Treatment buddies

I got a message on the board from another lady (L) who is starting on the Telaprevir (VX-950) drug trial around the same time as me. She is starting on Monday the 23rd so she'll be about a week or two ahead of me. We have decided to be email treatment buddies. I know it will be helpful to have someone else going through this at the same time to talk to.

Here is one of those stupid vanities we are sometimes guilty of. Last time I had treatment they told me I shouldn't get my hair dyed while on treatment and didn't give me a reason why. I followed instructions and didn't dye my hair but I absolutely hated all the grey coming in. My hair was quite long and by the end it just sort of hung there with no life in it at all. As soon as I was done treatment I went and got it cut and dyed it. I was red in those days or auburn I guess. Well last year I cut my hair short and dyed it blonde and I was really happy with it and everyone around me seems to like it. So one of the first thoughts I had was about my hair and what I was going to do about it.

When I saw the nurse on Friday and we went through everything and I had asked my questions and was getting ready to leave the nurse asked if I had any last questions and I suddenly remembered the hair dye issue so I asked. She said that interferon kills hair follicles and that is why you lose hair on treatment. She said the dye would kill more follicles but it was entirely up to me. If I wanted to get my hair dyed and risk losing extra hair that was up to me. Well i have a ton of hair and even with losing a fair amount it was still pretty thick so I decided I would risk it. I have been thinking about what Miss Poppy said to me on the board about using the next couple of weeks to pamper myself and so today I phoned and made the appointment to get my hair cut and dyed before I start (save some of those follicles!) So I shall be going forth into treatment looking my best and feeling really good about it too.

I had to laugh when I got the last email from my treatment buddy L too. Last time round she lost a lot of weight and so did I. She's just quit smoking and says she has become an eating machine so she doesn't mind losing some weight, well ME TOO!! Gotta look for all those silver linings, be positive and be thankful for getting the chance to be part of the trial. I know I sure am.

So this is what I know so far about how the drug trial will work.

There are 4 arms to the study.

Group A will receive Pegasys, Copegus and a "placebo" for 24 weeks followed by Pegasys and Copegus for 24 weeks. (Group A will return to the clinic at Week 26 to discuss treatment options, which include access to telaprevir through a rollover protocol)

Group B will receive Pegasys, Copegus and telaprevir for 24 weeks followed by Pegasys and Copegus for 24 weeks

Group C will receive Pegasys and telaprevir for 24 weeks

Group D will receive Pegasys, Copegus and telaprevir for 12 weeks followed by Pegasys, Copegus and a placebo for 12 weeks.

Needless to say I would take Group B as a first choice and then Group A (as long as the telaprevir kicks in at week 26) but I'll take whatever I get. I also found out that 440 adults will take part in the study at approximately 60 medical centers in North America and Europe.

Friday the 13th

It's a good thing I've always considered Friday the 13th a lucky day. It was a long day yesterday but we got everything done and now I just have to wait and make sure all my tests come back fine. My nurse told me that it will be about 2 weeks so they will call me either the last week in April or the first week in May and then I just have to go in and get started.

I got a call the day before to say I had to fast for 4 hours before my appointment at 10AM so I didn't have anything when I got up in the morning. With rush hour and all the road construction going on everywhere all over Vancouver (getting ready for the Olympics in 2010) I left at 8AM and pulled into the underground parking at the hospital at 9:48.

I met my nurses, got the rundown of what we had to get done and then they left me with the 20 page informed consent form to read and a pad of paper to jot down questions. My only questions were if 1) If I ended up in group A which got only interferon and ribavirin and a placebo for 24 weeks, would the rollover into the vertex drug be at the end of the 24 weeks or the end of the 48 weeks. and 2) if the drugs gave me anemia again as I assume they will as that is a side effect of both ribavirin and telaprevir, can we just lower the dosage instead of being taken off the drug until my counts improve.

She said that on question 2 she was pretty sure that they would lower the dosage because they have learned you are better off to have a lower dose and stay on ribavirin than go off the drug and then back on again and on the first question she thought it was at the 26 week mark when they meet to tell you which group you were in and tell you what's happening with your results so far. So I could end up in any of the 4 groups and each gets the telaprevir at one point or another. It is Pegasys and Copegus that we'll be getting.

I had an ECG, multiple vials of blood taken, a physical exam, urine test, eye examination, weight and height, blood pressure, signed and initialed 20 pages of consent and was there for about 3 hours. I left and went looking for food and drink!! Then I hit the freeway back to work and got back around 3PM.

I was happy to read the Prove 1 Clinical Trial results. My nurse was very positive about the drug too. It's going to mean lots of trips in to the hospital for the first few months but that's fine. I need to increase my fluid intake now and get used to drinking water. The nurse said to get some crystal light and mix that in with it and see if giving it a flavor helps. Plus she said if I want a cup of coffee in the morning I can have one. The Hepatitis clinic has moved into a big new facility still attached to the hospital with all new everything so it's really nice and I liked all the nurses that I've met so far. They seem very informed and she was happy to hear about the online support network the forum provides whereas last time they told me to stay off the internet as most of the information out there was wrong. So all in all I feel very positive about all of this and my only worry now is how the drugs will affect me and what group I end up in and will I be able to stay on top of the fluids I need.

THE phone call

I just got the phone call from the Dr.'s office regarding the VX950 drug trial. I have to be there on Friday the 13th (it has always been my lucky day!!) to go over everything, have blood work, a urine test etc to make sure I qualify for the study. I had a biopsy 2 years ago so thank God I don't have to have another one.

There are four arms to the study and it is decided who goes into what arm with a flip of a coin and one of the arms doesn't include the VX950, just the Interferon and Ribaviran for 48 weeks. The other three do have the VX950 in them in various combinations with the Interferon and the Ribaviran. I'll know more after the meeting. She also said only 8 or 9 are going to be in the study and I will be his only patient in the trial so I really do consider myself lucky! The nurse said if I have not attained SVR by week 12 the trial is done for me.

OMG!!! I am now going to alternate between sheer panic and "Thank God let's get this over and done with" until Friday.

Spring showers...........

May bring May flowers but man it would sure be nice to see the sunshine for an extended period of time. Friday was gorgeous and the temp went up to 22 and Saturday was quite nice. Yesterday it was not bad and this morning the rain is coming down in torrents. Oh well, round about June I should be complaining about the heat!!

Lynnie and I got in a good walk on Saturday and took Miss Lacey with us. I usually show pictures of her sitting looking pretty, well this is what she likes more than anything, to get out into the bush and dig herself a nice big hole and crawl into it and roll around. Then she is a happy little girl. We call her the "No Fear" dog. She jumps from great heights, loves to swim, dig and run. I also call her my little mud pit!! She is not the delicate little lap dog I expected but I love that little face of hers dirty or not. Mr. Nemo is a lovely boy. He is very clean and proper and he lets Lacey just mall him.

I am off to Lynnies for dinner tonight and then it's back to work tomorrow. I have heard nothing yet about the drug trial and might phone next week and see if there is any news.