Oxaliplatin

Kathleen808

Hi,
I've been reading about the neurotoxicity from Oxaliplatin and remembered that Dr. Lenz, ****'s oncologist is having him have magnesium and calcium infusions before and after the Oxaliplatin. Here's an article from Revolution Health. Does anyone have any experience with this?

Can Magnesium and Calcium infusion help with Neurotoxicity

Posted on 09:32AM (EDT) on 2008-03-10

You may remember the press release last year about the Concept Trial which indicated that the patients who received calcium and magnesium infusion appeared to have lower response rates than patients in the control group.

Oxaliplatin can cause significant neurotoxicity which usually presents as numbness and tingling sensations which can lead to problems buttoning shirts or even walking. Oxaliplatin can also cause cold sensitivity which often lasts 5-7 days but depending on the length of therapy can last much longer.

Oxaliplatin is a chelate (molecular structure) and can bind away calcium and magnesium in the body. The nerves have calcium dependent channels used for transporting the nerve activity. When this calcium is bound away the nerves don't function as well and can cause what we call cold sensitivity or parasthesia.

When oxaliplatin is given for a longer period of time, the neuron (the cells which grow the nerves) can die because of the chemotherapy and this causes the lasting numbness and tingling. But it's not only the nerves which are harmed, many patients experience cramps in their legs or hands which can be a sign of low calcium and low magnesium levels.

After the press release warned that calcium and magnesium infusion may harm, everyone stopped the infusion despite having noticed that is seemed to help in the clinic.

At a recent meeting the final efficacy data were released showing that there is no harm with calcium and magnesium infusions prior to and after oxaliplatin. Its effectiveness in preventing neurotoxicity will be reported in June at ASCO 2008. I have started using it again since many patients feel that it is better with the infusions.

If you are treated with oxaliplatin, please discuss with your oncologist the use of magnesium and calcium infusion to prevent neurotoxicity. He can also measure the levels in your blood stream to make sure you are not too low.

Check out my curriculum of past blog posts as well as much more important information on colorectal cancer.

HJ Lenz is a licensed practitioner of Medical Oncology who has been engaged by Revolution Health. No information in this blog is intended to diagnose or treat any condition. The opinions expressed here are my own and do not necessarily reflect those of Revolution Health.

Aloha,
Kathleen

Kathleen808

thanks for the reply
Hi,
Thanks for the reply. It is good to hear from someone who has been down this road. I read your story and agree that there are many blessings during this time. Not that we would choose this, but it is true that God's love shines through all of this.
By the way, where is your beach picture taken? Great pic.
Aloha,
Kathleen

polarprincess

Kathleen808 said:

thanks for the reply
Hi,
Thanks for the reply. It is good to hear from someone who has been down this road. I read your story and agree that there are many blessings during this time. Not that we would choose this, but it is true that God's love shines through all of this.
By the way, where is your beach picture taken? Great pic.
Aloha,
Kathleen

hi
hi,i have gotten the magesium/calcium with every infusion but it doesn't work for me- i still get terrible neuropathy.. my doctor had to take the OXY off last cycle which is only cycle 6 because of the bad neuropathy i had.

Kathleen808

polarprincess said:

hi
hi,i have gotten the magesium/calcium with every infusion but it doesn't work for me- i still get terrible neuropathy.. my doctor had to take the OXY off last cycle which is only cycle 6 because of the bad neuropathy i had.

what's it like
Hi,
What is the neuropathy like? Is it the cold and the numbness? Is it pain? hands and feet?
Thanks.
Kathleen

Tonia11

Kathleen808 said:

what's it like
Hi,
What is the neuropathy like? Is it the cold and the numbness? Is it pain? hands and feet?
Thanks.
Kathleen

Hi Kathleen, my husband is experiencing some neuropathy from his first chemo treatment last Monday. It first started with tingling in his fingers. But by Friday, he could barely walk because he had pain in his feet. His fingers and hands seem to be okay. But he says even when he is laying down his feet are sore. My best friend's dad suffers from neuropathy due to diabetes and gout. She said he uses a topical cream that works. So I will be calling out oncologist tomorrow to see about it. And BTW my husband is on oxaplatin, epirubicin and Xeloda.

