5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

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RE: 5fu Toxicity

by brenda40 on Mon Aug 02, 2010 06:34 AM

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I' reading this several months past the post... Sorry about what your mom went through.  Did they test her after she got ill? Is this how it was determined?

 

RE: 5fu Toxicity

by Mdallas on Mon Aug 02, 2010 09:59 PM

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Hello,

I had trouble with the emailing from the dpd the website....My Mom had her first treatment of 5Fu three weeks ago.....She got the pump on a Monday and it was removed on Wednesday...I know they gave her 100% of the dose....she was fine all that week until the next Monday when she started withe severe vomiting and diarrhea.  She was dehydrated by Wednesday and needed to go in for fluids everyday...By Friday she passed out in the bathroom from dehydration....Home health came over the weekend....she had vomiting and diarrhea all the time.... every 15 minutes to every hour.....On Monday all the symptoms stopped and went away....The doctor said we should wait another week to let her gain her strength up....So her we are Monday again and the pharmacist and I discussed the possiblitiy of dpd deficiency....she just got the pump back on and I am sooo worried what might happened again after reading all these blogs.....I dont know what to do?

RE: 5fu Toxicity

by brenda40 on Tue Aug 03, 2010 03:47 AM

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Wow!  I would have the pump pulled out & be tested before another drop went in her. You are your mothers  medical manager. Only you have her best interest at heart.  My husband had 5 Fu as part of his inital treatment.  Was extremely ill for 3 weeks.  Nothing has ever been mentioned about this enyyme or testing.  We opted to have it tested & wait on thte chemo until we have reults. The test we be ran on Wednesday. The lab only does it once per week.

Keep me posted on your mom.  God Bless both of you!

RE: 5fu Toxicity

by brenda40 on Thu Aug 05, 2010 02:05 AM

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We get my husbands results back tomorrow.  We held on the chemo since he got so sick last time.  What diod you decide to do?

Thanks, Brenda

RE: 5fu Toxicity

by brenda40 on Sat Aug 07, 2010 08:36 AM

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Hi, How is your mom? When I called for the results of the enzyme - found out the test has to be repeated. I'm thankful we waited on the chemo as it sounds like it must be an enzyme def since its being repeated.

Thanks, brenda

RE: 5fu Toxicity

by lisathew8lifter on Sat Aug 07, 2010 11:28 AM

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i am kicking myself for not asking what drug my mom would be taking.  she has astage IV colon cancer and started this last week. her severe diareah started on sunday and she is in the hospital as i type. 

my dad (her primary caregiver) called the onc to inform them of what was happening, how she lost 8 lbs n 7 days and no one seemed concerned. i'm sure that this is what is happening to her.  i am going to visit there today and ask them to test her (if possible) for the dpd deficiency. this is ridiculous! i am soo sorry for all of you who either endured this treatment and side effects or lost a loved one due to the effects of this drug. something has GOT to change!

RE: 5fu Toxicity

by brenda40 on Sat Aug 07, 2010 02:41 PM

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Good luck today! Be persistent in getting her tested.  There are a few labs that run the test.  Ours was sent to Quest Diagnostics - San Juan location.  See if the hospital's send out department is able to send to Quest?  Where are you located?  We are in Cincinnati.
My husband had his experience with the 5-FU as part of his inital chemo in 12/08. He had the pump started on a Monday & everything seemed to be ok.  It was removed on Friday.  By Saturday, he was so very sick! The diarrhea  continued for 2 weeks.  He lost 30 pounds in 3 weeks.  Was said that it was a side effect.

Now that the cancer has reoccured with lung mets, we had the tumor tested . Her-2  + which is mostly seen in breast cancer patients.   The drugs that it is sensitive to are Tykerb, 5F-U , & Carboplatin. The Tykerb is working but want to add a regular chemo to it.  Was scheduled to start the 5 F-U but decided to hold until testing for the enzyme.  The doc's don't tell you about it nor do they encourage the testing.  Very confusing to us but it was OUR decision!

Be an advocate for your mother.  Know what drugs they are giving her & why.  Then do your reasearch to see if the benefits outweigh the risks.

Good Luck & let me know how your mom is. 
Brenda

RE: 5fu Toxicity

by brenda40 on Sat Aug 07, 2010 04:00 PM

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Looking into a new chemo combo cocktail?  Anyone with any experience on Tykerb & Carboplatin?
Thanks, Brenda

RE: 5fu Toxicity

by brenda40 on Sat Aug 07, 2010 04:08 PM

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Looking for anyone who has taken Tykerb with another agent other than 5-FU?  Carboplatin?

Thanks

RE: 5fu Toxicity

by hollythomas on Tue Oct 12, 2010 07:42 PM

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ITT Labs located in Birmingham, AL performs a DPD enzyme test to determine which patients have low DPD enzyme activity and are at increased risk of experiencing severe 5-FU toxicity. ITT Labs' website is www.ittlabs.com to get more info about the DPD enzyme test.
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