Cellulitis after almost five years :(
I have had mild lymphedema since about a year after my mastectomy and removal of lymph nodes on the affected side in May 2007. This past Sunday I woke up with a deep ache in my arm and thought I'd overdone it doing some organizing in our bedroom. There was no redness but my arm seemed a little swollen so I put on a compression sleeve and took some Tylenol. I had a busy day and didn't think much more about it although the arm continued to ache and I felt sort or tired and spaced out. Around 6pm right after arriving at my daughter's house for the night (she's an hour away and I take care of my grandchildren. Monday and Tuesday) I started to feel cold. Within an hour I had shaking chills and a fever. At this point I thought maybe I had the flu, but then thought I ought to check my arm. I took off the sleeve and YIKES! it was totally red , hot, and swollen from my wrist to about my elbow. I got right to the ER and proceeded to wait 3 hours before they started IV antibiotics- despite my attempts to educate them that they might need to act a little more quickly because this had been going on all day without my realizing it. It spread above my elbow while I was waiting.
It took about 48 hours of being on antibiotics before I was wanting to be up and about. I ended up staying at my daughter's until last evening and being taken care of myself instead of caring for the kids.
I'm feeling much better today although the arm still aches.
I have no idea what trigger the infection. I had no visible cuts, scratches, insect bites, etc. I have had minor injuries to the arm before and did not develop any infection.
Lessons learned:
Never leave home without the emergency antibiotics my oncologist prescribed in case of just such an event.
Never dismiss increased or unusual pain in the affected arm.
Know that even with very mild lymphedema you can develop cellulitis and that it can spread FAST.
Comments
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Wow - I am sorry you had to experience this. I also have very mild lymphedema and I will definitely remember this just in case.
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paige-allyson - Glad that you were able to get things under control and are starting to feel better. Thank you for sharing this experience - I was not aware of cellulitis - always learning something new here.
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Hi; what kind of antibiotic did you have for just in case? I have Keflex, but I'm starting to realize that it may not be strong enough, maybe because I was given it for so many infections during chemo and post chemo Herceptin. the last course was for an ingorwn hair bacterial infection and it took a lot longer and I had a fair amount of inflammation before it kicked in.
I am terrifed of cellulitis. I have very mild lymphedema but I am totally on guard at all times. I'm glad you got to the ER and got help.
Cathy
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Paige, I'm so glad you're better. It is a reminder, that we're all at risk. Nordy had a thread when she got cellulitis, I'll try and bump it.
Cathy: most people do use keflex as the emergency med, unless they're allergic, but other meds--augmentin, bactrim, a quinolone can all be used for cellulitis.
This is a perfect example of the fact that it's not just swelling....
Kira
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Paige, I am so sorry you had to deal with crummy cellulitis. I hate it. It makes you feel soooo bad.
Years ago, before I had breast cancer, I got cellulitis (in my LE arm, ha ha. What irony.
) from a scratch while gardening. My whole arm was red and streaky all the way up to my arm pit. I called my obgyn because back then, I didn't have an army of doctors (insert another eye roll. ) to monitor my every waking moment. He had me come in immediately and fussed at me because I had wanted to go out of town and go see him in a couple of days. I had no idea how serious it was until then! And since getting le, I've gotten it once more. But it always amazes me how some medical folks act like it's no big deal. I will never forget that dr. (older, fantastic, funny man) telling me how serious it was and that I should never disregard it.
The worst part of cellulitis (just my opinion) is how depressed it makes me. I feel bad physically, and it's like I get PMS at the same time. It seriously sucks.
Feel better, Paige! Have some egg nog, watch some mindless entertainment on the tv, and eat some brownies.
Hey, maybe cellulitis ain't so bad after all....
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I had the exact same thing happen just over a year ago and it had been almost 9 years since my surgery! Couldn't find a cause - no cuts or other injuries. I also had minor cuts, bug bites, etc. to that arm in the prior nine years. This was my first occurance (hopefully my last!) of cellulitis ever. I couldn't believe how quickly it set in but was lucky to catch it early enough that oral antibiotics took care of it.
