FTY720

Lyon · Posted: Wed Mar 21, 2007 2:26 pm Post subject:

Hi Tony,
Maybe you already know, but the abstract is just a short piece explaining what the study is about but doesn't usually give the specifics that you mentioned. I think before the journals will accept an article being submitted it has to include all that type of information.

Bob
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Wife diagnosed with RRMS in Feb. 2006.

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..... Rolling Eyes

Thank you... Carole

Lyon · Posted: Thu May 03, 2007 1:25 pm Post subject:

Hi Carole,
I'm sorry to hear the situation isn't better.

What are the terms of your clinical trial? Is there a leg of the trial when you get on the medicine for sure despite the fact that you may be on the placebo right now?

Bob
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Wife diagnosed with RRMS in Feb. 2006.

carolew · Posted: Thu May 03, 2007 6:43 pm Post subject:

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 · Posted: Thu May 03, 2007 8:10 pm Post subject:

Hi Connie,

Desperate times call for desperate measures.

If you're convinced you're on placebo and that it's not a sure thing that you'll get the real treatment it seems this trial holds nothing for you. While I suppose there is some honor involved in fulfilling your committment to the clinical trial, advancing MS is an emergency situation and honor would be the least of my worries.

While investigating and considering all other options I wouldn't out and out quit until I made it clear to the FTY720 coordinator that you are convinced you are on placebo and that you are going to quit, and I would also make it obvious that I wanted to be put on the real treatment by calling every day for about two weeks. If he/she quits taking your calls at some point, or if they don't meet your demand in the two weeks, at that point quit if you want.

People are taught by society to be polite, not to intentionally make people uncomfortable and not to ask for unreasonable things. You have MS which is advancing, forget all that crap you were taught earlier in life and do whatever it takes to get your way.

Bob
_________________
Wife diagnosed with RRMS in Feb. 2006.

mjs · Family Member Joined: Jan 18, 2007 Posts: 40

I agree with Bob.

carolew · Posted: Fri May 04, 2007 4:52 am Post subject:

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 · Family Member Joined: Jun 02, 2005 Posts: 41

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 · Posted: Sat May 05, 2007 7:40 am Post subject:

very true gkalman. thanks

carolew · Posted: Wed May 30, 2007 5:49 pm Post subject:

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 · Posted: Thu May 31, 2007 1:17 pm Post subject:

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
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

carolew · Posted: Thu May 31, 2007 7:10 pm Post subject:

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 · Family Elder Joined: Apr 20, 2005 Posts: 109

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.