Tuesday, April 17, 2007

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.


carol said...

Wishing you all the very best with this treatment.
Stay in touch.

Elizabeth Anne said...

Thanks Carol :)

Anonymous said...

I am also in the trial. A, B or D. I share your preference for B, but like you will take whatever I get.
I did get slightly different instructions. 2 log by week 12 and undetectable by week 24.

I am also a repeat offendor.

best of luck,

I have more intense sides and I have fond that a high fiber diet makes a big difference in how I feel.