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Thank you for all the get well wishes. I really wanted to make other women with lymphedema, especially mild lymphedema, aware of the risk. This was a scary episode for me and quite the learning experience.
Cbm- I was given dicloxicillin (sp?) to havemon hand to take at the first sign of infection. Obviously one needs to carry it wherever one goes and to recognize the initial signs of infection if this is going to work
I am taking Clindamycin 4 times a day for 10 days, along with tons of probiotic foods plus a capsule supplement. I think that's what they gave me IV too, but I'm not sure. I was a little out of it and they didn't include that info iin my discharge paperwork.
I actually think that the first sign of this may have been feeling sort of weird and unusually irritable Saturday night. Definitely the infection had some weird mental effects.
I'm at work today ( self employed, sitting ). I'm MUCH better but still pretty wiped, planning to nap for a couple of hours before my next client comes.
Apparently once you've had cellulitis you're more likely to have a subsequent episode so I guess I need to be vigilant and prepared. Sigh...the breast cancer fun and games continue...
Be well sisters!! -
Maybe you all can help me... I got a little 1/4 inch knife nick on my left index finger while cleaning the kitchen a couple of days ago, and I've been watching that arm closely ever since. It feels a little sluggish and the left hand feels a little... umm, maybe colder and stiffer, hard to describe... than the right hand, but it doesn't *look* any different. I haven't gone to the doctor or anything.
So... does cellulitis *always* have that red/streaky look described in some of your posts? Or can you have it with no outward signs?
I don't know much about this... my first and last flare with that arm was four years ago, triggered by a reconstruction surgery. That time, I wore my sleeve for three or four days and kept the arm quiet and elevated, and the symptoms eased away.
Should I put my sleeve on now?
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Lulubee,
Coming from what my last few days have been like I'd err on the side of caution and get it checked out.
I have read that it is not a good idea to wear a sleeve if you have cellulitis or are concerned that you do, because it can hasten the spread. (Others please chime in here). I would at least have seen the problem sooner if I hadn't put the sleeve on. -
Okay, so no sleeve... that's good to know. I am seeing my neuro-therapist this afternoon and will see what she thinks. I hope I won't need antibiotics for this as I just had a huge dose a couple of months ago prior to dental work.
paige-allyson, wonder what on earth triggered your flare if you had no broken skin? Is that odd?
Thanks so much to both you and Sherri-G for sharing your experiences. You may have saved me a big bunch of trouble. I'll let you know what the NT says.
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Lulubee: you should have it checked out, but it doesn't sound like classic cellulitis, but not all cellulitis infections present as red, warm, rash, fever, etc.
I'm going to put in the stepupspeakout link for cellulitis:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm#CELLULITIS_(INFECTION)
CELLULITIS (INFECTION)
If you have been treated for breast cancer, your hand, arm, underarm, breast/chest, and back on the affected side are at risk for developing lymphedema. Any area at risk for lymphedema is also at risk for serious and potentially life-threatening infection.
That's why any symptom of infection needs to be treated as an emergency.
Get medical attention immediately -
DO NOT WAIT!
The most common form of lymphedema-related infection is cellulitis. Here are some signs of cellulitis to keep in mind:
Warmth or tenderness when you touch your skin
Fever
Chills or general achiness
Pain
Itching
New or sudden swelling
Solid or splotchy areas of redness, or streaky red lines
Rash
Get medical attention immediately -
DO NOT WAIT!
Infection may follow any break in the skin of the affected area, even breaks that seem trivial or unlikely, such as:
insect bites
hang nails
paper cuts
pin pricks
minor burns
scratches
blood tests, IVs, injections, draining of seromas
But infections may also occur even when you can't identify any specific cause.
Get medical attention immediately -
DO NOT WAIT!
Lymph fluid may stagnate in at-risk tissues even before a diagnosis of lymphedema is made. It is warm and protein-rich - a virtual feast for infection-causing bacteria. Once infection starts, it can spread rapidly throughout the affected area and beyond, threatening systemic involvement.
Early treatment of any infection with antibiotics will stop it from spreading, hasten your recovery, and protect the lymph system from further damage. If oral antibiotics are not quickly effective, your doctor may admit you to the hospital for a course of IV antibiotics.
