Oxaliplatin

Dario
I know it's horrible. I had all the same symptoms. There is a cumulative effect with the oxaliplatin. It does get worse and worse. After my 5th infusion,I spoke with my onc. about my side effects and he decided to lower the dosage of my 6th infusion. He lowered the dosage even more for my 7th and 8th infusion. This I found bearable. It got better. You may want to ask your doctor if this is an option for you. I hope so.
Now, almost 3 weeks out of treatment, I feel much better but I still have neuropathy of my hands and feet. I'm told it can take up to a year to get better, if it does at all.
You may want to try hot cocoa to add variety to your beverages. It was all I could drink.
The weather has not been nice to me either. The cold is no good for neuropathy. Try dressing real warm, wear layers of clothing, extra socks and heavy duty gloves.
Best wishes,
Karen

Alpha-Lipoic Acid for Neuropathy
You should talk to your doctor about alpha-lipoic acid. I know someone who takes 1 tablet of 600 mg a day and it has really helped with neurophathy/ nerve pain.
My mom was on Folfox and the Oxaliplatin was a nightmare. She is currently on 5-fu. I know the weather is going to get colder/ worse before it gets better. Stay warm. I hope you feel better.

abrub said:

Another option
Sometimes slowing down the infusion can cut the side effects. My infusion was slowed to 6 hours. It didn't help me much, but has helped others. My dr stopped the Oxaliplatin after the 6th cycle. Even with a lowered dosage, I had terrible problems.

One of the Lucky Ones
Hi: I just finished 12 treatments of oxaliplatin + irenotecan + 5FU and feel pretty good. Yes, I had all the nasty side effects of all 3 of these chemicals right off the bat but my oncologist reduced the amount and infusion rate of the oxaliplatin and that helped a lot. I also took alpha lipoic acid tablets 3 times a day plus 5 grams of L-Glutamine Fermented plus Vit B6 plus calcium/magnesium every day. Worked for me but may not work for others. I have had very little problems with cold intolerance and neuropathy. Fatigue and diarrhea hit me 2 days after the 5FU pump came off and lasted 3-5 days.
My latest MRI has shown stability in the peritoneal tumours (6) and even some shrinkage and this is attributed I think to the oxaliplatin.
Make sure you talk to your oncologist - there are likely other things he/she can do to help you through this.
Cheryl

It is a vile nasty drug.
It is a vile nasty drug. The hand and leg pain was intense and I went through it during the Winter in MN, so it was hard with the cold sensitivity. I am lucky enough to have very little of the problems still bothering me 2 years after being done with chemo.

I hope the rest of your treatments go smoothly!

Glutamine powder
Where I was treated, glutamine powder (a protein powder you can buy at vitamin stores) is given automatically to patients getting this chemo. They have you take 30 mg a day mixed in liquid. A number of studies have shown that it can really reduce the neuropathy symptoms. You might ask your doc about this, see if it would be worth trying. Good luck-Ann

horrible
I feel the pain.. I had my tumor removed and have a colostomy as a result so when the diarhea hit it wasn't pretty.. and then followed by constipation.. this drug just sucks, now the neuropathy.. was not too bad till about treatment mumber 8 they cut it down at 9 zand 10 and eliminated it on 11 znd 12 but when it was cut back the neuorzpthy started to become horrible.. I can barely type now and need to be able to type to work.. so I am at my wits end.. I can't button anything or tie my sneakers. it eased up in my mouth and tongue thankfully had fear I was going to choke one day. but if this neuropathy doesn't go away I will be out of work and that is scaring me to death. as I have no other support. so God help us.

Dario_Italy said:

Since the last infusion of
Since the last infusion of Oxaliplatin (5'cicle) i am in the bed, i got a terrible inflamation and swelling at the colon, another nightmare, i cant sleep and i don't leave my apt, i have spasms every 20/30 minutes.....today i did a ct scan with contrast and tomorrow i have a meeting with my surgeon and my oncologist.....i am really curious to know what is going on...i hope that they can reduce the dosage of Oxaliplatin or of Xeloda...but i don't want that in the future if the MONSTER will come back i will have doctors saying: it would have been don't reduce the chemo at that time........but in the meanwhile how i am going to heal my colon with the regular chemo?