Buzzard

Kathleen808 said:

what's it like
Hi,
What is the neuropathy like? Is it the cold and the numbness? Is it pain? hands and feet?
Thanks.
Kathleen

Mine...
When you clap your hands it feels like they are thawing out after being almost frozen and sting. The bottom of my feet tingle constantly now. The cold comes in when you try to drink something colder than say 55*...You will feel instant burning sensation and it doesn't take but a second to hurt. It will feel like a burning sensation on your lips to touch an ice cube . Or to hold an ice cube in your hand or a gallon of milk etc. It is like it is trying to freeze instantly. After a while your face and especially your nose will start to try to freeze if your out in the cold. It starts to get numb. Breathing will be hard to do in the cold. You may think you are dying if you take a big drink of something cold , you won't die, but you think your going to. Ever had brain freeze times 10...There ya are...Welcome to the wonderful world of Oxilaplatin...Actually it will be better than than I say, just be careful, its kind of a learn as you go...God Bless ya'll

Kathleen808

Kathleen808 said:

what's it like
Hi,
What is the neuropathy like? Is it the cold and the numbness? Is it pain? hands and feet?
Thanks.
Kathleen

OK
Thanks for the descriptions. It does not sound pleasant but at least we know what **** may experience. It sounds like room temp drinks and don't touch anything cold or even cool. How long does it last? A few days?
Thinking of you tomorrow Buzzard.
Kathleen

pamalama

Kathleen808 said:

OK
Thanks for the descriptions. It does not sound pleasant but at least we know what **** may experience. It sounds like room temp drinks and don't touch anything cold or even cool. How long does it last? A few days?
Thinking of you tomorrow Buzzard.
Kathleen

Folfox
We keep plenty of bottled water, Evian, smart water, seltzer, sprite to drink on the counter. First treatment Jerry had no sensitivity to touch or to drink 2nd treament he had a slight response. He believes if he avoids the cold things for infusion day and while on pump for 2 days he doesn't want it to get worse. His slight sensitivity last from wednesday afternoon (infusion day) til saturday or sunday. The key during chemo is to stay hydrated over hydrate. I believe this really helps with the side effects. As far as I know he hasn't received calcium and magnesium in addition to the folfox. His infusion regimen is aloxi (anti nausea),decedron(steroid),benydrl(given before erbitux), erbitux, oxiplatin. leucovrin(sp), 5fu bolus home with pump. Good luck.

Pam

Unknown

pamalama said:

Folfox
We keep plenty of bottled water, Evian, smart water, seltzer, sprite to drink on the counter. First treatment Jerry had no sensitivity to touch or to drink 2nd treament he had a slight response. He believes if he avoids the cold things for infusion day and while on pump for 2 days he doesn't want it to get worse. His slight sensitivity last from wednesday afternoon (infusion day) til saturday or sunday. The key during chemo is to stay hydrated over hydrate. I believe this really helps with the side effects. As far as I know he hasn't received calcium and magnesium in addition to the folfox. His infusion regimen is aloxi (anti nausea),decedron(steroid),benydrl(given before erbitux), erbitux, oxiplatin. leucovrin(sp), 5fu bolus home with pump. Good luck.

Pam

This comment has been removed by the Moderator

beachinmom

I used it every time
Sure, I had the mag and calcium before every treatment. I still had some neuropathy--very little in comparison to what some experience. It was not debilitating by any stretch, just a bothersome slight numbness in my fingers and in my feet (slightly). It is worse with cold, but I can tell it may be improving ever so slightly after discontinuing treatment 1 month ago. I still had the cold sensitivity w/ drinks and on lips and behind my front teeth. My onc believed in using it and I am just very happy to have been able to complete 12 rounds w/ out problems w/ neuropathy.

beachinmom

Kathleen808 said:

thanks for the reply
Hi,
Thanks for the reply. It is good to hear from someone who has been down this road. I read your story and agree that there are many blessings during this time. Not that we would choose this, but it is true that God's love shines through all of this.
By the way, where is your beach picture taken? Great pic.
Aloha,
Kathleen

Sure---Beach is Destin, Florida
Kathleen--

You are doing so well asking questions and gathering loads of information. I have read books that talk about outcomes being better because of well researched information and people really involved in their own care. **** must think you are an awesome caregiver and wife.

