood work done to check the counts and see if all was still going ok. It was Alt 60 something and Ast 30 something so I was pretty happy with that and feeling great.

About a month ago I was at work and it was hot and we'd been outside tagging trees and waiting on customers in the Nursery and I went in to chat with Jude about something and when I took a deep breath in I got a sharp pain in my right shoulder which I was pretty convinced was something to do with my liver right away as I had have this before when I was on treatment and it was thought at that time that my liver causing it. So I told Al and Jude was aware of the pain as well and when it hung in there for a few days I decided I had better see Dr. Chan again and he sent me for blood work right away and it came back with my liver counts up a bit again. Alt 86 Ast 52

Dr Chan wanted me to go back to Dr Erb and see what he had to say and if there was maybe anything new going as far as treatment goes. This is what I found out.

I'm a type 1 (1b I think) which is the toughest to treat. When I had my last biopsy back in 1998 my fibrosis was at a 1 out of 4. He says because of my type etc I have a 60% chance of progression and a 40% chance it won't.

Every year of treatment buys me 3 years.

The sooner you get treatment the better you respond.

He has no way of telling me where I stand at this moment and whether or not there has been progression and how much progression if there has been any without a biopsy. So I have 4 choices.

I can have a biopsy and see where I'm at.

I can do nothing and hope for the best.

I can go onto the treatment that I tried last time but with a different interferon because I relapsed as soon as I finished treatment last time. I asked if I could do the interferon alone and he said I would need to take it with the ribaviran which is what made me so sick last time and drove my red blood cells down to a 6.9

Or I can wait and see if I can get into the trial that he is pushing the drug company to do. It is for relapsers and it is a drug combo that has been working well on type 2 and 3 and now he wants the drug company to start a test for only the relapsers which would be a new interferon drug again in conjunction with the ribaviran.

He did say that if I do either of the treatments with the ribaviran that they would adjust the levels to what I could handle so I may not get as sick as last time.

So really after thinking about it for a few minutes we all agreed that having a biopsy will at least help me make up my mind what I'm going to do. I absolutely dread having to go back onto the ribaviran. It really made me so sick last time that I spent alot of time in bed. I have a job now. Oh well no use putting the cart before the horse.

I really need to know where I stand right now and I guess if there is progression then I'll have to act. If there is no progression then I can afford to wait a year or so and see what new drug they can come up with in the mean time.If there is progression then I need to see how much progression there is. If I have a bit of time to wait for the drug trial I think I'll do that and if not then I guess it's the interferon and ribaviran from last time.

So he said the biopsy will be at VGH. His nurse called and it is scheduled for Thursday the 26th at 9:30 AM I am taking Thursday and Friday and Jude says if I want to take Saturday as well that gives me a five day weekend next weekend so I'm going to take it. I only miss 2 days pay cause I have one coming from this weekend for the stat.

I decided to keep a journal this time and see where this treatment takes me if I do need treatment again now.