chrisz

it's hard to tell what caused what but i'll try here.
Dr Khan had mentioned that the DCA could either help the chemo or inhibit it. i think in rosie's case it turned the taxol into a much stronger form of taxol. (my opinion here)
after 2 months on taxol/dca /avastin rosie's scans were greatly improved. the docs were a bit surprised that the scans were as good as they were.
but the PN kicked in.
she stopped taxol on nov. 17
she is on her off week of dca, but i will keep her off dca till we see a change in the PN she is still on biweekly avastin

the meds for the PN are;
B1/lipoic/amitriptyline and neurontin.
the neurontin really messes her up.

were trying to figure out exactly what is causing the PN
i rub her feet every night and put warm towels on her feet.
the PN seems really bad at night.
her fingertips are tingling but her feet are really bad.

other things that have helped are ritalin and more oxycotin.
not something we want to continue to do.

today she was a little better, so i am curious to see what the next couple of dayz bring.
rosie has not done acupuncture, at least not for the PN.

i hope some of this info helps you in any way.
if we make any progress i will keep you posted.
chrisz

I think it would be better to write how much B1/lipoic she is getting, and in what form (benfotiamin, R+). My impression is that the more benfotiamin, the less P/N symptoms.
Also, a right formula for P/N should include B2,B6,B12 and folic acid. I know that there is an arguement about all these supplements that might feed tumor, but the point is to find the optimum dose.

chrisz

"Acetyl-L-carnitine (ALC) has gained clinical interest for its analgesic effect in different forms of neuropathies associated with chronic pain, such as diabetic and HIV-related peripheral neuropathies. The antinociceptive effect of ALC has been confirmed in several experimental models of neuropathic pain, including streptozotocin- and chemotherapy-induced neuropathy, and the sciatic nerve chronic constriction injury model. In these models, prophylactic administration of ALC has proven to be effective in preventing the development of neuropathic pain. In addition, ALC is known to produce a strong antinociceptive effect when given after neuropathic pain has been established. ALC can also improve the function of peripheral nerves by increasing nerve conduction velocity, reducing sensory neuronal loss, and promoting nerve regeneration. Analgesia requires repeated administrations of ALC, suggesting that the drug regulates neuroplasticity across the pain neuraxis. Recent evidence indicates that ALC regulates processes that go beyond its classical role in energy metabolism. These processes involve the activation of muscarinic cholinergic receptors in the forebrain, and an increased expression of type-2 metabotropic glutamate (mGlu2) receptors in dorsal root ganglia neurons. Induction of mGlu2 receptors is mediated by acetylation mechanisms that involve transcription factors of the nuclear factor (NF)-kappaB family."

"Certain drugs are known to exert more than one action on different pathophysiological mechanisms. This is the case with acetyl-L-carnitine (ALC), which can be considered both a symptomatic therapy that can be used in any kind of painful neuropathy, and an aetiological therapy, at least in diabetic neuropathy and neuropathies induced by nucleoside reverse transcriptase inhibitors and cancer chemotherapeutic agents. ALC acts via several mechanisms, inducing regeneration of injured nerve fibres, reducing oxidative stress, supporting DNA synthesis in mitochondria, and enhancing nerve growth factor concentrations in neurons."

"ALC has demonstrated efficacy and high tolerability in the treatment of neuropathies of various aetiologies, including chemotherapy-induced peripheral neuropathy (CIPN). In several experimental settings, the prophylactic administration of ALC prevented the occurrence of peripheral neurotoxicity commonly induced by chemotherapeutic agents. In animal models of CIPN, ALC administration promoted the recovery of nerve conduction velocity, restored the mechanical nociceptive threshold, and induced analgesia by up-regulating the expression of type-2 metabotropic glutamate receptors in dorsal root ganglia. These results, plus the favourable safety profile of ALC in neuropathies of other aetiologies, have led to the effects of ALC on CIPN being investigated in cancer patients. Preliminary results have confirmed the reasonably good tolerability profile and the efficacy of ALC on CIPN. The present studies support the use of ALC in cancer patients with persisting neurotoxicity induced by paclitaxel or cisplatin treatment."

I hope this helps. I do not know how DCA and ALCAR will go together. I wish you all the best.

antony

Eponine

Sandra is traveling and has no WWW access. She asked me to to pass on her suggestion that you switch from B1 to the more bioavailable form, Benfotiamine.

And here's a link from Sandra:

http://www.thieme-connect.com/ejournals/abstract/eced/doi/10.1055/s-2001-17399;jsessionid=1A424C64A900A89F2B5BABB0170F3ECA.jvm3

Benfotiamine is available here, among other places:

http://www.lef.org/Vitamins-Supplements/Item00925/Mega-Benfotiamine.html

Parachute

Oracle, I thought acupuncture would work for Lien - I've read of many people on chemo getting great results with it. Magnesium is another mineral that can impact muscle spasms. It is often used to treat restless leg syndrome, as well as chemo induced neuropathy.

Hope everyone keeps the ideas flowing. Great minds together can accomplish much!!

Take care,
Sandra

Hi everybody,

My father started DCA 1,5gr (20mg/kg)daily concurrently with his chemo cycles. But the second week he experienced a night disconfort. Than I reduced the dose to 1gr daily. During his 3rd week he had P/N unfortunately. He gets also benfotiamine 3x1, R-ALA 3x1. In my opinion if one using DCA during chemo it is more likely that he/she experience P/N. May be we should start with low doses but I'm not sure.
BTW I want to share medicor clinic's advice for my father; They warn me not to use ALA during chemo as they say it can interfere. I don't have a scientific link for that.

Best wishes,