strong neurological reaction-frightened

[cynthia_b]

I had my first infusion yesterday of Oxilatin. Was doing great until the last fifteen minutes but I started feeling "wonky" in my brain and felt muscle spasms, intense tingling and "paralysis" in hands, face, legs. Difficulty talking, swallowing and fast onset of the "cold" pain with even room temperature door handles, computer keys, etc. It is slightly better this morning. The oncologist suggested this was a more rare reaction and was concerned but not worried. For those of you who have experienced this I am curious as to how long it will persist. Was led to believe that the neuropathy was expected but not till later in treatment and not this severe. Also curious if there are any supplemements or home remedies you might suggest.
Thanks
Cynthia

[sadysue]

Hi Cynthia. Sorry to hear about the bad reaction you had to the oxaliplatin. I had quite a few "unusual" reactions to the drug also. "Unusual" is what my oncologist called it - terrifying is what I called it. I had problems with slurred speech, severe pain running up and down both arms and legs, cramps in my throat and tongue no matter what the temperature was, crazy pain in my gums/teeth...and so on. Chemo brain was my enemy too and still it. My oxali was cut in half right off the bat and then cut more at each chemo session until by my fifth (think it was the fifth) I was completely off oxali. It's been five years since my last chemo treatment and I still have lingering side effects with word pronunciation, balance, concentration, some neuropathy in hands and feet and gum/teeth pain. My onc told me that in his career, he only had one other patient that had severe and immediate reactions to oxali like me. Good luck with your treatment.

[cynthia_b]

The Craziest thing is it hurts to cry. My eyes go into spasms. I can't even cry. Guess I j
ust better stop feeling down and scared. Alternatives?

[sadysue]

Sorry, I can't recommend any alternatives. You oncologist may be able to suggest something. I wish I had stopped oxali sooner that I did - it is my understanding that the 5FU is the most important drug in the cocktail mix and the oxaliplatin is an enhancer. On the upside, I was diagnosed as stage 3 and have been free from cancer for over five years. The folfox worked for me and the residual side effects are nothing compared to losing my life. I have an active lifestyle (ride horses, hiking with my dogs, hop on a Harley every now and then, etc) so for me, it's worth it. The only thing I will suggest is that you must calm down - you are making things worse for yourself. If you can't do it on your own, insist that your doctor give you something that will help with stress and nerves. Good luck and best wishes to you!

[Beckster]

I feel your concern! It happened to me on my first infusion with oxi. I was fine the entire time, eating crackers, drinking tea and talking to other chemo patients. They were flushing out my lines and I was ready to leave when all of a sudden, I could not get enough air in my lungs. It progressed rapidly. I was shaking, my tongue was burning and I was frightened. My nurse immediately called the dr and they started the desensitizing process, which did not work. I was than given an Epi pen. It helped but took a while. They called 911 and spent the next 3 hours in the emergency room. I was sent home with steroids and 2 Epi pens.

I could not cry because the tears hurt, I could not eat because of jaw pain, I could not touch a fork or the sheets on my bed. I warmed up my water....it was horrible! This lasted for 4 weeks! My dr said no more oxi for me ( no shit!)... I told him that the extra 2-3% would not be worth it if this happened on my way home. I would have died!

Sorry but the doctors are full of shit! This happens more often than they say. It is not rare, in fact my nurse called me the next day to see how I was feeling. She said it usually does not happen until after the 2nd infusion. I am now just on Xeloda and quite happy... NO MORE OXI FOR ME!

Becky

[PainInTheAss]

I feel your concern! It happened to me on my first infusion with oxi. I was fine the entire time, eating crackers, drinking tea and talking to other chemo patients. They were flushing out my lines and I was ready to leave when all of a sudden, I could not get enough air in my lungs. It progressed rapidly. I was shaking, my tongue was burning and I was frightened. My nurse immediately called the dr and they started the desensitizing process, which did not work. I was than given an Epi pen. It helped but took a while. They called 911 and spent the next 3 hours in the emergency room. I was sent home with steroids and 2 Epi pens.

I could not cry because the tears hurt, I could not eat because of jaw pain, I could not touch a fork or the sheets on my bed. I warmed up my water....it was horrible! This lasted for 4 weeks! My dr said no more oxi for me ( no shit!)... I told him that the extra 2-3% would not be worth it if this happened on my way home. I would have died!

Sorry but the doctors are full of shit! This happens more often than they say. It is not rare, in fact my nurse called me the next day to see how I was feeling. She said it usually does not happen until after the 2nd infusion. I am now just on Xeloda and quite happy... NO MORE OXI FOR ME!

Becky

This is a reaction to Oxi, not symptoms.

[PainInTheAss]

I had my first infusion yesterday of Oxilatin. Was doing great until the last fifteen minutes but I started feeling "wonky" in my brain and felt muscle spasms, intense tingling and "paralysis" in hands, face, legs. Difficulty talking, swallowing and fast onset of the "cold" pain with even room temperature door handles, computer keys, etc. It is slightly better this morning. The oncologist suggested this was a more rare reaction and was concerned but not worried. For those of you who have experienced this I am curious as to how long it will persist. Was led to believe that the neuropathy was expected but not till later in treatment and not this severe. Also curious if there are any supplemements or home remedies you might suggest.
Thanks
Cynthia

I had the very same thing. These are actually all possible symptoms, not a reaction. They are very unusual so my chemo nurses kept running back to the computer to look up each one to see if it was a reaction or a symptom. My muscles froze, I couldn't talk, very blurry vision, pulsating muscle spasms in my calves. This all started on my third infusion. so it was scary. It is rare, which is why they didn't immediately know these were possible symptoms.

None of this is neuropathy. Cold sensitivity is different than neuropathy. Each infusion, the cold sensitivity lasted a little bit longer for me until it was barely gone before my last infusion. The first time, it lasted about a week.

My Oncologist recommended Ativan and it made a huge difference. The next time I had an infusion of Ativan, but after that, I just took pills an hour before my infusion. It doesn't eliminate all the symptoms, but it reduces the muscle problems like cramps and freezing significantly. There isn't really anything you can do about the cold sensitivity but avoid anything cold. Bring gloves if you are in a part of the country that still has cold weather (I live in Arizona and started chemo in 70 degree weather).