One of the blessings after a cancer diagnosis is just really, really valuing each moment. That just transfers to all area of life. I am choosing to consciously "be" in every moment, every hug, kiss and conversation from my kids. Also makes the irritations seem a lot less important.

You got some good descriptions from buzzard on how neuropothy feels. I would second everything he says. Also, sometimes even room temperature was too cold, so be sure to have lots of variety in hot teas, hot chocolate and such. One thing I loved was our bottled water. We had a machine/dispenser for our big bottle at home w/ a hot water spout, so I could get a good "warm" fast and easy. Not that I really liked drinking warm water, but hydration was so important.

The beach picture was taken in Destin, Florida. Have been vacationing there since I was a kid. Been to Hawaii a few times too. Have seen the black beach and red beaches on maui and loved them. Honeymooned on Kauai. I am ready to go back. Where do you all live? I would think living somewhere warm will help alot w/ any neuropothy **** may have.

take care....

maglets

beachinmom said:

Sure---Beach is Destin, Florida
Kathleen--

You are doing so well asking questions and gathering loads of information. I have read books that talk about outcomes being better because of well researched information and people really involved in their own care. **** must think you are an awesome caregiver and wife.

One of the blessings after a cancer diagnosis is just really, really valuing each moment. That just transfers to all area of life. I am choosing to consciously "be" in every moment, every hug, kiss and conversation from my kids. Also makes the irritations seem a lot less important.

You got some good descriptions from buzzard on how neuropothy feels. I would second everything he says. Also, sometimes even room temperature was too cold, so be sure to have lots of variety in hot teas, hot chocolate and such. One thing I loved was our bottled water. We had a machine/dispenser for our big bottle at home w/ a hot water spout, so I could get a good "warm" fast and easy. Not that I really liked drinking warm water, but hydration was so important.

The beach picture was taken in Destin, Florida. Have been vacationing there since I was a kid. Been to Hawaii a few times too. Have seen the black beach and red beaches on maui and loved them. Honeymooned on Kauai. I am ready to go back. Where do you all live? I would think living somewhere warm will help alot w/ any neuropothy **** may have.

take care....

first round
Hi Kathleen: I really don't have that much experience with oxy because I just started last thurs but I did get cold neuropathy on the first round and it hit the moment I finished the infusion. Just as Buzz describes....i am on Day 5 and I can still feel it but it is so cold here that I think that makes a difference.

I am on the cal and mag drip before the oxy and I went out and bought glutamine this morning. I don't know yet if you are supposed to take it all month or just the days of neuropathy....maybe someone could tell me this????

I also bought a ginger ale soda this morning that is part green tea....yum I like it ...seems to have a little calming effect on the nausea....sometimes it's hard to find something you want to drink.

You are doing a wonderful job of research Kathleen...keep soldiering on the pair of you. I think if **** wants a laugh about cold neuropathy he should go to my expressions page and have a look at the 10 feet of snow in front of the house....i am actaully offering to ship some to anyone who needs it:):):)

Best regards,
Mags

traci43

Ca and Mg work!
My first time on chemo (7/07 - 12/07) I had FOLFOX with avastin and no calcium or magnesium. The neuropathy was awful. Sometimes it was hard to go to the bathroom because my feet wouldn't move. Even a year later my feet tingle with the least cold. My hands weren't too bad, just tingling. My face got numb outside and my face muscles would spasm, so stay warm! Gloves and mufflers are your friends!

I'm back on FOLFOX (1/09) but this time with calcium and magnesium. What a difference! Also, my oncology nurse suggested heated water, and boy has that been a help! I can actually drink water, which I couldn't last time. Dr. Lenz from the blog is AWESOME! He's the one who told me about Ca and Mg. He's a great researcher.

Hopefully, the Ca and Mg will minimize your husband's neuropathy. Traci

polarprincess

traci43 said:

Ca and Mg work!
My first time on chemo (7/07 - 12/07) I had FOLFOX with avastin and no calcium or magnesium. The neuropathy was awful. Sometimes it was hard to go to the bathroom because my feet wouldn't move. Even a year later my feet tingle with the least cold. My hands weren't too bad, just tingling. My face got numb outside and my face muscles would spasm, so stay warm! Gloves and mufflers are your friends!

