DPD enzyme test for 5FU toxicity

2»

Comments

  • azgal
    azgal Member Posts: 31
    mp327 said:

    Hi azgal
    Yes, phone consults are done quite routinely these days, made much easier by the ability to send scan films and test results online. I know for a fact that MDA does them. I would hope, at the very least, this other blogger's doctor will agree to a phone consult with a specialist in anal cancer treatment.

    I hope so, too, for her sake
    Yes, and I believe all the major AC tx facilities are very open to consultations like that. Sometimes the inexperienced treating oncs need determined prodding from the patient for sure, some more than others, to go outside for expert input. It's not always easy but it's always well worth the effort. The Mayo oncs that examined/tested me were more than happy to consult with oncs involved in my tx, as was Chicago, and Chicago has specific mapping info available online for onc teams that request it, which was utilized for me. I learned that long distance consults were a fairly routine option (especially when requested/pressed for by the patient) over 4+ years ago when I was going through it, but I would never have known that when it counted without experienced input from other AC group members that had more collective information than 99.9% of oncs. Way back then, as a new AC patient armed at first with little to no knowlege, I felt apologetic when asking anything of my docs. I hope the woman on the other blog will turn the tide on her behalf when armed with knowledge. I know for a fact that it's an exhausting battle but it's well worth it. :)
  • mp327
    mp327 Member Posts: 4,440 Member
    azgal said:

    I hope so, too, for her sake
    Yes, and I believe all the major AC tx facilities are very open to consultations like that. Sometimes the inexperienced treating oncs need determined prodding from the patient for sure, some more than others, to go outside for expert input. It's not always easy but it's always well worth the effort. The Mayo oncs that examined/tested me were more than happy to consult with oncs involved in my tx, as was Chicago, and Chicago has specific mapping info available online for onc teams that request it, which was utilized for me. I learned that long distance consults were a fairly routine option (especially when requested/pressed for by the patient) over 4+ years ago when I was going through it, but I would never have known that when it counted without experienced input from other AC group members that had more collective information than 99.9% of oncs. Way back then, as a new AC patient armed at first with little to no knowlege, I felt apologetic when asking anything of my docs. I hope the woman on the other blog will turn the tide on her behalf when armed with knowledge. I know for a fact that it's an exhausting battle but it's well worth it. :)

    I agree
    It's all worth it when someone's life is on the line.
  • toucheole
    toucheole Member Posts: 1
    DPD Deficiency
    I am through with the first phase of treatment (chemo - 5FU and 28 days of radiation) for a Stage II anal cancer with no known lymph node involvement. I'll have surgery in February. My doctors have been great, but I think the test for DPD deficiency should be an automatic done before treatment starts. We are still waiting for the results to find out how deficient I am in the enzyme, but my over-reaction to 5FU started the 2nd week with mouth sores and diarrhea and I was taken off chemo entirely during the 4th week because the reactions were so severe. We are still trying to get the electrolytes in my body back to normal - almost all there except the magnesium levels are being stubborn. Since the number of people who are missing the enzyme or are at least deficient in the enzyme seem potentially to be relatively high, and the toxicity can be so severe, it seems to me that it should be a standard test. And this is particularly true because 5FU is such a staple of treatment for colo-rectal cancer. I've had some discussions already with my chemo oncologist (BTW, the radiation was a piece of cake compared to the chemo) about recommended chemo after surgery because all of the standard recommended treatments include 5FU in some form. On the other hand, one of my oncology nurses, who has been at this for 10 years, had never seen a reaction like I had to 5FU so maybe it's not that prevalent. The only thing I can say to others is that I have been told it is a Caucasian genetic abnormality, and, since cancer does not run in my family, it'll probably only impact me. However, I'm sure my brothers are glad to know so that if, by any chance, they end up with a similar cancer, they can request the test before theraqpy.
  • mp327
    mp327 Member Posts: 4,440 Member
    toucheole said:

