Oxaliplatin

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Hello friends,

i have just started my number 5 cicle of chemo with the 2 weeks of Xeloda and the infusion of 2 hours of Oxaliplatin every 3 weeks.
In my experience the oxaliplatin is a terrible nightmare, my legs, feet and heands don't work proper, i can't drive them well, i can't drink not even room temperature water, only hot tea or camomille, incredible fatigue, it is cold outside (i am in NYC) and i can't leave the apartment....
Every cicle is worste and worste, i am really scared thinking about what will be the next 3 cicles.....the accumulation is killing me
Anybody of you have the same terrible reactions?
What could we do?
This oxaliplatin is not for humans!!!
Love,

Dario

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Terrible
    It is a terrible drug and wish that wasn't the drug they used. The accumulation in your body gets more toxic and the symptoms last longer and longer. At treatment 5 is when it really got bad for me. Take B6 as this does help some, but ask your doctor first. Please discuss this with your doctor. They might take you off or maybe reduce your amount. I'm still having neuropathy 2 years out.

    Kim
  • karen40
    karen40 Member Posts: 211 Member
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    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
  • th_in_canada
    th_in_canada Member Posts: 46
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    Hated it
    I also had many issues with Oxi. My dose was lowered after 2 cycles but by the 6th cycle I wasn't having any "good" days. The fatique just got really bad and the cold issue lasted longer with each dose. I didn't have nausea but I felt like my insides were constantly churning. I had to take a 2 month break after the 7th cycle due to serious side effects from Avastin. When I went back to the chemo, there was a mistake with the dose (not reduced) and the neuropathy got really bad. Now after 10 months I can say it's gone.
    I really, really hated being on FOLFOX + Avastin but it ended up being the only thing that reduced my tumors.
  • have2believe
    have2believe Member Posts: 134
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    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
    abrub Member Posts: 2,174 Member
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    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.
  • westie66
    westie66 Member Posts: 642
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    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
  • thxmiker
    thxmiker Member Posts: 1,278 Member
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    Our thoughts and prayers are
    Our thoughts and prayers are with you! We are sending you some good sunny California vibes!

    The fifth treatment ended me in the hospital for 8 days, and again on the 8th treatment, ended at the 10th. I did the 5FU, two hours on the IV then 46 more on the pump. All I can say, is get out and walk, move around, what ever it takes to get the muscles moving and stay strong. I would buy groceries nearly every day. A little at a time, on the positive we are now used to fresh everything and waste less food.

    I still get cold in the freezer isle of the grocery store. lol The pain and everything eventually diminishes. I still do not feel my feat very well. My ring finger and little finger are stil numb but at least moving well. I play finger style guitar and had to revert to a pick because I could not feel my fingers.

    My lips and taste is coming back. At the same time my cea is hovering around 3.2! It went from 1100 to 3.2, was the pain worth it, HECK yes!
    Best Always, mike
  • christinecarl
    christinecarl Member Posts: 543 Member
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    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!
  • LAF53
    LAF53 Member Posts: 60
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    Dario
    The side effects have been bad for me also. I have all you have along with a blood clot and jaw spasm that makes eating difficult. I don't have the 5th round until the end of the month. I just keep telling myself this will pass and and i will be fine, One day I'll laugh about it.....maybe.

    Lydia
  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    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
  • k1
    k1 Member Posts: 220 Member
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    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

    Has anyone tried magnesium
    Has anyone tried magnesium and did it help with the oxi side effects? Someone told me it might help. I'm in the same boat as poster and go in for my sixth treatment tomorrow. Each time the side effects were more intense and longer lasting, especially cramps in feet, legs and hands as well as jaw plus cold sensitivity. I had a one month break when I skipped treatment five but then when I went back and had it later still had the same side effects.

    K1
  • dmj101
    dmj101 Member Posts: 527 Member
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    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
    Dario_Italy Member Posts: 8
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    dmj101 said:

    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.

    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
  • westie66
    westie66 Member Posts: 642
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    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
    zirotra Member Posts: 30
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    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?
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    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
    Sundanceh Member Posts: 4,392 Member
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    k1 said:

    Has anyone tried magnesium
    Has anyone tried magnesium and did it help with the oxi side effects? Someone told me it might help. I'm in the same boat as poster and go in for my sixth treatment tomorrow. Each time the side effects were more intense and longer lasting, especially cramps in feet, legs and hands as well as jaw plus cold sensitivity. I had a one month break when I skipped treatment five but then when I went back and had it later still had the same side effects.

    K1

    K1
    Hey, you dial my number?

    LOL!

    Yes, K, I did "The Mags", which is magnesium sulfate. I didn't start out with it, but one infusion I noticed an extra bag and asked what it was for.

    It helped me tremendously - that's all that I took and I could drink cold drinks right after infusion. It helped with the neuropathy.

    It does not work for everyone, but if you are one of the lucky ones that it does work on, it will make your day a little brighter. No more room-temp or hot drinks.

    I did all of this before my UTSW days, but I would talk to Dr. V and insist that he give this a go at least one time....it certainly would not hurt anything to try once. You should notice right away if it is going to help you.

    Best of luck with it.

    -Craig
  • westie66
    westie66 Member Posts: 642
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    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