Get Tested for DPD Enzyme Deficiency
Before taking FLUOROURACIL (5FU) or CAPECITABINE chemotherapy make sure you get tested for DPD enzyme deficiency. It could save you life.
My Moms' Story
I wrote this post because my mother almost passed away at 54 years old from chemo toxicity as a result of an undiagnosed DPD deficiency. Basically, the DPD enzyme is responsible for breaking down uracil and thymine and is also needed to break down chemotherapy (specifically FLUOROURACIL (5FU) or CAPECITABINE) in your body. When you normally take chemotherapy, the chemo is meant to destroy the cancerous cells. You are able to survive chemotherapy normal because your body should normally be able, to metabolize and excel it from the body. If you have a DPD deficiency and take these chemotherapies, your body isn't able to metabolize the chemo and you are left with life threatening levels of the chemo in your body with no way out. Essentially, the chemo poisons you and the more doses you take the worse the reaction you have. My mother was at one of the best cancer hospitals in the world, attended to by leading physicians, and had a strong support system in her family which oversaw her care. Despite all these benefits, she still almost died because of this DPD deficiency. If it could happen to my mom despite all the advocates she had, I can only imagine what goes on for those facing cancer alone or at hospitals of lesser caliber. I hope that by telling her story in this post I can help others prevent this from happening or help to best treat and recover from chemo toxicity if they are already at that point.
prevention & treatment
I structured this in case you or a loved one might fall into two categories:
Even if the doctors are telling you that testing is unnecessary, do not listen. They may tell you comforting statistics like only 1% of people die from chemo and that the risk of toxicity is very unlikely; it doesn't matter. 1% does not seem very scary until you or your loved one is slowly dying from chemo toxicity and becoming that 1%.
My mother was treated by one of the leading oncologists and chemotherapy researchers in the country and was never advised to get DPD deficiency tested prior to chemotherapy. If the hospital is claiming that the testing is not covered and you will have to pay for the test out of pocket, explain to them that if it turns out you do in fact get chemo toxicity as a result of a DPD deficiency you will sue them for negligence. Additionally, you can explain to them that the cost of a test is tiny in comparison to the bill the hospital will foot trying to keep you alive. If those options fail, find a way to come up with a few hundred dollars. Your life is worth it. (email ---- if you can’t find money for a test and they will try to find the funds for you).
If it turns out you are DPD deficient your oncologist will most likely not prescribe 5FU or Capecitabine or will lower the dosage dramatically. In the case of the latter, just make sure you watch very carefully for signs and symptoms of chemo toxicity which I will describe in the next part of the post.
If you find yourself in scenario B, where you have begun 5FU/Capecitabine treatment, please be on the lookout for the following symptoms.
If you have any of these symptoms, immediately get in touch with your oncologist directly and explain to him your symptoms and that you might be DPD deficient or that you are suffering from chemo toxicity.. Please see the attached flyer from Vistogard, which is currently the only medication that can reverse chemotoxicity effectively if taken within 96 hours after the last dose of chemo. This drug is remarkable and you need to stay on top of your doctor to ensure that if you are suffering from toxicity, that you get this medication ASAP.
The website for Vistogard is www.vistogard.com
- Category A - (Pre Chemotherapy ) Ensure that before taking 5FU or Capecitabine Chemotherapy make sure you get tested for DPD enzyme deficiency (dihydropyrimidine dehydrogenase).
- Category B - (Undergoing Chemo Treatment) Identify the signs/symptoms of chemo toxicity cause by DPD deficiency after starting 5FU or Capecitabine
- Subsequently how to best reverse chemo toxicity and communicate with hospital staff to ensure that the right level of care and attention is being given to the patient.
Even if the doctors are telling you that testing is unnecessary, do not listen. They may tell you comforting statistics like only 1% of people die from chemo and that the risk of toxicity is very unlikely; it doesn't matter. 1% does not seem very scary until you or your loved one is slowly dying from chemo toxicity and becoming that 1%.
My mother was treated by one of the leading oncologists and chemotherapy researchers in the country and was never advised to get DPD deficiency tested prior to chemotherapy. If the hospital is claiming that the testing is not covered and you will have to pay for the test out of pocket, explain to them that if it turns out you do in fact get chemo toxicity as a result of a DPD deficiency you will sue them for negligence. Additionally, you can explain to them that the cost of a test is tiny in comparison to the bill the hospital will foot trying to keep you alive. If those options fail, find a way to come up with a few hundred dollars. Your life is worth it. (email ---- if you can’t find money for a test and they will try to find the funds for you).
