Seratonin Storm and Kytril cautionary tale

[Deborah52]

Hi All. I've been getting Vidaza since June, 2015 with breaks and evaluations here and there. I had terrible issues with nausea from day 1. We tried everything! I had a bad reaction to Zofran. An angel nurse decided to try Kytril during the 4th round and it worked. I have used it every round since. I've also experienced terrible, crippling, depression, weeping, racing heart, sweating, etc. all symptoms of panic attacks, every round that I can remember!( I don't remember the first four rounds because I was throwing up non-stop.). These symptoms follow a pattern and get really intense by Day 3. By Day 7, I'm feeling suicidal. The tears and weeping dissipate rapidly after round is over. The heart racing etc always take much longer to go away: 10 days to 2 weeks. (Sorry for the inconsistent tenses) I have now discovered that a reaction between Kytril, a Seratonin antagonist, and anti-depressants is a real syndrome and can be very dangerous. I was on 2 antidepressants and they were two different classes of antidepressants which seems to increase the odds of having Seratonin Storm. Getting off of Effexor has totally taken care of it. I had no issues, no tears, no distress while taking my last round in March! Medical people I asked for help kept telling me I needed talk therapy, maybe a change in prescriptions, should maybe get a dog, go to yoga, take more walks. I kept telling them that the whole thing felt chemical and would somebody please look at my drugs and help me! I consulted one psychiatrist, 2 pharmacists, all supposedly oncology specialists, several talk therapy psychologists, 3 oncologists, every nurse that has administered Vidaza to me over the last 2 years. A cautionary tale folks. The information was plain to see except no one was looking. I was so overwhelmed and depressed with what was happening to me that I never looked up Kytril myself, until I was told to get a dog by a pharmacist. I assumed that everyone medical was well aware of drug interactions with the drugs they administered to patients daily. The saying about assumptions once again proven true. The Seratonin Storm was perfectly described in the drug info on Kytril on WebMD! It makes me want to rage and cry at the same time. Check everything yourself!!!! Be your own doctor advocate. Other people are not paying attention to this stuff the way we want to believe they are, even though they care a great deal. No one knows you like you know yourself. If you see someone having episodic emotional issues along with chemo, please encourage them to look at their drug interactions. It could be very fixable.

[maggiemag]

Wow, Deborah52, what a story! I am so sorry you had to endure such a nightmare, and the good news, I suppose, is that it's over and won't happen to you again. You surely would've thought that someone out of that large group would've picked it up. You are certainly a prime example that each patient has to be their own advocate, or at least a trusted family member.

I myself might not be here b/c of some (stupid) cardiologists' actions and orders that I stopped, but I'm a retired RN. My financial guy diagnosed his wife's very serious prolonged illness himself, with extensive research online, and that was also due to a drug interaction, and she had been scheduled to have a lung biopsy, not a minor thing.

So glad you persevered and survived!
Mags