oxiliplatin long term

damama24

I'm just curious about some of the folks who have talked about their oncs stopping oxi after 8 or 10 treatments. I'm scheduled to recieve oxi for 26 rounds of chemo and it kind of scares me. Especially when I read about folks whose drs stopped giving it to them. Makes me wonder if my onc thinks I'm a lost cause. Does my treatment sound unusual or am I just paranoid? Any information would be appreciated. Will ask doc more questions when I see her on the 9th.

dorookie

Wish I had the answers
I dont have any answers but I do know that we all handle things differently, so your not paranoid, my ONC had planned on me doing 12 rounds with the oxi, but it just didnt work out that way, he was happy that I had completed 7 rounds. I say just take it one treatment at a time, and please remember to let your ONC and medical team know of any unusual or bad side effects. Stay strong and stay with us.. I am sure others will bring more info for you shortly...Your in my prayers....

God Bless
Beth

Annabelle41415

Treatment
I don't think anyone could have 26 rounds of oxy (but I've not heard every case). When I first did the radiation and chemo (took pills every day of radiation), I did 28 days. I'm wondering if you are talking about that. The oxy is so strong that 26 rounds would be twice as long as most people can last. Ask your doctor if he plans on oxy for 26 treatments? Just never heard of anyone going that long.

Kim

damama24

Annabelle41415 said:

Treatment
I don't think anyone could have 26 rounds of oxy (but I've not heard every case). When I first did the radiation and chemo (took pills every day of radiation), I did 28 days. I'm wondering if you are talking about that. The oxy is so strong that 26 rounds would be twice as long as most people can last. Ask your doctor if he plans on oxy for 26 treatments? Just never heard of anyone going that long.

Kim

oxi long term
Right now I'm in a phase I clinical trial where the treatment is 26 rounds of chemo that consisits of oxaliplatin,5-FU, leucovorin and avastin along with the study drug apomab. The study is being done to see if the drug is safe when given to patients with metastatic colon cancer for up to a year. ASo I assume the oxi will be used every time. The amount has been reduced because of consistant low white cell counts, My counts the last two times were better. I am not scheduled for any radiation or surgery at this time only the chemo. Deb

Buzzard

damama24 said:

oxi long term
Right now I'm in a phase I clinical trial where the treatment is 26 rounds of chemo that consisits of oxaliplatin,5-FU, leucovorin and avastin along with the study drug apomab. The study is being done to see if the drug is safe when given to patients with metastatic colon cancer for up to a year. ASo I assume the oxi will be used every time. The amount has been reduced because of consistant low white cell counts, My counts the last two times were better. I am not scheduled for any radiation or surgery at this time only the chemo. Deb

I would ask if the Oxaliplatin has been drastically
reduced in dosage to dictate having 26 treatments instead of the norm of 12. What was your dx ? and if the dosage was cut way back then yes I can see in order to try another drug out that the decrease in oxy would allow the extended treatments without anymore or less extended side effects. It certainly does reduce the side effects when it is cut by 20% or infusion time is extended from 3-5 hrs so it would seem to work if drastically reduced to the same benefit and thinking about it might actually be easier than the 6 month and also be in the system longer to do more work taking out cancerous cells. It might even completely remove the temporary or permanent neuropathy we seem to get when infused over a 6 month period of 12 treatments...Please keep in touch and let us know how you are doing as you go along and what side effects you have and if the neuropathy is a problem at all with the extension of the treatment to 26 instead of 12..I am guessing that it may be the answer to the end of neuropathy in this treatment by adding an extra 6 months to it. Be worth it as far as Im concerned. Please keep us up on how you are doing...Hope and Love, Buzzard

Sundanceh

I Don't Know
26 sounds like a very high number to me!

I've never heard of anyone getting OXY for that long before. Even if they reduce it, I still can't see it going that long with Oxy - maybe with 5fu, Xeloda and Avastin, I might can see it, but not Oxy - I would get some clarification again from your onc on that number.

Standard protocol is 12 and most people never make that one - the risk of permanent neuropathy past 12 would not be worth it in my opinion.

I just don't see how the body can take 26 beatings of Oxy and still be standing.

I'm concerned for you about this and please let us know after you talk to your doc again.

just4Brooks

Sundanceh said:

I Don't Know
26 sounds like a very high number to me!

I've never heard of anyone getting OXY for that long before. Even if they reduce it, I still can't see it going that long with Oxy - maybe with 5fu, Xeloda and Avastin, I might can see it, but not Oxy - I would get some clarification again from your onc on that number.

Standard protocol is 12 and most people never make that one - the risk of permanent neuropathy past 12 would not be worth it in my opinion.

I just don't see how the body can take 26 beatings of Oxy and still be standing.

I'm concerned for you about this and please let us know after you talk to your doc again.