What a life.....

love

Dario

Neuropathy and Oxaliplatin
Hi: I have just finished 12 treatments of oxaliplatin + irenotecan + 5FU. After initial problems with neuropathy after treatment 1, I took daily supplements of L-Glutamine Fermented (5 grams/day in juice), calcium-magnesium, Vit B6, and alpha lipoic acid. As well, my oncologist reduced the amount and infusion rate of the oxaliplatin. I haven't had a problem with neuropathy since then.
Cheryl

zirotra said:

Side Effects of Oxaliplatin
It is the worst poison i have had. Still on it and completed 3rd cycle. taking xeloda with it. Takes 4 days for oxalyplatin symptoms to go away and then next week is cool and third week xeloda side effects show up.

Oxalyplatin causes: Spasm in jaw, neuropathy, spasms in abdomen, colon, my back hurts like hell 3-4 times a day and i need someone to rub it slowly for the pain to go away. ofcourse the arm that gets the IV hurts too for 5 days.

Xeloda: is causing nausea, sore feet and severe diarrhea which glutamine could have probably cured but then there are studies against taking glutamine as it helps the cancer cells. so i didnt dare taking it. but instead got the dose for xeloda reduced for 3rd cycle. One more cycle to go..

But i am discouraged as the nurse told me last time, that cancer keeps coming back and chemo rarely helps and that i will have to keep taking it forever with breaks in between. This sucks... Is this real or maybe i have a bad NP?

Hi Z...
Chemo (in and of itself) does not cure cancer. It shrinks tumors and if they are small enough, can make them disappear under the radar to where they are not seen by a CT or other scans that we currently use.

And cancer is relentless in its attack, and so it can come back on you - this is called recurrence. I've had cancer 3x now in just over 7-years. I've been able to knock it back to w watch and wait state.

And I've gotten recurrence even though I've done surgery - radiation - chemo etc.etc. There is no panacea for cancer. Even with all of these approaches, cancer can still come back. That's why colorectal cancer is #2 on the list. It's very formidable.

The best way to look at it is that you may be fighting for periods of time and then be in periods of watch and wait, until the cancer comes again. This might not happen, but I would prepare for it. I certainly did not think it would happen to me.

Even walking away now 3 times, I still expect the 4th round with cancer at some point. It's just a reality I've come to terms with over the last 7.5 years of my fight.

So, you're NP was not a bad nurse - she was giving you good information.

The other thing I heard you saying was your arm hurt where they put your IV in for chemo. Ouch! I did that the first time with the Oxy in the vein and it was torture.

Has your oncologist suggested a power port? It is a catheter device implanted under your collarbone that facilitates the administration of chemo into your veins without tearing your hands and arms up.

Or have they mentioned a PICC line? This is similar, but is installed in the fold of your arms.

Either of these approaches would make your treatments a little more human.

-Craig

Sundanceh said:

Hi Z...
Chemo (in and of itself) does not cure cancer. It shrinks tumors and if they are small enough, can make them disappear under the radar to where they are not seen by a CT or other scans that we currently use.

And cancer is relentless in its attack, and so it can come back on you - this is called recurrence. I've had cancer 3x now in just over 7-years. I've been able to knock it back to w watch and wait state.

And I've gotten recurrence even though I've done surgery - radiation - chemo etc.etc. There is no panacea for cancer. Even with all of these approaches, cancer can still come back. That's why colorectal cancer is #2 on the list. It's very formidable.

The best way to look at it is that you may be fighting for periods of time and then be in periods of watch and wait, until the cancer comes again. This might not happen, but I would prepare for it. I certainly did not think it would happen to me.

Even walking away now 3 times, I still expect the 4th round with cancer at some point. It's just a reality I've come to terms with over the last 7.5 years of my fight.

So, you're NP was not a bad nurse - she was giving you good information.

The other thing I heard you saying was your arm hurt where they put your IV in for chemo. Ouch! I did that the first time with the Oxy in the vein and it was torture.

Has your oncologist suggested a power port? It is a catheter device implanted under your collarbone that facilitates the administration of chemo into your veins without tearing your hands and arms up.

Or have they mentioned a PICC line? This is similar, but is installed in the fold of your arms.

Either of these approaches would make your treatments a little more human.

-Craig

Pain with IV
Hi: I had bad pain with the IV too so the chemo nurses put a heat pack over the IV during infusion which helped. However, just putting in the IV because torture as my veins seemed to have disappeared (!) so I had a PICC line put in. Sure helps with the chemo sessions and the infusions you get while having an MRI or CT.
Cheryl