CIPN and Calmare therapy?

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maco
maco Member Posts: 3

I've developed chronic chemotherapy induced peripheral neuropathy (CIPN) in my feet, after my chemo treatment (Taxol), going on now for 2 years.

I'm on the maximum dose of pain medication that I can tolerate (Gapapentin, Venlafaxine, Tramadol). Still I have pain on and off all day long. I can barely walk 2 blocks, the medications makes me not only dizzy, but also tired. My husband is very supportive, but with work and two small children on my hand I feel like I'm getting closer and closer to a break down. 

Over the past two years I've been seeing a neurologist and now a pain doctor, I have also tried acupuncture with little success and had insoles made for my shoes (they do help).

Doing extensive research on the internet I keep coming across the Calmare therapy. I think it is also called scrambler therapy. Has anybody tried out Calmare therapy for CIPN...with success? 

Comments

  • razorzmd
    razorzmd Member Posts: 2
    edited May 2011

    ...the Calmare is a TENS device -- plain and simple...the company that sells it and clinics that use it make assorted outrageous claims about how it sends "scrambled" signals to the brain to teach it "non-pain"...all of which is physiologically impossible nonsense...in the one study published by Smith, although he found positive effects, he had no control group and couldn't rule out a placebo effect...but he also reported that patients did NOT reduce opiate use, did NOT report a significant increase in quality of life, and he could NOT replicate the results on different pain scales -- this is all consistent with the device having no REAL effect on pain...an additional consideration is an adverse event report that has been filed with the FDA:

     http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/detail.cfm?mdrfoi__id=1942154

     ...also, if you go to:

    http://seekingalpha.com/article/269968-why-competititve-technologies-could-be-ridiculously-undervalued

    ...and read the comments by me (rayzmdAKArrtzmd), you'll find quite a bit more information...my opinion is that it is a TENS device as it was approved by the FDA...if you have 1500-2500 bucks to gamble on spurious claims, the best I can say is that it is unlikely to be any more of a risk than an ordinary TENS...

  • maco
    maco Member Posts: 3
    edited May 2011

    I've read your very negative comments on Calmare also on other sites related to CIPN.

    If the Mayo Clinic and the Massey Cancer Center are doing clinical research with this new devise I can hardly believe it is nonsense.  

    So please stay of this blog entry, I'm not interested to hear about what you have to say.
  • rrtzmd
    rrtzmd Member Posts: 8
    edited May 2011
    ..."I'm not interested to hear about what you have to say."???...you're not interested that the company selling this device has claimed the inventor is an "MD, DSc." -- which he isn't...they've claimed he is a "professor" -- nowhere I can find past or present...

    ...you don't care that the facebook page that promotes the Calmare:

    http://www.facebook.com/pages/Spero-Pain-Relief-Therapy/106660846068389

    ...is run by the family of Tom Kocherans who just happens to be the western distributor...or that he's he's a former stockbroker who was sued not once but TWICE by the SEC for attempting to manipulate a stock's price; the second time the SEC sued him AND several others -- including the Calmare promoter CTT -- for attempting to manipulates CTT's stock price...

    ...you don't care that Smith's paper -- the ONE paper done in the US -- reported positive analgesic effects but admitted it couldn't rule out a placebo effect...and admitted his other results were NOT consistent with the alleged therapeutic benefit:

    "The secondary endpoints showed MINIMAL change with MC5-A Calmare therapy. There was NO consistent effect on the OTHER pain scales (data NOT shown). There was NO difference in morphine oral equivalent dose from Day 1 to Day 10 or afterward; three patients decreased their dose but the AVERAGE stayed at 110-150 mg morphine oral equivalents per day (data NOT shown.) There was NO change in formal quality of life OR symptoms other than pain, as assessed by the Symptom Assessment Diary (data not shown.)"

    ...pain is PAIN on ANY scale but he couldn't replicate the results ousing other scales...he claimed a significant difference in pain but he COULDN'T demonstrate a decrease in analgesic use -- people that aren't hurting DON'T need as much analgesics...and a significannt reduction in pain should make people feel a LOT better about life in general and that SHOULD show up as an improvement in "quality of life"...

    ...and you don't want to know about the FAILURES people have reported or the ADVERSE EFFECTS people have reported?...

    ...YOU don't want to know about ANY of these things?...okay...then consider the possibility that someone reading this thread MIGHT WANT to know before letting some quack medical device separate them from their money...

