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Old 11-19-2016, 05:02 AM   #1
Paula O
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What Can We do to Prevent and Treat Chemo Induced Neuropathy?

I am trying to figure out how to best protect myself against chemo induced neuropathy which hit me pronto, right after the first dose of Taxol (just had weekly dose 2 out of 12 a few days ago). I started off this time with residual neuropathy from past treatment with Taxotare and Carboplatin in 2011 and I know this kind of thing is cumulative. My oncologist basically says nothing works to prevent neuropathy: not supplements not cryotherapy (cold pack socks and gloves changed out every 15 mins during chemo), zip, nada, big zero nothing. Like many oncologists, he does not like the use of any vitamins, anti-oxidants, juicing, green tea etc during chemo and would not approve of me experimenting with any of the below I am posting here. I do not like the idea of doing nothing and it seems like pro-active damage control is in order. I know exercise is supposed to help and I'm walking daily.

I am copying and pasting links and snippets from my research from the internet and wanted to ask if you guys used any of these supps during chemo, if you felt that it helped with neuropathy, and if your oncologist approved them or if you just took them without their knowledge or approval. Does anyone have an integrative oncologist they can consult about preventing/treating neuropathy and pass along their response? Thanks for any input you guys have to share.

I'm hoping my compiling this info can be of help to those of us wanting to prevent and treat chemo induced neuropathy. I would like to defend myself from neuropathy as best as I am able, hopefully without compromising the effectiveness of the chemo. I'd also like to avoid drugs like Lyrica and Gabopentin if possible. Taking them while on chemo almost seems like punching out your "check engine light" signaling a problem needing to be addressed. I've sat next to people in chemo telling me of their neuropathy woes: how their hands and feet feel like they are on fire or being zapped with electricity, they can't button their bottons, they are having problems with falling, etc. Last time my neuropathy symptoms mostly reversed but for some people it's a permanent issue.

There must be something that can be done about this!


Paula
Blogging my way through this journey: http://jpoliver.com/wordpress/

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Copied and pasted from:

https://integrativeoncology-essentia...mo-neuropathy/


Supplements:
You may be able to help your body repair CIPN nerve injury and reduce CIPN side effects by consuming certain foods, supplements and botanical compounds that are loaded with antioxidants and amino acids.
**IMPORTANT: Before starting any supplement, first discuss this with your doctors**
N-acetylcysteine (NAC):
N-acetylcysteine (NAC) is a powerful antioxidant and a precursor to glutathione, an antioxidant made by our body. By supplying our body with the building blocks for glutathione, studies report that NAC may be able to protect our nerves from CIPN. To date, definitive evidence on the effectiveness of NAC in CIPN management is still not known.
Doses: 1000-2000 mg per day
Lipoic Acid (LA), Alpha-Lipoic Acid or R-Lipoic Acid:
Lipoic acid (LA) is a potent antioxidant. Some data suggest that LA may be beneficial in reducing diabetic neuropathy, however it is less clear if LA is helpful in patients with CIPN. To date, definitive evidence on the effectiveness of LA in CIPN management is still not known. The most biologically active form of LA for nerves is called R-Lipoic Acid (R-LA.) CIPN symptoms should start to improve within 4-6 weeks (per Harvard/Dana Farber Cancer Institute). If you don’t notice any improvement after that time, it probably won’t be helpful for you by continuing it any longer.
Doses: R-Lipoic Acid (240 – 480 mg daily) or Alpha-Lipoic Acid (500 – 1000 mg daily)
Curcumin:
Curcumin is the main active phytonutrient extract from turmeric (the yellow-orange root that gives curry powder its distinctive color.) Curcumin is a powerful antioxidant and anti-inflammatory compound (read more about the amazing anti-cancer properties of curcumin in our post.) Studies have shown that curcumin has efficacy in the treatment of diabetic neuropathy and possibly in CIPN. It is important to buy a curcumin formulation that is designed to have a greater bioavailability than standard curcumin formulations, as curcumin is not absorbed well across the bowel wall.
Doses: 400-800 mg per day
also see link: https://integrativeoncology-essentia...apy-radiation/

