We lost our mom, grandmother and great grandmother way too soon and unexpectedly due to lack of knowledge and
education not just on our part but within the medical community as well.
Not many people were aware that at the time of Mom's death, that we we were overwhelmed NOT with the fact that she was diagnosed with cancer and passed away quickly after starting treatment, but that mom died from the ACTUAL TREATMENT ITSELF.
Mom was strong and healthy and full of life the day she started chemotherapy and radiation. It was in the first 3 days that she took a turn for the worse down a path, that at the time we had no idea she had no chance of recovering from. 3 days after she started treatment her fate was sealed and we, her family, friends and even her doctors would not realize it for weeks to come.
It was in the final 3 days of moms agonizing ordeal that a genetic test came back that would show that mom
was DPD DEFICIENT. This is a gene that serves NO PURPOSE that science is aware of except to diffuse a specific type of chemo therapy.( short name,5FU)
This is the chemo they were using on mom.
Just to illustrate how this works ... say you need 2 teaspoons of a medication to make your illness better,
but this gene in your body diffuses or neutralizes 80% of that medication, so your Dr orders 10 teaspoons so that after your body has neutralized its 80% you are still getting the 2 teaspoons you
need....When a patient is DPD DEFICIENT their body does NOT have that gene to neutralize, diffuse or water down that medication, so you are actually now overdosed with 10 teaspoons of a
medication you should have only received 2 of.
Mom's chemo was given to her thru a pump over 5 days, by day 3 she had already received "30 teaspoons" instead of the "6" she should have. By day 5 she had received "50 teaspoons" instead of "10". Mom was diagnosed at that point with 5FU TOXICITY
Once the chemo enters the body we were told there is no way to call it back... it is poison that circulates thru your system and destroys everything it touches.
What started out as painful mouth sores soon became a list of issues and problems that nightmares are made of. As this chemo circulated throughout her body, it destroyed each vital organ it passed thru. Mom was basically being burned to death from the inside out. It was the scariest thing we have ever had to witness as the chemo, within 10 days began to burn away her flesh, leaving her unrecognizable. So grievous was her condition that my siblings and I decided not to let her grandkids come in to see her. We did not want this to be the image of her they remembered for the rest of their lives.
So our questions were simple ...how do you undo the chemo? and how come we didn't test her before giving her this chemo to make sure she had the gene she needed to process it?
The answers were ...because this DPD DEFICIENCY is sooooo rare, that less that 0.1% of the population has it and "IT'S NOT WORTH TESTING FOR SUCH A SMALL GROUP"... For those of you who have wondered why I am still so angry, why Dale still finds this almost impossible to talk about, why Eric has become so much more somber than he use to be and why Jamie and Sharon cant talk about mom or mention her name with choking back tears....this is why. this is the hell that we remember, being told it wasn't worth testing for.
As to how do we stop it? They told us at the time that there was no cure for 5FU toxicity no antidote to reverse the effects.
Well for the past 10 months I have followed others who have lost loved ones to the same tragic end and I have read countless articles and research studies that have been going on for years and found that the number of 5FU toxicity patients suffering serious complications and death are by no means 0.1%. And that an antidote has been used with great success for years in Europe, This antidote has been used in Europe that our Dr's were either not aware of or, not willing to use.
Today we wanted to let all of you know that on Dec.11, 2015, just 67 days after mom received her first dose
of 5FU, a mere 44 days after she passed away, The FDA approved the antidote for 5FU Toxicity in the US. This medication, if given within 96 hours
of the patients who showed signs of toxicity with their first dose has saved 95% of the patients.
Eric, Sharon. Dale, Jamie, and I have said over and over that we need to make sure that her dying somehow made an impact on this world, that her contribution in the universe be as big as her legacy and her love for Jesus and that she continue to serve here on earth even from Heaven The 5 of us all agree that the thing we want to do is to be in the trenches raising awareness for 5FU Toxicity and the antidote that is now available. And if Moms story is what makes the oncology world look up and realize that these "rare" patients are people too, they have families and friends and dreams and plans and LIVES that are worth saving, then that's what we will do, we will share her with the world to make somebody else's journey a little easier.
I know this doesn't help Mom but, if we can raise enough awareness that ONE person is sitting in an
oncologist office being told what their treatment plan includes 5FU chemo and they think to ask the question "Is this the chemo that can have a toxic side effect on some people?" then maybe we
just saved one person.
We love you Mom
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