Sudden death with Folfox?

[Bob_Weiss]

I have read that patients with liver or kidney problems may be risky candidates for chemo, because the drugs may not be efficiently excreted from the body. Also, some heart patients would require careful monitoring.

[src1976]

My husband had first chemo treatment today with the Oxaliplatin iv, he his also taking oral Xeloda. They did mention the small risk of anaphylactic reaction to it,
but that is true with any medication. I was having spinal nerve blocks and had an anaphylactic reaction the 3rd time. I would definitely ask why they are taking this precaution as it is stressful enough having chemo without the added pressure of this rare reaction. Keep us posted!
He also had a heart attack several years ago and there is a rare chance of developing a cardiac problem, but they have to tell you the risks.

[ConnieSPK]

Hello,

I've had FOLFOX successfully, then subsequently reacted to it (became allergic) the next time I needed a course of chemo after having FOLFIRI. Regarding your words, "the possibility of a genetic allergy with the 3 products incorporated into Folfox", makes me wonder if they now have some sort of way to tell if certain folks might be more likely to have a reaction. Anyway, I would inquire further to get some answers from the onc on the subject....

Connie K

[rp1954]

Heavy duty 5FU treatments used to get about 0.2% up front, due to severe DPD deficiency.

[fdelorme]

Thanks to all,

What I conclude from this very informative exchange is that :

1) possible early deaths is due to DPD deficiency with the 5-FU;
2) In Canada, we don't perform pre-chemo treatment genetic testing to check if this is the case or not;
3) According to my oncologist, the probability is 1/50,000 (0.002%).

According to the nurse, the risk is over the first 2 treatments, where I guess, is the period where the intolerance materializes, should it be.

Francois

[NWgirl]

It is also possible to have an anaphylactic shock reaction to the oxaliplatin. My doctor said he's only seen it twice (me being one). It can happen at any point in treatments - I'd had many doses of oxi - no problem in this regard - and then BAM! It hit. It's important to be aware that although very rare, this can happen - and if you do start to experience it - that you speak up quickly so the nurses can address it. When I shared my experiences with others they said "how did you know what was happening?" - and honestly, it's because I've been reading this board for so many years that I just intuitively knew that something was wrong when my tongue started to itch.

Knowledge is power - so it's good to be aware of the risks and what to do if you experience them; but not obsess over them because these things really are the exceptions to the rule.

[BrianMc7]

Within the past few months someone here reported that their mother had died from 5FU being administered over 2 hours instead of 46 hours. Please ensure that the nurses check the settings on the fanny pack before you leave. My onc's office always has a second nurse come over before administering any chemo.

[Megansmom]

My 34 year old daughter died suddenly after her first folfox treatment for stage IV b colon cancer which had spread from her rectum to her lungs and liver. She had been hospitalized for fever after her very first treatment. The onc had indicated one of the possible drugs could result in sudden death as a rare side effect but we didn't select that treatment. No explanation for her death and the oncologist was shocked. Monitoring would not have helped. she was in the hospital when she collapsed in my arms, I called for help and cpr was administered immediately to no avail.

[jhocno197]

Megansmom, I am so sorry.

[NoFear32]

I was never officially tested for DPD but showed almost 100% of the symptoms from it (thankfully it wasn't actually 100% or I probably would be dead) after my first FOLFOX round. I am in the USA and I do not believe that DPD testing pre-treatment is standard either as less than 10% of people have issues with the Fusilev and 5FU given in the FOLFOX combo.

From my understanding, people with DPD (and there are varying levels of DPD), have a problem processing the FUSILEV and 5FU portions of the chemo drugs via their bloodstream. Their bodies can't break it down this way and it becomes deathly toxic. Some people can die instantly, and in others it may take a bit longer.

Just so you know, my symptoms began almost immediately after starting my first chemo round and involved difficulty breathing, heart palpitations, low and irregular heartbeat, immense chest pressure and pain, inability to eat or sleep or make it to the bathroom, uncontrollable nausea, and inability to walk or move unassisted. I was sent to the ER after my 48 hours with the pump attached and given nitroglycerin pills because they thought I was having a heart attack or stroke at 32 years old.

For my FOLFOX round #2 they reduced my dosages, but the same symptoms happened again. My onc switched me to XELODA pills for round #3 and kept the reduced OXI going via IV power port and this seemed to help me a lot as far as giving my body a way to process and breakdown the Fusilev and 5FU via my stomach vs the IV/bloodstream. I still had to take a long- acting nitroglycerin pill everyday that I was on chemo to prevent against my heart problems, but I was able to make it through 8 rounds of chemo like this.

And just to also put this out there - I have NEVER had issues with my heart, chest, or any medications prior to this and I have never been known to be allergic to anything. I was perfectly healthy before I found out suddenly I had stage 3 colon cancer. It was so out of the blue and very frightening.

[Nik Colon]

My 34 year old daughter died suddenly after her first folfox treatment for stage IV b colon cancer which had spread from her rectum to her lungs and liver. She had been hospitalized for fever after her very first treatment. The onc had indicated one of the possible drugs could result in sudden death as a rare side effect but we didn't select that treatment. No explanation for her death and the oncologist was shocked. Monitoring would not have helped. she was in the hospital when she collapsed in my arms, I called for help and cpr was administered immediately to no avail.

I am so sorry for your loss

[Thibault]

Umm, that's strange. My doctor would of never said that. I think anyone starting chemo should have someone with them anyway. I live alone and had my sister for the first treatment which I was glad because I ended up in the emergency room I was so violently sick.

[Joannerogers]

I had folfox also but no one mentioned sudden death. Still if she's alone with a 10 year old.....better to be prepared....wouldn't want the little one to experience that.