If it turns out you are DPD deficient your oncologist will most likely not prescribe 5FU or Capecitabine or will lower the dosage dramatically. In the case of the latter, just make sure you watch very carefully for signs and symptoms of chemo toxicity which I will describe in the next part of the post.
If you find yourself in scenario B, where you have begun 5FU/Capecitabine treatment, please be on the lookout for the following symptoms.
- severe diarrhea
- a severe skin reaction which leads to peeling or blistering of the skin
- mouth sores (mucositis) inability to eat or drink without significant pain
- feeling or being sick which can cause dehydration
- a drop in the level of blood cells increasing your risk of infections, breathlessness and bleeding
If you have any of these symptoms, immediately get in touch with your oncologist directly and explain to him your symptoms and that you might be DPD deficient or that you are suffering from chemo toxicity.. Please see the attached flyer from Vistogard, which is currently the only medication that can reverse chemotoxicity effectively if taken within 96 hours after the last dose of chemo. This drug is remarkable and you need to stay on top of your doctor to ensure that if you are suffering from toxicity, that you get this medication ASAP.
The website for Vistogard is www.vistogard.com
Symptoms to look for
- severe diarrhea
- a severe skin reaction which leads to peeling or blistering of the skin
- mouth sores (mucositis) inability to eat or drink without significant pain
- feeling or being sick which can cause dehydration
- a drop in the level of blood cells increasing your risk of infections, breathlessness and bleeding
- It is important to know that between 10-30 out of every 100 people (10 - 30%) have severe side effects from 5FU and capecitabine.
If you have any of these symptoms, immediately get in touch with your oncologist directly and explain to him your symptoms and that you might be DPD deficient or that you are suffering from chemo toxicity.. Please see the attached flyer from Vistogard, which is currently the only medication that can reverse chemotoxicity effectively if taken within 96 hours after the last dose of chemo. This drug is remarkable and you need to stay on top of your doctor to ensure that if you are suffering from toxicity, that you get this medication ASAP.
The website for Vistogard is www.vistogard.com
Read Vistogard's flyer below about symptoms to look for
My Mom's Treatment and Recovery
Obviously chemotherapy is going to make you feel unwell, but there is a huge difference between unwell and the symptoms listed above. I can’t speak for other chemotherapies, but 5FU and Capecitabine should have mild side effects. My mom’s oncologists said that she wouldn't be throwing up and would feel fatigued but still able to go about her day. With these low expectations in mind, we opted to go through with chemotherapy after my mother’s successful surgery (She was diagnosed with stage 3 colon cancer and after removing her tumor found cancerous cells in 2 of her lymph nodes)The oncologists said that the safest choice was to go through with the chemo and we did.
At first my mom was fine. Her first dose of chemo was intravenous 5FU and then she went to oral Capecitabine twice a day. During the first few days she was tired and had diarrhea but after day 4 she was in bed all day, could hardly do anything, had bad diarrhea, and would get intense headaches which caused her to throw up. We called the oncology team and the nurse practitioner just told us to get her Imodium for her diarrhea and a wash for her mouth which started to develop a sore. The team claimed they were not worried and offered IV fluids. Another thing to mention is that around day 6 or 7 my mom was verbalizing her discomfort and saying things like, “this is poisoning me” and “I feel like I'm dying.” I bring this up because you have to listen to the patient. When we voiced the symptoms my mom was having they made it seem like what she was experiencing was normal and that it’s just the way chemotherapy goes. Despite hounding them on the portal and updating them on every development they continued to downplay our fears.
On day 7 we spoke with the oncologist directly and he said that she was having a bad reaction to the chemo and that she might have been overdosed from the beginning. He then decided to cut down her medication by half per day and recommended getting more IV fluid from an outpatient clinic that weekend. The morning of day 8 my mom was so sick that my dad realized something was very wrong and stopped the chemo medication all together. We drove my mom to urgent care on Friday to get some tests done and receive more fluid. She was monitored for a few hours and then they told us she could come home as her vitals were stable and she was feeling better. They were going to do a stool test to figure out her diarrhea issue but they ultimately decided against it. Another thing to watch for, IV fluids can make sick patients feel temporarily better and create a false sense of confidence. So we brought her home that weekend but on Monday her diarrhea got really bad and we rushed her right back. After finally doing a stool test they realized she had C-Difficile, a very bad bacterial infection in her gut which most likely came about from the chemotherapy destroying competing bacteria.