26 sounds like a lot to me
They but me on Oxy for 9 rounds 1 round everyother week, After I think what was my 5th round my fsce was so numb that I couldn't tell if I was blinking. So they lowerd by 20% after my 6th round they cut it out all the way do to nurve damage in legs and hands. I sill will finish out my chemo with the other drugs

Buzzard

just4Brooks said:

26 sounds like a lot to me
They but me on Oxy for 9 rounds 1 round everyother week, After I think what was my 5th round my fsce was so numb that I couldn't tell if I was blinking. So they lowerd by 20% after my 6th round they cut it out all the way do to nurve damage in legs and hands. I sill will finish out my chemo with the other drugs

I just thought ......
that if they were to cut it in half or even a third of what is normally done then it may be that the body would not suffer near the extreme effects that it produces , even the onset of neuropathy, or it may be that even a very small dosage produces the same side effect as a larger one. I was just thinking out loud is all. If you cut the dosage in half you could presumably do 26 instead of 12 and have the same effect but I am only guessing here, I have no fact to back my opinions, just food for thought.

maglets

Buzzard said:

I just thought ......
that if they were to cut it in half or even a third of what is normally done then it may be that the body would not suffer near the extreme effects that it produces , even the onset of neuropathy, or it may be that even a very small dosage produces the same side effect as a larger one. I was just thinking out loud is all. If you cut the dosage in half you could presumably do 26 instead of 12 and have the same effect but I am only guessing here, I have no fact to back my opinions, just food for thought.

sorry
sorry have never heard of that many oxy's...seems almost impossible. Everyone may be right...reduced dose. Sorry just don't know

mags

ninbug06

maglets said:

sorry
sorry have never heard of that many oxy's...seems almost impossible. Everyone may be right...reduced dose. Sorry just don't know

mags

My mom's first treatment
My mom just started oxi and had facial neuropathy during the first infusion. I wonder if this is permanent? Anyone been through 12 treatments and had the neuropathies go away? Also, she was given an anti-nausea med, which apparently keeps you awake? Never given an explanation about side-effects the day of treatment. So unhappy w/cruddy situation.

Thanks for your wisdom,

Linda

Kathryn_in_MN

ninbug06 said:

My mom's first treatment
My mom just started oxi and had facial neuropathy during the first infusion. I wonder if this is permanent? Anyone been through 12 treatments and had the neuropathies go away? Also, she was given an anti-nausea med, which apparently keeps you awake? Never given an explanation about side-effects the day of treatment. So unhappy w/cruddy situation.

Thanks for your wisdom,

Linda

I have facial neuropathy
A few things have helped. Benadryl as pre-med, and Bendaryl at the end of infusion. And my oxy infusion has been lengthened from 2 hours to 4. It was SUPPOSED to be 6 this time, but the nurse did it wrong, and it was less than 4. I was NOT happy. She is a sweet gal, but either she doesn't know how to do math, or she wanted off work early and my needing more time would have kept her there late. Still she could have left on time if she set me for 5 hours.

Ask for Benadryl and a longer/slower infusion of the oxy.

The extreme neuropathies I've had (all chest up) are not usual. They normally tell you about the common ones, and that is all. There are so many weird things that can happen there is no way to go over them all.

Check this website, it is one of the best for chemo drugs. Link to oxy below.
http://www.chemocare.com/bio/oxaliplatin.asp

jillpls

just had first treatment
HI, I just had my first treatment of oxy in 2.5 years and it was VERY tough. I thought the CPT-11 I had last year was bad but this is just as bad. Sick for an entire week. I'm still getting cramps and was in bed for two days. Bad bowel problems as well as lots of nausea. I can not imagine doing it for 26 treatments. God bless you and keep you strong.
JIll

Kathryn_in_MN

jillpls said:

just had first treatment
HI, I just had my first treatment of oxy in 2.5 years and it was VERY tough. I thought the CPT-11 I had last year was bad but this is just as bad. Sick for an entire week. I'm still getting cramps and was in bed for two days. Bad bowel problems as well as lots of nausea. I can not imagine doing it for 26 treatments. God bless you and keep you strong.
JIll

Emend
If you haven't tried it, ask for Emend. It has been a lifesaver for me. I still have a lot of nausea, but it has made the difference between wanting to live or die the first several days of chemo. Lots of people said Emend was a miracle drug for them too.

damama24

oxiliplatin long term
I plan on asking my onc a lot of questions on wed and will post any information she gives me about having oxy for 26 rounds and the amount that I receive. Hopefully she can put my mind at ease.

tiny one

oxi
My second course of chemo was oxiplatin. Keep in mind that one I had a temporary ileostomy. Two I had a mediport and would have continuous chemo for two days. I tolerated oxi very well, all 12 treatments. My side effects were pretty mild. The dosage was decreased at one point. My neuropathy in my feet is almost all gone now. This Feb will be going on 3 years cancer free.

SandyL

tiny one said:

oxi
My second course of chemo was oxiplatin. Keep in mind that one I had a temporary ileostomy. Two I had a mediport and would have continuous chemo for two days. I tolerated oxi very well, all 12 treatments. My side effects were pretty mild. The dosage was decreased at one point. My neuropathy in my feet is almost all gone now. This Feb will be going on 3 years cancer free.

Do you think
perhaps she meant 26 weeks? And not 26 treatments? Cause the 12 treatments that is typically prescribed is 26 weeks in duration. One every other week. Just a thought-I agree with the previous posters in that 26 seems outrageous and I would bet that it would not include Oxy each time. Husband had been scheduled for 12 treatments but only had the Oxy in the first 9, then just the 5 FU pump. He was stage 3. Now NED.

Sandy