LE on NBC nightly news!

cookiegal

NBC had a story about the complimentary center at MSK. The patient profiled had LE and was wearing a sleeve, but no glove.

Even the "OTS", over-the-shoulder box during the anchor leede showed the sleeve.

Binney4

If anyone missed it, it's here:
http://vitals.nbcnews.com/_news/2012/10/15/14460663-alternative-therapies-offer-pain-relief-to-cancer-patients?lite&ocid=msnhp

Her arm is visibly swollen despite her LympheDivas sleeve and she has no hand protection--sigh! She's using exercise and acupuncture (in the affected arm--yikes!) as complementary therapies, but it's impossible to tell if she's actually getting any CLT and doing her own self-care. She says the acupuncture has been useful in returning sensation to her arm (which would be a typical side-effect of surgery) but doesn't connect it at all to her LE.

Interesting to hear the "L" word mentioned on a news program! I wonder if they'd ever do a segment in their Medical series on LE?

Thanks, Cookie,
Binney

carol57

It would be great to have some factual (for once!) LE information presented by a high-profile show.  Somehow, probably because it's macabre, the world wants to be 'aware' of all of the boob disfigurements and removals.  But the true collateral damage that is LE?  Apparently not draconian enough to warrant talking about, even though awareness would help reach BC patients/survivors who are cluelessly taking needless LE risks, and maybe even give a clue to their healthcare providers.  End. of. rant.

LympheDIVAs

We saw it, too! I emailed NBC national as well as our local Boston and Albany affiliates about a follow-up on lymphedema last night but haven't gotten any response. 

 If anyone has any contacts, please let me know and I will try to reach out for a story about collateral damage.

The issues of not wearing hand compression and accupuncture in an affected arm are things that need to be discussed and surprised that the representative from MSKCC didn't even mention it. 

 Thanks!

josh 

cookiegal

In all fairness, that is my accupuncturist, and he has been doing a clinical trial with accupuncture in the affected arm.

I did not participate, but seeing as I had a gazillion neuralprolo injections, I'm not going to pass judgement.

Glove tho...oy vey!

cookiegal

I'm gonna suggest WABC tv 7 perhaps, they do a lot of heath reporting, they have a 1/2 hour bc special, and I have actually seen a brief LE story there before.

They will want someone who lives in NYC to feature, and a provider. 

LympheDIVAs

Cookiegal,

Accupuncture may be a viable option. The 'needle sticks' don't go very deep and if they are able to stimulate lymph flow, then that's fantastic. So much Eastern medicine is unknown and the effets can be wonderful, but one just needs to be careful

purple32

Binney

what is CLT ?>

Binney4

Purple, it's a typo! Should have been CDT: Complete Decongestive Therapy. Which is what therapists do, and it includes Manual Lymph Drainage (MLD), wrapping in short-stretch bandages, specific exercises while wrapped, and skin inspection and care.

Sorry about that!  ;-)
Binney