ACUPUNTURE?

moogie

My extended family does not understand or want to understand LE. A distant relative apparently has LE post BC  treatment and was treated through acupuncture and " IS FINE NOW"...so I am being slammed with " If you would only go get acupuncture you would be fine now too". 

It is not standard of care and I would think any skin breaks are not a good idea, but what do any of you know about this treatment? I have a dedicated LE DR. who has never suggested this as an option, although I have bilateral LE and this relative may only have one involved arm.

Moogie 

KS1

Memorial Sloan Kettering has a clinical feasibility trial of acupuncture for LE: 

http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=09-136

That MSKCC is running a trial suggests that there is some data that suggest acupuncture works. That said, I was at a meeting where the trial was described. If I recall correctly, the acupuncture was done under "clean" conditions, but not sterile conditions. Perhaps I am being too conservative, but I found this worrisome.

Lymphnotes has a page that describes the use of acupuncture. I don't know how up to date it is:

http://www.lymphnotes.com/article.php/id/23/

KS1

moogie

Thank you. I read the page, and it seems they want people with only one arm involved given the study requirements. I am also wary of the fact that there is not much other clinical evidence to prove effectiveness.

cookiegal

Actually.....It was my accupuncturist who was doing the study. But I have had so much cellulitis,I did not participate. I might have otherwise. He's a pretty smart guy, and did help me when I was having such terrible frozen shoulder problems.

My old LE thought that accupuncture could help, but did not like the idea of putting needles in the infected arm.

Binney4

Actually, KS, they're doing this study because there ISN'T any data about the use of acupuncture with LE. It has been the practise in China for milennia to treat any sort of swelling with acupuncture, but Western-style research has not been done. A Chinese doctor I spoke to about this at the previous NLN conference believes it is sometimes effective in reducing swelling, but is also clear that the needles don't need to be used in the affected quadrant in order for it to work. (She's equally clear that she doesn't trust Western-trained acupuncturists because, she says, "They're careless!" Since it's an Eastern tradition I'd hope the current study is being overseen by someone who is firmly in that tradition, but who knows?)

At any rate, Moogie, the issue really isn't how to prove to your insistent relatives that acupuncture isn't standard or proven LE treatment -- it's how do we deal with insistent relatives and friends. Kinda like the ol' "eat three grapes a day soaked in vodka" arthritis cure. (I even had a friend who supplied the vodka and the grapes!) Smile, nod, say "I'm so happy that worked for you!" And in this case, gently remind her to be alert for changes in her arm and then to get help promptly from a well-qualified LE therapist. Two can play this game. GRRRRRRR!

Hugs,
Binney

Nordy

I  had acupuncture for my lymphedema... It helped a LITTLE... and I did let him put needles in my affected arm (he left it up to me). The needles are sterile, your skin is not, although he did swipe my skin with alcohol prior to placing the needles - so the same prep they would use for blood draws. I never had an infection from acupuncture (my cellulitis occured, 4 months after my last treatment!) and even if it didn't help my lymphedema as much as I would have liked it to, it helped with a host of other ailments I had going on! (TMJ, iliopsoas syndrome, some weird ankle pain from my last running event...) My acupuncturist is Chinese but I think, western trained... so East meets West??? LOL

Anyway, my two cents... I love acupuncture... I know it is supposed to work by the body's energy flow... I really don't care if it is hocus pocus - It works for me for many things... but not so much for my lymphedema!

moogie

Ladies much thanks!

Binney: you hit the nail on the head. I have to keep hearing Sammy Davis Jr. singing " I gotta be me" when civilians put in their 2 cents and are not supportive. That is probably my biggest challenge right now!

 Nordy: I did some Chinese foot massage with a well known doctor of Chinese Medicine a few years ago. No standard massage: he does painful painful accupressure with a wooden implement. It really and dramatically affected my whole body and helped neck problems I had been suffering for months. When it is done you sweat profusely and feel like you ran a marathon. But several oncologists in the area send him patients. I might see if he would have some ideas for me!

Moogie 

dawn31337

I did acupuncture when I did AC.  Definitely calmed me down, and it was my first chemo.  I had literally no SE...now I also did Emend, so I can't say acupuncture did the trick...but I was never sick.  My opinion is there is no harm in trying it, there are no meds.   I have two friends who were in chronic pain who do acupuncture regularly and they swear by it, that's why I tried it.  5000 years of Chinese medicine can't really be wrong...or at least cause no harm.  Nothing ventured, nothing gained.  Best of luck to you.

duckyb1

I have not done accupuncture for LE which I have mildly,,,but have done it for other things............love it, and my person has a degree from University of Shanghi, and is Board Certified........she is fantastic..........had back pain, could barely walk............a few treatments, and the pain was gone............and it doesn't hurt.

ktym

3 grapes a day soaked in vodka?  That gave me my laugh for the morning.  Does it really help or does the vodka make the person not notice the arthritis as much? 

Binney4

Kate, it's even better if you peel them first!

A word of warning for those of you who have dealt with cellulitis. Acupucture is, in whatever small way, invasive. Our immune systems are compromised. It's not impossible (though it's rare) for an injury even in another part of the body to result in cellulitis in the affected arm or chest. So the conservative recommendation where LE is concerned (until proven otherwise) is to avoid it altogether if you've already had problems with infections. And if you HAVE had cellulitis, you know for sure you don't want to risk it again!

Just a thought,
Binney

Brooklyn1234

I didn't qualify for the Sloan Kettering study, but got the protocol and went to a local clinic with several different acupuncturists on staff. At first I had them just use the other arm, under the Chinese medicine theory that each half of the body mirrors the other one. I didn't notice any difference, and one of the acupuncturists told me I would get way more benefit from treating the affected arm because the arm points are meant to provide local drainage. I was nervous but let them go ahead. Sometimes the therapist had a very light touch and it worked amazingly well, and I walked out not even feeling my LE, and those effects would last through the next day. But most of the time there was either no difference or the arm felt a little more swollen afterwards. And despite use of the very finest needles, that arm would sometimes bleed, which was always scary and stressful.

The Sloan study will be interesting to watch. They're taking blood before and afterwards to measure certain inflammatory markers. The theory is that inflammation could affect LE, and accupuncture could reduce inflammation.

Binney4

Brooklyn, thank you for the first-hand information. It really is an interesting study to watch. Recent research does suggest that LE is an inflammatory condition, and reducing the inflammation should (theoretically at least!) be helpful.

Be well,
Binney

Brooklyn1234

That's why I've been wondering about whether something as simple as low-dose aspirin could help. Some women take that anyway to cut their risk of recurrence, and I believe the thinking behind that is also to reduce inflammation.

On another topic, anyone notice a worsening of LE symptoms with Zometa?