I'm interested to hear if anyone has tried acupuncture while on treatment for CLL (specifically while on Acalabrutinib)? I'd love for my husband - who takes Calquence - to try it as a stress reliever and general wellness support, but wasn't sure if there were any contraindications for CLL patients. While I think any herbal supplements should probably be avoided, I wasn't sure if there were known risks, ie, potential for infection from needling, etc.
I know acupuncture isn't for everyone, and its benefits/effects aren't universal, but I feel like it could be something worth trying to improve quality of life/mental-physical wellbeing with CLL.
Would love to hear others' experience with acupuncture. Thank you!
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OaktownA
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When you say you want "to try (acupuncture) as a stress reliever and general wellness support", to me, it sounds like you are really caringly looking for some complementary therapy to support your husband through his treatment. I'd suggest that massage would be more appropriate than acupuncture. While the risk is generally low, acupuncture involves the deliberate piercing of our largest organ, which performs a very important role in keeping pathogens out of our body. That's not a good idea when there's an increased risk of neutropenia. I ended up with painful cellulitus in both forearms from the administration of IV antibiotics for febrile neutropenia that I developed just after a week of starting acalabrutinib.
Interestingly, there have been blinded trials of acupuncture with sham needles, such that the person "having" acupuncture doesn't know whether or not real acupuncture needles are being used. Those studies have found that the benefits of acupuncture are explainable by the placebo effect - basically, the belief that acupuncture will provide a benefit, of being attended to by someone that has had been trained in the art of acupuncture and is prepared to use that training to try and improve their client's wellness. (These studies have also found that the placement of the needles doesn't matter, there's no difference whether or not they are placed on the meridian lines.) The best (questionable) evidence for traditional acupuncture comes from studies in China, but where there is good evidence of an improvement, it's from doing something else in addition to the traditional process , e.g. for pain relief, it's from the use of the needles to deliver electrical stimulation of the muscles from a TENS unit.
I hope you can find some more suitable way of helping your husband through treatment.
Interesting. I didn't know that studies had come to the conclusion that it's placebo effect. I've never found benefit from acupuncture. Found it may be a little worsening at best. I guess, I wasn't in a place where the placebo effect worked for me.
I think it depends a lot on who is giving the acupuncture. My former GP had been to China to learn the procedure and then returned to Switzerland (where we both live) to teach his skills to Swiss doctors. The first time I went for treatment by him was for a frozen shoulder. The pain was excruciating and the rheumatologist was unable to help - the cortisone injection he gave me made no difference at all. After suffering pain day and night for well over a year, I finally decided that I had nothing to lose by trying acupuncture (I worked at the World Health Organization at the time and read up on the subject). The night after my first session I felt an electric current running through my shoulder for a fraction of a second, which suggested that perhaps something was going on. (I never felt it again.) After six sessions (one a week), the pain was completely gone. I returned to him a few years later for severe insomnia which I suffered for 18 months due to different blood pressure pills, and each time I went to him, the insomnia was resolved. It was 18 months before we finally found a pill that didn't have this side effect, and each time I got the insomnia, it was cured by a few sessions of acupuncture. So I believe that if you find a reputable acupuncture practitioner, he could help where traditional medicine can't. Good luck !
Neil, I think you make a good point about piercing the skin during a treatment if there's an increased risk of neutropenia. So I'd be hesitant to mix it with Alcala.
I asked (CLL Specialist) Dr. Jeff Sharman once about acupuncture. While he didn't have any advice with respect to CLL, he admitted that it was the only thing that helped his severe back pain. Go figure.
I agree that massage is much more relaxing than acupuncture. But I've had profound results with a Chinese treatment called moxibustion, which is also based on 5 the element theory of meridians. Pre-CLL, I had a terrible (non-productive) cough for 2 years running. I'd been to doctors repeatedly, taken all kinds of meds, and nothing helped. I finally went to someone who did acupressure (no needles, just hands). He did a pulse diagnosis, and then lit a cigar-sized stick that looked like a giant incense stick, but smelled like skunk weed. He held it near some points on my wrists and legs. A day later, and for the next week, I coughed up a disgusting amount of green gunk. I've rarely had a cough since.
I have to question the "real needles vs sham needles" study. While there are different thicknesses of acupuncture needles (e.g. the Japanese needles are thinner), needles are needles, regardless of what you call them.
I also agree that the placebo effect is a real thing. I love science and I read medical abstracts for fun, but like Dr. Sharman, I'm willing to try safe complimentary therapies when nothing else works.
Neurodervish, You've touched on a couple of very important points, plus you've encouraged me to research further into sham acupuncture needles. Bottom line is that acupuncture has had so much research directed at it in recent decades, that for it to still be uncertain with regards to efficacy, i.e. not accepted as a mainstream treatment, indicates that the evidence for it is poor.