  • Truegrit
    Truegrit Member Posts: 2
    edited May 2011

    This guy along with  rtzmd is a paid spammer. His employer is short the stock CTTC and is losing his rear. I have personaly been treated with Calmare for Chronic pain it it works.Clinics are opening all overr the country The Mayo Clinic, The Massey Cancer Center and The University of Wisconsin are all doing studies on the device. Walter Reed is also using the device and it's helping our wounded warriors. Talk with any MD who has used the device. calmarett.com is the website where you can find locations and MDs that use the Calmare machine.

  • razorzmd
    razorzmd Member Posts: 2
    edited June 2011

    ..."Truegrit" says "rrtzmd is a paid spammer"...I wish!...I only post because the thing is so bogus that I find it reprehensible that anyone should try to foist it on the American public...Italy turns its nose up at it for ten or twelve years, then "so maybe we can sell it to those stupid Americans"...let me add a few details:

    (1)...how about talking about the inventor -- "Giuseppe Marineo"...were you aware that he was arrested in 1995 apparently for practicing medicine without a license:

    http://archiviostorico.corriere.it/1996/aprile/01/BELLEZZA_mio_Aids_punizione_Dio_co_0_9604013050.shtml

    ...it appears he was trying to treat AIDS patients by providing electric current through externally applied electrodes...hmmmm, that sounds a bit similar to the "Calmare"...and I think the article says something about "many describing it as witchcraft"?...my Italian's a bit rusty so I'm not sure if my translation is accurate...

    ...and did you know that, despite several press releases from Competitive technologies labelling him as "MD, DSc.," that he has neither a "MD" nor a "DSc."...indeed, despite his claim to being a bioengineer, he may not, in fact, have any college degree whatsoever...yet despite that, in 2005, he published a paper wherein he labelled himself "MD, DSc.":

    http://www.smj.org.sa/PDFFiles/Aug04/Delta20040158.pdf.

    ...I think there's general agreement that it's not proper to grant oneself advanced degrees for articles published in scientific journals, is it not?,,,furthermore, I note some websites refer to him as "Professor Marineo"...where exactly is he or has he ever been a professor?...nowhere that I can find...

    ...you also might find interesting a paper written by Marineo explaining his idea of treating AIDS by manipulating "entropy" with his device:

    http://groups.google.com/group/sci.med.aids/browse_thread/thread/36f7c9d8f14bf635/ff2b80dd3f40b29c?lnk=gst&q=marineo#ff2b80dd3f40b29c

    ...be sure to read the comment supplied by Christopher J. Batie, Ph.D., of the Dept. Biochemistry and Molecular Biology at Louisiana State University Medical Center...pay particular attention to those paragraphs containing "crackpots," "mess," "strange," "mistaken," "wrong-headed," "magic box," "slickly presented batch of buzzwords and jargon," "meaningless," "waste of bandwidth," "doesn't know what he's talking about"...

    ...finally, have you examined website for Marineo's alleged research center:

    http://www.deltard.com/eng

    ...did you notice that it seems to lack any PHYSICAL address...not only that but it appears to lack a telephone number as well...he makes several references to Tor Vergata University on the site but a search of the university's website suggest they aren't aware either he or his "research center" even exists..that strikes me as being most unusual...

    (2)...how about a few other pertinent details...for example, how about mentioning a study that concluded the "scrambler" was not significantly different from TENS:

    http://www.europeanjournalpainsupplements.com/article/S1754-3207(10)70471-5/abstract

    ...it was presented a year ago here -- #144:

    http://www.neupsig.de/may29.pdf

    ...they looked at cold pain perception and pain endurance and found no significant difference between TENS and the "calmare"...which confirms what I maintain -- it IS a TENS unit, has always BEEN a TENS unit and will always BE a TENS unit...and maybe point out some details from Smith's paper:

    http://www.calmarett.com/media/pdf/JPSM Pilot Trial Sept2010.pdf

    ...he reported positive analgesic effects but neglected to include a control to rule out the possibility of a placebo effect...MORE IMPORTANTLY, his other results were NOT consistent with the alleged therapeutic benefit -- emphasis mine:

    "The secondary endpoints showed MINIMAL change with MC5-A Calmare therapy. There was NO consistent effect on the OTHER pain scales (data NOT shown). There was NO difference in morphine oral equivalent dose from Day 1 to Day 10 or afterward; three patients decreased their dose but the AVERAGE stayed at 110-150 mg morphine oral equivalents per day (data NOT shown.) There was NO change in formal quality of life OR symptoms other than pain, as assessed by the Symptom Assessment Diary (data not shown.)"