After getting this news we felt better because a) her cause of her diarrhea was diagnosed and b) she was no longer on chemo so we thought it shouldn't cause any more problems. However after three days in the hospital, she was not getting better and her blood results showed that her white blood cell count was close to zero and her heart rate was consistently in the 130 beats per minute range. The oncologist then realized that my mother was having severe chemo toxicity and ordered Vistogard to flush the chemotherapy out of her body. She was moved to the ICU and was placed under supplemental care plus antibiotics to treat her C Difficile. That same night then Vistogard arrived and my mother took her first dose which was extremely hard to take down given her severe mucositis. It is important to note that Vistogard only has been clinically proven to work if taken within 96 hours after the last dose of chemotherapy. My mother was past that time frame and I was very worried that the medicine would not work. Fortunately, after the first two doses my mothers vitals started to improve. My mothers surgeon saw her after the first 2 doses and told us that my mother would have a long recovery but that would be okay.
Ultimately, my mother was in the hospital for 18 more days which were very taxing on her body. Even with the Vistogard the mucositis and GI infection combined took a big toll. Doctors couldn't tell whether or not her bowel inflammation was from the bacteria or the mucositis and made it clear that until her diarrhea subsided and she could start taking down liquids that she would not be released. Throughout the 3+ weeks she was in the hospital in total her white blood cells went to 0, her red blood cells/platelets/hemoglobin fell to dangerous low levels, she received a blood transfusion, and was given a PICC line for nutrition. After leaving the hospital and resting at home my mother lost all her hair, was on nutrition bags for three weeks, and got a pulmonary embolism (clot) for which she was put on blood thinners. The clot caused extreme discomfort and was not diagnosed for days because we thought it was muscular. Thank God my mother recovered fully but unfortunately that is not the outcome for the thousands of people who die from chemo toxicity due to DPD deficiency.
In summary, receiving a DPD deficiency test before taking chemotherapy is simple, quick, and relatively inexpensive. As you can see from the story about my mother, the consequences of chemo toxicity can be life threatening, require intensive care and monitoring for months, and quite traumatic for the body and mind of the patient. Such trauma can be avoided by a simple test and you need to make sure that before taking FLUOROURACIL (5FU) or CAPECITABINE chemotherapy make sure you get tested for DPD enzyme deficiency (dihydropyrimidine dehydrogenase).
At first my mom was fine. Her first dose of chemo was intravenous 5FU and then she went to oral Capecitabine twice a day. During the first few days she was tired and had diarrhea but after day 4 she was in bed all day, could hardly do anything, had bad diarrhea, and would get intense headaches which caused her to throw up. We called the oncology team and the nurse practitioner just told us to get her Imodium for her diarrhea and a wash for her mouth which started to develop a sore. The team claimed they were not worried and offered IV fluids. Another thing to mention is that around day 6 or 7 my mom was verbalizing her discomfort and saying things like, “this is poisoning me” and “I feel like I'm dying.” I bring this up because you have to listen to the patient. When we voiced the symptoms my mom was having they made it seem like what she was experiencing was normal and that it’s just the way chemotherapy goes. Despite hounding them on the portal and updating them on every development they continued to downplay our fears.
On day 7 we spoke with the oncologist directly and he said that she was having a bad reaction to the chemo and that she might have been overdosed from the beginning. He then decided to cut down her medication by half per day and recommended getting more IV fluid from an outpatient clinic that weekend. The morning of day 8 my mom was so sick that my dad realized something was very wrong and stopped the chemo medication all together. We drove my mom to urgent care on Friday to get some tests done and receive more fluid. She was monitored for a few hours and then they told us she could come home as her vitals were stable and she was feeling better. They were going to do a stool test to figure out her diarrhea issue but they ultimately decided against it. Another thing to watch for, IV fluids can make sick patients feel temporarily better and create a false sense of confidence. So we brought her home that weekend but on Monday her diarrhea got really bad and we rushed her right back. After finally doing a stool test they realized she had C-Difficile, a very bad bacterial infection in her gut which most likely came about from the chemotherapy destroying competing bacteria.
