Jaw Pain

hoya1973
hoya1973 Member Posts: 37
edited March 2014 in Colorectal Cancer #1
I could not find the previous postings for this topic but remember magnesium sulfate being recommended. I had this added to my cocktail but no difference was noticed except for a major headache

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Probably Me Who Mentioned It
    I always offer this suggestion to folks starting Oxaliplatin - it does work for some people and for others, it has not worked.

    I had a lady contact me recently, whom it did work for and she was ecstatic.

    I'm sorry Hoya that it did not help your symptoms. It's always worth a try to give it a go though.

    Everyone is so different in how they respond to a certain drug or treatment.

    I sure do wish it had worked for you though.

    It really helped me to be able to drink cold drinks the day of infusion treatments. And it lessened some of the neuropathy. Prior to them adding the Mag, I was having alot of issues, so it was a welcome surprise.

    Continued good luck in your treatments. I've also heard B-6 is good to take and can help some.

    -Craig
  • Sundanceh said:

    Probably Me Who Mentioned It
    I always offer this suggestion to folks starting Oxaliplatin - it does work for some people and for others, it has not worked.

    I had a lady contact me recently, whom it did work for and she was ecstatic.

    I'm sorry Hoya that it did not help your symptoms. It's always worth a try to give it a go though.

    Everyone is so different in how they respond to a certain drug or treatment.

    I sure do wish it had worked for you though.

    It really helped me to be able to drink cold drinks the day of infusion treatments. And it lessened some of the neuropathy. Prior to them adding the Mag, I was having alot of issues, so it was a welcome surprise.

    Continued good luck in your treatments. I've also heard B-6 is good to take and can help some.

    -Craig

    This comment has been removed by the Moderator
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Oxaliplatin troubles
    I highly doubt calcium or magnesium gave you the headache. That is more likely caused by anti-nausea drugs, or the chemo itself.

    Almost every oncologist gives magnesium and calcium pre and post, if they give oxaliplatin. It has become the standard. It wasn't a few years ago, but is now. I question any oncologist that does NOT include it these days. They aren't up on things...

    I've learned more about oxaliplatin than I ever wanted to, due to multiple problems. From my own experience, and that of many others, my suggestion is to ask them to slow the infusion time down. This does make a HUGE difference in severity of odd side effects from oxaliplatin. It has been shown that slowing from 2 hours down to 4-6 hours gives improvement of side effects to most people. I still had a lot of troubles with it, but after we slowed down infusion time, my awful face cramping stopped. My hand cramps weren't as bad. The jaw spasms became fewer and less intense.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    unknown said:

    This comment has been removed by the Moderator

    Oxi, not so bad
    I just finished my fifth round of oxi, the jaw pain is minor, disappears after first couple of bites, I'm careful with my hands and feet so far, no cracking or pain there, except when it's cold then YIKES. I'm on the oxi, xeloda and avastin (started avastin on 4th chemo treatment). If anything my side affects have become less and less. My onc, has included mag from the beginning, one bad thing I have noticed it is taking me longer to be able to drink cold, used to be about 7 days, now about 12 days.
    On Craig's advice though I am finally getting a PORT for the oxi, my veins just cannot handle it anymore.
    Hoping to hear that I can get it before my next round, been waiting 4 days for surgeon to call and arrange my port date, so far nothing, oh well, so it goes.
    All my cancer with the exception of my liver is shrinking, my Tumor Markers went from 20,007 down to 974, although my onc, assures me they still cannot cure me, as my liver has too much cancer and "spiked", but they can make the rest of me feel better.
  • snommintj
    snommintj Member Posts: 601

    Oxaliplatin troubles
    I highly doubt calcium or magnesium gave you the headache. That is more likely caused by anti-nausea drugs, or the chemo itself.

    Almost every oncologist gives magnesium and calcium pre and post, if they give oxaliplatin. It has become the standard. It wasn't a few years ago, but is now. I question any oncologist that does NOT include it these days. They aren't up on things...

