Abandon LE precautions? Not me!
A discussion in the Bone Mets topic on Stage IV forum regarding lymphedema was veering away from the central focus of that board so I announced that it should be moved here. Basically, I shared my Zometa infusion protocol and got this response:
“There's no evidence that being at risk for or having lymphedema means you can't use that arm for blood draws, IVs, or blood pressure. Seriously. No evidence. The risk comes from injuries or infections, and the chances of a needle jab causing an infection are extremely tiny". This assertion may have been from Ferguson 2016.
Part of my answer to that included Dr. Judith Nudelman's statement “At-risk behaviors can vary from a careful manual blood pressure cuff placement or a highly inflated automatic cuff; from a careful phlebotomy or a lengthy tourniquet; or from a well-placed intravenous line or an extravasation of caustic material".
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My LE therapist said bacteria can enter through hangnails or extremely dry skin. I got cellulitis despite no obvious entry wound. I would never voluntarily raise my risk unless I had no other options. A needle jab is an invitation to bacteria. I get bruised on my good arm from most blood draws. Why would I risk that on my LE arm?
I wouldn't allow a BP reading either. I've had a compression sleeve that increased swelling because I had the wrist cuff at the wrong spot.
You're not wrong to be cautious.
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I had bouts of lymphedema after two separate dermatological shave biopsies (tiny) on that side---side of breast (when I still had it, after lumptectomy, but before mastectomy), and one of my upper right back quadrant. The first one caused truncal lymphedema, and the second one made my wrist swell up.
I will not allow anything to be done with that side. These were not large procedures, and did not get infected.
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I haven't had lymphedema. When I saw my MO in November for routine follow-up, and the nurse asked which arm, I asked if it mattered after more than three years. She said it matters FOREVER and it's not worth taking a chance. That's good enough for me.
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You don’t want it, trust me. And I have a mild case.
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I agree with you Serenity, I also have mild case and it is literally a pain. I don't do blood draws or IV or any blood pressure cuffs on that arm. However, I do some limited acupuncture with my knowledgeable acupuncturist (clean needles and alcohol swab) at affected wrist only which helps so much.
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Serenity - I have a mild case and when I've had to go to the ER occasionally, they always put a band around my wrist to prohibit blood draws and IV's etc. on that arm. What sort of medical place does this person who told you there's no evidence of harm go to anyway? Once, before I had a scan, the nurse told me that the scan people preferred the IV to go in my left arm (the lymphedema one) and I told him to just go ahead, because my situation is relatively mild. He was covering for another nurse and when she came back and saw the IV placed in my left arm she was mortified and asked me 1) if he had even asked about the placement, and 2) why did I ever consent? I've come to take this issue very seriously and most all of the medical people at the facility I go to do too. I agree with you.
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I don't have lymphedema (after an ALND with 32 nodes removed), but I had a lymphovenous bypass procedure at the time of mastectomy last August and I HOPE it will continue to work!! In the meantime, I follow most of the recommendations (no needles or BP), but since my affected side is my dominant hand (right), I still get minor cuts, scrapes, etc. just in everyday tasks. I also still enjoy a hot shower; one of life's pleasures.
I have recently read that the views on preventative measures are changing and found this article from PubMed... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC36525... Scroll down to Table 3 for their conclusions. Here's the summary of their findings which still seem sketchy...
To summarise the findings of this systematic review, there is limited evidence to support the recommendation that venipuncture should be avoided in patients with a history of lymph node surgery. Similarly, there is a paucity of evidence to support the preventative measures regarding limb constriction, elevation, heat/cold, and air travel/use of compression garments when flying. On the other hand, we found good scientific evidence (level 1 and 2) to support the recommendation of maintaining normal body weight/avoiding weight gain in patients who are at risk for developing lymphedema. Similarly, there is strong scientific support for participation in a supervised exercise regimen both in patients with lymphedema and in those at risk for developing lymphedema.
I believe each of us should continue to do what we think best for ourselves. It certainly does no harm to take precautions.
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LW - I hope the bypass continues to work for you.
I developed LE during chemo when I was underweight, but agree that it's important to maintain a good weight. I have flown several times afterwards. Short flights made no difference, but my LE increased slightly after a trip to Europe: It could have been the flights or walking around for 2 weeks in a heat wave or all the tiramisu. I would go again for further study. I avoid jacuzzis due to risk of bacteria, but I take baths at home after scrupulously cleaning my tub. I find Tai Chi/Qi Gong movements great for getting the lymphatic fluids moving around.
