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MREanes

Angel
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Posts: 77
Reply with quote  #1 

I am having trouble with neuropathy in my hands and feet and wanted to know if you have any recommendations.

I was diagnosed with bc in late May 05 and had 6 treatments of TAC followed by radiation, then went on Tamoxifen.  Bone mets discovered late Dec 06.  Titanium rods in left leg, radiation to leg and L5 vertebra followed by vertbroplasty.  Began Xeloda, Zometa and Femera in Feb 07.  Found more mets, June 07.  Began Abraxane, Avastin and Zometa in June and I am continuing treatments.

Neuropathy began in feet by around October and in hands by December.  It has continued to get worse as treatment continued.  I have been trying 30g of glutamine with 100mg of B6 for the last month and a half.  I don't know that the neuropathy has improved, but don't really know if it has gotten much worse either.

In your experience, has this been effective?  Are there other things that I can try?

Also, I strained my thigh muscle, in the leg with the inserts, in early August.  I have been extremely slow to heal and have had only very minor improvement.  Could this be due to my current chemo treatments?

Any help would be appreciated.

Thanks,
Mike

edge

Chief of Research
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Posts: 1,129
Reply with quote  #2 

Mike:

I addressed the issue of neuropathy in an extensive discussion a few weeks ago in response to a query from CarolC, and you should first consult that discussion:

Evidence-Based Interventions for Relief from Peripheral Neuropathy

Briefly, although glutamine may be of some benefit, it can be erratic in efficacy even in high dose, and the likelihood based on the evidence is that interventions using

  1. ALA-SR (the sustained release form at 600mg / daily) combined with Vitamin E at 900 - 1200/mg daily, and/or
  2. the neuroleptic gabapentin, or
  3. the SNRI antidepressant Cymbalta,

would greater evidentiary foundation, and field experience shows impressive efficacy (consult the discussion for more details).

But let note here that it strikes me that two things are likely to be going on: both peripheral neuropathy, as well as endocrine-induced musculoskeletal arthralgia / myalgia type adverse events (your thigh strain may be partially secondary to or aggravated by myalgia) may be confounding your symptoms, so it may be prudent to use the extraordinarily effective Traumeel gel that I document there, along with a course of SAM-e, also an exceptionally powerful analgesic, which is also the single most effective hepatoprotectant (liver protectant) evidenced today, valuable under zoledronic acid (Zometa) therapy which has some modest propensity for adverse renal and hepatic impact.

As to your current active therapy (nab-paclitaxel (Abraxane), bevacizumab (Avastin) and the Zometa), without knowing more of your histopathology, tumor biology and clinical history I can say little definitively, but will restrict myself to three observations:

  1. Without going into the ultra complex and arcane technical details, I will note that we have considerable evidence that a molecular process called Smad signaling is critically involved in the pathogenesis of bone-metastatic lesions, via the induction of IL-11, a gene implicated in bone metastasis, with AP-1 (activator protein-1) being a key participant in Smad-dependent transcriptional activation of IL-11 and its overexpression in bone-metastatic cells. The upshot of all this is that AP-1 inhibition should favorably influence the bone metastatic process, and as Austrian researchers and others have found, curcumin is a powerful AP-1 inhibitor, capable of abolishing the activation of IL-11 and hence a useful adjunct in blocking bone-metastatic adverse Smad signaling, so you may want to consider supplementation with a pharmaceutical-grade Sabinsa-certified curcumin preparation standardized for curcuminoid content. For details, you may want to read by coverage elsewhere in these forums (aggregated together into this Curcuminoids link. Note also that curcuminoids are also powerfully anti-metastatic (including against metastases to bone, lungs, liver and brain).
  2. You should be on a HD-D3 (high-dose Vitamin D3) regimen optimized for both bone health and antitumor activity, at 3000 IUs / daily, again for reasons I have extensively documented elsewhere in these forums (I've aggregated the relevant posts at: HD-D3).
  3. Finally, it strikes me that you are now not on any active endocrine therapy, yet you must be hormone-positive, as you were on letrozole (Femara), and endocrine therapy is highly effective against bone metastases; failure or progression on Femara should not in general have led to cessation of all endocrine therapy, for if much of the bone-metastatic process is endocrine-driven, chemotherapy alone may be insufficiently effective as anti-metastatic therapy for bony lesions. Was there some compelling reason no other endocrine therapy was deployed in place of the terminated Femara therapy? In any case, this may be something you may want to explore with your oncologist.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

muffy

Goddess
Registered:
Posts: 160
Reply with quote  #3 
Hi Constantine,
Just wondering if you had any specific brand recommendations on the curcumin?
Is the brand NSI® Turmeric Extract Curcumin C3 Complex® with Bioperine from vitacost okay?
 
By the way still having success with the SAM-e Knockout combo---and traumeel
plus the first completely normal liver enzymes in a decade.
 
Much thanks!
Susie/Saluki
muffy

Goddess
Registered:
Posts: 160
Reply with quote  #4 
Whoops--Just read your post about the lead in the NSI one----thats out!
 