    I've learned more about oxaliplatin than I ever wanted to, due to multiple problems. From my own experience, and that of many others, my suggestion is to ask them to slow the infusion time down. This does make a HUGE difference in severity of odd side effects from oxaliplatin. It has been shown that slowing from 2 hours down to 4-6 hours gives improvement of side effects to most people. I still had a lot of troubles with it, but after we slowed down infusion time, my awful face cramping stopped. My hand cramps weren't as bad. The jaw spasms became fewer and less intense.

    worked great for me
    the magnesium sulfate completely eliminated the sensitivity to cold and much of the sensory neuropathy caused by oxaliplatin. That is quite something since they didn't start giving it to me until my 20th+ treatment. I haven't taken oxaliplatin since Nov 09 but if I ever start back I know I'm gonna ask for it.
  • hoya1973
    hoya1973 Member Posts: 37
    snommintj said:

    worked great for me
    the magnesium sulfate completely eliminated the sensitivity to cold and much of the sensory neuropathy caused by oxaliplatin. That is quite something since they didn't start giving it to me until my 20th+ treatment. I haven't taken oxaliplatin since Nov 09 but if I ever start back I know I'm gonna ask for it.

    Stay With It For Awhile
    Good advice everyone. I'm a bit anxious perhaps and will retain the magnesium sulfate for future treatments, especially since it also impacts neuropathy. It may have a cummulative effect. Thanks for the counsel.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    hoya1973 said:

    Stay With It For Awhile
    Good advice everyone. I'm a bit anxious perhaps and will retain the magnesium sulfate for future treatments, especially since it also impacts neuropathy. It may have a cummulative effect. Thanks for the counsel.

    Another thing
    One more thing to consider - taking ALA (alpha lipoic acid). These are over the counter supplements. Studies have proven it helps diabetic neuropathy. Studies are being done on chemo patients now, and it looks promising. While the normal dose on the bottle says something like 200mg per day, to get the effect you need to make a difference with neuropathy, you need 1200mg per day - 6 pills. There are no known side effects to too much ALA, so it is a pretty safe thing to do. Of course make sure your oncologist knows about this if you decide to take it. They want to know every supplement you take - even calcium and D3, etc.
  • khl8
    khl8 Member Posts: 807

    Oxi, not so bad
    I just finished my fifth round of oxi, the jaw pain is minor, disappears after first couple of bites, I'm careful with my hands and feet so far, no cracking or pain there, except when it's cold then YIKES. I'm on the oxi, xeloda and avastin (started avastin on 4th chemo treatment). If anything my side affects have become less and less. My onc, has included mag from the beginning, one bad thing I have noticed it is taking me longer to be able to drink cold, used to be about 7 days, now about 12 days.
    On Craig's advice though I am finally getting a PORT for the oxi, my veins just cannot handle it anymore.
    Hoping to hear that I can get it before my next round, been waiting 4 days for surgeon to call and arrange my port date, so far nothing, oh well, so it goes.
    All my cancer with the exception of my liver is shrinking, my Tumor Markers went from 20,007 down to 974, although my onc, assures me they still cannot cure me, as my liver has too much cancer and "spiked", but they can make the rest of me feel better.

    The good news is that you
    The good news is that you can have chemo the day you get the port in, had mine the very next day! Sore, but it worked.
  • hoya1973
    hoya1973 Member Posts: 37

    Another thing
    One more thing to consider - taking ALA (alpha lipoic acid). These are over the counter supplements. Studies have proven it helps diabetic neuropathy. Studies are being done on chemo patients now, and it looks promising. While the normal dose on the bottle says something like 200mg per day, to get the effect you need to make a difference with neuropathy, you need 1200mg per day - 6 pills. There are no known side effects to too much ALA, so it is a pretty safe thing to do. Of course make sure your oncologist knows about this if you decide to take it. They want to know every supplement you take - even calcium and D3, etc.

    Calicum and D3
    Kathryn,
    Thanks for your advise with ALA. I will investigate with my Onc. Please advise on what calcium and D3 have been effective treating?