Vitamin B6 (pyridoxine):
Studies suggest that vitamin B6 may alleviate neuropathy (not specifically CIPN). Clinical trials are underway to determine if vitamin B6 (50 mg, 3-times per day) is effective in preventing CIPN. To date, definitive evidence on the effectiveness of vitamin B6 in CIPN management is still not known.
Dose: 50 to 100 mg per day. If you are taking a multivitamin and/or B Complex, check the amount of B6 so that you do not go above 100 mg total per day (as higher levels of B6 can actually cause neuropathy symptoms.)
Vitamin B12:
Studies suggest that vitamin B12 may alleviate neuropathy (not specifically CIPN). Clinical trials are underway to determine if vitamin B12 is effective in preventing CIPN. The natural form of B12 found in food is methylcobalamin, which appears to be the most effective form to protect our nerves.
Dose: (methylcobalamin) 1-2 mg (or 1-2 mL) per day
Omega-3 Fatty Acids (EPA, DHA):
Omega-3 fatty acids (eicosapentaenoic acid or EPA and docosahexaenoic acid or DHA) are found in high quantities in cold water fish (i.e. salmon, mackerel, sardines, cod) and krill (a tiny shrimp). EPA and DHA are called “essential fatty acids.” Essential fatty acids are not able to be made by our body (they have to come from our diet) and are important components of our cell membranes, including the protective nerve sheath covering (myelin). It is almost impossible in our Western diet (which is typically very low in EPA and DHA) to consume a high enough amount of these fatty acids to repair and protect our nerves from CIPN. Taking a high-quality (low-toxin content) omega-3 fatty acid supplement is therefore recommended (check out the Environmental Defense Fund’s list of safe fish oil supplements.) Certain vegetables, nuts and seeds also have an omega-3 fatty acid called alpha-linolenic acid (ALA), but this fatty acid is not in the 2 forms (EPA and DHA) that our body uses. ALA can be converted in our body to EPA and DHA, but this conversion is not very efficient. Most experts agree that consuming foods or taking a supplement in the EPA and DHA form is far superior to those in the ALA form that requires an inefficient conversion to be useful. Studies show that EPA and DHA are able to protect against CIPN when taken during chemotherapy.
Doses: 4000 mg daily, providing at least 1400 mg EPA and 1000 mg DHA
Vitamin E (Tocopherols and Tocotrienols):

Vitamin E is a potent antioxidant that has been reported to be effective in the prevention of CIPN. The term “vitamin E” refers to a family of eight related, lipid-soluble, antioxidant compounds widely present in plants. The tocopherol and tocotrienol subfamilies are each composed of alpha, beta, gamma, and delta fractions having unique biological effects.
Doses: 400 IU per day (with around 200 mg gamma tocopherol).
Glutamine (L-Glutamine):

Glutamine is an amino acid that has been reported to be effective in the prevention of CIPN. Although glutamine is the most abundant amino acid in the body, it has been found that many people with cancer have low levels of glutamine. Glutamine, usually in the form of L-glutamine, is available by itself or as part of a protein supplement. These come in powder, capsule, tablet, or liquid form.
Doses: (L-Glutamine) 10 grams, three-times-per-day or 15 grams, twice-per-day
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Old 11-19-2016, 05:03 AM   #2
Paula O
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

More info:
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https://integrativeoncology-essentia...ation-therapy/

For the prevention of chemotherapy-induced peripheral neuropathy(studied with oxaliplatin and paclitaxel)
DOSE: Mix 15 grams of powdered glutamine in a small glass (6-8 ounces) of water or juice. Drink. Repeat every 12 hours (schedule: morning and evening)
Start this regimen on the day of oxaliplatin infusion and continue for seven days thereafter. Repeat with each infusion.
This is based on a study that showed a significant reduction in chemotherapy-induced peripheral neuropathy among patients receiving this regimen versus no glutamine:
After all 6 cycles of chemotherapy, 48% of patients in the glutamine group had no peripheral neuropathy (PN) versus only 27% in the non-glutamine group.
After all 6 cycles of chemotherapy, 12% of the patients in the glutamine group had moderate-to-severe PN versus 32% in the non-glutamine group.
Glutamine supplementation significantly improved cold intolerance and lessened the interference to activities of daily living.
Chemotherapy dose-reductions were less frequently needed in the glutamine patients (7%) versus those not taking glutamine (27%)
There were no differences found in the response to chemotherapy or survival between the two groups.
How Does Glutamine Reduce Mucositis and Esophagitis?
Glutamine has been shown to reduce the degree of mucositis through:

anti-inflammatory mechanisms (inhibition of one of the main switches that turn on inflammation, NF-kappaB)
inhibition of bacterial toxins
increased tissue healing (increased fibroblast and collagen synthesis.)
How Does Glutamine Reduce Chemotherapy-Induced Peripheral Neuropathy?
We don’t know exactly, however it is believed that glutamine may exert its neuroprotective effects by upregulation of nerve growth factor. In animal studies, supplementation with glutamine appears to increase NGF.

Under certain circumstances, cancer cells consume glutamine at a much higher rate than they consume glucose.

Is Glutamine Safe To Give To Patients With Cancer?
This is an area of controversy, as it is well-known that under certain circumstances cancer cells use glutamine for energy even more voraciously than glucose.

However, no human study, have ever shown that glutamine increased tumor growth rates or decreased the efficacy of other cancer therapies.

Over the last 20 years, 36 clinical studies have demonstrated the tolerance, safety and effects of glutamine (oral and IV) in patients undergoing chemotherapy and/or radiation therapy. In each of these studies, researchers have reported that glutamine supplementation in cancer patients improves their metabolism and clinical situation without increasing tumor growth.

Potential Side Effects and Drug Interactions:

Generally, very well-tolerated and is considered safe for use by most people for the duration of cancer care (chemotherapy and/or radiation therapy) in doses up to 40 grams per day (adults.)

Do not use glutamine if you:

Have kidney failure, kidney dysfunction, or if your kidney function is impaired or abnormal.
Have liver failure, liver dysfunction, or if your liver function is impaired or abnormal.
Have ever been diagnosed with or had a period of hepatic encephalopathy (liver function that affects your mental, emotional, or cognitive state).
Have a history of mental illness, especially bipolar depression (manic depression), mania, or hypomania.
Have a history of seizure disorders, such as epilepsy or are taking medications to control a seizure disorder.
Have a history of allergic reaction to monosodium glutamate (MSG), a flavoring agent sometimes used in the preparation of Chinese food in restaurants.
Are taking or have been prescribed to take a medication called lactulose.
Adverse drug-glutamine interactions are not common, but (as with any supplement) always check with your physician before starting glutamine.

