Oxaliplatin and Neuropathy + New Treatment for Bone Mets

Monicaemilia
Monicaemilia Member Posts: 455 Member
edited March 2014 in Colorectal Cancer #1
Hi guys: Reminder - dx'd Jan. 06 - Xelox for 9 months, then Folfiri for 8 months, then liver resection, then Irinotecan/Erbitux for one year, the surgery to remove lung mets. Currently have one bone met on my left iliac bone, lungs are clear, but a recurrence in the liver. Soooo, this is what I am currently doing:

1. Folfox w/Avastin - there was concern that I had to be taken off Oxaliplatin the first time due to the side effects (especially neuropathy to my throat). I am now working with a researcher with Colorectal Association of Canada, and she has recommended that I take calcium/magnesium supplements as it has been proven to help with neuropathy. I also take two tablespoons of high grade glutamine with my orange juice (once in the morning and once at night). I have only had one round of Folfox, but I have to admit I barely noticed the neuropathy.

2. I had radiation done on my bone mets, but it worked for barely a month. Generally radiation can help with growth and pain for an extended period, but that was not my case. There is a clinical trial taking place here in Toronto for Exablate, which uses MRI and ultrasound to treat the bone. The initial results are very promising. This is really good for CRC patients because if the disease spreads to the bones it does not tend to diffuse and go all over the body, such as breast cancer. You get a few sporadic (in my case one) spot around the pelvic, maybe spine area. Exablate is good for those situations where there is only a limited number of painful mets that can be treated. I have my appointment for December 9th.

I will keep you all posted on how the Exablate works, and whether the calcium/magnesium and glutamine supplements continue to help after a few treatments of Oxaliplatin. You are all always in my thoughts and prayers.

Monica

Comments

  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #2
    Great Info
    Hey Monica,

    Thanks for the information! I wonder if the calcium/magnesium supplements will work for neuropathy long after the treatments have stopped? I finished my chemo last year and that was one of the big side affects for me... the neuropathy. To this day it's still bad, so I'm wondering if I were to take these supplements if they might help now... or if they only work while on the Chemo?

    I'll keep my fingers crossed for you that the Exablate works well! Please do keep us posted!!

    Hugggggggs,

    Cheryl
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #3
    B-6 and L-glutamine
    Hi Monica,

    I just wanted to say that I had pretty bad neuropathy six months ago & that today my feeling in my hands is 95% normal and about 85% in my feet. My hands actually feel completely normal except when I clap my hands. I took both B-6 and L-glutamine. I didn't know about the calcium and magnesium for the neuropathy. I was taking some calcium, but not for that reason. I didn't know to take any supplements for neuropathy while I was taking the oxaliplatin- I didn't start taking it until afterwards, but it does seem to have worked!

    Best wishes to you,
    Lisa
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #4
    CherylHutch said:

    Great Info
    Hey Monica,

    Thanks for the information! I wonder if the calcium/magnesium supplements will work for neuropathy long after the treatments have stopped? I finished my chemo last year and that was one of the big side affects for me... the neuropathy. To this day it's still bad, so I'm wondering if I were to take these supplements if they might help now... or if they only work while on the Chemo?

    I'll keep my fingers crossed for you that the Exablate works well! Please do keep us posted!!

    Hugggggggs,

    Cheryl

    Yes
    Hi Cheryl: I checked and apparently the calcium/magnesium supplements should help with the neuropathy even after chemo. She just said to make sure you get high grade vitamins, because some vitamins are just fillers. Let me know if it helps. Monica
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #5
    lisa42 said:

    B-6 and L-glutamine
    Hi Monica,

    I just wanted to say that I had pretty bad neuropathy six months ago & that today my feeling in my hands is 95% normal and about 85% in my feet. My hands actually feel completely normal except when I clap my hands. I took both B-6 and L-glutamine. I didn't know about the calcium and magnesium for the neuropathy. I was taking some calcium, but not for that reason. I didn't know to take any supplements for neuropathy while I was taking the oxaliplatin- I didn't start taking it until afterwards, but it does seem to have worked!

