Alice Beers, RN, BSN, OCN, outlines some suggestions on how to educate the patient and family members on recognizing and reporting 5-FU or capecitabine toxicities.
I had 8 rounds of capcitebine chemotherapy. Each round was 2 weeks long with a 1 week recovery break. I was fortunate enough to have a good oncologist. I was tested prior to starting my chemotherapy. Prior to starting each round I had more blood tests. I also received a chemotherapy induction/education course prior to starting the course of treatment. I did suffer many side effects but they were very actively managed. Chemotherapy is not all bad news. I am now cancer free for 16 months. I am looking forward to making it to year 2. Without the expertise of my diagnosing consultant, my surgeon, oncologist and all the countless other medical staff that contributed, I would not be here now.
@@marivicchansing4717 Prior to starting my chemotherapy I had a DPD test and something called a HalioDX test. I'm now just over the 2 year mark, entering year 3. So far so good.
In the UK mandatory testing will begin in April 2021 for DPD deficiency but only if you are about to receive 5FU or any of it's derivatives. If you are about to receive chemotherapy, with any of those derivatives which include Capecitabine, Xeloda etcetera please check with your doctor that you have had the test, it is a simple blood test, and that you are not deficient and if found partially deficient that they will be seeking to arrange an alternative treatment for you or your loved one.
In the UK the oncology unit I took my wife to when she began showing signs of severe chemotherapy toxicity from 5-FU never understood what was happening! The oncologists don't test for DPYD in fact they don't even mention it as a concern prior to any treatment being given? Do they know about it? Yes. Do they suggest it? No. In the UK and parts of Europe it has become a lottery on if you live or die at the hands of the oncologists! My wife died! One cycle of the poison that is 5-FU and I had to watch her being burnt from the inside out as it took 22 days for her to die! How do those oncologists live with themselves? Its estimated that 600 lives are lost every year to this and in France 1600 and testing is mandatory there!! In the UK they won't even acknowledge there is a major problem!!! Why?
my mother had severe gastro side effects in the first cycle itself and couldn't even complete first cycle of 5fu (oral - capecitabine).......she had to be admitted for acute gastro toxicity and couldn't eat and drink at all and will vomit everything with severe abdominal pain and diarrhea and ulcers........we took her to another hospital and now they again want to do this chemo in their own way (reduced dose and through IV instead of oral)......my mother said she would rather prefer to die than go through this chemo again......I am planning to have a word with doctor to convince him of doing only radiation therapy instead of their planned chemoradiation
If your oncologist denies the existence of DPD deficiency please ask to be referred to another doctor. Do not accept that 'they know best' it is not they who could suffer death as a result of their actions.
@@igorkaczmarski7794 Hi Igor I hope I find you well. Can I begin by saying that 5FU and any of its derivatives are dangerous and or fatal for those of us who are partially or totally DPD deficient. An intravenous infusion of 5FU is always fatal for those who are DPD Deficient and Capecitabine along with any of its many other brand names is just the tablet form of the same chemotherapy drug. You must get TESTED BEFORE any type of treatment with any of the chemo treatments which involve 5FU and any of its derivatives. It is a simple blood test that can be done along with all of the other many blood tests that we all undergo when attending hospitals for treatment. You don't say which country you live in so I am unable to advise specifically on what is and isn't offered by your health services. What I can tell you is after two yers lobbying the European Medicines Agency and supplying many many cases of deaths around the world, my own wife's included, the EMA came to the conclusion that 'all patients about to undergo treatment with 5FU or any of its derivatives should be required to be tested prior to any and all treatments with that family of chemo drugs" This is in line with the 'Clinicians Leaflet' which is supplied with the drugs and the drug manufacturer themselves 'recommend testing'. In the UK it is now required to test before any treatment begins but I am still finding that requirement is being ignored by many oncologists. France also require testing before treatment and again that is being ignored by reckless oncologists. Many other EU countries are ignoring the recommendations. In conclusion and I apologise for being so long winded, if you or a member of your family are about to begin a course of treatment with any chemotherapy drug associated with 5FU please please please demand a simple DPD blood test and if you are forced to pay for it yourself then do so because it could very well save your life, there is no antidote of any value available and even if available it must be given within 36 hours of the issue being diagnosed to have any chance of helping ! In my wife's case it was very nearly six days before they began to listen to what I was saying because I wasn't an oncologist. I have only read of the antidote being given once, in America, and the poor lady died a couple of years later having been left with awful side effects. May I suggest you ask the consulting oncologist one simple question ! WOULD YOU GIVE THIS TREATMENT TO YOUR WIFE, SON, DAUGHTER, MOTHER or FATHER ! If they can't look you in the eyes when they answer then you have your answer. I hope all of the above helps. Take care and I wish you and your family well. Test test test is the mantra.
@@igorkaczmarski7794 A DPD blood test, is carried out the same way any other blood test is taken ! A needle inserted into the arm via a vein and blood is drawn for analyse. In this case the laboratory would be testing for evidence of if the subject is DPYD/DPD deficient thus indicating whether they would, and I'm explaining this in the most basic terms, be susceptible to an adverse reaction to the effects of the chosen chemotherapy. If found to be partially deficient then an alternative treatment could be sought but if totally deficient then no chemotherapy with that particular drug should be given. If you are or have any concerns then talk to your oncologist and request the blood test. If he doesn't know what you are talking about then if I were you I would seek another oncologist but that has to be your decision.