I'm back on FOLFOX (1/09) but this time with calcium and magnesium. What a difference! Also, my oncology nurse suggested heated water, and boy has that been a help! I can actually drink water, which I couldn't last time. Dr. Lenz from the blog is AWESOME! He's the one who told me about Ca and Mg. He's a great researcher.

Hopefully, the Ca and Mg will minimize your husband's neuropathy. Traci

for me
i had all of the side effects listed here from the oxy but i also had paralysis of my legs up to me knees.. extremely painful tingling in my feet to the point i couldn't walk or put socks on or anything.. my husband would have to get me a heated foot massager so the tingling would go away..when i got out of the shower i had to have a space heater in there or it was painful to my whole body just being in the room temp air. from the first night i crashed on the couch and couldn't do anything for 5 days.. my husband had to get my food for me.. help me get my clothes one ..you name it.. it was horrible. Also whenever i took a bite of food, my jaw would clench up in pain.. my hands would cramp up and stay stuck in a curled position, when i cried, my eyes would hurt and my eyelids would stick shut and i would go blind temporarily. I could not stand the warm drinks and could not eat so i was getting malnourished and dehydrated...my doctor finally took me off of this drug 2 cycles ago,. and having 5 fu alone has been an absolute breeze for me. It is so good to be able to drink cold beverages and be nourished with fresh fruit and healthy foods..We did discuss what it would mean to take off the oxy and she assured me that it would not affect my outcome in any way and that there are no studies that proved it benefited people in my stage.. that the studies were based on people with many positive lymph nodes, but also that the studies showed that even in people with advanced cancer it is ok to take an oxy break without it affecting outcome.. so i think that is good for people to know. We are going to try and add it back in at a 25% reduced dose on cycle 9-12 and see what happens. I thought i was only going to have 1 cycle left and be done in 2 weeks, but now she is talking up to 12..what a bummer!! She keeps telling me even 8 cycles with radiation is overkill for a T1 with 1 microscopic node..yet she keeps changing her mind about my treatment! The thing that baffles me is that over and over she says that 14 treatments of OXY is standard for colon cancer.. and i cannot figure out where she is getting that... 12 is the standard from everything i can gather!

pamness

polarprincess said:

for me
i had all of the side effects listed here from the oxy but i also had paralysis of my legs up to me knees.. extremely painful tingling in my feet to the point i couldn't walk or put socks on or anything.. my husband would have to get me a heated foot massager so the tingling would go away..when i got out of the shower i had to have a space heater in there or it was painful to my whole body just being in the room temp air. from the first night i crashed on the couch and couldn't do anything for 5 days.. my husband had to get my food for me.. help me get my clothes one ..you name it.. it was horrible. Also whenever i took a bite of food, my jaw would clench up in pain.. my hands would cramp up and stay stuck in a curled position, when i cried, my eyes would hurt and my eyelids would stick shut and i would go blind temporarily. I could not stand the warm drinks and could not eat so i was getting malnourished and dehydrated...my doctor finally took me off of this drug 2 cycles ago,. and having 5 fu alone has been an absolute breeze for me. It is so good to be able to drink cold beverages and be nourished with fresh fruit and healthy foods..We did discuss what it would mean to take off the oxy and she assured me that it would not affect my outcome in any way and that there are no studies that proved it benefited people in my stage.. that the studies were based on people with many positive lymph nodes, but also that the studies showed that even in people with advanced cancer it is ok to take an oxy break without it affecting outcome.. so i think that is good for people to know. We are going to try and add it back in at a 25% reduced dose on cycle 9-12 and see what happens. I thought i was only going to have 1 cycle left and be done in 2 weeks, but now she is talking up to 12..what a bummer!! She keeps telling me even 8 cycles with radiation is overkill for a T1 with 1 microscopic node..yet she keeps changing her mind about my treatment! The thing that baffles me is that over and over she says that 14 treatments of OXY is standard for colon cancer.. and i cannot figure out where she is getting that... 12 is the standard from everything i can gather!

