5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

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RE: 5fu Toxicity

by daddysandy on Sat Aug 18, 2007 12:00 AM

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My dad is now in hospice care...it's just a matter of days, they say.

He underwent round one of 5 F U chemo for his esophageal cancer.  The next week, he lost over 20 pounds due to diarrhea...  We took him to the ER two weeks ago.  He was weak and frail, couldn't stand on his own.  His health declined quickly the week following chemo.

Tests were run to see if he had a stomach virus...would take 72 hours from the time a stool sample was collected and sent to a lab before we'd know the results.

Dad's health, meanwhile, declined while in the hospital.  Days later, we learned there was no virus, but that he had DPD enzyme deficiency, explaining why he reacted the way he did to his 5 F U chemo treamtment. 

We're not sure if he was tested for this enzyme deficiency in the first place, but we're going to find out.  This test should be a standard test performed prior to chemo treatments.  If it can help that small percentage of victims, it's well worth it.  I would have had more time with my daddy.  I don't want anyone else to suffer the way we all have these past two weeks. 

 Let's continue to spread the message of this enzyme deficiency and 5 F U.

RE: 5fu Toxicity

by Wilmabc on Sun Aug 19, 2007 12:00 AM

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Do I agree with you.  If more doctors were more involved with every part of the patients body I think sometimes the patient would not go thru some terrible situations they face.  I just lost my husband August 4th, the oncologist kept blaming the chemo on the loss of appietate, and the neuropathy but it was the cancer that was taking over.  I kept thinking he would get better and stronger so he would be able to get back on chemo again.  I had Hospice at home for 3 weeks and then the nurses suggested that it would be better and a bit easier for me to have him admitted. I stayed there for 23 days with him and it did make it a bit easier with the caretaking but I insisted on doing most of it.  I wish you and your family the best at this time.  I only wish doctors would be more in tune with their patients. 

WIshing you and your family peace and strength at this trying time.

Bernadette

RE: 5fu Toxicity

by rickbnsa on Wed Jan 16, 2008 12:00 AM

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Hello all,

I have just discovered this forum in learning about 5-fu/DPD deficiency.

My wife had her first infusion on 18 December, admitted to hospital on 24 December and she passed away on 3 Jan 08.  Each day brought a new and worse symptom of the reaction.  It ended so badly, we were not able to have an open casket memorial.

We understood she was "cancer free" since the colon resection in April last year.  This was a preventive therapy... 

The doctor didn't pretest or mention this danger.  He did mention he didn't test due to the low risk and not wanting to create a financial hardship during this time as insurance wouldn't cover the cost.  He allegedly ordered the test on 27 December and I have yet to know the results.

I'm seeking comments/advice on what legal steps can be taken and what avenue I can take to help start changing the system.  No one should have to endure what my wife did and no one should have to witness the outcome that our son did.

 

v/r

Rick B. 

RE: 5fu Toxicity

by soupson on Thu Feb 07, 2008 12:00 AM

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On 1/16/2008 rickbnsa wrote:

Hello all,

I have just discovered this forum in learning about 5-fu/DPD deficiency.

My wife had her first infusion on 18 December, admitted to hospital on 24 December and she passed away on 3 Jan 08.  Each day brought a new and worse symptom of the reaction.  It ended so badly, we were not able to have an open casket memorial.

We understood she was "cancer free" since the colon resection in April last year.  This was a preventive therapy... 

The doctor didn't pretest or mention this danger.  He did mention he didn't test due to the low risk and not wanting to create a financial hardship during this time as insurance wouldn't cover the cost.  He allegedly ordered the test on 27 December and I have yet to know the results.

I'm seeking comments/advice on what legal steps can be taken and what avenue I can take to help start changing the system.  No one should have to endure what my wife did and no one should have to witness the outcome that our son did.

 

v/r

Rick B. 


I am so sorry for your loss and I thank you and the others who have posted.  My husband was going to take this for skin cancer on his face.  No one suggested a test for dpd deficiency. 

Thanks again to all,

carolyn a.

RE: 5fu Toxicity

by rickbnsa on Mon May 26, 2008 12:00 AM

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Hi again,

What a nightmare we've been wading through the last four months after losing Cheryl to  5fu.  I think in my original post we were awaiting test results.  They came back positive for DPD deficiency two weeks after she died.