Read about side effects and potential drug interactions here: WebMD

Additional References:
Examine.com (glutamine scientific references)

Oral Cancer Foundation (mucositis information)

National Cancer Institute (mucositis information)

American Cancer Society (peripheral neuropathy)

Cancer.Net/ASCO (peripheral neuropathy)

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Acetyl-L-Carnitine Increases The Risk and Severity Of Taxane Induced Neuropathy:
Contrary to promising results from earlier studies (preclinical and smaller human studies), a large randomized trial found that patients who received acetyl-L-carnitine (3,000 mg per day) during their taxane-based chemotherapy for breast cancer actually developed neuropathy more frequently and had more severe neuropathy compared with those who took a placebo.

The bottom line: Don’t take acetyl-L-carnitine to reduce the risk of taxane-induced neuropathy…it doesn’t work.

This is yet another study that makes the same point as I made above, that we need to be cautious in our adoption of new therapies before they have been proven safe.


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Discussion re: supplements for neuropathy:

http://www.earthclinic.com/cures/neuropathy.html

Some prefer R Lipoic Acid over the Alpha Lipoic Acid because of bioavailability, I saw that 1 person recc taking B complex 3 hrs before or after the ALA Says "it causes them to be used up quicker otherwise". Many supplementing with B12 speciifically.

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Spoke with employee at Health Food Store, whoi said Phosphatidyl Serine Complex would cause the alpha lipoic acid to be more effective as would lecithin in preventing/treating neuropathy

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Discussion re: glutamine oat: https://csn.cancer.org/node/219148

"From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008"
Under Good News:
"A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled."
So that's roughly less than 200 people. That's really not a huge sampling of cancer patients IMO.

I am by no means saying that glutamine can not be helpful. Below is some information that is not just an abstract from a medical study. I hope that some of you find it helpful.
~source of my information
Neuropathy, Arthralgia, and Myalgia
Several small studies support that taking glutamine may reduce the occurrence and severity of neuropathy, arthralgia, and myalgia among people who are taking chemotherapy medications that can cause these side effects. Most of these studies are not randomized, controlled trials, so they only suggest glutamine can help, but do not prove it will work to prevent and manage neuropathy, arthralgia, and myalgia. On a positive note, glutamine has a very good record of safety. As long as a person does not have contraindications to using glutamine (see contraindications below), it is generally well tolerated and safe. When using glutamine to try to prevent and diminish the severity of these side effects, keep the following key points in mind:

The effective dose appears to be 10 grams of glutamine powder, dissolved in water, taken three times per day.
For best results, glutamine should be used both as a preventive treatment before neuropathy, arthralgia, and myalgia have developed, as well as after these symptoms have developed, to minimize the severity of these side effects.

.

Some of these potential interactions are theoretical, which means they may occur, but are not proven to occur. For this reason, be sure to discuss your individual situation with your health care team before you use glutamine during cancer treatment. Glutamine is generally safe for most individuals with cancer, but only you and your doctor, working together, can decide if glutamine is safe for you.

One additional concern with glutamine is the quality of the product. Independent researchers have confirmed that some glutamine products do not contain the ingredients as claimed on the product label or may be contaminated with other ingredients. If you do use glutamine, go with a good quality, pharmaceutical grade product such as Glutasolve by Nestle Nutrition (formerly Novartis Nutrition), Sympt-X by Baxter Healthcare, or Dymatize Pro Line Glutamine.
~end
** many of us do have livers that have been affected.

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From: https://www.caring.com/articles/peri...he-natural-way

If you are diabetic or have had chemotherapy, you may also want to consider taking alpha lipoic acid. You can find this powerful antioxidant at your local health food store. Studies show that 600 mg per day can be beneficial in reducing the symptoms of PN. (Remember to always monitor your blood sugars if you are diabetic. Sometimes these natural medicines can drop your blood glucose levels.)
CoQ10 can be effective in managing the symptoms of PN. It is also good for heart and brain.
Omega-3 fatty acids found in cold water fish and flaxseed are “food” for the nervous system. When our nerve cells are well nourished, they are more capable of transmitting healthy nerve signals. In addition, Omega-3 fatty acids reduce inflammation in all tissues of the body.
St. John’s wort is an herb which is good for nerve injuries, especially to the fingers and toes. It can reduce burning or shooting pain. It has also been shown to be effective for mild depression. (Do not use if you are taking antidepressant medication.) Big bonus: it is anti-viral.
my note: think I heard St John's Wort

is contraindicated with chemo******
Passionflower is an herb which can be useful for restlessness, agitation, and muscle twitching, and spasms. It helps with nervousness as well. It is not appropriate for pregnant women.
Oat seed has been beneficial for some people with numbness and weakness of their limbs. It is a mineral-rich herb and very safe.
Nettle is a nourishing herb that is rich in minerals. It is particularly good for PN with a “stinging” sensation. Be patient. It takes a couple weeks to work. It is also anti-inflammatory and effective in reducing for hayfever and allergies.
Ginkgo biloba is useful for PN symptoms due to poor circulation. Use caution with medications which increase bleeding like aspirin or ibuprofen. Never take ginkgo with the drug Coumadin (warfarin.)
If you are one of the many people who deal with the symptoms of PN, I hope this information will be helpful. Have a happy and healthy holiday season.

