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Would you take part in a trial?


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#1 WoofWoof

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Posted 28 January 2011 - 07:52 AM

This is a four part question for discussion:

A) If you were responding well to your current medication, would you still take part in a trial?

B)  If the trail provided free medications and regular exams?

C) The trail meds had the potential for less side effects?

D)  If the trial could lead to a "cure" for CML and daily medications were no longer need?


I have cancer but it doesn't have me


#2 janner25

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Posted 28 January 2011 - 08:11 AM

Yes to all 4 questions....



#3 HeatherZ

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Posted 28 January 2011 - 09:17 AM

I would say yes to all 4 also.  



#4 cpsn0000

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Posted 28 January 2011 - 10:07 AM

For sure, yes..I am looking to get into the Bosonutib trial since that drugs help create platelets and I had problems with my platelet counts on Gleevec and now the same with Tasigna....I can try sprycel next but would really like to try bosonutib first...



#5 CallMeLucky

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Posted 28 January 2011 - 10:15 AM

I would need more info than that.  I can say that I would not participate in a phase 1 trial unless I was on my way out, but I think that is pretty standard anyway from the doctors that run the trials.  So assuming it was a phase two trial where basic efficacy and safety were already determined, I would consider it.  Honestly I think I might be reluctant to stop taking a TKI that I know works to try somthing else, I would be more inclinded to participate in a combo trial where I continue to take my TKI.  Part of my reasoning is that I can't just think about myself in the situation.  As sole provider for my family with two little children, any decision I make gambles on their livelihood.  So if I have something in hand that can keep me going until they are adults, even if that means I have to trade off years later in life, that is my primary responsibility right now and I have to do what has the best odds for them.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#6 jrsboo

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Posted 28 January 2011 - 12:21 PM

When I was first diagnosed and found my Oncologist, I knew that she is one of the researchers running trials.  I told her, as long as she lets me outlive my dog, she can start experimenting on me any way she wants. 

I don't have kids, I am in my mid 40's, and am married to a wonderful man who if need be, can take care of himself.

So I would say yes to all those questions/parameters.

Caroline



#7 John

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Posted 28 January 2011 - 12:44 PM

Add me to the yes list!



#8 helenet

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Posted 28 January 2011 - 01:45 PM

Why are you asking?  Are you considering this?



#9 Marnie

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Posted 28 January 2011 - 07:01 PM

Probably, though that's easy to say until you are in the actual situation.



#10 Trey

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Posted 28 January 2011 - 10:01 PM

Clinical trials are important to advancing the treatment of diseases, so participation is important when it makes good sense.  I participated in a CML vaccine trial even though I was responding well to Gleevec.  I thought it was important, since they needed volunteers.  But there are several things to consider:

1) Clinical trials involve risk on several levels, from low risk to very high risk.  Early participation (Phase I and maybe early Phase II) generally means higher risk.  Phase III may have reduced risk.  But there are always risks which must be carefully considered.

2) Often the trial drug does not work.  This can be a setback in treatment rather than an advancement for the individual.

3) Clinical trials can be a last resort for some after all other treatments fail.  These can be life savers, but usually are not.

4) If someone cannot afford medications, some clinical trials (not all) pay for medications and testing.  Usually unapproved drugs are free, but later trials after initial FDA approval has been granted may not be free.  If this is an important issue, then it should be considered.

5) The researchers believe in their research and need volunteers, so they can have a biased view; so it would be wise to get a neutral assessment of the risks and potential benefits






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