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Neuropathy

thready's picture
thready
Posts: 475
Joined: Sep 2009

I was wondering if anyone that has finished folfox treatment has tried Alpha Lipoic Acid. It is an essential amino acid and an antioxident so those of us who are currently taking chemo might not be able to use it. My brother is a diabetic and has taken this for his neuropathy and it really helped him. The information that I have read said it is also helpful for those who have neuropathy from chemo.

I am going to the oncologist in a few hours and I will put this on my list of questions to ask. I will post more after the visit.
Jan
P.S. Alpha Lipoic Acid can be purchased where ever vitamins are sold. (just wanted to make sure that no one thinks I am selling this stuff!) :)

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I couldn't take any of my supplements that were pills Friday through Friday - too much trouble with the nausea. But I was taking 1200mg per day of ALA, and I started back on it again Saturday.

I saw a certified oncological dietician (there are about 200 of them with this special certification in the US). She recommended the ALA for anyone on oxaliplatin. It has been proven to reduce neuropathy in diabetics, and early studies show it may reduce it in those receiving oxaliplatin as well. The good thing is that there are no known side effects or risks to taking a higher dose of ALA than what your body normally needs.

Here is what she suggested for me which is specific to colon cancer
(the ALA, and no probiotics are for while on FOLFOX):

1200-1500mg of calcium per day (break it into AM/PM, I take 600 each)
1000-2000iu of vitamin D3 per day
1000-1800 of ALA (alpha lupoic acid)
NO supplements containing folic acid
NO smoking (not a smoker - not an issue for me)
NO alcohol (or limit - never more than one glass per day for women)
NO red meat (or limit to no more than 18oz/wk - not an issue for me - I never eat it)
NO heavy pro-biotics
YES - organic yogurt each day
Try to keep protein up - 70-100G per day.
Plant-based diet - 9 or more servings per day of fruits and veggies
Whole grains (rye is beneficial for colon cancer)
Beans & legumes 1-3 times per week
Cut out saturated fat - use mono's like olive oil, nuts, avacados
Use fresh herbs in cooking (several are shown to be helpful)
30 minutes of activity/exercise per day every day and 60-90 minutes most days.

thready's picture
thready
Posts: 475
Joined: Sep 2009

Kathryn,
Thank you for the info. I talked with my oncologist today and she said o.k. to take the ALA. She is concerned that neuropathy might become perm. so she said that we will address doses of oxy and maybe even change to a different med mid way if necessary.
She also gave me basically the same info about diet etc. She did say no folic acid, no fish oil supplements. She said that B12 and D3 were o.k. She also said no Alcohol because of an antinausea med I will be taking.

It is good to see that different types healthcare providers are giving the same info, makes me feel more secure.

I don't know about you but I am grateful that the first treatment is finished and that I am learning the drill. It is better than sitting here waiting.

Thanks again.
Jan

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

I am involved in a clinical trial using Alpha Lipoic Acid through MD Anderson.

Study Title: PREVENTION OF CISPLATIN- OR OXALIPLATIN-INDUCED PERIPHERAL NEUROPATHY WITH ALPHA-LIPOIC ACID: A PLACEBO-CONTROLLED PHASE III TRIAL
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Physician New Patient Referral

Name: Ying Guo Patients Call: 800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)

Dept: Palliative Care & Rehabilitation Medicine Referring MDCall: 800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)

Phone: 713-745-2327Contact us about clinical trials
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General Information

Disease Group: Cancer PreventionPain Supported By: N/A

Phase of Study: Phase III ReturnVisit: Study visits are based on the patient's assigned chemotherapy regimen, regimens vary.

TreatmentAgents: Alpha-Lipoic AcidCisplatinOxaliplatin Home Care: N/A

Treatment Loc: MDACC + Community Programs (CCOP/Network)

EstimatedLength of Stayin Houston: N/A

Description/Intervention: The goal of this clinical research study is to test the effects (good and bad) of alpha-lipoic acid (ALA) in preventing peripheral neuropathy (abnormal, uncomfortable, often painful, sensations and feelings in hands or feet) caused by chemotherapy, as compared to the effect of a placebo. Researchers want to find out if this dietary supplement can help to decrease the symptoms as well.
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Study Objectives / Outcomes

Primary 1. To determine if treatment with á-lipoic acid (ALA, thioctic acid) treatment can decrease the severity and frequency of peripheral neuropathy after 24 weeks of chemotherapy that includes cisplatin or oxaliplatin, as measured by the FACT GOG-NTX scale and compared to placebo-treated control patients. 2. To determine if the protective effect of ALA vs. placebo on platinum-induced peripheralneuropathy lasts for an additional 12 and 24 weeks (beyond the first 24 weeks), whether or not the platinum therapy is continued. Secondary 1. To assess large sensory fiber integrity associated with platinum induced peripheral neuropathy, as measured by three timed functional tests: fastening 6-buttons, walking 50 feet, and placing coins in a cup. 2. To determine if the number of chemotherapy cycles and doses received by patients in the ALA group is more than those received by patients in the placebo group. Tertiary To assess the optimal tumor response to chemotherapy prior to 24 weeks in the ALA group vs. placebo group, which will fall into 4 catagories: PD- progressive disease, SD-stable disease, PR-partial response, CR-complete response.
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Study Status Information

Study Activation / Registration Date: 01/03/2007

IRB Review and Approval Date: 04/06/2005

Study Type: Phase Iii

Recruitment Status: Open

Projected Accrual: 244
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Enrollment Eligibility

You might want to ask your onc about this clinical trial. I have been taking the pills and I hope they have helped.

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