Take care of your (whole) self—

Amy Bader, ND

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Good article discussing the controversy of nutritional supps during chemo and radiation:
http://www.todaysdietitian.com/newar...0510p26.shtml:

In part:
Cancer experts seem to be split into two camps on the antioxidant issue. One side believes taking antioxidants during cancer treatment may interfere with chemotherapy and radiation by reducing their efficacy. Radiation and some chemotherapy agents work by generating free radicals that kill rapidly dividing cancer cells. Since antioxidants scavenge free radicals, the thinking is that they may interfere with these cancer treatments.

The other side of the argument is that oxidation supports the growth of malignant cells, which may conflict with treatment. Thus, antioxidants may counter the harmful effects of oxidation in the malignancy process, boost the effects of the cancer therapy, and protect patients from the therapy’s toxic side effects.

Supportive Evidence
In some circles, there is mounting support for using antioxidants during cancer therapy. Block, who spoke at the Sixth Annual Nutrition and Health Conference in Chicago in May 2009, concedes that there is controversy about whether antioxidants protect normal cells or cancer cells. But he believes antioxidants should be administered with chemotherapy because oxidative stress initiates and promotes cancer cells; cancer patients often have low levels of antioxidants, which increases their susceptibility to side effects; and oxidative stress promotes cytotoxicity and serious side effects.

To provide evidence-based science on this issue, Block conducted two systematic reviews. As discussed in a May 2007 issue of Cancer Treatment Reviews, his research team conducted a systematic review of published studies examining the effects of antioxidant supplements in chemotherapy, with 19 out of 845 studies meeting all evaluation criteria for the review. The researchers concluded there is no evidence supporting the theory that antioxidant supplements interfere with the therapeutic effects of chemotherapy agents. The review found that antioxidants may help increase survival rates, tumor response, and patients’ ability to tolerate treatment. Some of the antioxidants used in the trials included glutathione, vitamin A, vitamin C, vitamin E, ellagic acid, selenium, and beta-carotene.

In the second systematic review examining the impact of antioxidant supplementation on chemotherapeutic toxicity, 33 out of 965 studies met the inclusion criteria. Antioxidants evaluated were glutathione, melatonin, vitamin A, an antioxidant mixture, N-acetylcysteine, vitamin E, selenium, L-carnitine, Coenzyme Q10, and ellagic acid. The majority of the studies (23 out of 33) found evidence of decreased toxicities from the concurrent use of antioxidants with chemotherapy. Nine studies reported no difference in toxicities between the two groups. Only one study on vitamin A reported a significant increase in toxicity in the antioxidant group. Five studies reported that the antioxidant group completed more full doses of chemotherapy or had less dose reduction than control groups. The review findings were published in the International Journal of Cancer in 2008.

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From: http://yaletownnaturopathic.com/how-...-chemotherapy/

