Oxaliplatin: for how long can be taken?

javier_garcia123

Which is the longest period of time (and/or how many cycles) you have taken of Oxaliplatin? I ask this because mom here can need several cycles, due to liver metastasis, before the secondary effects make it think on other options? I ask either about personal experiences, or what you read/hear anywhere, thanks

traci43

26 is what I had total

A lot depends on how your body reacts and how quickly the numbness becomes a problem.  The side effects are usually what causes one to have to stop that and go to Irinotecean with 5FU.

After my initial surgery in 2007, I had 12 rounds of FOLFOX with Avastin.  I had a recurrance in 2009 and had another 14 rounds--8 before surgery and 6 after.  The last one, I ended up in the hospital overnight with a fever, I had chills the entire time I was being infused but didn't tell the nurses.  I also had a bad reaction on timewhen I stood under an air conditioner vent right after the infusion.  I couldn't feel myself breathe.  I could literally feel less and less of my lungs for about three breaths, then no feeling.  It scared the crap out of me and I wound up in the ER over that one too.  I was in the pharmacy getting my antinausea meds when it happened.  After my 26th round in December 2009, my onc said no more. Hope this helps, Traci

herdizziness

22 round this time

I can't tell you all the Oxyplatinin rounds hat I've had but over 5 years, I've done it three times in different chemo protocol's.  Currently I'm on my 22 round, next week makes 23 in a row.  I've probably had the Oxy over 100 rounds, so I can't tell you how many times you can have it, appears endless as long as it works.

If you were to buy those gloves and feet covers that causes your hands to be very cold during infusion and for a while after infusion I understand you can do away with the neuropathy (they do the same now for hair, in order not to lose it, they have caps that keep the head cold and the chemo away resulting in being able to keep hair for those that have a certain chemo) I personally drink ice water during before, during and after infusion of the Oxy, I can drink ice cold water every day, it's so wonderful not to have to drink warm water for days.  this infusion is the first time I tried drinking ice water during infusion and what a wonderful difference.  I also keep my hands and feet as cool as I can stand it (still can't bring myself to ice them during infusion), but the chemo according to my oncologist stays away from the cold, which is why I can drink ice water without side effects.

Hoping for the best for your Mom, 

Winter Marie

traci43

herdizziness said:

22 round this time

I can't tell you all the Oxyplatinin rounds hat I've had but over 5 years, I've done it three times in different chemo protocol's.  Currently I'm on my 22 round, next week makes 23 in a row.  I've probably had the Oxy over 100 rounds, so I can't tell you how many times you can have it, appears endless as long as it works.

If you were to buy those gloves and feet covers that causes your hands to be very cold during infusion and for a while after infusion I understand you can do away with the neuropathy (they do the same now for hair, in order not to lose it, they have caps that keep the head cold and the chemo away resulting in being able to keep hair for those that have a certain chemo) I personally drink ice water during before, during and after infusion of the Oxy, I can drink ice cold water every day, it's so wonderful not to have to drink warm water for days.  this infusion is the first time I tried drinking ice water during infusion and what a wonderful difference.  I also keep my hands and feet as cool as I can stand it (still can't bring myself to ice them during infusion), but the chemo according to my oncologist stays away from the cold, which is why I can drink ice water without side effects.

Hoping for the best for your Mom, 

Winter Marie

No way!

YOu can drink cold water while being infused with Oxi?  Wow, it felt like every nerve in my mouth was electrified when I drank cold water.  Amazing.  The things you learn.  Good for you.  I hope the treatment is working, I know you had some tough times lately.  Traci

Easyflip

After 10

rounds they took me off because my white blood cells and platelets got dangerously low. I had neuropathy also and was told it was normal. Unfortunately I still have neuropathy today and it's been 1 year and 4 months. My doctor thinks it may be permanent.

Easyflip/Richard

herdizziness

traci43 said:

No way!

YOu can drink cold water while being infused with Oxi?  Wow, it felt like every nerve in my mouth was electrified when I drank cold water.  Amazing.  The things you learn.  Good for you.  I hope the treatment is working, I know you had some tough times lately.  Traci

Yes, Traci

If you start drinking the ice water before, during and after (about 10 minutes before and I drink for 30 minutes after) you may find like me, that the cold water does not affect your throat.  The first time I did Oxy, it was 5 days before I could drink even room temperature water (had to heat it for 20 seconds in microwave) it was like swallowing shards of glass down my throat a definite No No, and the second time, it was eventually 8 days before I could drink anything cold.  But this time, I did the ice water and have been able to drink it every day.  The only problem I seem to have is with ice cream because it doesn't feel good on my lips (Oxy must affect the lips too) but it's okay to swallow.

After 5 years of chemo, experimentation finally has some good results for me

Winter Marie

Trubrit

Easyflip said:

After 10

rounds they took me off because my white blood cells and platelets got dangerously low. I had neuropathy also and was told it was normal. Unfortunately I still have neuropathy today and it's been 1 year and 4 months. My doctor thinks it may be permanent.

Easyflip/Richard

Don't listen to the Doctor...

Well, listen to him, but don't give up on the neuropathy going away. 

I am 18 months out of treatment, and have seen gradual improvement but not much, and then this past couple of weeks, I have seen vast improvement. The other day my husband was tickling me, and he tickeled my feet and I could actually feel it. I mean, it was a tickle I felt, not that 'something is touching me' sensation. 

So, maybe your Doctor is right but maybe he isn't. 

I'm reminded of a David Soul record from the 70's 'Don't give up on me Baby'.  

Sue - Trubrit