I was just rereading this thread and noticed "geneguy"'s post from 12/16/06 stating insurance DOES cover this test.  Her oncologist used potential financial hardship as one of his excuses for not testing and said insurance DOES NOT cover the test. 

Can anyone let me know if you are aware of an insurance policy covering  this before treatment regardless of the test results?

I am also being told there is apparently little legal recourse as the test is not in the "standards of care".

We are hoping to start a memorial fund to raise awareness, change the standard of care to require the test and most importantly provide funds to pay for testing when a patient has no means to  remove this gamble with their life.  I hope to never hear of another doctor being able to use money as an excuse to put a person at risk with this drug.

rickbnsa 

RE: 5fu Toxicity

by Karenb on Mon May 26, 2008 12:00 AM

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I am so sorry for your loss. I am shocked to hear of this as I have been receiving 5FU for nearly two years and no one has ever mentioned the DPD deficiency risk to me.

As to your question about insurance coverage  . . . insurance policies vary and most doctors aren't aware of coverage - usually someone on their staff has the responsibility of verifying coverage. So the doctor using an insurance coverage issue sounds like an excuse to me.

I would call your insurance company and verify what the coverage is.

I'm not qualified to give legal advice, but it sounds like you have a viable case to me. I would seek advice from an attorney.

I did a google search and came across the following article - January 16, 2007 business wire which states that 3 to 5% have DPD deficiency. And this lower-cost test may now be available - and perhaps was available during your wife's treatment time.

http://findarticles.com/p/articles/mi_m0EIN/is_2007_Jan_16/a

RE: 5fu Toxicity

by JoJoMack on Sun Jul 06, 2008 12:00 AM

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Hello all.  I am so glad I found this site.  My husband had been applying 5FU on his arms for topical skin cancer.  The first couple of treatments went as they should have.  The last 2 times the pain was immediately severe and vomiting began after the first 2-3 days.  At the time, we thought the vomiting was due to the fact that his oncologist switched him from the cream version to the lesser expensive ointment version.  The swelling and rash above his eyes was worse and psoriasis set in around the unaffected areas.  We found the cream again through a Canadian Pharmacy as Efudex is ridiculously expensive in the states. Gotta love this government.  He was on day 5 yesterday--has been violently ill for the last 24 hours.  Sleeping now.  He discontinued the cream last night.  I don't know if I should take him to the hospital immediately or wait to call Dr. tomorrow (it's Sunday).  In my already brief search this morning I have only found technical $*#! regarding DPD Deficiency and nothing about what the hell we should do to treat the damage that has already been done.  Or should I rephrase that to "the damage it is DOING as I write".  I cannot believe that it is not mandatory to have this test regardless of WHAT percentage of the population has it.  Had we known this in advance, we would've taken the test regardless of the cost.  I am angry.  I feel violated and cheated.  For those of you that have lost loved ones, I am so terribly sorry for your loss.  This never should have happened.  Never.  I thank you all for posting your stories.  Will keep updating as we go.  Blessed to Bless.  -Joanne

RE: 5fu Toxicity

by Kaitlyn on Tue Aug 26, 2008 12:00 AM

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How is your husband? 

I have been on Topical Fluorouracil for 2 weeks for actinic keratoses.  I've become nauseous (not throwing up - just feeling like I will), diarrhea and hot flashes almost all the time.  Of course I cannot sleep.  I called the doctor yesterday, and the nurse returned my call today and said to stop using it.  I told her I'd use it for the final 2 days of treatment and then go off.  She said ok.  And then I started reading this blog!  

I don't have insurance, and the meds cost me about $350 (Efudex and the medication I'm to take when I'm done with each area).

Does anybody know how much the DPD Enzyme Deficiency test is?

Thank you! 

 

RE: 5fu Toxicity

by Dmedtesting on Sat Dec 13, 2008 12:00 AM

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On 12/12/2006 Geneguy wrote:

Molecular Diagnostics Laboratories in Cincinnati, OH tests for DPD enzyme deficiency.  mdl-labs.com  Hope this helps.

 

How did you know about MDL in Cincinnati?

RE: 5fu Toxicity

by Geneguy on Sun Dec 14, 2008 12:00 AM

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I googled 5 fu toxicity and dpd testing.   
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