    Best wishes to you,
    Lisa

    Thanks
    Thanks Lisa: I'm not sure why they don't tell us about the calcium/magnesium, especially when the pharmaceutical company that actually distributes Oxaliplatin recommends these infusions/supplements to help with the neuropathy. Monica
  • pamness
    pamness Member Posts: 524 Member
    #6
    CherylHutch said:

    Great Info
    Hey Monica,

    Thanks for the information! I wonder if the calcium/magnesium supplements will work for neuropathy long after the treatments have stopped? I finished my chemo last year and that was one of the big side affects for me... the neuropathy. To this day it's still bad, so I'm wondering if I were to take these supplements if they might help now... or if they only work while on the Chemo?

    I'll keep my fingers crossed for you that the Exablate works well! Please do keep us posted!!

    Hugggggggs,

    Cheryl

    Neuropathy
    This might not be useful to you at all, but I had foot and hand massage twice a week while I was going through chemo (folfox). I was taken off after 5 rounds with neuropathy in my hands that wasn't going away. The neuropathy in my hands went away within a few weeks after stopping chemo - my feet took about 4 months, but I often wonder if the massage made the difference. I have a friend from Asia who was trained in Asian massage therapy and did it for me.

    It might be worth looking into. I don't really know.

    Pam
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #7
    Monicaemilia said:

    Yes
    Hi Cheryl: I checked and apparently the calcium/magnesium supplements should help with the neuropathy even after chemo. She just said to make sure you get high grade vitamins, because some vitamins are just fillers. Let me know if it helps. Monica

    Thank you!
    Thanks, Monica and Pam!!

    It's now been 13 months since I stopped the chemo and, although I had very little neuropathy in my hands, I got it big time in my feet. Of course, it doesn't help that I have severe arthritis in my knees, either... so between my numb feet, nerve-damaged heels and arthritic knees... well, let's just say I'm not going to be doing any tap-dancing in the near future (grin).

    But I'm going to get the good calcium/magnesium supplements (hey, they can't hurt!) and I think I'm going to treat myself to some foot massages and reflexology... and, if nothing else, my feet will feel good during the actual massage :)

    Thanks... both of you!!

    Huggggggs,

    Cheryl
  • janpuck
    janpuck Member Posts: 7
    #8
    supplements
    Can you tell me what dosage of calcium and magnesium you took with the Oxaliplatin. Stepson is starting chemo on monday and this will be his second round.

    thanks for any info!!

    Jan
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #9
    janpuck said:

    supplements
    Can you tell me what dosage of calcium and magnesium you took with the Oxaliplatin. Stepson is starting chemo on monday and this will be his second round.

    thanks for any info!!

    Jan

    Calcium/Magnesium
    Hi Jan: What's the update on your stepson? How come he is doing chemo again?

    I take USANA Active Calcium Plus - 3 with breakfast and 3 with dinner. On the day I have chemo, I take 3 more one hour prior to infusion. I'm reading the ingredients and the tablets contain 200 mg calcium and 100 mg magnesium. I would have your stepson ask his oncologist whether they provide calcium/magnesium infusions as some hospitals do, but in the absence of that, the supplements do help. Also remember the high grade glutamine. One tablespoon twice a day mixed in a big glass of orange juice really does the trick also. Good luck and best wishes to you and your stepson. Monica
  • Craig S
    Craig S Member Posts: 11
    #10
    Neuropathy
    Thanks for the info. I finished Oxiliplatin about 14 months ago and I still have alot of issues with my feet. My hands aren't too bad. It just feels like I have sand in my socks all the time. I tried B6, and Lyrica, but nothing seemed to help. I'll give the Calcium Magnesium a shot.

    Good luck to everyone.
  • janpuck
    janpuck Member Posts: 7
    #11
    How can I send you a personal email?
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #12
    janpuck said:

    How can I send you a personal email?

    I tried sending you an
    I tried sending you an e-mail. Let me know if you got it. Just go into the CSN homepage, under Communicate The e-mail options are on the bottom. Talk to you soon. Monica

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