New to the forum - nervous about oxiloplatin

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shutzele
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Re: New to the forum - nervous about oxiloplatin

Postby shutzele » Sat Jan 21, 2012 1:04 am

There is not too much more I can add.

Definitely get the port, it saves your veins.

I had 17 cycles total of Folfox in 18 month period. That is unusual, I know. Round 18 I had a severe allergic reaction and the body was done with Oxi! The thing is that Oxi works! The tumor in my liver shrank 76% in 14 months.

I in the first 12 cycles i lost half my hair. I had a 6 month break and it grew back.

Neuropathy is very real and there are great tips on this thread. I wish I'd read this in the beginning.

Emend is the best anti-emetic on the market. Zofran is popular but at one point it started making me nauseous instead of helping. Compazine is my favorite. At some point you are going to start feeling yucky just thinking about treatment. I started taking an Ativan the day of treatments. Just helps get through it all, but you may not be able to recall what the Dr. said. IN that case, have a second set of ears in the room with you.

Keep us posted on how it goes.
Michelle 42, stage IV Colon, met to liver
Dianosed 8/2010 T3N1M1
Colectomy 8/2010
17 cycles of FOLFOX w/Avastin in 2011
Folfiri in 2012
Started Erbitux w/Campizar 10/12
Tumor sits on vena cava in liver
http://michelleisamiracle.tumblr.com

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drose
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Re: New to the forum - nervous about oxiloplatin

Postby drose » Sat Jan 21, 2012 11:50 am

This is what we found helped my husband. He took 11 treatments of oxaliplatin. Be aggressive and pro-active with the anti nausea drugs. Take IV Emend and Zofran with the infusion along with steriods - then post infusion cycle down with zofran, compazine and phenergan by mouth as needed. Keep gloves and a hat around for the cold sensitivity. Use an electric blanket. Be very careful about drinking anything cold. Keep a scarf to put over your mouth and nose if you have to go out in the cold to filter and warm when you breath so that cold air does not get into your lungs. Ativan also helps with anxiety. It is not too bad at all if you are prepared. Don't be afraid to ask for any drugs that might help...Good luck! :D
HB age 50
CC w mets to liver lung lymph 09-10
folfox w av x 8 txt - stable w cavitation
Maint 5fu w. av x 11 txt -stable
txt break for toxicity- cea -mass progression
folfiri w av x 5 txt -cea up
folfox w av x 2 -allergic
Erbitux w CPT 11 rash

Cured
Posts: 541
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: New to the forum - nervous about oxiloplatin

Postby Cured » Sat Jan 21, 2012 1:30 pm

AG1, You already heard most of the good advice. Elsewhere you will see members cursing the Oxi. I hated it too, when I was on it, but happily accept LIFE over short term misery and lingering neuropathy. 3 years after ending my chemo, the pads of my feet and fingertips are not as sensitive as they used to be. But everything works. I can even type on a touchscreen phone.

I had hoped that I would be part of the 18% of the people who do not get neuropathy - according to the 50 pages of drug info (which is scary). But after 15 minutes of infusion my veins began to feel cold. The calcium and magnesium infusions DO help, so make sure your clinic has them ready for you.

The worst effect was the lining of my mouth, which becomes raw. You will need special numbing agents and mouthwashes.

One of the hardest things is to get tepid / warm tap water. Restaurant waiters just do not understand. But ice water becomes hard to swallow, the the electric tingles are just so weird. Not so painful as weird.

You will make it through and all of these discomforts will fade away. Wishing you as good of an outcome as I have had - notice I was Stage 3 Rectal, too.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2
12 rds Folfiri
Avastin evy 3 wks
Had Seizure Anti-seizure meds work-no driving for 6 months
Neuro allows me to drive again 0 meds

Cj51
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Location: Midwest

Re: New to the forum - nervous about oxiloplatin

Postby Cj51 » Mon Jan 23, 2012 3:52 pm

Stage III RC here, too. I had Xeloda and Oxi during my radiation, and had a lot of cold sensitivity. I remember coming out after my first infusion. It was a warmish spring day and we had the fan on in the car. My eyes actually tingled when the cool air hit them, it was one of the oddest sensations I ever had. Even something like touching the metal IV pole during my treatment would make my hands tingle. I didn't find out about the Calcium/Magnesium infusions until it was time for my neoadjuvant treatment. My Onc was willing to try it, and it made a whole big world of difference, so I encourage you wholeheartedly to ask your Onc about it before you start treatment. It adds some time to your treatment, as it runs in before everything starts and after everything is done. I also have read that the effect wears off later in treatment, but I don't know about that. I got allergic to the Oxi a few treatments into my adjuvent treatment, so then just had Xeloda. You will be getting a bigger dose of Xeloda during your adjuvant treatment than you had during your neoadjuvant treatment, so the side effects might be a little more troublesome for you. Or, you may be one of the lucky ones and sail right through with no problem! I sure hope so!

I did not have the option of not getting the port, before I started treatment my Onc just said, "You'll be getting a port". At that point, I didn't know any better, just figured it was the way things were done, so I didn't even question it...but, knowing what I know now, I would have taken the port anyway. It made everything just so much easier, from blood draws to getting the dye injected for PET scans. The nurses loved it. It was a very easy and quick surgery to have it placed, and it never caused me any trouble while it was there.

Best of luck to you!

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
10/15 NED

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horizon
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Re: New to the forum - nervous about oxiloplatin

Postby horizon » Mon Jan 23, 2012 10:01 pm

Cj51 wrote:I did not have the option of not getting the port, before I started treatment my Onc just said, "You'll be getting a port". At that point, I didn't know any better, just figured it was the way things were done, so I didn't even question it...but, knowing what I know now, I would have taken the port anyway. It made everything just so much easier, from blood draws to getting the dye injected for PET scans. The nurses loved it. It was a very easy and quick surgery to have it placed, and it never caused me any trouble while it was there.


They did you a favor. I was given a choice and I said "Hell no!" to the port. Then I had my first infusion and said "Hell no!" to that and got a port. I've never regretted getting it.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?


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