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Honored Contributor
Posts: 39,297
Registered: ‎03-09-2010

lisa mason and gino.....update for 10/1/15

posted by lisa on facebook:

 

Lisa P. Mason

Friends. A confession. Gino almost died on August 14th. I got him to the hospital just in time. It seems that My Beloved has something known as DPD deficiency. A "silent" genetic mutation found in approximately 26 million Americans. Harmless unless the person is diagnosed with cancer and is given the chemotherapy drugs 5FU or Xeloda. Although the drug manufacturers disclose it, oncologists are not required to disclose the FDA Black Box warning. In essence, if a person is DPD deficient, his/her body cannot eliminate the chemotherapy. It just stays in the body and burns it from the inside out. Often times, it is fatal. I am beginning a grass roots campaign called "Rare, but there." Please, please if you or someone you know has been diagnosed with breast cancer, colon cancer, rectal cancer, esophageal cancer, head and neck cancer or ovarian cancer, I BEG you .... Google search "DPD deficiency and 5FU" or "DPD deficiency and Xeloda." I also beg you to share or post this everywhere you can. If you are on QVC's or HSN's chat rooms, please post. If you are on a cancer forum, please post! I shutter to think of the lives lost needlessly because patients/caregivers didn't know about DPD deficiency. If you want to join me on this campaign, I welcome it. God bless you! Please share this!!!!

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"The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing." - Albert Einstein
Valued Contributor
Posts: 585
Registered: ‎03-09-2010

Re: lisa mason and gino.....update for 10/1/15

Sunshine....thanks so much for posting this.  I actually knew someone this happened to and he died within a few weeks after discovering that the chemo was literally killing him because of this.

Honored Contributor
Posts: 18,885
Registered: ‎10-04-2010

Re: lisa mason and gino.....update for 10/1/15

Sunshine thank you and to Lisa, for posting this. There's so much in life we just don't know about and these things are important to know. Will continue to keep these people in prayers. What enormous stress they must be under.

Honored Contributor
Posts: 39,297
Registered: ‎03-09-2010

Re: lisa mason and gino.....update for 10/1/15

you are welcome ladies!

prayers and positive thoughts for lisa and gino.....

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"The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing." - Albert Einstein
Honored Contributor
Posts: 24,586
Registered: ‎03-09-2010

Re: lisa mason and gino.....update for 10/1/15

People do pass away from chemo complications as they call it, perhaps it is this type of condition they are actually dying from.

Honored Contributor
Posts: 9,844
Registered: ‎05-13-2010

Re: lisa mason and gino.....update for 10/1/15

[ Edited ]

@Shelbelle  Yes great point Ms Shel.  People do die but now we're unsure if it's from the cancer or the chemo.  Our drs don't talk about the DPD deficiency if their treatment of choice is 5FU.  Our's never did. 

 

To know this info now is scary as all get-out.  I know I'm freaked out by now knowing this.  I will be shouting this info from the rooftops now.  This morning I sent a note to a friend on FB.  He had a port installed just early this week.  This tells me he's in for many infusions although I don't know what drug.  I told hiim to be sure to talk to his dr about testing for the DYPD gene.

 

If we take a stand and bring this up to our oncologists, I wonder if they'll now become extremely proactive and do this very necessary testing prior to presribing 5FU.  I certainly hope so.

Honored Contributor
Posts: 14,321
Registered: ‎06-15-2015

Re: lisa mason and gino.....update for 10/1/15

Bravo!!

to Lisa for wanting to share with others who may unknowingly have theDPD DEFIENECY!!!

She may have saved many lives by reporting this to others.

 

Prayers said for her and Gino.

preds 06-21-20
"Always be thankful andyou'll have more than you know."
Esteemed Contributor
Posts: 6,173
Registered: ‎03-09-2010

Re: lisa mason and gino.....update for 10/1/15

Thank you for posting that. 

 

My Dad has had MDS for about 15 years and the chemo was so aweful  he quit it.  I wonder it he was experiencing that. 

Esteemed Contributor
Posts: 7,945
Registered: ‎03-17-2010

Re: lisa mason and gino.....update for 10/1/15

Lisa, our arms go around you and Gino and we thank God you were able to get him to the hospital in time.  Your information will be shared by all of us everywhere we go.... thank you for telling us.  God Bless both of you....

*~"Never eat more than you can lift......" Miss Piggy~*
Trusted Contributor
Posts: 1,144
Registered: ‎05-16-2015

Re: lisa mason and gino.....update for 10/1/15


@PINKdogWOOD wrote:

@Shelbelle  Yes great point Ms Shel.  People do die but now we're unsure if it's from the cancer or the chemo.  Our drs don't talk about the DPD deficiency if their treatment of choice is 5FU.  Our's never did. 

 

To know this info now is scary as all get-out.  I know I'm freaked out by now knowing this.  I will be shouting this info from the rooftops now.  This morning I sent a note to a friend on FB.  He had a port installed just early this week.  This tells me he's in for many infusions although I don't know what drug.  I told hiim to be sure to talk to his dr about testing for the DYPD gene.

 

If we take a stand and bring this up to our oncologists, I wonder if they'll now become extremely proactive and do this very necessary testing prior to presribing 5FU.  I certainly hope so.


 

 

 

 

 

Unfortunately, you probably just put "the fear of God' in this poor mans head, as if he doesn't have enough to worry about. The possibility of it happening is low, as you have to have an inborn allergy to one of the chemicals in that one drug.

You are a real boost to someone already fearfully worried.

 

Glad people didn't look me up to scare me about ALL of the so-called terrors of being treated for my cancer via long chemotherapy , radiation and surgery.

 

Thankfully, I managed to have faith that all would go well and it did !

 

Thank you to any family or friends or acquaintances that didn't try to "warn" me about the evils of cancer. We all already have enough to fear about it.