I don't really understand what you are saying
I was Stage III with 2 positive nodes - and according to my oncologist the standard of care is 8 rounds of folfox, with 28 days of radiation with FU. I had surgery first - they removed about 10 inches of colon.

I didn't tolerate the oxalyplatin well - eventually because of the neuropathy - but in the beginning it made me too sick to function. My dose was reduced after my first treatment and again after the second. I eventually finished 5 rounds with the oxali - put I did all of the 5FU (folfox and 5 days a weeks during radiation).

I wouldn't pretend to offer medical advice, but it sounds like your cancer is being - blasted!!!

I was treated at Mass General and am currently 18 months NED.

Pam

polarprincess

pamness said:

I don't really understand what you are saying
I was Stage III with 2 positive nodes - and according to my oncologist the standard of care is 8 rounds of folfox, with 28 days of radiation with FU. I had surgery first - they removed about 10 inches of colon.

I didn't tolerate the oxalyplatin well - eventually because of the neuropathy - but in the beginning it made me too sick to function. My dose was reduced after my first treatment and again after the second. I eventually finished 5 rounds with the oxali - put I did all of the 5FU (folfox and 5 days a weeks during radiation).

I wouldn't pretend to offer medical advice, but it sounds like your cancer is being - blasted!!!

I was treated at Mass General and am currently 18 months NED.

Pam

pam
pamness..your situation sounds so similar to mine..that is what i keep hearing.. that 8 is the standard.. i question sometimes if my onc knows what she is doing. with the 8 cycles i would have been finished march 8th..my bday is march 9th, now i will be spending it doing oxy..uggh.. i got only a summary report from mayo.. i think i many request my full records so i can go over them and make sure nothing was missed..and maybe i will make the decision myself to stop at the 8 rounds. Glad to hear i am not the only one who couldn't do all of the OXY. We just decided it was not worth it for the small benefit.. to the original poster.. i forgot to mention that my side effects would not go away at all between treatments..

Kathleen808

many thanks
Wow! You are so generous sharing all your information. A million thanks to all of you. We will be sure to have **** eating and drinking warm things. Also, it sound like it might be easier since we are in Hawaii. I wish, wish, wish I could take all of you who are having oxy and living in cold weather and bring you here for the sun. I know cold as we lived in Minnesota for 4 years. The snow is wonderful but it really sounds like oxy makes it difficult. I have a question about radiation that I will ask in a new spot.
Again, thank you.
Kathleen

msccolon

polarprincess said:

pam
pamness..your situation sounds so similar to mine..that is what i keep hearing.. that 8 is the standard.. i question sometimes if my onc knows what she is doing. with the 8 cycles i would have been finished march 8th..my bday is march 9th, now i will be spending it doing oxy..uggh.. i got only a summary report from mayo.. i think i many request my full records so i can go over them and make sure nothing was missed..and maybe i will make the decision myself to stop at the 8 rounds. Glad to hear i am not the only one who couldn't do all of the OXY. We just decided it was not worth it for the small benefit.. to the original poster.. i forgot to mention that my side effects would not go away at all between treatments..

just a quick comment
You aren't stuck with continue or stop... if you want to be chemo free, tell your doc you want a BREAK so you can enjoy your birthday! We are in this fight to live, no reason to miss everything while we are in it! I doubt one week off after 8 treatments will mess up the whole continuity process! Think about it, ok?
mary

Buzzard

Kathleen808 said:

many thanks
Wow! You are so generous sharing all your information. A million thanks to all of you. We will be sure to have **** eating and drinking warm things. Also, it sound like it might be easier since we are in Hawaii. I wish, wish, wish I could take all of you who are having oxy and living in cold weather and bring you here for the sun. I know cold as we lived in Minnesota for 4 years. The snow is wonderful but it really sounds like oxy makes it difficult. I have a question about radiation that I will ask in a new spot.
Again, thank you.
Kathleen

1 more thing.....
It seems like everytime I put something new in my mouth it wants to hurt at my mouth joints for 5-10 secs then it goes away. Like you put something sour in your mouth unknowingly....another side effect I assume.....