oxaliplatin desensitization

db8ne1 said:

Sorry.  I've had 6 rounds of FOLFOX so far.  The 1st 3 rounds were pretty horrific as far as side effects (although the actual infusions went OK).  After the 3rd infusion I went home and that night my legs went out on me.  I also had back hand cramping and lips cramping shut, among other things. They decreased my oxi by 25% on the 4th and subsequent rounds and while the side effects are still crummy, they have been more manageable. 

Unfortunately (or fortunately for me), I haven't had any issues with the actual infusion, so I can't personally provide advice.  That said, I've seen a number of posts on various cancer boards from folks who have had bad infusion reactions.  Many have had success with longer infusion times - like 6 hours instead of 2. As I'm sure you have heard and seen numerous times: everone is different.

I hope that helps.

Best wishes!

Jenni

Yes, my understanding is if we try it it will be a long infusion time, and they will pump me full of steroids and benadryl before we start.

thxmiker said:

We need to self advocate!

I had a similar issue with Oxi.  I took 3 weeks off of Chemo to get my health back. Then they lowered the dose of the chemo cocktail.  I was still very sick, buit it was tollerable. I only made 10 rounds of the Folfox w/Avastin cocktail.  At round 10, I also took three weeks off before I would go back to the Oncologist.  I was just to sick.   The Onc asked if I thought I could continue.  I told him only if it was absolutely necessary.  He then told me I was done with chemo.

 

We need to self advocate!  If you are to sick, then take a break or stop treatment.

 

Best Always,  mike

It sounds like you had a rougher time with oxi than I did. The only time I delayed chemo was when my oncologist made me because blood work was off, and then when he had me stop after the allergic reaction.

susiemw said:

a few hours after the

a few hours after the first treatment she  suddenly started coughing and hacking like there was something stuck in her throat.

It  lasted a short time and resolved on it's own.   next tx it was worse and we went to the ER by the time

we were there she was fine.  Next treatment it was worse, went to ER, by the time we got there she was fine.

Told the oncologist who chose not to pay attention (may he rot in hell)

he gave her another treatment, and let her leave without anyone being with her.

She made it to the outside doors of the clinic when she suddenly couldn't breathe.

Thank goodness there was a patient coming in who helped her into the clinic and called for help.

Had epinephrine after which she was fine.  If she would have made it to her car she probably would have died.

It was a really scary scenario.  other than the breathing/coughing symptoms she didn't have any other symptoms

 

Susan

 

That sounds very scary. Mine happened shortly after they started my bag of oxaliplatin in the chemo room. My tongue felt somewhat itchy, but I didn't say anything (dumb me) until the itchy feeling had spread to other parts of my body. The nurses responded promptly by shutting off the oxi and giving me anti-allergy meds when I said something, by which point I'm told I was red and puffy. I think my tonsils may have been puffy too because it felt like there might be something hard stuck inside them (but not in my airway). The nurse brought over a vomit bag and asked if I felt sick when she started the benadryl etc. and I told her no. She said she'd leave it there just in case, and moments later I suddenly needed it, so I'm glad she did. My blood pressure also dropped and I felt like I might pass out, but then the treatment apparently kicked in and I started feeling better. I'm so glad my chemo nurse was on the ball. I'm sorry to hear your oncologist wasn't. Breathing problems are nothing to brush aside. I would think at the least he would have had her stay at the clinic a couple of hours to see what was happening or make sure it didn't happen again. I'm glad she was OK.

Glammom said:

I had reaction also

I had a severe reaction during my 7th treatment.  As soon as they began the oxali my throat closed i couldnt breathe.  They removed me from the IV gave me benedryl and it didnt work.  I was given an epi pen shot and still no relief.  Dr called the ambulance and I was sent to the hospital where I was watched for 5 hours.  slowly the benedryl and epi pen began to work.  I was sent home when my vitals and breathing was controlled.  I was given the option of ending the oxaliplatinor the desensitization.  The dr really wanted me to finish the treatment with the oxi so I did the desensitization.  Other than the fact that I had to sit for 7 hours on a slow drip everything went fine.  No other reactions.  I completed all 12 treatments.  Good luck!!

Thanks for sharing your experience, and for the good wishes. I'm pretty sure I'm going to go ahead and try the desensitization as my next move. My CEA is up, and I have a CT Wednesday, so I imagine we'll be making the final decision then.