L-Glutamine:
Glutamine is an amino acid that can be used to help support the health of nerves during and after chemotherapy1,2,3. In my experience this is particularly helpful with some of the intense chemotherapy regimens given to patients battling colon cancer. I have also found it to be more helpful when it is used to prevent neuropathy rather than waiting until the neuropathy has developed and then deciding to use it.
There is currently a controversy about the use of glutamine in cancer patients. Cancer cells uptake glutamine and it is metabolized by the cancer for a number of different pathways. Some people look at this information and jump to the conclusion that glutamine feeds the cancer. Yes, glutamine does feed cancer but glutamine also feeds every cell in the body. If the cancer does not get glutamine from the blood stream then it will cause muscles to waste away and get the amino acid from those tissues. The cancer will always find a way to get glutamine whether you supplement with it or not. The simplistic point of view that we should avoid everything that has potential to “feed cancer” is seriously flawed because our immune system desperately needs these same molecules as well. When it comes to the use of glutamine during chemotherapy, the benefits certainly outweigh the risks and this is particularly evident when we consider the health of the nerves.
B-Vitamins:
During chemotherapy the body often becomes rapidly depleted in water soluble B-vitamins11. It is critical to make sure that you are adequately supplied with B-Vitamins prior to and during chemotherapy to adequately support the nerves. The vitamins that are most critical to prevent neuropathy are B1 (Benfotiamine) and B12 (Methylcobalamin)4,5. The dosage of these nutrients makes a big difference and many of the low quality brands have completely insufficient doses. I have no idea why many of the popular low quality brands decided to put the same dose of all B-Vitamins (eg. 50mg of each B-Vitamin). Just because they share the letter “B” in their name does not mean that the metabolic requirement for each one is the same. Each B vitamin has a completely different function in the body so clearly some will be needed in greater quantities than others.
In my practice I regularly give B12 injections to patients who are undergoing any taxol chemotherapy. B12 is not an antioxidant and there are no realistic concerns about giving these shots regularly. Often the absorption of B-vitamins are impaired in cancer patients so oral supplementation is insufficient to achieve the desired doses. I have found that when given weekly these shots can dramatically support the health of the nerves. It is important to point out that you do not have to have a blood test which shows low B12 levels to justify the use of B12 injections. Vitamin B12 is a water soluble vitamin so if your levels are high then the excess will just be excreted in your urine. It is not uncommon for me to give these injections to patients who actually have high levels in their blood and their symptoms improve as a result. A test that demonstrates adequate amounts of B12 floating in your blood in no way indicates how effectively your body is actually utilizing the B12. It seems that many people during chemotherapy have a functional deficiency of B12 during chemotherapy, even if the actual concentration in the blood is normal or high.
Alpha Lipoic Acid (ALA):
This natural support has been shown to be a helpful nerve support with certain chemotherapies5. It is critical to recognize that ALA is not safe with all chemotherapies. You must have professional guidance when implementing any of these neurological supports into a cancer treatment plan. ALA helps to prevent neurological damage by supporting the health of the mitochondria. Every cell in the body has mitochondria which are responsible for generating energy and these delicate structures are often damaged by chemotherapy. The ALA helps to directly protect these components within nerve cells which can help to prevent neurological damage.
I have found ALA to be particularly helpful in cases where patients had diabetic neuropathy prior to starting chemotherapy. Clearly in these cases additional supports are needed because the nerves will be inherently vulnerable to any additional stressors. ALA has been extensively studied in the context of diabetic neuropathy and has consistently demonstrated a positive effect in numerous studies6. This is an example of a natural therapy where the quality of the supplement makes a big difference. It can be administered orally or through an IV. If it is given orally then it must be the pure R form to be effective. If it is a racemic mixture then it will not be effective. When it is administered through an IV it must not be mixed with anything else and the entire line and bag must be completely protected from UV rays. Often the bag and line is wrapped in tin foil to prevent UV degradation of the ALA.
Cryotherapy on hands and feet during chemotherapy:
One of the most basic physiological concepts is how blood flow changes when the body is exposed to extreme temperatures. When our tissues are exposed to cold temperatures the blood vessels in the periphery (arms, hands, legs and feet) constrict dramatically to reduce blood flow to the peripheral regions of the body. The blood is shunted to the internal organs so that your core body temperature is preserved and this allows vital organs to continue to function optimally in cold temperatures. When the body is exposed to very warm temperatures then the opposite happens. The blood vessels in the periphery open up and blood is drawn away from the internal organs to the periphery of the body. This prevents vital organs from overheating and it allows heat to escape on the periphery of the body in the form of sweat.
The concept behind cryotherapy during chemotherapy is that if cold is applied to peripheral tissues then there will be less blood flow to the nerve endings that are vulnerable to the effects of chemotherapy. By this same logic it should also deliver more chemotherapy to the cancer (which is more often located in these internal organs rather than on the hands/toes) by fundamentally changing the flow of blood in the body. This concept makes perfect sense on the physiological level and I would recommend this to anyone who is particularly concerned about neuropathy developing in their hands or feet. There is an abundance of research that supports the use of this therapy on the hands or feet to prevent nail toxicity and peripheral neuropathy7,8,9. In circumstances where patients wish to also preserve taste while reducing the risk of oral mucositis, it can be helpful to chew ice cubes during the infusion10. Of course this should not be done in cases of oral cancers but it is a helpful way to preserve taste by reduce blood flow to the tongue and mouth. This is a simple approach that in my opinion every patient should consider adding to their treatment plan.
Summary:
When used appropriately these neurological supports can be used in a synergistic manner to powerfully support nerve health. The sooner that these supports are used, the better chance of nerve recovery. The therapies that were discussed in detail here are only a fraction of the available therapies. Acupuncture, phosphatidyl-serine, acetyl-L-carnitine and glutathione are also used in specific circumstances to support nerve health. All of these supports must be used properly if you expect to have any positive results. In order to develop an effective nerve support protocol you must have professional guidance from a Naturopathic doctor who has experience supporting patients through chemotherapy.
Dr. Adam McLeod is a Naturopathic Doctor (ND), BSc. (Hon) Molecular biology, Motivational Speaker and International Best Selling Author. He currently practices at his clinic in Vancouver, British Columbia where he focuses on integrative oncology. http://www.yaletownnaturopathic.com
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Article re: cautioning clearing use of these supps with oncologist:
https://books.google.com/books?id=nW...0chemo&f=false
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Called and spoke with a pharmacist to ask if there is any contraindication in taking Glutamine, Alpha Lipoic Acid, and Phosphatidyl Serine Complex while doing Taxol. She checked her resources which she felt were limited looking at Walgreens data base. Nothing conclusive there--nothing directly contraindicated, cited study saying antioxidants can protect cancer cells but nothing like these supps would increase toxicity, etc.
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Accupuncture helping some people with neuropathy
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Selenium might help--could start few Brazil nuts/day
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Old 11-19-2016, 07:25 AM   #3
MaineRottweilers
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