Get medical attention immediately -
DO NOT WAIT!
Even if you recognize the symptoms of infection and understand the reasons for quick action, it can still be easy to ignore an impending problem or deny its seriousness. Here are some of the excuses you may be tempted to use to delay seeking medical help:
This can't be happening to me - I've been taking good care of my lymphedema.
If I call my doctor and tell him I think I have an infection from a paper cut, he's going to think I'm a nut/wimp/hypochondriac.
I'm sick of doctors and hospitals!
It's after hours and I'll have to go to the emergency room - who wants to wait five hours to be seen?!
Nobody in the emergency room will know what to do about lymphedema anyway.
No point panicking - it's more sensible to watch and wait.
I'll just try some Tylenol first and call the doctor in the morning.
Who ever heard of a hangnail causing an infection anyway!
Get medical attention immediately -
DO NOT WAIT!
Here are some tips for dealing positively with the danger of cellulitis infection:
Prevent infection by following safe practices, including protecting yourself from cuts, pet scratches, insect bites, burns (including sunburn) and dry skin.
Carry antiseptic wipes, antibiotic ointment and band aids with you, and use them promptly for any skin break.
Talk to your doctor about keeping a supply of antibiotics on hand. Discuss guidelines for using them when a doctor is not available or an emergency-room wait may be too long.
If you suspect that an infection is developing, remove all compression garments or bandages and do not perform any self-massage. Compression and massage promote lymph flow and can contribute to the spread of the infection.
If you notice reddened areas on your skin, outline them with a permanent marker so you and your doctor can recognize progression or improvement over time.
At the emergency room or critical care, speak up promptly about your lymphedema or risk of lymphedema, and be prepared to remind the staff about your risk of cellulitis.
Be prepared for quick action. Have a small bag already packed to take you with you to the emergency room, with everything you'll need in case you're admitted to the hospital, including:
an up-dated medical history, including diagnoses, surgeries, hospitalizations (with dates), and current medications and supplements (with dosages)
up-to-date articles about cellulitis (Printer Friendly Version here) to share with your health-care providers
the names and phone numbers of all your doctors and your lymphedema therapist (and friends too, of course)
a notebook and pen
any LE alert bracelets or arm bands you might have
a bathrobe and comfortable non-slip slippers
toothbrush, toothpaste, comb, brush, shampoo, and whatever other daily care items will make you comfortable
a good book or two or a crossword puzzle book and a sharpened pencil
and a treat - a few packets of cocoa mix to add to hot water, for instance
Follow your doctor's instructions for when to resume compression bandaging and self-massage for lymphedema. Usually that will be 24 hours after the start of antibiotic therapy if the infection is clearing and there is no pain. If you are allowed to resume massage before all redness is gone, avoid massaging over any reddened area. The infection will likely leave you with a lot of swelling. It may be helpful to make an appointment with your lymphedema therapist for a consultation or extra treatment as soon as the infection is under control.
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Lulubee,
I think it's pretty common from what I've read (as in Kira's post above). I was pretty surprised as I've had cuts etc. without incident. I'll probably never know, other than to know it can happen and know the warning signs.
Kira- thank you for all the info you just posted. It's good to know that I should be able to wear the sleeve with the infection now under control. I'm flying to Seattle on Tuesday and definitely will be wearing it.
Also, I did have delayed reconstruction surgery at the end of October. I don't know if that may have made me more vulnerable. I had no complications like increased swelling or infection. I'm new to this more extreme problem of cellulitis so there are likely things I've yet to learn.
Hi Sherri- sorry to hear you've had this too. -
Kira, thanks so much for that great info! I am printing it out to stash in my "urgent health file" for times when I might need it fast.
Saw the neuro-therapist. Good news is she doesn't think there's anything cellulitis-y happening here, as she said there was no warmth nor pitting nor any other outward sign. What she DID find... and what I already suspected... is that I have put off seeing her for too long! I haven't had a treatment since July, and I've been under major stress since then to put it mildly. So... my reconstructed lat muscles have were curled on the edges (which makes for really bad circulation) and I had a ginormous muscle knot where the lat now passes under my left armpit. DANG that HURT when she worked out all those adhesions!!! She said I was "stuck" all over... said she got fluids moving but then she could feel them "tiding back" whereas normally she can get them moving in the right direction and they stay that way. I took two Advil and went to bed with a big mug of hot tea afterward. She told me to drink lots of lemon water and do my stretches. I'll see her again next week... not putting it off for four months like I did this last time!
