Severe Early-Onset Toxicities From 5-FU or Capecitabine

[@tomrife5590]

On 11/29/2022 I lost my wife to capecitabine after she was taking it for around 10 days. If you are on capecitabine you and your caregiver need to be totally informed of the worst case scenario. It took my wife Karen from me, she was my childhood sweetheart, together for 52 years, married for 46.

[@wgtkdrtgwsm2332]

What happened? Please answer me!!🙏

[@sjladuke75]

Having used Effudex therapy multiple times previously without anything other than the expected localized reactions. My more recent experience involved NVD, headaches, dizziness & lethargy wasn't what I expected. What was upsetting- both my PCP & Dermatologist seemed like this was unheard of. As a former nursing manager, I'd read the package insert when I first became ill & realized this wasn't the first time it had occurred with 5fu. Luckily it happened towards the end of my course & knew the importance of preventing dehydration. It's important that all physicians & clinicians be aware of the potential toxicity from these & other chemotherapeutic agents.

[@wthomas7955]

Are you talking about topical application? Aren't these folks talking about intravenous usage for other than skin cancer?

[@FendergtrJam]

Dam straight...We are all LAB RATS 🐀, For real makes me sick. Sorry haven't used it yet kind of freaked out been doing a lot of reading anxiety is through the roof 😬

[@wthomas7955]

@@FendergtrJam I started a few days ago. It's definitely not something you'd choose to do if there weren't a significant upside. I'm guessing it's between the possible degradation of your liver or skin cancer. The skin cancer thing is likely 100% though, so I'll have to take my chances with the toxicity. I think the folks in the video are speaking about intravenous use for internal cancers. Which is a little bit of comfort anyway.

[@FendergtrJam]

God Bless you and be safe I need two more Cervival and Lumbar Fusions since 2018 after having three Lumbar fusions Covid hit and now I'm in limbo it's crazy I had three recent biopsies removed from my face one came back positive for squamous cell had it taking care of by plastic surgeon Mohs sorry I may have miss spelled that. Anyway yes I need to do my hands and my face a bit at a time. Good luck to you prayers 🙏

[@wthomas7955]

@@FendergtrJam The dermatologist I went to actually wrote a book on 5-FU. He's been at it a long time. He suggested something a bit different than what I'm seeing online as to how people use this stuff. Basically, he said you don't have to go full on for three weeks. You apply it twice a day until you see reactions, or in other words it starts to redden up, then dial the application back to twice a week. The only thing is you go longer than what everyone online seems to be doing. Six weeks instead of three. He says it's not as hard core with the skin damage but just as effective. He also recommended just doing smaller areas at one time, kind of like what you're planning. I suspect this could lead to less exposure of the liver to an onslaught of toxins. My dermatologist had skin cancer before as well. He did the treatment with 5-FU that he's recommending for me.

[@magneticB]

My second cycle of Capecitabine put me in hospital for three days a week after taking my last pills. Worst week of my life - both ends uncontrolled.. I switched to infusions of 5-FU after that and had no problems at all. I was in my 30s fit and otherwise healthy, docs didn't expect any bad reactions in me but everyone reacts differently.

[@theimperfectscrapper5313]

I’m currently on this drug. Listening to this is both terrifying and empowering. At least I can forewarn my family of things to look out for in order to call an ambulance.

[@FendergtrJam]

Very well said 👏 and Now I don't know if I will be using Efudex & contripotrien on my face I think I will just do tops of my hands wait a few weeks or months check my lab's and do just maybe my forehead and then T zone. This is scary stuff 😳...Thank's for this information.

[@wthomas7955]

I think these folks are talking about intravenous use, not topical. Otherwise, if you're putting it on your skin, why would it matter where on your body you use it? It's in the system in any case.

[@aimanmalik4411]

Cardic related issues why infact the drug increse bleeding rather then clotting of blood?

[@Uniquemua]

Cancer itself is scary & these medication side effects are even worse

[@wthomas7955]

That may be a bit of an over statement. Cancer can kill you easily enough.

[@Uniquemua]

@@wthomas7955 so can the chemo

[@wthomas7955]

@@Uniquemua If it was killing people as regularly as skin cancer, I'm sure we'd hear about it. Dermatologists are not motivated purely by profit.

[@amanda12305]

@@wthomas7955it is killing people very regularly!! Please do some research on 5-FU toxicity & DPD Deficiency! I know many people who were affected by it whether they lost a loved one or lived to tell the tale themselves that’s not usually the outcome. After my sisters death my mom and my family tried to get a law passed here in NY (Cherri’s Law) to make patients aware of the risks of this toxicity and DPD before receiving these chemo drugs and it didn’t pass unfortunately. Though Europe passed a law requiring doctors to inform their patients of these risks before receiving chemo and some states here in the US too but it’s an uphill battle. Sloan Kettering lobbied against my little old mom saying if they told patients of the toxicity risks they wouldn’t receive the life saving chemo they need because it would scare them out of the chemo and because it’s considered “rare” it’s not a concern more or less. That’s when my family decided to really get involved and we were even suing the doctors who were indicted but my mom died fighting that legal battle and without her here the case couldn’t move forward. 5-FU toxicity killed my sister in a horrific manner and she had only one 5-FU infusion and within a week she was in a full blown coma and had a completely ulcerated and bleeding mouth and throat, skin was literally peeling off her entire body (she inevitably died in a burn unit), she had to be medi-vaced and had a heart attack in the chopper and then organ failure started to happen shortly after. She looked like the crypt keeper the day we took her off life support and I wouldn’t wish what happened to her on my worst enemy. My family and I met a lot of other people who lost loved ones to the same thing and it’s way more common than they say it is in this video and that’s why I will never stop telling my sister’s story to hopefully save even one life.

[@涛海-z3z]

I just wanna hear them saying fluorouracil out loud, so that i can utter it correctlyᥬ😂᭄

[@FendergtrJam]

Very well said 👏 and Now I don't know if I will be using Efudex & contripotrien on my face I think I will just do tops of my hands wait a few weeks or months check my lab's and do just maybe my forehead and then T zone. This is scary stuff 😳...Thank's for this information.