The precautions I take are worth it to me especially after suffering from cellulitis. I minimize the risks I take based on benefits. I don't want to sit in a jacuzzi wondering if I'll get cellulitis, but I love a bath so I scrub it clean first. I won't let anyone touch my LE arm because my good arm can heal easily from all of it. I even had the vaccines in my thigh, so it's not hard or unheard of to take precautions. Of all the things we do, minimizing LE risk takes the least work.
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Thanks, Serenity. I am hopeful but honestly, with 32 nodes removed and radiation I feel like I'm doomed and on borrowed time as far as LE is concerned.
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LW - I think the bypass surgery is marvelous. Take some normal precautions (sticks & pricks & pressure - and sleeves for altitude), but I hope you can go on with your life.
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Hey -2! I agree, the bypass surgery is a giant step forward but there are still so many unknowns about the efficacy. My surgeon was unable to speculate about how rads would affect the bypass. I hold out hope that at the very least the new connections will keep any LE to a minimum but that remains to be seen.
As far as precautions, it's hard for me to get in the mindset. I can remember "no needles/no BP", but I'm still not good at taking daily safeguards.
Hope things are going well with you!
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LW - I agree. With only mild LE & no active flares, it's hard to remember daily precautions.
My LEPT was tied to MDA - Katy, and was promoted so she longer sees patients. It's been over 2 years since I've had an appointment. I've been looking for someone who is trained and they're "scarcer than hen's teeth." I just want someone on board that I can check in with once a year & have on board in case of an emergency.
Last week I finally saw a new LEPT for evaluation and will have my first treatment/session this afternoon. This is more for further education & assessment and not to address any immediate issue. Their training concerns me some but I'm willing to give it a try. (supposedly American Academy of Lymphatic Studies came to them for 2 weeks training)
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-2, there are several LANA LE PTs in MDA's Rehab Services Dept in the medical center. I have seen 2 of them, plus one that is not LANA certified (for myofascial release massage after my surgery.) Honestly, I haven't been super impressed with any of them, though they are nice enough.
I saw my PCP today for my annual checkup and asked her about lymphedema therapists in my area of town (east side), and she wrote a referral and said they'd call me. (This is at Houston Methodist.) When they call I'm going to ask lots of questions before I schedule an appointment. If they are located in the medical center I'll just stick with MDA.
Hope your visit goes well today.
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“I also still enjoy a hot shower; one of life's pleasures.“
I had very mild LE, but I noticed when I wash a lot of dishes my arm starts to ache. I wonder if it was from the hot water! I’m going pay attention to that! Thanks for the info
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Waves - I always always wear protective gloves to wash dishes. And for most household cleaning as well.
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Hi everyone,
I had ALND 15 days ago, no bypass since in Germany I couldn't find anyone do it, they insisted there was no evidence that it worked but it as well might be due to their lack of interdisciplinary coordination (PS + breast surgeon) that they don't offer it.
Here the golden standard seems to be daily massaging to change the lymph fluid stream. I am taught how to massage from the back of my hand towards my shoulder, from the palm in the direction of shoulder by going inside the arm until the elbows and changing sides to the outside of my arm from there. Then I massage from one shoulder to the other and I finish this by taking deep belly breaths while pressing with both hands right above my belly button, which, I was explained, is lymph headquarters. I had two sessions with physical therapist who explained me this and told me to do it once to three times a day, which I am religiously doing since then.
I am also given a paper with the list of things I should avoid, it terrified me since I am terrible at remembering such stuff, no hot, no wounds etc. etc. I don't know how I will now shave under my arm, any ideas on that? *sigh*
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Sarah - Honestly as time goes on it gets easier. I take hot showers, I gave up the HotTub. You'll find your way. if my underarm hair had not disappeared permanently, my plan was to get an electric razor. I know, they don't give as close a shave, but that was one risk I thought I could manage.
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Sarah_78--you're wise to learn the MLD massage and other precautions soon after surgery. Hopefully you'll be one of the lucky ones and never get LE. There are several videos on Youtube for the Manual Lymph Drainage techniques (each medical facility seems to vary technique slightly). I try to do MLD daily but I still feel that it's hard to get the right "touch" and slow down the stroke.
-2--how did the appointment with the new LEPT go?