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Lulubee- so glad the news was good on the cellulitis front.
I'm feeling better but got another cellulitis learning today- 2 maybe.
1) you can't get tissue expanders filled until you've completed antibiotic treatment, even if the infection seems under control. This is because there's a small but real chance of the needle puncture for the fill introducing bacteria lurking in the body from the infection into the capsule created by the expander. My PS says it's unlikely the this would happen but that it's such a bad complication it's not worth the risk.
I'm fine with erring on the side of caution- anything to not be sick and/or have my reconstruction ruined.
2) The PS also said that knowing I had expanders in they should have prioritized me in the ED triage process- I think maybe because the expander area is more prone to infection because there's a foreign material there? Something like that.
No fills for me until 12/22. Oh well. -
New to this game: what is an indicator that you NEED the pressure sleeve? (I know you're supposed to wear one on long airplane flights). AND is hanging your purse on that arm bad? (is that a stupid question?)
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Lolabrown: there are no stupid questions when it comes to avoiding LE:
You should avoid a heavy purse on the at risk arm, as an important area for lymph flow is over the shoulder.
RE: who should wear a sleeve and hand protection--gauntlet/glove--it's controversial if you're just at risk--here's the NLN position paper on it. Many LE therapists adovacate a low compression sleeve--15-20mm with a standard 20--30mm gauntlet.
Here's the link to the NLN position papers:
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
Here's a link to a wonderful explanation of why people at risk should wear hand protection with a sleeve--the LymphaDiva group asked Andrea Cheville of Mayo Clinic to write about it, and it's a great resource:
http://lymphedivas.com/lymphedema/gauntletandsleeve/
Ask any questions you have, really.
Kira
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Kira- I second the "there are no stupid questions when it comes to lymphedema."
Lymphedivas is a great resource- such a relief after dealing with the traditional depressing compression garment world. I've gotten tons of complements on my sleeves. People want to know where they can get one and/or think I have a sleeve tattoo. -
Kira & others-I've visited the Lymphedivas website & considered buying sleeves for my at risk arms. Since I measured at the small end of small on all measurements, I'd be an easy fit? I have no signs of LE, so this would be purely preventative. My docs just aren't onboard with prevention.
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Coralleliz, it's not clear that you need a garment for prevention unless you are flying or have symptoms--do you have an idea when and how you would use the sleeve/gauntlet? With no signs of LE, it's not clear that you need them, and there is concern that poorly fitting compression can cause problems.
So, I'm not sure you'd need one, other than hypothethically when flying.
We've dealt with the Levin family at LymphaDivas and they're lovely. The company was started by their daughter, Rachel, who had BRCA+ disease, and they've continued it as a tribute to her. Binney saw them posting a picture of a woman weight lifting without hand protection, and she wrote to them, and they consulted with Andrea Cheville MD of Mayo Clinic--who is their medical advisor--and wrote this great article. We have run into them at conferences and they are just wonderful. You can call and talk to them.
But, if the sleeve doesn't seem like a good fit, and it's not clear you need a sleeve, as gorgeous as they are, they may not be something you need.
Do you have a LE PT to discuss your situation with?
Kira
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I feel your pain. Each time my bouts of cellulitus started was increased pain in my LE arm. I did have an open area on my mastectomy scar which was where I was getting the infection. I, too, know now not to wear the sleeve or do the lymphe drainage when it shows any signs of infections.
I had been having mild symptoms for a couple of months but no one made the suggestion that it could be cellulitis. One morning I woke up with my side, tummy & back; beat red & I was runnin a temp. I spent 3 days in the hospital getting IV antibiotics.
I then had several more bouts of cellulitis with the last one going down into my arm. Oh, the pain!
So for me I started a regiment of oral antibiotics & topical antibiotics in trying to ward off the infection.
