accupuncture and CLL

[Gardengirl44]

I have added acupuncture into my watch and wait regimen. Any of you out there do the same? What are your thoughts? I am on the fence.

[cajunjeff]

GG, what problem are you having that you think acupuncture might help? I think there is some evidence it might help with issues like pain, anxiety, nausea and fatigue but less evidence that it help with actually treating any cancer.

I personally think the science with acupuncture is weak and with cll I would worry about the infection risk associated with so many punctures.

That said, acupuncture has been around for a very long time and has many proponents, many more so than a lot of other alternative treatments. I have two doctor friends who both practice physical and rehab medicine who recommend it for some patients. I have a few friends who I think are smart folks who believe they get a lot of benefit from it.

A lot of the major cancer centers have a web page on acupuncture that i think give it some legitimacy. It seems as if the bottom line is that acupuncture tends to work best in people who think it will work, raising questions as to whether it really works. But the risk associated with acupuncture are not great, so even if someone just perceives it makes them better, that in and of itself is a benefit.

I think the infection risk is very small, so without knowing more and since you are interested in it, why not give it a try? I would love to hear your experience with it. I think the feedback you get on here is predictable. Those folks who believe in alternative treatments and natural remedies in general will be the ones most likely to support acupuncture.

You are a very objective lady with a great science background. If you say it works, I might even try it. Ill have to figure out what I would take it for though. lol. My back would be one reason I guess.

mayoclinic.org/tests-proced...

mdanderson.org/publications...

mskcc.org/cancer-care/patie...

[Gardengirl44 in reply to cajunjeff]

Thx for sharing!! When I go in he will ask what is bothering me, so it's good to have certain things to mention like back issues, aches, pretty much anything. I notice there are only a few places that bother me w/ the needles and that's my feet and my shins. Makes sense, as they are sensitive places. I have a friend who is now walking where her back was so bad she couldn't. Great to combine w/ overall health. I have noticed that a few of the needles left marks that took a bit longer to heal. However, I am going to continue and play it by ear. Clearly no pressure, since it's an extra. I also find that I am "groggy" after, so I am sure that helps w / anxiety .

[Big_Dee in reply to cajunjeff]

Hello cajunjeff

I agree with your synopsis of acupuncture and I would not be a good candidate for acupuncture as I am skeptical of it's value. My wife had acupuncture performed on her last week by PT, felt some relief from arm pain, but not much. I don't have a lot of pain or anxiety issues, but if I did, I would try it. I would however insist that the needles be sterilized. Blessing with that back pain.

[GMa27]

Acupuncture is fabulous. Been going way before I got CLL. Helped me thru past minor cold, aches, back issues, sleep issues, kept my immune system boosted- hardly ever got sick. Then it was great thru my chemo. Never had major chemo side effects. You have to find a person trained outside of USA or trained with specialist. 💕

[Gardengirl44 in reply to GMa27]

yes mine trained outside of US. do you get some marks from needles..? they heal but a bit slower.

[AussieNeil Partner Administrator in reply to Gardengirl44]

If you are having difficulty with the puncture wounds healing, then you need to be particularly cautious about the infection risk associated with acupuncture, especially if your neutrophils are low. Our skin is a very important barrier against infections.

I've read a fair bit about acupuncture and agree with cajunjeff that the evidence for acupuncture per se is poor. There has been a vast number of studies with the better ones using sham needles in comparison trials to try and determine if acupuncture actually provides a statistically meaningful benefit. Where there is good evidence of benefit, it's through something else other than the skin piercing, such as using a TENS machine to electrically stimulate muscles via the needles, which wouldn't work if non-electrically conductive needles were used. I've personally experienced benefit from acupuncture with what was intractable back pain, but that was before my CLL diagnosis. Having had two hospital admissions for cellulitis, I'm very wary of anything which breaches my skin barrier nowadays.

Neil

[GMa27 in reply to Gardengirl44]

No issues with needles. They are teeny tiny. Once in awhile I get a blood spot. She cleans it up. I tend to bruise easily all my life. These do not effect me at all.

[seelel]

Acupuncture is poorly understood by mainstream medical science, and therefore the evidence supporting it is not really there. Unfortunately they are looking at it with a model that doesn't really fit its intrinsic structure and actions.

There is the circulating 'Chi' which most people hear about, but there are also two reservoirs of subtle energy. One is 'Jing' and the other, 'Shen'. Western medicine just can't get its head around this kind of paradigm.

My experience with acupuncture has always been good. I haven't used it for CLL per se, but when I was leading a busy professional life with high levels of responsibility, I used to have a 'tune-up' every 6 months. My acupuncturist was an Aussie who trained in China. She had a method that topped up the depleted circulating Chi from the Shen reservoir. I would arrive at a session totally tired and wimpy, and leave bouncing like a gymnast. So acupuncture works for me with bells on..........

[KatieBlue]

I absolutely loved when I went for acupuncture, primarily for chronic, intractable pain.

For reasons beyond the scope of this, I have not continued going since late 2018.

I did run it past my heme-onc and she was fine with my going for acupuncture. However, a dear friend of the family who does veterinary acupuncture was adamant that someone with cancer should not have needle acupuncture as needles have a tonifying effect. (She put it much better than I am retelling…) The gist of things being can cause cancer to grow faster, based on what she learned.

At least it made me feel a bit better that I haven’t been needled in almost 2 1/2 years.

My go to modality for pain relief these days is whole body vibration with a platform from lifeprofitness dot com. And a few other of their products. That being said, the platforms also have some contraindications and I needed to gain approval from two different specialists before I ordered my platform.

[P444ete]

I’ve been having acupuncture for the past few years alongside CLL and I’ve found it very beneficial from a physical and well being point of view

[Phil4-13]

I began acupuncture 3 years ago to relieve stress. My GP is certified in acupuncture. I receive that treatment in my scalp (3 needles) and shoulders(3 needles). I do not use the electric stimulation that is offered. My doctor comes to me about every 15 minutes in the hour I’m there and slightly twists the needles for stimulation. I moved on from twice a week to once every 2 weeks. I am calmer and have never been on anxiety medicines. The acupuncture treatments took about 3 weeks, going twice a week, to give me the calmness I experience now. I do have to say, I do pray daily and know that I receive strength from it. Acupuncture in my knee area to relieve pain there, was stopped after one time because of the bruising. I recommend acupuncture to those who are comfortable with the treatment. The months I missed due to the pandemic, definitely had my anxiety rise up. I made it through with prayer and not doing or going anywhere that could bring on exhaustion. I’ve learned to clean my house, a chore a day. The same for my garden maintenance, only a part of it at a time.So much of how we feel is based on our thinking. I’m doing my best to get better at it. And at 72 years young, it’s about time! Sandra

💪🙂

[Gardengirl44 in reply to Phil4-13]

You are a beautiful person! Go live the best life possible. Thanks for the feedback.

[Phil4-13 in reply to Gardengirl44]

😍Sandra