One other question please--What is Curcumin's effect on the liver?
muffy

Goddess
Registered:
Posts: 160
Reply with quote  #5 
Mike--Just wanted to add my welcome
Also to let you know that Constantine's suggestions like the SAM-e and Traumeel have enabled me to be able to cut back on the heavier duty pain meds.  I have issues with both Neuropathy and musculoskeletal
pain.  Sometimes they overlap and its hard to distinguish whats what.
 
Sometimes it just takes a while to hit a regimen that helps with the fewest or at least manageable side effects.  Hoping it
happens quickly for you.
Take care
Susie
MREanes

Angel
Registered:
Posts: 77
Reply with quote  #6 
Constantine,

Thanks for all of the information.

I talked with my onc today and I will be starting gabapentin today.

I have a CT scan and bone scan scheduled for next Monday.  After we get the results, we will decide on the treatment plan going forward.  We discussed adding hormone therapy at that point.  My onc typically doesn't give hormone therapy while undergoing IV chemo, but seemed open to the idea.

One of my nurses is going to investigate the curcumin.

I have also scheduled an appointment with my orthopedic surgeon for mid-April to review my leg pain.

I appreciate your help!

Susie - Thanks for the welcome, support and sharing your experience.

Thanks again to all,
Mike
edge

Chief of Research
Registered:
Posts: 1,129
Reply with quote  #7 

Susie / Saluki:

So glad you're doing well on the Traumeel + SAM-e + Melatonin / Theanine/ Valerian complex.

Curcuminoids and the Liver
As to the effect of curcuminoids on the liver, there are several.

First, it is a hepatoprotectant, protecting against the hepatotoxicity of a broad spectrum of chemical, pharmaceutical, nutritional toxins and radiotherapy(including alcohol and chemotherapeutic agents), in part by inhibiting NF-kB activation of proinflammatory, pronecrotic and profibrotic cytokines, chemokines, iNOS, and COX-2 production, and by the inhibition of associated oxidative stress.

Second, it exhibits powerful hypocholesterolemic and antihyperlipidemic / hypolipidemic activities (lipid-lowering potency), as well as antidiabetic activity, via underlying alterations in fatty acid metabolism, thus helping to prevent adverse lipids liver accumulation and adipose tissue weight gain.

Third, It is also directly cardioprotective and hence mitigate the adverse effects of coronary and cardiovascular disease on the liver.

Finally, it is inhibitive of carcinogenesis, tumorigenesis, and tumor proliferation, adhesion, invasion, migration, and metastasis, and angiogenesis, and targets virtually every major pro-cancer underlying molecular pathway and pathogenic process ever identified, and hence protective of both primary and metastatic tumor involvement to the liver (and other organs and viscera of course).

Optimal Curcumin Formulation
There are only six formulations of pharmaceutical-grade curcuminoid-standardized products that are Sabinsa-certified (using the same formulation as used in the research studies), but only one of these, Ageless Cures, has been quality-control tested by Consumerlab, and it failed. The other five are from Futurebiotics, Designs for Health, Pure Prescriptions, America's Finest, and Doctor's Best, and any of these should be fine. Doctor's Best, is affordable and heavily discounted, but had one reported quality control for an unrelated bone supplement product; I have heard good reports on Pure Prescriptions and Design for Health but they were not as yet quality tested; I know nothing about America's Finest, having never encountered any of their products, and Futurebiotics, like Doctor's Best, had one quality control problem for a different branded product. Still, these as isolated problems and most brands are sporadically affected: it would have been nice if the Now Foods standardized curcumin product were Sabinsa-certified, since Now Foods products have not failed an quality-control testing, but it isn't although it is still highly likely to be very high quality.

In fact, I use a combination of Doctor's Best, which is piperdine (Bioprene)-enhanced for bioavailability, as well as Now Foods' Curcumin (665 mg of Total Curcuminoids) trusting to its quality, which is unique in even standardizing on demethoxycurcumin and bisdemethoxycurcumin - quite rare and suggesting a highly refined assay - despite it not being Sabinsa-certified, because when I wish to take higher amounts of curcuminoids, I want to avoid consuming too much of the piperdine (15 - 20 mg, maximum daily is advised), and so shuffle in for the extra dosing (beyond one to three capsules of Doctor's Best) the non-piperdine Now Foods product.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

ShirleyHughes

Wild Woman
Registered:
Posts: 176
Reply with quote  #8 
Hey, Edge.  As always, so nice to "see" you.
 
I am on 50 mg of Amitriptyline and have been for years.  I was on a higher dose many years ago for fibromyalgia.
However, I do not believe I have fibro because I failed the "test."  
 
I'm also on 37.5 mg of Effexor.  I also take .5 mg of Alprazalom.  Yes, I'm a mess!    I've suffered from anxiety and depression in the past.    I still have those problems occasionally, but not nearly as bad.
 
Now, my question (that darned spell checky thing keeps showing up after I'm done with it!).  The Amitriptyline does help with sleep, but not as effective since I've been on it for so many years.  If I could get myself off of Amitriptyline and Effexor do you think Sam-e would be an idea for me to try.  I don't know what my doc would say.  He's usually willing to listen, but.....well, you know doctors.
 