I also began the process of getting reconstruction surgery. To make a really long story short, I had a bi-lateral Stage I DIEP on Aug 15 with no more signs of infection. On Monday I will have Stage II, reducing the non-bc side to match the bc side. After a long 4 year journey, looking forward to this being done! NJ
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Norma, good luck with your second surgery, and I'm so glad you're doing so much better.
Kira
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Norma June, we'll be thinking of you on Monday. Smooth sailing!
Let us know how it goes.Hugs,
Binney -
I am so glad this thread was started. I experienced cellulitis over the summer with no apparent breaks in the skin, bites, etc., but didn't realize how very dangerous it was until I figured that the fever, chills and swelling were related and it was no coincidence that it was on my mastectomy side. Never ignore those symptoms. Very scary! To think I was convinced I was coming down with the flu in July!
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I got cellulitus on May 2 of this year. I had no visible cuts, pricks, bites nothing. I ended up in the ER and had IV. My arm was so red but it never passed my shoulder. I do have LE in my right arm (mild) I ended up in the hospital for 5 days to get it under cobtrol before I came home. It was my wedding anniversary that day (unlucky 13
) as I call it know. I just started to feel tired, went to take a nap and got the chills like I was in freezing water. I look at my right forearm and I saw a red patch start to develop..I got my hubby and showed him. I called my ONC DR. I have his cell number in my phone. He was trying to get me and antibiotic on a sunday evening and everything was closed. I got to an med express to see if i could get it from them and they took one look at at my arm and said get to the ER. I did meet the best DR there and now she has learned alot about cellutlitus and I went to see her to have a couple moles removed and she gave me antbiotics to take prior to procedure and 4 days after. I am always aware of what happens to my arm. It was one of the scariest things to happen to me..really it scared the shit out of me because I had no idea about it.
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Vettegal, it's just terrible that you had no clue that could happen.
Patient education with LE is practically non-existent, so it's great that you're educating the doctors! (What's wrong with this picture?!)Thanks for sharing your experience -- definitely a cautionary tale!
Binney -
All these scary stories make me wonder about something. I have a skin tag smack in the middle of my LE armpit; I get very mild swelling of a small area on the underside of that arm, plus some trunkal swelling on the torso just under that armpit.
My question is: Should I have the tag removed, on the logic that it's at risk when shaving; or would removing the tag surgically invite more risk of greater LE incidence and/or cellulitis? For the record, I cannot recall ever nicking the skin flap while shaving, but I certainly cannot rule it out from ever happening in the future. I use only an electric razor to shave armpits now, but still I suppose it could catch the skin tag and allow bacterial entry into the armpit. Thoughts from those of you who have dealt with cellulitis? Thanks-- Carol 57
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Carol, toss up!
As long as you're aware of the possibilities, extra care when shaving should help. If you nick it, be quick with cleaning and applying antibiotic, and keep a sharp eye on it.Nothing's simple, is it?!
Hugs,
Binney -
Binney, it's enough to make a woman crazy! By the way, do you have a topical antiobiotic of choice that you carry around with you? And does anyone worry about applying antiperspirant directly after shaving, from a cellulitis risk perspective? (i.e. is it better to let the unavoidable skin abrasion heal for a day before adding potential insult to injury, as I hardly think any product is sterile?). It seems very hard to draw the line between precaution and getting carried away in these matters. Carol
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Binney posted something I should give to my drs. I had 2 moles removed on my LE arm and I gave a copy to my dr. She is now educated on this and I did this back in Oct and I had no problems!! When and If I get another cellulitus attack I have her phone number programmed in my phone to get her assistant and they can check me right into the hospital and by pass the ER. I was blessed to find her the first time I had it.
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Carol, when I had a skin tag years ago, my doctor tied a tight knot around the base and it basically dried up, turned black (looked like a little raisin), and fell off. No cutting was involved to remove it. I guess the tight knot cut off blood circulation.
Cellulitis sounds so scary--thanks to all who shared their stories. I told my daughter to never let me minimize or brush symptoms aside and make sure I get to ER if anything's going on--know myself too well..."wait and see" or "it's just..."
Garnet
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