I had 8 rounds of capcitebine chemotherapy. Each round was 2 weeks long with a 1 week recovery break. I was fortunate enough to have a good oncologist. I was tested prior to starting my chemotherapy. Prior to starting each round I had more blood tests. I also received a chemotherapy induction/education course prior to starting the course of treatment. I did suffer many side effects but they were very actively managed. Chemotherapy is not all bad news. I am now cancer free for 16 months. I am looking forward to making it to year 2.
Without the expertise of my diagnosing consultant, my surgeon, oncologist and all the countless other medical staff that contributed, I would not be here now.
Did you have a blood test for DPD?
@@marivicchansing4717 Prior to starting my chemotherapy I had a DPD test and something called a HalioDX test. I'm now just over the 2 year mark, entering year 3. So far so good.
In the UK mandatory testing will begin in April 2021 for DPD deficiency but only if you are about to receive 5FU or any of it's derivatives. If you are about to receive chemotherapy, with any of those derivatives which include Capecitabine, Xeloda etcetera please check with your doctor that you have had the test, it is a simple blood test, and that you are not deficient and if found partially deficient that they will be seeking to arrange an alternative treatment for you or your loved one.
In the UK the oncology unit I took my wife to when she began showing signs of severe chemotherapy toxicity from 5-FU never understood what was happening! The oncologists don't test for DPYD in fact they don't even mention it as a concern prior to any treatment being given? Do they know about it? Yes. Do they suggest it? No. In the UK and parts of Europe it has become a lottery on if you live or die at the hands of the oncologists! My wife died! One cycle of the poison that is 5-FU and I had to watch her being burnt from the inside out as it took 22 days for her to die! How do those oncologists live with themselves? Its estimated that 600 lives are lost every year to this and in France 1600 and testing is mandatory there!! In the UK they won't even acknowledge there is a major problem!!! Why?
my mother had severe gastro side effects in the first cycle itself and couldn't even complete first cycle of 5fu (oral - capecitabine).......she had to be admitted for acute gastro toxicity and couldn't eat and drink at all and will vomit everything with severe abdominal pain and diarrhea and ulcers........we took her to another hospital and now they again want to do this chemo in their own way (reduced dose and through IV instead of oral)......my mother said she would rather prefer to die than go through this chemo again......I am planning to have a word with doctor to convince him of doing only radiation therapy instead of their planned chemoradiation
So sorry to hear. God Bless
My Dad died of this Chemo fu5 after just one treatment dose. He died in 2 weeks
So sorry to hear of your loss and so sorry I wasn't able to offer any help. This drug is a killer for those who are DPD deficient.
can you explain more what happend
@@lordelpus4283What’s DPD Deficient
If your oncologist denies the existence of DPD deficiency please ask to be referred to another doctor. Do not accept that 'they know best' it is not they who could suffer death as a result of their actions.
is oral Capecitabine safe?
@@igorkaczmarski7794 Hi Igor I hope I find you well. Can I begin by saying that 5FU and any of its derivatives are dangerous and or fatal for those of us who are partially or totally DPD deficient. An intravenous infusion of 5FU is always fatal for those who are DPD Deficient and Capecitabine along with any of its many other brand names is just the tablet form of the same chemotherapy drug. You must get TESTED BEFORE any type of treatment with any of the chemo treatments which involve 5FU and any of its derivatives. It is a simple blood test that can be done along with all of the other many blood tests that we all undergo when attending hospitals for treatment. You don't say which country you live in so I am unable to advise specifically on what is and isn't offered by your health services. What I can tell you is after two yers lobbying the European Medicines Agency and supplying many many cases of deaths around the world, my own wife's included, the EMA came to the conclusion that 'all patients about to undergo treatment with 5FU or any of its derivatives should be required to be tested prior to any and all treatments with that family of chemo drugs" This is in line with the 'Clinicians Leaflet' which is supplied with the drugs and the drug manufacturer themselves 'recommend testing'. In the UK it is now required to test before any treatment begins but I am still finding that requirement is being ignored by many oncologists. France also require testing before treatment and again that is being ignored by reckless oncologists. Many other EU countries are ignoring the recommendations. In conclusion and I apologise for being so long winded, if you or a member of your family are about to begin a course of treatment with any chemotherapy drug associated with 5FU please please please demand a simple DPD blood test and if you are forced to pay for it yourself then do so because it could very well save your life, there is no antidote of any value available and even if available it must be given within 36 hours of the issue being diagnosed to have any chance of helping ! In my wife's case it was very nearly six days before they began to listen to what I was saying because I wasn't an oncologist. I have only read of the antidote being given once, in America, and the poor lady died a couple of years later having been left with awful side effects. May I suggest you ask the consulting oncologist one simple question ! WOULD YOU GIVE THIS TREATMENT TO YOUR WIFE, SON, DAUGHTER, MOTHER or FATHER ! If they can't look you in the eyes when they answer then you have your answer. I hope all of the above helps. Take care and I wish you and your family well. Test test test is the mantra.
@@lordelpus4283 what is DPD blood test ?
@@igorkaczmarski7794 A DPD blood test, is carried out the same way any other blood test is taken ! A needle inserted into the arm via a vein and blood is drawn for analyse. In this case the laboratory would be testing for evidence of if the subject is DPYD/DPD deficient thus indicating whether they would, and I'm explaining this in the most basic terms, be susceptible to an adverse reaction to the effects of the chosen chemotherapy. If found to be partially deficient then an alternative treatment could be sought but if totally deficient then no chemotherapy with that particular drug should be given. If you are or have any concerns then talk to your oncologist and request the blood test. If he doesn't know what you are talking about then if I were you I would seek another oncologist but that has to be your decision.
@@lordelpus4283 what is DPD