    ... internal consistency is IMPORTANT...the pain scale used SHOULD NOT matter relatively...pain is PAIN on ANY scale...you may not be able to demonstrate significant differences but you SHOULD be able to show AT LEAST a similar trend in the effects produced by the therapy...by the same token, if you claim that you have removed 80% of a patient's pain, then you SHOULD be able to demonstrate a SUBSTANTIAL decrease in analgesic use -- people that aren't hurting DON'T need as much analgesics...and if 80% of a patient's pain is gone then they SHOULD be feeling a LOT better about life in general and that effect SHOULD show up as an improvement in "quality of life"...

    ...in conclusion, it's a TENS unit...it's a TENS unit that was approved as such by the FDA...it's a TENS unit that ALREADY has CPT codes...it's a TENS unit that is ALREADY reimbursed by insurance companies when the physician says it's medically necessary...TENS units can be bought for 40-50 bucks on Amazon...now, everybody that wants to pay 50 THOUSAND bucks for a TENS unit, raise your hands...anybody....any...

    ...by the way, NOW CTT says its applied for CPT codes specific to the "calmare"...however, their application is for Category III CPT codes and they gloss overthe FACT that such codes are of use ONLY as tags to help collect trial data and are NOT used in any way, shape, or form for REIMBURSEMENT...that's typical of the shenanigans that come from Competitive Technologies -- the company promoting the device...

    (3)...and I won't even go into their bizarre history but suffice it to say it amazes me that they hired Thomas Kocherans as a distributor...in case you haven't kept up with my other posts, he's the former stockbroker who was sued not once but TWICE by the SEC for attempting to manipulate a stock's price; the second time the SEC sued him AND several others -- including CTT -- for attempting to manipulates CTT's stock price...the SEC fined him $50,000 for attempting to manipulate CTT stock and lo and behold he's now working for CTT!...check out the calmare pump page on Facebook:

    http://www.facebook.com/pages/Spero-Pain-Relief-Therapy/106660846068389

    ...it looks like he has his entire family pumping the thing there!...the "Penny" that authors the page I'm guessing is his wife...and then there's Kelly Kocherans(sister?) who likes it...so does Theresa Kocherans(daughter?)..... look there would you, Ruth Larson Kocherans not only likes it but she even had her chronic back pain cured it!...

    ...maybe it's just me but it looks a tad "hinky" to employ a guy who was was sued for manipulating your stock's price, doesn't it?...ESPECIALLY when Tom's usual job is selling real estate:

    http://www.realtynetadvisors.com/salesman/tom/index.php?agent=6

    ...makes you wonder, doesn't it?.

    (4)...there are many other details...indeed, I felt compelled to file complaints with the FDA and the Federal Trade Commission about marketing of the device...after wading through several awkward webpages, I finally managed to send off:

    "Basically, CTT sells a FDA approved TENS device it calls the "Calmare"...in marketing and selling this device, they make what I consider to be outrageous, physiologically impossible claims about how it works...for example, in their brochure:

    http://www.calmarett.com/media/pdf/Pain Mgmt brochure.pdf

    ...they claim, their device "incorporates electromedical equipment for stimulation, and uses the nerve fiber as a passive
    means to convey a message of normality to the central nervous system (CNS) by a procedure defined as scrambling or tricking of information, which then enables the CNS to modify the reflex adaptive responses."

    ...any neuroscientist will tell you that's just gobbledygook that sounds impressive but is basically nonsense...

    ...in that same brochure, they also say that "Doctors at a major US military medical center refer to it as TEMPR - Transcutaneous
    Electrical Modulation Pain Reprocessor."...even aside from using the vague military reference to lend credence to their claim, they are clearly trying to change this thing from a TENS device to a "TEMPR" device -- even though there there really is no such thing as a "TEMPR" device and despite the device being approved ONLY as a TENS device...

    ...further in the same brochure, they say, "Using TEMPR technology, the patient does not become desensitized to treatments over extended cycles."...well, again, not only is there no such thing as "TEMPR technology," they have nowhere proved that patients do not become "desensitized" -- whatever "desensitized" means in this context...

    ...this device has started to appear in some clinics and the falsity continues...for example, from:

    http://www.sperotherapy.com/

    ...comes this:

    "Is this device similar to a TENS unit?
    No. The Calmare® MC-5A device creates a low energy electrical impulse which travels through the patients nerves delivering a "no-pain" signal to the brain."