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LW - Evaluation was very thorough. Yesterday was the first actual treatment. I've checked their training and I think it will be fine. That said, I do feel fairly competent to manage it myself. It's breast & truncal only (so far 7 years). I just need to check in with a trained person once every 6 mos to a year so I can find out what's new in the field, get re-measured and have someone critique my practice so I stay up to speed. Also someone to order the sleeves & gauntlets I use when I fly... ( hmmm - oh... that thing we used to do in silver tubes before Covid).
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I have lymphedema in my left breast and arm - it was mild.
Rah2464 --I had acupuncture in my left breast on a scar line from a very good, knowledgeable therapist. I had been having weekly treatments, which were great, but after my last I had a bruise. Two days later I had cellulitis. I was on a round of clindamyacin for ten days. Started working mostly, but as soon as I stopped taking it, the cellulitis came back. I have been through the wringer! I ended up getting an Ultrasound looking for pockets of infection - luckily no pocket. Had a punch biopsy by a dermatologist - looking for inflammatory breast cancer, that hasn't come back yet. Then went to Infectious Disease and discovered dermatologist didn't do a culture along with the punch biopsy! I am on Keflex now for 14 days. Dermatologist said I could go back for another biopsy and have it cultured! I don't think after 14 days of Keflex any bacteria will be lurking!
I have no idea if the acupuncture was the cause of the cellulitis, but I have cancelled my appointments for the next two months. Ugh!
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mfrube - Sorry to hear about all your troubles. Was your acupuncturist also trained as a lymphadema therapist?
I am a fan of accupuncture - just not on my compromised arms, chest & trunk. No sticks - no pricks. On my feet for the neuropathy? Yup - I'm looking for someone I can trust to try that.
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Thanks. Minus 2 --my acupuncturist is trained as a lymphedema therapist, which really makes me question if the acupuncture had anything to do with the cellulitis. I will go back, but as you say, not on my arms or trunk any more!
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mfrube so sorry to hear about the bout with cellulitis that is frustrating. I still do acupuncture on my impacted side but it is only at wrist. She is also careful to use new, cleaned needles and wipes me down with alcohol before she sticks the needle in. If I am particularly achy and active, I have her leave off my affected side completely. But I hear you I will keep a very close eye on things. She has never needled my truncal area.
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Back to the original post: I would very much like to see studies proving that needle punctures and blood pressure readings cause lymphedema (vs making existing lymphedema worse). I'm very curious about it.
As for me, I have allowed needles and blood pressure readings since finishing my surgeries. My only other choice was force these things to be done in my foot/leg, and that's not easy to do. Blood pressure taken in my leg was never accurate, and most health care places aren't staffed with people who know how to draw blood from a foot. I've also flown internationally, and lift weights recreationally. I'm careful about my weight, as that's a risk factor that I've found documentation for. No problems so far.
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-2-- I'm glad the appointment went well with the new PT.
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LW - New LEPT - she's managed to get a good start on breaking up the cording which I had been living with & ignoring for a long time. I'd recommend her but I know you are SE and this is NW.
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SummerAngel: There is a recent poster presentation that discusses this at: ons.confex.com/ons/2021/meetingapp.cgi/Paper/9553 , and an interesting decision tree in the poster that is linked off the page. This situation presupposes that we have good information on our individual lymphedema status, which I don't think is the case (I know I'm not sure). I do hope for more definitive conclusions as research continues.
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-2--Glad you found a good one. What facility is she at?
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LW - Methodist Willowbrook.
RollWithIt - I went back and read your first post on the other LE site. I applaud what you are doing in the way of prevention, but it sounds like you have never met with a trained/certified LEPT. I would suggest you go for at least for an evaluation & measurements with a certified person. That way you'll have base line numbers to refer back to in the future.
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Hi MinusTwo. I did see an LEPT and my arm was measured for future reference. However, it seems more likely that I have breast and truncal LE (if anything). At the time I was hoping for exercises, guidance, etc., about LE from the PT, who has a great rep in our area. I did get some education and good information on how to do the movement of skin (versus muscle massage), but the main message I got was to be careful, start anything slow and back off if things felt wonky. That too is good advice, but I'm not sure what is a "healing wonky" feeling versus a "LE wonky" feeling. I have my first DEXA after the start of AI this March, along with a 6mo MRI (asked for by me-dense breasts), after which I'll set up an appt to get re-evaluated by the LE PT. I know a lot more now then I did a year ago and perhaps can get better clarity. Thanks for the suggestions!
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