Joannemci
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I am very happy to hear that. Dr. Diasio runs the DPYD Genetic Testing clinic at Mayo, so I’m happy to hear that his clinic regularly tests for the enzyme or genes prior to starting this family of chemo. It needs to become law — the sooner the better! Thanks for letting me know.
Hello – I just read your post tonight about your mom starting chemotherapy. My husband had a whipple surgery last year at Oregon Health Sciences University Hospital (The Knight Cancer Institute). Stage 1, no metastasis, no lymph node involvement, clean margins. He was pronounced “Cancer Free” by his Radiaion oncologist. He was prescribed capecitabine/Xeloda by his oncologist, but was not tested first for DPD enzyme deficiency. Tragically, he died 3 weeks after starting the chemo, as we later found out that he was DPD enzyme deficient – *2A variant. There is a simple blood test that can be performed — it doesn’t capture genetic deficiencies, but it will capture a majority of the DPD enzyme deficiency, which is ESSENTIAL TO METABOLIZING THE CHEMO! Please see my posting under my name from early this year about my husband’s tragic experience. Although it is somewhat rare, you still must insist on the test. Cost is about $200 and takes less than a week to get the results back. Read this recent publicity about the subject. My husband’s story is linked halfway down the article. Please let me know if she has the test and just as importantly, your oncologist’s response to your request for test. Thanks and best of luck! Joanne, Portland, Oregon
Dear Mary –
My apologies for not replying to your post earlier. My out-of-town family had been with me prior to and following David’s funeral and I am just now facing the full reality of his passing.
I have been in touch with Vistogard, the manufacturer of uridine triacetate, the antidote to the DPD enzyme deficiency and toxicity, and they are interested in knowing every aspect of David’s experience. They have reported his death to the FDA and I have also heard back from the CTI, Clinical Trial Institute (?), asking for more detail. Vistogard has sent me a number of copies of their brochure, warning users of Capecitabine of this rare but generally fatal reaction; I will have my friend in Portland bring them to the Cholangiocarcinoma Foundation Conference this week to distribute to any interested caregivers, patients or oncologists. I have made it my mission to do everything I can to ensure that no one ever again dies from this fatal toxic reaction due to the DPD enzyme deficiency. In France, a simple breath test is given to rule out this enzyme deficiency. Surely the doctors and hospitals in the US could make this available as well. Time to get the FDA on board.
Again, thanks so much for your support.
Best,
Joanne McIntyre
Portland, OregonThe patient you are discussing in this post is my husband, David McIntyre, of Portland, Oregon. Our family is devastated beyond belief that he passed away in the ICU at OHSU Hospital in Portland, OR on December 12. 2018. It was an unnecessary and extraordinarily painful death and could have easily been prevented had he been given these facts: #1: 1 in 1,000 people have the rare genetic DPD enzyme deficiency which could be fatal when taking Capecitabine; #2: a blood test can be done to to determine whether or not he has the DPD deficiency. It’s a case of whether or not one wants to play Russian Roulette with their life.
As I plan for David’s funeral next weekend (January 12), with my children, grandchildren, and many relatives and friends from across the country, we continue to be stunned and grieving for his preventable death. The protocol in every medical institution and every Oncologist’s office around the world must disclose to every patient who is prescribed Capecitabine or 5-FU that this enzyme deficiency is potentially life-threatening and that a blood test is highly recommended, if not required. This usually fatal side effect is not mentioned in ANY of the literature we received from the pharmacist or the oncologist.
In David’s story, his side effects of diarrhea, vomiting, nausea, body rash, mouth blisters and mucositis started on day 7 of his first course of Capecitabine (the day after Thanksgiving). I called his oncologist’s office the next day (Saturday), and left a message for his oncologist that these symptoms had begun. I spoke with a nurse on Monday and she advised him to take Imodium for diarrhea and an antihistamine for the body rash, even though I felt he should be seen. Worsening symptoms on Tuesday, to the ER where he was admitted overnight as an “observation” patient. His symptoms were being treated individually rather than as a syndrome. He was released Wednesday with medicines to treat each of the individual symptoms. His condition worsened overnight and we again went to the ER were he was admitted to the oncology floor on Friday. His symptoms became extremely severe over the weekend. He was given a Scopolamine patch on Sunday for the nausea, and he was never the same after that: delirium set in and never cleared up. The mouth blisters, mucositis, nausea, vomiting, diarrhea were out of control. It was not until Monday morning when the doctors were making their rounds that a more experienced oncologist recognized the symptoms and ordered the DPD enzyme deficiency blood test. The antidote Vistogard was ordered Wednesday, was flown in from Reno, NV and the 5-day course of treatment started Thursday evening. We missed the ninety six hour window to start the antidote treatment by an additional 7 days, all because his dangerous and severe symptoms were not recognized as potentially fatal.
David died a horribly painful death six days following the start of Vistogard. He suffered two strokes and was essentially comatose the last days of his life. He was 78 years old, had been incredibly healthy all of his life. He was diagnosed with Cholangiocarcinoma in July of last year; a small tumor blocked his bile duct in the distal region. He had a successful Whipple surgery performed by a brilliant surgeon at OHSU in September; he sailed through the recovery period, and his oncologist recommended adjunct Capecitabine for remaining pre-cancerous cells. Routine. Nothing to worry about except for possible hand-foot syndrome.
Our family is grieving. We are angry. And we are determined to spread the word that the dangers of Capecitabine must be recognized. Please go to the VISTOGARD website: hhttps://www.vistogard.com/ – print out the brochure “Don’t Wait to Sound the Alarm” and share with everyone you know who might be starting Capecitabine — and every oncologist you know who prescribes it! It could save a life! It would have saved my dear husband’s life.
Heartbroken in Portland, Oregon