In detail:-
1) Unproven treatments can stay in vogue for centuries due to anecdotal recommendations, supported by the statistical property of Regression Toward the Mean onlinelibrary.wiley.com/doi... That's also why a double blinded randomly assigned clinical trial is the gold standard for evaluating whether or not a treatment helps better than chance. The double blinding endeavours to eliminate the placebo effect, while the random assignment to the treatment being evaluated and a control group, hopefully eliminates the influence of confounding factors, including whether we would have returned to good health even if we had not been treated (as in your interesting experience). Unproven treatments remain in vogue in part because we turn to them after we have exhausted what usually works, by which time our bodies have had longer to work on returning to our hopeful norm of good health.
2) Like Dr Sharman, I too found acupuncture was the only thing that helped my, at the time, severe and becoming chronic back pain. I got to the point of being evaluated for spinal surgery, only to be told I had normal wear and tear for my age and that surgery wouldn't help. In my case, my physiotherapist used a TENS machine, which provided temporary relief and the acupuncture needles provided the means of delivering the electrical stimulation to where it helped. Unfortunately, none of those replying saying that acupuncture helped relieve their pain, have mentioned whether their practitioner was using "The most common example of the “bait-and-switch” for acupuncture are studies that examined the effects on pain of electrical stimulation through acupuncture needles. This is not acupuncture – it is transcutaneous electrical stimulation (TENS), which is an accepted treatment for chronic pain, masquerading as acupuncture." healthunlocked.com/cllsuppo...
3) With respect to sham needles, I was interested to find the following on how well they can work:-
Developing and validating a sham acupuncture needle (2009)
Results: 20 patients received the true acupuncture and 21 received the sham. There was no significant difference between the treatment beliefs of the two groups (chi(2) = 1.51; p>0.2) nor in the mean item scores on the Borkovec and Nau credibility scale (t test, p values ranged from 0.38 to 0.87). Of the patients in the sham acupuncture group who had previous experience of acupuncture, none recorded receiving the sham intervention.
Conclusion: within the context of this pilot study, the sham acupuncture intervention was found to be a credible control for acupuncture. This supports its use in a planned, definitive, randomised controlled trial on a similar whiplash injured population.
Rapid response to: Methodological challenges in design and conduct of randomised controlled trials in acupuncture (2022)
Thanks Neil. I had a time trying to figure out what a sham needle was supposed to be, so thank you for the link. In my experience, the tubes were only used for Japanese needles, which are so thin they can bend before piercing the skin, so the tube prevents that.
I've had good results from acupuncture, both with and w/o electric stimulation. I suppose you could make the argument that 2 years of medical intervention with no progress could possibly kick in conveniently a day after moxibustion, but I don't buy it. Especially because I had the mox tx 3 months after giving up on drug interventions. I'm a big fan of science, but also of massage & acupressure. 🙂
Acupuncture is wonderful. I had been going years before CLL dx. But during chemo, I stopped all homeopathic remedies & just did acupuncture sessions. Helped quite a bit. But I don't know restrictions during daily oral meds. Speak to his hematologist.
I’m glad to see this post, I’ve been thinkinf of asking Dr. Lamanna about getting acupuncture for my painful arm. (Tendinitis and bursitis) I was sent to physical therapy to find out they couldn’t do much for me because of my cll. I’m doing exercises at home everyday to help heal this extremely painful arm.
I've just done a search for "acupuncture evidence based" which confirms my earlier reply in the early hours of my morning; studies reporting benefits are nearly always based on research coming out of China, or from pro acupuncture groups. Importantly, per this excerpt from the Science Based Medicine article on acupuncture, it's very important to recognise that;
3. Claims for efficacy are often based upon a bait-and-switch deception
The most common example of the “bait-and-switch” for acupuncture are studies that examined the effects on pain of electrical stimulation through acupuncture needles. This is not acupuncture – it is transcutaneous electrical stimulation (TENS), which is an accepted treatment for chronic pain, masquerading as acupuncture.
This is not a quibble. Science requires unambiguous definition of terms and concepts. If acupuncture is said to be something scientifically then it must have some specific and unique characteristics. In medicine that means it should have a specific mechanism of action – and it is that mechanism that we would call acupuncture. Electrical stimulation is no more acupuncture than if morphine were injected through a hollow acupuncture needle and then claimed that any resulting pain relief was due to “acupuncture.”
Further, during a typical acupuncture treatment there are many other incidental effects that may occur. The atmosphere is often relaxing, and practitioners typically will palpate the “acupuncture points” prior to inserting the needles, for example. Practitioners also provide their kind attention, which has a positive psychological therapeutic value. There are therefore many nonspecific subjective effects that could lead to clients feeling better, making the actual insertion of needles an unnecessary component.
I swear by acupuncture and go twice a week; from my immune system to pain, it is my go-to. I don't do the Guasha as I did before CLL. Highly Recommend acupuncture
I support you message. I have been taking Imbruvica (3 years and now Calquence (since spring 2001). My feet were numb and the oncologist recommended acupuncture over 2 years ago. I have an appointment every 3 or 4 weeks. I find it very worthwhile.
