XL-184

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XL-184

by OhioBrian on Sun Aug 22, 2010 08:16 PM

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I've been on the experimental drug XL-184 for a few months. Unfortunately I was assigned to a placebo group after being on the drug for 2 months with great success. After I was put on placebo I crashed - significant advancement of metastases, loss of bowel & bladder functions, severe pain. I am not back on the drug and my PSA has dropped from 95 to 42, I'm going in for the scans in a couple of weeks so we'll see how the tumors are responding. 

 

Anyone else on XL-184?

RE: XL-184

by OhioBrian on Sun Aug 22, 2010 08:17 PM

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On Aug 22, 2010 8:16 PM OhioBrian wrote:

I've been on the experimental drug XL-184 for a few months. Unfortunately I was assigned to a placebo group after being on the drug for 2 months with great success. After I was put on placebo I crashed - significant advancement of metastases, loss of bowel & bladder functions, severe pain. I am not back on the drug and my PSA has dropped from 95 to 42, I'm going in for the scans in a couple of weeks so we'll see how the tumors are responding. 

 

Anyone else on XL-184?

Sorry, it should read that. "I am now back on XL-184..."

RE: XL-184

by dpaine on Sun Aug 22, 2010 11:42 PM

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My father recently started on XL 184.  He was initially diagnosed w/ inoperable advanced prostate cancer 10 years ago at the age of 57. He was treated w/ radiation and hormone therapy.  Over the years, he has continued on hormone therapy and had surgery to scrape out his urethra. He has had a  catheter inserted several times for months at a time. The most recent catheter has been  in place for three months. In June, they discovered mets to his hip, spine and liver. He was accepted into a clinical trial in Boston and started on the XL184 2 weeks ago. The first lab tests will be this Thursday to see how he is responding.  He is very lethargic and doesn't have much of an appetite.  Did you have similar side effects? It sounds like you are having a positive response! I hope my father does too!  Good luck!

Debbie in MA

RE: XL-184

by OhioBrian on Mon Aug 23, 2010 02:30 PM

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I had an amazing recovery/reversal of tumors when I went on XL-184. I had mets to the liver and lungs that reduced by 50%! They pulled me off the drug when I was assigned to a placebo group after 2 months of succesful treatment. Ouch! I'm back on 60 mg a day. I initially was on 100 mg or so, but developed foot sores that made it hard to walk. Currently I'm experiencing some foot soreness and fatigue.

 

Best of luck to you and your Dad!

RE: XL-184

by tommofo on Fri Nov 19, 2010 02:56 PM

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I just got my 6 week scans done and most of my lymph nodes came down i size by half. This drug seams to be working! I do have many side affects with xl184 but if it is working this well i'll stick with it. Tom

RE: XL-184

by kukakkid on Tue Nov 30, 2010 11:30 PM

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Hello Brian  I am wondering if you were allowed to go back on xl184 andhow You are doing. I was offered the xl184 trial but it would require Me to drive 6 hrs one way every 2 weeks as long as I am on the trial. What side effects did you have , any one else out there doing xl184?

RE: XL-184

by kukakkid on Tue Nov 30, 2010 11:32 PM

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Hi Tom ,

How is the xl 184 affecting your psa ,Is there a lot of side effects? what are the side effects?

It sounds like you are having a great response .

 

RE: XL-184

by kukakkid on Tue Nov 30, 2010 11:35 PM

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Hi Debbie , I have been offered the xl184 trial as well, I am wondering if there is anything You can tell Me about it.

As I understand it I would have to be there for a whole day minimum every 2 weeks , do they do scans. I hope it did a lot of good for your Dad

RE: XL-184

by tommofo on Fri Dec 03, 2010 01:57 PM

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Hi KId at last vist to u of mich. hospital my psa was up from 6.9 to21 .8. everone involved with the trial sed this might happen. The side affects have not gotten any worse, and some have gotten better.

the worse thing for me is slight sore feet and mouth.

RE: XL-184

by OhioBrian on Tue Dec 07, 2010 12:39 AM

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On Nov 30, 2010 11:30 PM kukakkid wrote:

Hello Brian  I am wondering if you were allowed to go back on xl184 andhow You are doing. I was offered the xl184 trial but it would require Me to drive 6 hrs one way every 2 weeks as long as I am on the trial. What side effects did you have , any one else out there doing xl184?

Yes, they put me back on XL-184 and it didn't do anything good, in fact my condition worsened significantly. They pulled me off of it and I'm now on Taxotere and doing OK.

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