    ...well, it IS a TENS unit and claiming otherwise is simply false...and there is no such thing as a "no-pain signal"...then from:

    http://www.rutherfordpainrelief.com/new-treatment.html

    ...comes this:

    "Calmare Pain Therapy Treatment (MC-5A) patented technology creates a series of complex artificial neuronal messages that are transmitted to the brain via the body's dermatome pathways."

    ...again, more nonsense...it's physiologically impossible to send "a series of complex artificial neuronal messages" via "dermatome pathways" or any other pathway using electrodes applied to the skin...

    ...these treatments cost 150-250 dollars each and require -- so they claim -- 7 to 10 treatments to be effective...people seeking relief from pain shouldn't be exposed to double-talk and specious claims...it's a TENS device and should not be allowed to make claims beyond what is allowed for all other TENS devices..."

    ...I could have written considerably more but they only allow you 5000 words...

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited July 2011

    Just thought you might be interested in a study done to look at a topical preparation for CIPN:

    http://www.ncbi.nlm.nih.gov/pubmed/20496177

    Dr. Deb Barton has done a LOT of research on quality of life issues for breast (and other) cancer survivors.

  • Truegrit
    Truegrit Member Posts: 2
    edited September 2011

    I found a great article with some great links on Seeking Alpha.There are five hyperlinks in the article in just this section. You need to go to Seeking Alpha to be able to click on them.

    Clinical Studies and Peer-reviewed Articles

    As for clinical studies, there currently are a number studies being conducted at the Mayo Clinic, University of Wisconsin Carbone Center and the Massey Cancer Center at the Virginia Commonwealth University-- including evaluating the efficacy of Calmare in the treatment of Chemotherapy-Induced Peripheral Neuropathy (CIPN). The following links will provide details of each trial:

    [b]Massey Cancer Center[/b]] at Virgina Commonwealth University

    [b]Mayo Clinic[/b] (5 studies being conducted or currently being set up)

    University of Wisconsin (UW) Carbone Center

    A more layman-friendly notice of the UW study is in its recent newsletter, found[b]HERE[/b] (Right column, center of page)

    Additionally, Calmare has been the subject of a number of peer-reviewed articles in the Journal of Pain and Symptom Management, as published in the[b] JPSM Journal

  • maco
    maco Member Posts: 3
    edited February 2012

     

    IT WORKS!!!

    I've posted the initial message about Calmare therapy last May.

    For the past 2 1/2 years I've been suffering from CIPN, after undergoing Taxol treatment for breast cancer. I've been on a high dose of pain medication (Gapapentin, Venlafaxine, Tramadol), as well as morphine patches. Still my pain was at a level between 5 to 10. I also had twice a unsuccessful nerve blockade and once tried a cortisone shoot in my fee. Nothing has worked.

    Meanwhile I've been constantly researching options and had some contact with the Massey Cancer Center, as well as with the University of Wisconsin (UW) Carbone Center. They put me in contact with a CIPN patient, who underwent Calmare treatment. Talking to this patient was encouraging. Then in the fall when I learned that the US military bought the Calmare device--to treat their soldiers for nerve pain. I decided to give it a try and underwent a 10 day treatment at the Rutherford Allied Medical Group with Dr. Cooney. 

    Afraid of being disappointed again, I was a skeptical patient. But already after the first treatment, my feet felt relaxed and I could sense a slight relief. Then I got better with every treatment and I started cutting down the pain medication. After 10 treatments I was on 10% pain medication and the pain was at level 3. When I returned home the pain slightly increased and with it I increased again the pain medication, but then it stabilized. Now 2 month later I'm on 40% of the pain medication--of what I've initially taken--and the pain is manageable at level 3. 

    Overall I feel so much better, the Calmare treatment has given me back some quality of live. I've much more energy, my head is clear--being on much less medication--and I feel hopeful. It's great to be on the street and look down the block, knowing that I can actually walk there and it is even better that I can finally take my children to the playground.

    I hope Calmare treatment will soon be available in my part of the world, so I may be able to get some booster treatments. 

    If you suffer from CIPN you should give it a try. Good luck! Smile

  • emmawatson009
    emmawatson009 Member Posts: 1
    edited September 2015

    Calmare pain therapy is one of a network of independent treatment Centers across the country helping many hundreds of new patients each year regain a more normal life with real relief from the symptoms of peripheral neuropathy.

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