I take the Doctor's Best tumeric/curcumin..whatever it's called.  I'm probably not taking enough, but I will increase it a little.  I've been taking NSI Calcium Citrate and also their vitamin D3.  Now I'm afraid that it may not be the right stuff.  I take Mag citrate from Allergy Research.  And other supplements from NSI.  Geez, it's not fair that we have to worry about what is or isn't in our supplements.
 
Thanks for all your input. 
Shirley
edge

Chief of Research
Registered:
Posts: 1,129
Reply with quote  #9 

Shirley:

Welcome, great having you here, and thanks as always for the kind words.

SAM-e would indeed be well worth a try, dosed and scheduled as I documented, and you may want to also consider for additional support the Melatonin / L-Theanine / Valerian (MLV) complex formulation I recommended for Susie / Saluki (our "Muffy"); it's an excellent sleep aid, uncommonly well-formulated. The best commercial product I am aware of is from Schiff, called Knock-Out Melatonin with Theanine and Valerian, and available from and discounted at Vitacost.com (click on the preceding product name link). Remember this is taken only at night. If you need an anti-anxiety effect during daytime, you may want to consider using an L-Theanine preparation without melatonin - Source Naturals L-theanine + proprietary Relora is one well designed formulation, and you can add a high-potency standardized valerian, like the Planetary Formulas Full Spectrum product, for additional daytime anti-anxiety effect; however, SAM-e itself is strongly sedative and so you may only need it, or it plus either a theanine or a valerian supplement.

However, a caution: it's imperative that you work down on these psychoactive agents - for amitriptyline (Elavil), but especially for venlafaxine (Effexor) and alprazolam (Xanax) - very gradually (50% at no sooner than 6 weeks), and it would be best to graduate down one agent at a time, and I would suggest leaving the Effexor for last, beginning with the alprazolam (Xanax), followed by amitriptyline (Elavil), and Effexor last thus assuring some significant antidepressant activity throughout the stepdown process. Furthermore, SAM-e should be started before any stepdown, and worked up to full dose - 1200 mg (although occasionally 1600 mg may be necessary for extra anti-depressant activity), stepped-up 400mg every fourth day to full dosing, before any stepdown begins. After you're on SAM-e at full throttle for approximately 6 weeks, you should immediately start the MLV complex, only starting the stepdown process after being on the MLV (and hence full dose SAM-e) for about 10 days. Then stepdown first on the alprazolam (Xanax), then the amitriptyline (Elavil), followed last by the venlafaxine (Effexor), each one as a time in a graduated fashion.

As to the alprazolam (Xanax), if you don't want to work off of that, then just start the stepdown with amitriptyline (Elavil) and proceed as above. Xanax is not a trivial agent to withdraw from, and it affects the "architecture" of sleep more than certain other agents, with more rebound phenomena and more extended next-day carryover. Lorazepam (Ativan) may be superior, and it is a pure anxiolytic (anti-anti-anxiety agent) rather than a sedative / hypnotic, so results in smoother anxiety relief and with less potential for habituation, but is still excellent for quality sleep. Another alternative is the new ramelteon (Rozerem), a melatonin derivative with a superior hypnotic profile: minimal distortion of sleep architecture, no significant potential for abuse, and no motor and cognitive impairment even at up to 20 times the recommended therapeutic dose. Unlike the other interventions, both Ativan and Rozerem are prescription-only products, and Rozerem requires some care in coadministration with other drugs, oncological and non-oncological, because unlike melatonin itself, it's metabolism is heavily CYP3A4-mediated so there may be some clinical significant interactions, but it depends on what the coadministered agent is.

As to the supplements you are taking, I am unaware of any quality control issues with any of those mentioned, so you should be okay.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

ShirleyHughes

Wild Woman
Registered:
Posts: 176
Reply with quote  #10 
Thanks so much for the info, Edge.  I'll have to print it to remember it. LOL  You always give such detailed info for which we ALL are thankful.
Shirley
Fancy

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Angel
Registered:
Posts: 506
Reply with quote  #11 
Hope something works for you, Shirley.  My husband had neuropathy.  It ain't fun.

__________________
the Frog's Princess
12/05 ILC 1C NX M0

4/1/08 Stage 4
and looking for NED
muffy

Goddess
Registered:
Posts: 160
Reply with quote  #12 
Just getting back here.
My fifth anniversary and my breast surgeon graduated me to once a year visits and prescribed that I go out and have a drink-----something I never do being ER+/PR+.
So I made an exception and went out and celebrated big time.
 
Leave it to me ---came home sick as a dog, fever---been hacking away ever since- a week tomorrow
 
Finally, checking in tonight.
 
Thank you so much Constantine for the info.  I've ordered both the Doctor's Best and the Now brand of Curcumin.  I will be adding it to my regimen.
 
I cannot tell you how grateful to you I am regarding the
heads up that Milk Thistle could possibly be estrogenic.
I just stopped it and will take the curcumin as a safer alternative.
 
Always thankful for your advise.
Susie/Saluki
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