I structured this in case you or a loved one might fall into two categories:
- 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.
So if you are reading this and fall into category A, the next step is simple:
GET TESTED before taking any chemo.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
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