FTY720

[Lyon]

00

[TonyJegs]

Hi Tony,
The above things you mentioned....you came to these conclusions after reading the abstract?
Bob

Hi Bob,
U right, when I saw it on this forum I checked it out.
Sorry, I didn't see it earlier, as I said before - was less active for a while.

Kind regards,
Tony

[Lyon]

00

[carolew]

I have been on this trial for FTY720 now for 6 months. I a sure I am on the placebo. I need to make a decision now: do I stay on the study to please the investigators i.e. be the control group and just behave or, ask to get onto another study (perhaps cladribine or tovaxin or campath) before things get worse?
I know that one can always cop out of a study. I am not sure that the grass IS greener elsewhere.... but at least, I could try to get a real drug and not a placebo.
I would really appreciate your feedback. I feel like I must make this decision soon. I am slowly getting worse and it is not relapses. Maybe I am now of the secondary progressive type. Maybe this study drug is not even for me after all.....
Thank you... Carole

[Lyon]

00

[carolew]

No. They just say that once the trial is over, some participants will be offered to stay on an extension of the trial....That would probably be at the end of the trial and that for me is Des ' 09. I am getting impatient as you can read (see).

[Lyon]

00

[mjs]

I agree with Bob.

[carolew]

Dear Bob, thanks for taking the time (and mjs too) to answer me and give me your opinions.
I shall talk to my neuro and make it clear that I have to change my plan.
I have an MRI coming up and it may just help me to prove my point.
I hate to complain and fuss about things but this is of utter priority. thanks again, Carole

[gkalman]

IMHO, you are the treating physicians first responsibility, not the study.
Be clear about your position. If the physician believes that the study is bringing you more bad than good, he should pull you out himself.

[carolew]

very true gkalman. thanks

[carolew]

So I saw the neurologist: she has nothing better to offer me and even if I am now of the secondary progressive type, she will keep me on this study.
For the first time, I felt that I was just a number and was in this study because she gets paid to keep me there..... sad, very sad. ....
So, I am still on this study and not doing any better. I don't want to wine and complain but I have to. I have been holding it in for too long.
My physiotherapist today made me try a walker, A WALKER!!! I don't even use a cane to work, this is too much degradation too fast. very hard to accept.
I will sleep on it and hope to be wiser tomorrow.
Good luck to all the others who also give their body to science to try different treatments.... Carole

[robbie]

Hi Carolew. I just wanted to respond with something even though I really don’t know what to say. I have felt like you for some time now. The phrase “just a number” or as I like to say “put out to pasture” is a great way to describe the feelings of allot of us. Don’t ever think that your complaining that is something for long line ups or paying for a bad movie not loosing your body to ms. It must be so hard for you with your kids, my only kid has four legs and sleeps most of the time and for that I am so thankful because I just don’t think I could be a parent with this, anyways keep smiling and be positive yea right!!! rob

[carolew]

I think I will try your cocktail now Robbie: mj, beer, codeine and beer!!!! How would that fizz with the job of a parent!
Today, I had another MRI and another lung function study, but I know it is all in vain cause I am on the placebo.
All the traveling for nothing .
I am in that phase. Anyway, take care of you and I will try to keep a positive attitude.... Carole

[Toyoterry]

Please don't look at it that way. I know it must suck to think you are on the placebo but the tribulations of people in clinical trials are heroic. If it means anything, THANKS. I really mean it.
Terry.