My first oncologist specifically told me to start a B complex and take additional B12 during chemo. I still have neuropathy but it's quite mild for the amount of chemo I have endured. Luck? Maybe but it doesn't cost much for these supplements so I continue to use them.
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11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 11-19-2016, 08:05 AM   #4
Juls
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

I take B6, B12 & a few brazil nuts for selenium. Neuropathy only very,very slight. No idea if this is what has helped but easy to do. Plus may help in other ways as well!
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Old 11-19-2016, 08:38 AM   #5
jaykay
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

I've been taking B6 (100mg) since I finished chemo and have very little neuropathy (right arm/hand which radiation also contributed to - my opinion). I actually switched to a "b complex 100" to get more of the b's.
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 11-19-2016, 02:08 PM   #6
Lisalou
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

I also did a B complex vitamin "supreme stress B"
thiamin 100mg
riboflavin 100mg
niacin 100mg
B6 100mg
folic acid 400 mcg
B12 1000mcg
biotin100mg
pantothenic acid 100mg
inasital 25
choline 25mg

I took this with My oncologist's blessing. Minimal neuropathy during chemo all reversed after completion.
Good luck
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[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt

Last edited by Lisalou; 11-19-2016 at 02:09 PM.. Reason: left out a word
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Old 11-20-2016, 04:34 AM   #7
Paula O
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

It sounds like a few of you had good success with adding in B vitamins. I'm glad that it's worked well for you.



Here is the American Cancer Socity's PDF on Peripheral Neuropathy Caused by Chemotherapy:

http://documents.cancer.org/acs/grou...002908-pdf.pdf



Chapter on sopplementing to raise glutathione levels during chemo and radiation::

https://books.google.com/books?id=nW...0chemo&f=false
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Old 11-20-2016, 07:00 AM   #8
Mtngrl
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

I've been supported by my medical team in efforts to prevent or heal neuropathy. I'm not really sure how much good it has done. I take a B complex tablet, though sometimes I forget. I've tried glutamine. Not sure it helps, but it's also harmless, as I understand it. One NP said to try Alpha Lipoic acid. I did for awhile, didn't notice much of an effect, and it's pretty expensive.

When I was on Taxol in 2011 my neuropathy was quite pronounced, I was having trouble using my fingers, and my feet felt like blocks of wood. It's not nearly that bad anymore, even though I had almost 6 months of Abraxane last year and just did 5 months of Kadcyla. I think using my fingers--for writing, coloring, knitting--seems to help keep them nimble.

One thing I've noticed since starting this adventure with "cancer as a chronic illness" is I've become extremely sensitive to environmental pollutants. One time, shortly after I started back on Abraxane, I was waiting to board a Boston Harbor ferry that was idling. The diesel fumes caused an immediate flare-up of neuropathy in my fingers and toes. I'm also sensitive to pesticides, chlorine, dust, mold, fragrances, smoke, "air fresheners" and other volatile organic compounds. I run a HEPA air purifier in my bedroom and try to avoid old buildings. I have a "fragrance free" policy in my house. All that has helped me.
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_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 11-20-2016, 04:53 PM   #9
SoCalGal
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

Most people I know use L Glutamine to address neuropathy.

http://depts.washington.edu/integonc...lutamine.shtml

Cancer Treatment Side Effects & Supportive and Palliative Care

L-Glutamine for prevention and treatment of neuropathy

Glutamine has been shown to up-regulate nerve growth factor in animal models and it is thought to have similar effects in humans.

A recent study involving 86 patients with metastatic colorectal cancer has shown that oral l-glutamine (15 g twice a day for seven consecutive days every 2 weeks starting on the day of oxaliplatin infusion) was effective in the prevention of oxaliplatin-induced neuropathy.

A trial of 12 women with advanced breast cancer on a high dose regime of paclitaxel, using glutamine 10 g daily for four days starting 24 hours after completion of paclitaxel indicated that participants who received glutamine had fewer symptoms, with only 8% of women reporting dysesthesias in the fingers and toes, as compared to 40% of the women who did not receive glutamine.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 11-20-2016, 05:23 PM   #10
Mtngrl
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

Well, I guess I'll break out the L-Glutamine. Starting on Eribulin tomorrow. Two weeks on, one week off.

Amy
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Old 11-21-2016, 06:06 AM   #11
TiffanyS
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

I am having this problem right now. I’ve had six doses of Taxol, and my neuropathy, as well as foot spasms, is getting worse with each treatment, It’s even worse than it was the first time I got chemo. I’ve mentioned this to my oncologist, and she recommended magnesium, which has helped with the spasms, and acupuncture. I just started acupuncture last week, so I don’t know yet if it will work. The guy giving me the acupuncture told me that it only works in 30% of people with chemo related neuropathy, and that we should know by the third treatment if it will work for me. I have my second appointment on Wednesday.