    DPD Deficiency
    I am through with the first phase of treatment (chemo - 5FU and 28 days of radiation) for a Stage II anal cancer with no known lymph node involvement. I'll have surgery in February. My doctors have been great, but I think the test for DPD deficiency should be an automatic done before treatment starts. We are still waiting for the results to find out how deficient I am in the enzyme, but my over-reaction to 5FU started the 2nd week with mouth sores and diarrhea and I was taken off chemo entirely during the 4th week because the reactions were so severe. We are still trying to get the electrolytes in my body back to normal - almost all there except the magnesium levels are being stubborn. Since the number of people who are missing the enzyme or are at least deficient in the enzyme seem potentially to be relatively high, and the toxicity can be so severe, it seems to me that it should be a standard test. And this is particularly true because 5FU is such a staple of treatment for colo-rectal cancer. I've had some discussions already with my chemo oncologist (BTW, the radiation was a piece of cake compared to the chemo) about recommended chemo after surgery because all of the standard recommended treatments include 5FU in some form. On the other hand, one of my oncology nurses, who has been at this for 10 years, had never seen a reaction like I had to 5FU so maybe it's not that prevalent. The only thing I can say to others is that I have been told it is a Caucasian genetic abnormality, and, since cancer does not run in my family, it'll probably only impact me. However, I'm sure my brothers are glad to know so that if, by any chance, they end up with a similar cancer, they can request the test before theraqpy.

    Thanks for sharing
    Perhaps you are right in that this test should become standard for anyone about to receive 5FU, given the severe reaction you had. In my case, it was really the radiation that knocked me on my butt. I had some unpleasant side effects from the chemo, but nothing severe.

    I am curious and would like to know what type of surgery you are having following chemo/rad for stage II anal cancer if your cancer was localized to the tumor only. Thank you in advance for sharing.
  • alis7910
    alis7910 Member Posts: 80
    mp327 said:

    azgal
    Unfortunately, I don't know where this other blogger is located. I have given her some suggestions, such as MDA, MSK, UCSF and Fox Chase, but don't know if any of those locations would be doable for her. My hope is that someone on that tumor board will research those treatments guidelines, just as I have, and see that it specifically recommends chemo/rad if margins are not clear post local excision. According to what she posted, the margins are definitely not clear.

    I think this once again demonstrates the fact that this is still a rare cancer and many doctors just don't have the knowledge to correctly treat it. But even so, any doctor can get tons of information from the NCCN guidelines--enough, perhaps, to render the appropriate treatment. If not, then they should recommend that the patient see someone more experienced. I used to work for a doctor and I know how their egos can sometimes get in the way of the patient's care. That should never happen, but it does.

    The other thing that really chaps my cheeks (pun intended) about this cancer is the high percentage of people who are initially misdiagnosed, getting the old bleeding hemorrhoid diagnosis. That's what happened in my case, but lucky for me, I was about 4 years overdue for my first screening colonoscopy and my internist (who misdiagnosed me) referred me to a colorectal surgical group because they could do both the colonoscopy and take care of the "hemorrhoid." As soon as the colorectal doctor heard my symptoms, she took me in the exam room, performed anoscopy, and told me she was 99% sure I had cancer. I just don't understand how a doctor can make a definitive diagnosis of a bleeding hemorrhoid, as my internist did, with just a digital rectal exam.

    Based on my own experience, I tell everyone now who has rectal bleeding and is told by their doctor that it's a bleeding hemorrhoid after a simple rectal exam that they must go to a specialist for further evaluation, including visual exam by anoscopy. I also remind them that colonoscopy is not for viewing the anal canal and many anal cancers are missed during colonoscopy. The things we learn as we take this journey.

    MP327
    Hi:
    I was one of those who got a missed diagnosis; I was seeing a colon specialist for a special banding procedure for my hemmhroids, and despite all her exams, she missed the diagnosis! I think it is quite common.
    Alison
  • duckyann
    duckyann Member Posts: 159
    mp327 said:

    Thanks for sharing
    Perhaps you are right in that this test should become standard for anyone about to receive 5FU, given the severe reaction you had. In my case, it was really the radiation that knocked me on my butt. I had some unpleasant side effects from the chemo, but nothing severe.

    I am curious and would like to know what type of surgery you are having following chemo/rad for stage II anal cancer if your cancer was localized to the tumor only. Thank you in advance for sharing.

    I don't know if I was tested
    I don't know if I was tested for that enzyme or not but I did have to go into my oncologist before being hooked up to 5FU. They did a test drive on me to make sure I didn't have any reactions. NOt sure if they did the enzyme test or not.
  • mp327
    mp327 Member Posts: 4,440 Member
    alis7910 said:

    MP327
    Hi:
    I was one of those who got a missed diagnosis; I was seeing a colon specialist for a special banding procedure for my hemmhroids, and despite all her exams, she missed the diagnosis! I think it is quite common.
    Alison

    Hi Alison--
    I agree, as so many of us begin with a misdiagnosis of hemorrhoids. I think it happens mostly with our primary care doctors, but your story reminds us that even specialists can miss anal tumors.