After getting this news we felt better because a) her cause of her diarrhea was diagnosed and b) she was no longer on chemo so we thought it shouldn't cause any more problems. However after three days in the hospital, she was not getting better and her blood results showed that her white blood cell count was close to zero and her heart rate was consistently in the 130 beats per minute range. The oncologist then realized that my mother was having severe chemo toxicity and ordered Vistogard to flush the chemotherapy out of her body. She was moved to the ICU and was placed under supplemental care plus antibiotics to treat her C Difficile. That same night then Vistogard arrived and my mother took her first dose which was extremely hard to take down given her severe mucositis. It is important to note that Vistogard only has been clinically proven to work if taken within 96 hours after the last dose of chemotherapy. My mother was past that time frame and I was very worried that the medicine would not work. Fortunately, after the first two doses my mothers vitals started to improve. My mothers surgeon saw her after the first 2 doses and told us that my mother would have a long recovery but that would be okay.
Ultimately, my mother was in the hospital for 18 more days which were very taxing on her body. Even with the Vistogard the mucositis and GI infection combined took a big toll. Doctors couldn't tell whether or not her bowel inflammation was from the bacteria or the mucositis and made it clear that until her diarrhea subsided and she could start taking down liquids that she would not be released. Throughout the 3+ weeks she was in the hospital in total her white blood cells went to 0, her red blood cells/platelets/hemoglobin fell to dangerous low levels, she received a blood transfusion, and was given a PICC line for nutrition. After leaving the hospital and resting at home my mother lost all her hair, was on nutrition bags for three weeks, and got a pulmonary embolism (clot) for which she was put on blood thinners. The clot caused extreme discomfort and was not diagnosed for days because we thought it was muscular. Thank God my mother recovered fully but unfortunately that is not the outcome for the thousands of people who die from chemo toxicity due to DPD deficiency.
In summary, receiving a DPD deficiency test before taking chemotherapy is simple, quick, and relatively inexpensive. As you can see from the story about my mother, the consequences of chemo toxicity can be life threatening, require intensive care and monitoring for months, and quite traumatic for the body and mind of the patient. Such trauma can be avoided by a simple test and you need to make sure that before taking FLUOROURACIL (5FU) or CAPECITABINE chemotherapy make sure you get tested for DPD enzyme deficiency (dihydropyrimidine dehydrogenase).
Important Tips
- Make sure to start chemotherapy treatment on a Monday. This way if you have symptoms of chemotoxicity within the first 5 days of the week you can easily reach your oncologist and your care at the hospital will be much more efficient. During the weekends many specialists are gone and if you go to the hospital with full blown chemotoxicity you may lose precious days getting the proper care because you couldn't get in touch with your oncologist to properly diagnose you. Obviously, some patients can't afford to wait to start chemo given their stage of cancer, but if you can wait a few days to begin treatment, emphasize starting on a Monday.
- You have to be an advocate for yourself or your loved ones. There were many times when the nurses and doctors got annoyed with us for asking so many questions, but at the end of the day my dad and I caught multiple mistakes that could have really hurt my mother. You have to realize that the healthcare workers have many patients and their own personal issues. There is nothing wrong with double checking before they do something or asking questions.
- You need to listen to yourself or the person your caring for. My mother for example had a very high pain tolerance and my father and I both knew this. When my mother was complaining of her discomfort while on chemo, we should have realized that this was more than just normal chemo reaction given her pain threshold.
- The first priority needs to be managing symptoms. If symptoms are not resolving then no matter what the doctors or nurses say fight to get the best care possible and stay monitored. We got sent home from the hospital many times because they declared my mom to be stable when, if she had stayed one more day under care they would have been able to diagnose her much sooner. That brings me to another point, IV fluids. IV fluids can make symptoms go away when in reality it's just a temporary fix. Make sure to take this into account when understanding symptoms.
Contact
- Clearwater Beach, Clearwater, FL, USA
- 7278710999
- etsavoussis@gmail.com
- Mon-Fri - 08:00-19:00
If you want to speak to me to learn more about my mother's experience please feel free to call or email me. I would be happy to speak so feel free to contact me at any time.