Neuropathy and Oxaliplatin Revisited

pete43lost_at_sea

plh4gail said:

Ohhh Cheryl. I'm so sorry. I
Ohhh Cheryl. I'm so sorry. I have been off the Oxy since the end of February and my feet tingles really didn't get bad until after I got off it. Weird I know. My onc didn't like the symptoms I was having and switched me at 6 treatments to Folfiri. Now those darn lower extremity symptoms go slightly up my calves but I'm dealing with it like you seem to be. Still stiff as heck in all my joints tho.

Gail

hi gail and cheryl and all
my neuropathy getting better day by day.
maybe the diet, maybe the supplements, but i am greatful.

started taking larger dose of ala.

taking mitolift, alpha lipoic acid, l glutamine, b complex, largentine
specifically for neuropathy.

remember to try the reflexology for feet and hands.

hugs,
pete

westie66

pete43lost_at_sea said:

hi gail and cheryl and all
my neuropathy getting better day by day.
maybe the diet, maybe the supplements, but i am greatful.

started taking larger dose of ala.

taking mitolift, alpha lipoic acid, l glutamine, b complex, largentine
specifically for neuropathy.

remember to try the reflexology for feet and hands.

hugs,
pete

Oxaliplatin and Neuropathy
Hi Gail and Pete and others suffering with this: I saw my oncologist this morning and he is more worried about the diarrhea resulting from the irenotecan/oxaliplatin/5FU combo than the neuropathy - until I told him about the nasty more than neuropathy side effect I had during my last treatment. He is adjusting the chemo soup for tomorrow's treatment - perhaps slower infusion, perhaps less drug. I just don't want him to take me off anything in case the drugs are working! One copes.
I had a ball at the cancer centre wig/scarf take out this morning. You can get a nice wig and all sorts of scarves, turbans, etc. for free on loan. Everything looked like a hat on me but the scarves are cool and rustic.
A colleague of mine did the reflexology thing during his colon cancer treatment and he highly recommends it, too. Thanks, Pete. I'm taking all on your list but the mitolift - don't know what that is.
I'm still confused why drug companies don't test their chemicals with things that could relieve side effects, especially long-lasting side effects. The company that makes oxaliplatin here doesn't but they do test all sorts of combinations of the drug and the synergistic effects. Mystery to me.
Cheryl

pete43lost_at_sea

westie66 said:

Oxaliplatin and Neuropathy
Hi Gail and Pete and others suffering with this: I saw my oncologist this morning and he is more worried about the diarrhea resulting from the irenotecan/oxaliplatin/5FU combo than the neuropathy - until I told him about the nasty more than neuropathy side effect I had during my last treatment. He is adjusting the chemo soup for tomorrow's treatment - perhaps slower infusion, perhaps less drug. I just don't want him to take me off anything in case the drugs are working! One copes.
I had a ball at the cancer centre wig/scarf take out this morning. You can get a nice wig and all sorts of scarves, turbans, etc. for free on loan. Everything looked like a hat on me but the scarves are cool and rustic.
A colleague of mine did the reflexology thing during his colon cancer treatment and he highly recommends it, too. Thanks, Pete. I'm taking all on your list but the mitolift - don't know what that is.
I'm still confused why drug companies don't test their chemicals with things that could relieve side effects, especially long-lasting side effects. The company that makes oxaliplatin here doesn't but they do test all sorts of combinations of the drug and the synergistic effects. Mystery to me.
Cheryl

leveraging PN info, treatments and tips from diabetic world! why
leveraging PN info, treatments and tips from diabetic world! why not ?
lots of overlaps on alternatives.

i added this here, but will make it a separate post.

http://neurotalk.psychcentral.com/thread22794.html
story about PN and diabetic weight loss and vegan and reducing PN

http://www.reversingdiabetes.org/HowitWorks/Research.aspx
vegan diet helps 50% diabetics. refers to kane study. shows how diet and body and
disease are linked. diet not relevant to cancer. can we learn from diabetics ?

http://health.limboland.net/medical/diabetic_neuropathy/diabetic_neuropathy.html
freezing the nerves surgical option.

http://www.liveingoodhealth.info/article/treating-painful-diabetic-peripheral-neuropathy/
this article mentions acetyl-L-canitine which is one of the supplements my naturopath prescribed. also recommend exercise. see key tips below.

hope this helps, its interesting to consider. comments ?

hugs,
pete

To help treat painful peripheral neuropathy without prescription medications, consider the following tips:

1. Keep your blood sugar in control: Studies have shown that when blood sugars remain high, or roller coaster from high to low, peripheral neuropathy will worsen.

2. Exercise. This is probably the last thing you wanted to hear. Exercise helps increase circulation and stimulates the growth of new vessels which help slow the progression of the neuropathy. Exercising also helps to increase your pain threshold and to provide a distraction from the nerve pain in your feet.

3. Eat healthy. Besides helping to control your blood sugar, eating a wide variety of fruits and vegetables will add anti-oxidants to your diet. Anti-oxidants will combat the damaging oxidative effects glucose has on your nerves. In particular, try dark-green, leafy vegetables, yellow, orange, and red fruits and vegetables, citrus fruits and tomatoes.

4. Try red pepper powder. Capsaicin is the active ingredient in chile peppers. When applied to the feet it acts as a counter-irritant and can help decrease neuropathic pain. Capsaicin can be purchased at your local drug store. If you cannot afford capsaicin, try mixing 1 tablespoon of dry chile powder with 2 tablespoons of baby powder. Place the mixture in a sock and use the socks at night.