I’ve been doing acupuncture for years, and especially now that I am on calquence. I have had nothing but positive results. It helps “me” with fatigue, muscle pain, and a variety of other ailments. It’s not a cure, but it takes the edge off. I told my hematologist about it. As long as my platelets are normal, she was fine with it.
I’ve had massage therapy, which also helped a lot with the muscle pain.
I am not in treatment but I do use Acupuncture. I don't believe there is any danger of infection because each needle is sterile and used once. The needles are as fine as a hair. My husband performs Acupuncture and Dry needling on his patients. For me, I have him target the Spleen and joint pain. I believe I am still in WW because of this ancient technique. But this is just my personal experience.
Hi Oaktown A, I've been on Imbruvica since 2018. Two years ago I started acupuncture. I went for pain in my lower back. I could hardly walk. She has helped my overall being. I found it helps my fibromaylia. Not spelled right It's 5 in the morning. She is my angel. I see her every month. I definitely recommend it. Wishing your husband the best. Cindi
Several years ago my husband had severe back pain. He went to get an mri. They told him that he’s gonna need a hip replacement but that he was too young to get one. I think he was 50. He decided to get acupuncture and it took the pain away. (He doesn’t have cll) he hasn’t done the acupuncture in years now. He does get back pain when standing at a certain position and also when he pick’s up heavy stuff.
I also was told both my hips I have tears. The only way to fix is to have hip replacements. My orthopedic said before a replacement he would want to try stem cell rejuvenation. When that time would come I'd want to speak with my cll specialist. I feel totally so much better going every month for acupuncture. Best wishes Cindi
Hi, I’ve also had acupuncture whilst on Calquence. I’ve had the odd Thai combination massage too. Both have helped me to release tension and generally feel a bit lighter and freer in my body. As the above comments show, alternative treatments work for some and not others. I’m my experience you just have to try a few different things and see what resonates with you. Interestingly, even though I had bruises all over my legs in the first few months of treatment (and I could never recall banging my legs where they bruised) the deep Thai massage didn’t cause any additional bruises. Good luck. Oh, and the advice to drink plenty of water after massage/acupuncture is important - flush out those toxins!
I did it for a number of months. During treatment it put me in this dull relaxed state - on the table I didn't quite fall asleep, but I was close. I had a few times when the needles hit a nerve, and that was not pleasant... but I think it's worth a shot (I mean a pin). On a similar note, I really found learning the basics of reiki helped me tremendously!
Reiki is a complementary therapy relating to energy healing. Proponents say it works through the transfer of universal energy from the practitioner’s palms to the client.
Some controversy surrounds Reiki, as clinical research has not proven its effectiveness. However, many people who receive Reiki claim to experience positive outcomes.
I would strongly recommend anyone considering Reiki to read the section commencing;
Reiki’s healing power: What is the evidence?
Although Reiki is growing in popularity, there is little evidence that it provides any clinical benefit.
I would say dont waste your money on Acu, as it isn't effective for anything. Better to spend any money you have on wine, a holiday, presents for grandkids or perhaps a new laptop.
The wikipedia page on Acu (en.wikipedia.org/wiki/Acupu... is very thorough and well referenced, and the associated Talk page will show you how the medical fraudsters dislike wikipedia for sticking only to reliable sources.
I've had acupuncture on and off for years. It's really helped my hayfever, which had been getting worse and worse each year, to the point where I was needing inhaler, nose spray, eyedrops, and hayfever medication. After several sessions with acupuncture, my hayfever greatly diminished for several years and I no longer needed to dose up on those medications. Nowadays, whenever the hayfever starts to return, I go back to my acupuncturist.
Acupuncture has also helped my digestion and to get rid of a persistent cough earlier this year that antibiotics couldn't fully cure. My acupuncturist is quite traditional in checking my pulse in three places on my write and inspecting my tongue at the start of each session; he also uses small needles and not TENS.
In the past the NHS has offered it as a complementary medicine in some parts of the country (like Cambridge) and studied its effects. I don't know if they still do though.
I have been receiving acupuncture treatments on and off for about 5 years. I have CLL and am on Ibrutinib. While I don't know if it helps with CLL - tho my numbers continue to be good - I know I leave feeling great. "Peter" gives me a fabulous leg message after removing the needles, never causing bruises or bleeding, and for that alone I'd have these treatments. I -almost- skip out like I'm a 16 year old.
Thank you sheilamarie! You've touched on why, as OaktownA asked, is acupuncture "worth trying to improve quality of life/mental-physical wellbeing". Acupuncture and massage are best considered as complementary medicine - something to make you feel better and those positive feelings can have secondary benefits - perhaps encouraging us to be more physically active or undertake other activities that can improve our health.
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