I’ve heard that B vitamins also help with neuropathy, and I used to take a multi-B regularly, however, when I started Taxol, the pharmacist told me to stop taking my multi-B as it could interfere with the chemo. I’m going to follow up with my oncologist about this when I see her next, as I did take a multi-B during my first round of chemo. I have never heard of L-Glutamine, but I will look into it.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!
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Old 11-21-2016, 06:28 PM   #12
Paula O
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

A friend whose husband has neuropathy due to his diabetes emailed me this:

> Dale has had neuropathy in both feet for several yrs. due to diabetes. They have always just been numb. But a couple of months ago, he said they were starting to hurt. We attended a class for diabetics that was very interesting. We picked up lots of tips from others who had diabetes. Several in the class said they got relief from a cream called Blue Emu. We bought a jar at CVS and Dale covers the bottoms of both feet and in between his toes after his shower in the morning. So far, all the pain has disappeared. I don't know if it would help your feet or not, but it might be worth the price of a jar to try and see if you get relief.

more here:
https://treato.com/Blue+Emu,Neuropathy/?a=s

It would be a topical approach to pain relief.
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Old 11-22-2016, 05:51 AM   #13
TiffanyS
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

Thanks Paula. I looked up Blue Emu online, and it appears that it’s only sold in the US. I’ll keep looking, but I don’t know if it’s available in Canada.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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Old 11-26-2016, 04:31 AM   #14
Paula O
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Re: What Can We do to Prevent and Treat Chemo Induced Neuropathy?

More info:

Back in 2011 I spoke with a woman (a health food store owner)whose husband is a surgeon and had colon cancer. This is what he took while doing chemo to help with the neuropathy. He is doing well now and able to continue operating and is symptom free:
Alpha Lipoic Acid
N-Acetyl-Cysteine
Phosphatidyl Serine
L-Glutamine

When I asked last time, my oncologist advised me against it while on chemo. Back then I took L Glutamine during chemo, had to stop chemo one dose early because of the neurpathy, then took the other three supps as above afterwards for a few months and my neuropathy did improve and got to nominal.

------------------

I recently spoke with a GYN doc who ended up with terrible neuropathy after her chemo for breast cancer. She said that she could barely walk to the bathroom at night, used a cane,had a lot of pain, no longer able to practice medicine, etc. She continues Gabopentin but what she said was the game changer for her with her neuropathy (no longer uses a cane) is Beta Glucan which she plans on taking for the rest of her life. This is what she uses: https://www.buyygy.com/90forLifeStor...esveratrol-mix That particular company is an MLM which, honestly in general I'm not so hot on. She told me that she personally would take it during chemo whether her oncologist approved it or not and just not mention it. *******Please note, I am not advising anyone to go against what their dr says, just relaying info to take or leave************.

I did some poking around on the internet last night and I found another Beta Glucan that is not manufactured by an MLM that looks like it has more research behind it and seems like it comes out as Top Dog . Apparently there is a huge difference between purity and efficacy. One pill of one type could be worth 100 of another in effectiveness. Here's the comparison I found:

https://blog.betterwayhealth.com/bet...n-comparisons/

Here's what is on sale til 11/29
https://www.betterwayhealth.com/blac...le/#a_aid=cbtc

All this stuff is expensive, even on sale.

Anybody here taking Beta Glucan?


Would any of you guys be willing to ask your oncologist his/her opinion of taking Beta glucan, Alpha Lipoic Acid
N-Acetyl-Cysteine, Phosphatidyl Serine, L-Glutamine while on chemo and if they feel it would decrease the effectiveness of chemo or be harmful in any way and then post here what their opinion is? I already know what mine thinks because I asked. He's against it all, including multivitamins. Even though my oncologist is very smart in general, doctors seem to have very little training with nutrition and supplementation. I wonder if they would be more open to considering it if a loved one or they, themselves were dealing with issues like chemo induced neuropathy or a low white blood cell count, etc and wanted to protect themselves.