5. Try alpha lipoic acid. ALA is an effective anti-oxidant that has been shown to relieve pain associated with neuropathy in multiple studies. To help relieve pain, the dose must be at least 600mg a day. It is advisable to start with a lower dose, as higher doses can cause nausea, stomach upset, fatigue, insomnia and can lower blood sugar. In general, ALA is a safe supplement.

6. Try gamma linolenic acid. GLA is an essential fatty acid found in evening primrose oil. Most of the studies have shown modest results, but the possibilities are still encouraging. Take 360mg/day. Many indications require higher dosages, but side effects with long term use at higher doses may include inflammation, thrombosis (blood clots), or decreased immune system functioning.

Treating painful diabetic peripheral neuropathy is very difficult and many of the above mentioned therapies should be tried and combined. Don't expect any "cures" and make sure you give each therapy a chance to work.

Some other studies. that maybe relevant. Note GLA may not be good for colorectal re bloot clot and decreased immune system.

111 patients with mild diabetic neuropathy were given either supplements of the fatty acid gamma-linolenic acid (GLA) or placebo. After one year there were significant improvements in 13 parameters in the GLA-treated patients.Keen H et al: Treatment of diabetic neuropathy with gamma-linolenic acid. The gamma-linolenic acid multicenter trai group. Diabetes Care 16(1):8-15, 1993.

22 patients with diabetic polyneuropathy were given either supplements of gamma-linolenic acid (GLA) or placebo for 6 months. The GLA-treated patients showed a significant improvement in symptom scores. Jamal GA et al: The effect of gamma-linolenic acid on human diabetic peripheral neuropathy: a double-blind placebo-controlled trial. Diabet Med 7(4):319-23, 1990.

pete43lost_at_sea

westie66 said:

Oxaliplatin and Neuropathy
Hi Gail and Pete and others suffering with this: I saw my oncologist this morning and he is more worried about the diarrhea resulting from the irenotecan/oxaliplatin/5FU combo than the neuropathy - until I told him about the nasty more than neuropathy side effect I had during my last treatment. He is adjusting the chemo soup for tomorrow's treatment - perhaps slower infusion, perhaps less drug. I just don't want him to take me off anything in case the drugs are working! One copes.
I had a ball at the cancer centre wig/scarf take out this morning. You can get a nice wig and all sorts of scarves, turbans, etc. for free on loan. Everything looked like a hat on me but the scarves are cool and rustic.
A colleague of mine did the reflexology thing during his colon cancer treatment and he highly recommends it, too. Thanks, Pete. I'm taking all on your list but the mitolift - don't know what that is.
I'm still confused why drug companies don't test their chemicals with things that could relieve side effects, especially long-lasting side effects. The company that makes oxaliplatin here doesn't but they do test all sorts of combinations of the drug and the synergistic effects. Mystery to me.
Cheryl

dear cheryl,
your onc is right, diarrhea will kill you fast.
been to ER with it myself, at the same time my onc had
another crc with bag on chemo in intensive care. very ill.
make it your focus.
hugs,
pete

westie66

pete43lost_at_sea said:

dear cheryl,
your onc is right, diarrhea will kill you fast.
been to ER with it myself, at the same time my onc had
another crc with bag on chemo in intensive care. very ill.
make it your focus.
hugs,
pete

Diarrhea
Thanks, Pete. My oncologist reduced the irenotecan amount again as well as the infusion rate and amount of oxaliplatin. That helped a lot re the neuropathy - I didn't get the tremors during chemo this time (just got back from 5 hrs of chemo). Talked with my dietician and he's hoping that this will shorten or lessen the irenotecan effects. I try to drink as much fluid as I can as I don't want to end up in emergency (spent 23 hrs there during the cisplatin/gemcitibine chemo)! And thanks for the information you provided in your other discussion thread. Yes, diebetics, plus fibromyelgia, plus lymphoma folks all get neuropathy. Now, back to the white rice! And a good BBC mystery on video, Inspector Lewis.
Cheers!
Cheryl

marqimark

westie66 said:

Diarrhea
Thanks, Pete. My oncologist reduced the irenotecan amount again as well as the infusion rate and amount of oxaliplatin. That helped a lot re the neuropathy - I didn't get the tremors during chemo this time (just got back from 5 hrs of chemo). Talked with my dietician and he's hoping that this will shorten or lessen the irenotecan effects. I try to drink as much fluid as I can as I don't want to end up in emergency (spent 23 hrs there during the cisplatin/gemcitibine chemo)! And thanks for the information you provided in your other discussion thread. Yes, diebetics, plus fibromyelgia, plus lymphoma folks all get neuropathy. Now, back to the white rice! And a good BBC mystery on video, Inspector Lewis.
Cheers!
Cheryl

Good to hear
Glad the slow infusion helped with the tremors.
I always hated those.

In cool weather I was still cramping in my arms after two days.
Had to pry my grip open so the person I was handing something to could get it from me.

Good luck and Hugs

Mark

westie66

marqimark said:

Good to hear
Glad the slow infusion helped with the tremors.
I always hated those.

In cool weather I was still cramping in my arms after two days.
Had to pry my grip open so the person I was handing something to could get it from me.

Good luck and Hugs

Mark

Oxaliplatin and Irenotecan
Hi Mark and all: Yes, the reduced amounts of both the oxaliplatin and irenotecan has really helped - very little neuropathy and none of the dreaded diarrhea yet. And I must give credit I think to the L-Glutamine 5 g/day, B6, Cal/Mag, and alpha lin.... . I just know they have helped too. So a better week all around than the last treatment. Pump came off today so I can safely go to the dog park to get my dog some exercise.
Take care, Cheryl