Do clinical trials help?

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Do clinical trials help?

by KEVEDS on Mon Dec 19, 2011 10:27 PM

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My chemotherapy has stopped.  My oncologist has recommended a clinical trial.  Is it really worth it? 

RE: Do clinical trials help?

by tmfaubus on Mon Dec 19, 2011 10:42 PM

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What kind of cancer do you have ?

RE: Do clinical trials help?

by KEVEDS on Tue Dec 20, 2011 03:24 PM

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Colon, Stage IV with mets to the liver and both lungs.

RE: Do clinical trials help?

by tmfaubus on Tue Dec 20, 2011 04:48 PM

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I look at clinical trials as a huge maybe. Most of them do not benefit QOL or outcome. Of all the clinical trials out there you have to remember how many move on to become mainstream treatment. I have a DIPG and am being treated with avastin which started out in clinical trials...Overall the benefits of clinical trials for the furtherance of research cannot be questioned.

RE: Do clinical trials help?

by KEVEDS on Tue Dec 20, 2011 05:01 PM

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Thanks, that is about what I expected to hear.  It seems like they are for human guinea pigs.

RE: Do clinical trials help?

by DaveK on Thu Dec 22, 2011 03:08 AM

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I have medullary thyroid cancer and have known about it for 8yrs. I have been in a clinical trial for about 4 1/2 yrs. (almost 3yrs on one trial, 1 1/2yrs. on another trial). With this trial, several things may have happened. One is a cure for me or others. I may have gained more years than I would have without being on a trial. There maybe another study taking place right at this moment, that may be the cure. The thing I am fighting for is that cure. I want to be here when the cure comes. I want to be here also, with all my body parts intact. So far, the clinical trials have allowed that. If I am not here when that cure comes or I have had parts removed and quality of life is altered, cancer will then have had the advantage on me. Being a guinea pig has been good for me. I also want to thank the others who were the guinea pigs before me, to allow me the extra years I received. Back in '63, I had a little brother who died of leukemia. Because others have been guinea pigs, I have been told that patients now have an 85% survival rate. In '63, the only question then was about how long do we have.

RE: Do clinical trials help?

by KEVEDS on Thu Dec 22, 2011 03:17 AM

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Thank you for your reply.  Let me begin by saying bravo for what you have been willing to undergo.  I have had three a half years of chemo and it has not been fun.  I have an appointment at a major medical center to discuss their clinical trials in early Janaury.  I am going in with an open mind and willingness to be the next human guinea pig.  Not because I am unafraid, I am, but because I have a daughter who turns six next month.

 

Thank you for your reply and I wish you the very best!

RE: Do clinical trials help?

by Lucy_in_Texas on Thu Dec 22, 2011 04:56 AM

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On Dec 19, 2011 10:27 PM KEVEDS wrote:

My chemotherapy has stopped.  My oncologist has recommended a clinical trial.  Is it really worth it? 

Clinical trials can be lifesavers or torture. Be sure you understand all the terms and possible benefits before you agree. The American Cancer Society and many other support sites provide info on what to ask. But they don't emphasize a couple of things: what side-effects can I expect? Will I be given any other kind of medication if this is a double-blind trial? Or will I just get placebo (fake meds?) Will I be able to switch to the trial medication at some point in the trial? Will it cost me anything? Will I be able to get this medication after the trial is over?

RE: Do clinical trials help?

by wcroeh on Thu Dec 22, 2011 04:55 PM

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My response is yes, clinical trials can help.  I have inoperable pancreatic cancer and was given 8-12 months to live at the first diagnosis.  I took the standard treatment first which did not help at all, in fact my tumor grew during this period.  My oncologist suggested I try a clinical trial or either go to the next standard treatment.  I opted for clinical trials.  I have been in two different clinical trials and now have been stable for 16 months - a total of 22 months from my first diagnosis.  So for me these trials have been a gift of life.  I am also now going to have nanoknife surgery in January and that was not possible 22 months ago.  Fortunately for me, the changes in technology have taken the inoperable to operable, but without being made stable by the clinical trials this would not have happened. 

Also I have a friend who also had stage IV colon cancer and is now cancer free after his last clinical trial. 

RE: Do clinical trials help?

by janegrant on Thu Dec 22, 2011 05:48 PM

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Yes, it can definitely be worth it.  My husband started MDX 1105 a year ago as a last hope against nonsmall lung cancer.  Today he's gained 25 pounds and 70% of the cancer is gone. 

Oh yes, it's worth it.

Best of luck to you. 

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