https://blog.betterwayhealth.com/bet...n-comparisons/

Beta Glucan Comparisons

How Does Transfer Point Beta Glucan Compare to other Immune System Supplements?
It is likely (since you are reading this article) you are doing your own research on which beta glucan to take. There are literally thousands of both natural and synthetic products that claim the ability to boost your immune system.
It seems that every website and company you find, makes the claim of having the most effective immune system supplement in the world. So where does one even begin to find out who is telling the truth? After all, if you are planning on spending your hard earned money on an immune system supplement, you want to make sure you get the most bang for your buck, right?
My recommendation: Look for a disinterested 3rd party, someone who makes no money from selling a product, but only cares about delivering the truth. Someone who is an expert in the field of immunology and beta glucans. Look for peer reviewed studies published on Pubmed by credible sources such as Universities.
A great example of this would be a man by the name of Dr. Vaclav Vetvicka, Ph.D. Dr. Vetvicka is the Director of Research at the Department of Pathology and Laboratory Medicine at the University of Louisville in Kentucky. Dr. Vetvicka has a Ph.D. degree in Microbiology and is a member of the Czech Immunological Society, American Association of Immunologists, International Society of Developmental and Comparative Immunology, and American Association for Cancer Research.
*Read more about Dr. Vaclav Vetvicka and his research at his website
Impressed yet? You should be, Dr. Vetvicka is the expert on beta glucan and is currently researching the role of procathepsin D in cancer development, the role of glucan in Natural Killer (NK) cell activation, and the phylogenic aspects of defense reactions. Dr. Vetvicka’s research (currently over 200 published peer reviewed studies) are widely available for free to the public.
One study in particular done by Dr. Vetvicka at the University of Louisville, “Beta-1,3-Glucan: Silver Bullet or Hot Air?,” cross-compared all the best known immune supplements (over 100 of the top immune system products) at the time for potency and efficacy. The results of this study were so profound that they were actually published in Open Glycoscience in 2010.
Read the study for yourself, or look below to see the results; Many of the popular immune supplements you have heard of, or maybe even have taken in the past were found to be as effective as salt water!
During this particular study, The laboratory tested for 2 main things.
1. Measure the Phagocytosis of Neutrophils. This measures the increase in
the activity of the neutrophils to “gobble up” pathogens and cell debris in
your body.
2. Measure the IL2 or Interleukin 2 which is a type of cytokine signaling
molecule in the immune system. It is a protein that regulates the activities
of white blood cells that are responsible for immunity. IL-2 is part of the
body’s natural response to microbial infection, and in discriminating
between foreign (“non-self”) and “self.
As far as immune system supplements go, these are the two most comprehensive and important tests. These scientific experiments will start with PBS or Phosphate buffered saline, basically salt water. This is used to establish a baseline for the immune response.
Once the baseline is established (usually around 31.2% for the neutrophil test) they can begin giving increasing doses and measure the biological response of the immune system from there. You will be shocked to find out that some of these products that were tested did not show any biological response even at 100x their recommended dosage! And keep in mind these are some of these same companies that advertise “The purest and most effective Beta Glucan”.
Here are the results of the study:
Transfer Point Beta Glucan is 8x (times) More Effective than these Supplements:
Maitake Gold 404® by Tradeworks Group, Inc. NOW BETA 1,3/1,6 – D – GLUCAN PSK Krestin® by Kureha Corp
Our Product is 16x (times) More Effective than these “Immunity” solutions: Wellmune WGP® (Green Supreme) Aktival® Beta Glukan
Transfer Point is 32x (times) More Effective than these Supplements: Immutol® NBG (Norwegian Beta Glucan) by Biotec ASA RM-10™ by Garden of Life EpiCor by Diamond V Immune Enhancer ImmunoPlex 1 ImmunoPlex 2 LactoSpore® by Sabinsa Corp (Lacto Sporogenes) Zanthin® XP-3™ – Valensa International Swanson BetaRight®
These Products are 64x (times) Less Effective than Glucan 300® Immune Builder by Mushroom Science (5 Mushroom Formula) Senseiro by Kyowa Engineering and SSI (Agaricus Blazei Murill) NOW Foods Immune Renew™ Manapol® Plus MaitakeGold 404® by Carrington Labs Wolfberry Powder and Caps by Rich Nature Nutraceutical Labs Transfer Factor™ by Source Naturals Glucagel™ by GracieLinc Ltd Beta 1,3 Glucans by Solgar® Andrew Lessman Immune Factors Immunity Booster™ by Twinlab® MC-Glucan by MacroCare Tech Ltd., Korea Oat Beta Glucan 1000™ by Dr. David Wheeler Beta Sweet – Southeast Asia Beta 1,3 Glucan by Vitamin World Beta Max by Chisolm Biological Labs BioBran® MGN-3 Immunomodulator Daiwa’s PeakImmune4 RBAC (Daiwa Pharmaceutical Co., Ltd.)
Supplements 128x (times) Less Effective than Our Immune System Product Our Health Co-op (Cell Nutritionals) Beta Glucan 700mg Better Immunity® Beta Glucan
Beta-1, 3D Glucan is More than 160x (times) More Potent than the following: MacroForce™ 7.5 Plus C by Immudyne, Inc. Maximum Beta Glucan™ Beta 1,3/1,6 Glucan by Young Again Nutrients Inc, AHCC® ImmPower (Active Hexose Correlated Compound) by American BioSciences Vitamin E by Cognis Immunition™ NSC-100™ by Nutritional Supply Corporation Baker’s Yeast by Fleischmann’s ASTRAGALUS by SmartBasic Enzymatic Therapy Cell Forté® IP-6 & Inositol Viscofiber by Cevena Bioproducts Advanced Colostrum Plus by Symbiotics AWGE™ Avemar Pulvis Carnivora Capsules and Carnivora Pure Liquid Extract
These supplements are less effective than Salt Water (negative control group): BioChoice® Immune 26 by Legacy for Life, Inc. 4Life Transfer Factor Plus® by 4Life Research Qmatrix® ACTIValoe® by AloeCorp, Inc Immunition™ NSC-24™ by Nutritional Supply Corporation Vitamin C by AIDP, Inc. Immudyne® 26 Powder
Please keep in mind that this study consisted of all the best immune supplements known at the time (if you do not see your supplement listed here, then it did not even make the cut for the top 100). As you can see in the study our product, Transfer Point Beta Glucan (Glucan #300) came out head and shoulders above all the other products.
The 2nd most effective supplement is still 8x less effective than Transfer Point’s 100mg. This is why Transfer Point is the only brand that we carry at Better Way Health. We have been selling Transfer Point Beta Glucan for the past 10 years and have never found any other immune system product we would consider selling to our loyal customers.
If you are interested in more research on Beta Glucan. Dr. Vetvicka’s book has an amazing bibliography that references all of the major studies done on Beta Glucan.
Vaclav Vetvicka's Beta Glucan Nature's Secret
*These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.
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