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nubis's picture
Posts: 98
Joined: Mar 2008


Today 03/27/09 The tumor is the same, but lymph nodes are getting bigger. We just finish second line of quemo (Topotecan). Doctor offered us a Clinical Trial. Good news: this drug is for smcl and my husband is a candidate. Also the Trial is in the same hospital were he received his other quemotheraphy.

This study is being paid for and study drug 776 is being provided by the study sponsor Schering-Plough Research Institute. About 60 people will take part in this study nationally. Up to 24 people will take part in our hospital.

There are risks: unknown side effects. Posible physical damage.

Anybody doing a clinical Trial?

This is very difficult.....

Thank you,

soccerfreaks's picture
Posts: 2800
Joined: Sep 2006

No, nubis, I am not doing a clinical trial, and have not done one, but have read great things about them.

A lot of the negatives you might be thinking about turn out to be myths, it seems.

What I am about to write comes directly from CURE magazine, which is issued in conjunction with ACS, albeit, it is paraphrasing.

1. Clinical trials are NOT a last resort. In fact, if you wait until all other treatments have been exhausted, it is likely that you will not be accepted into trials. So, nubis, this is good news for your husband.

2. The trials are not as risky as people think they are. In fact, you are likely to get better care, and certainly more observant care, in trials, and they are NOT going to let you die to prove a point. That is, if problems arise they can stop or suspend trials. In addition, of course, they can put you back into normal regimens if the trial is not working out.

3. Placebos, such as sugar pills, are NOT a standard part of most trials. Your husband WILL receive proper treatment.

These are but a few of the myths debunked in the thing I read in CURE. (Again, I have no first-hand knowledge in this regard, so hopefully someone will respond who has.)

I wish your husband, and all of his loved ones, you in particular, the very best, nubis, during this exciting but frightening time.

Take care,


nubis's picture
Posts: 98
Joined: Mar 2008

Thank you Joe for your information. You are the third person giving me a positive comment about the Trials. As you said, this is good for my husband and you are rigth. He will be in observant care. I read all the papers we need to sign and he will be at the hospital more time because they need to run a lot of tests before the new drug infusion and after it.

I was thinking in Clinical Trials since one month ago. Actually I called to the 1-800 number to get information. I said: Next appointment with my doctor I will ask her about the Trials. For my surprise, she offered the trial before I ask her.

I'm looking for a job since 6 months ago. I had an interview last week. I don't know what to do? Should I wait? Should I work? My husband is on social security disability. I'm not working. So, for this reason I'm looking for a job. Also my family think it will help me to be busy. But for me, I want to do both things,I want to work and I want to be with my husband. Can you give and advice? and now the Trial??? Its so difficult =(
Thank you

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