What, me? Cellulitis strikes again.
I woke up last night hurting all over, was pretty sure I have the flu. Maybe I do. But just to complicate things, as I was lying in bed hoping Tamiflu works and I can get back to my job soon, I noticed a pink blush on my upper arm. It started in an area that's largely numb. I didn't believe it at first, slept a while, woke up and it was larger. Bless my MO office. I couldn't get in to my PCP for a couple days, and didn't want to go to the ER. MO's office saw me right away, and got me started on antibiotics. By the time I was there, it was also on my chest and a little of my back. I always thought it would hurt more, but I'm totally numb where it's the worst so it's just been odd.
My temp is down now because I took Tylenol and ibuprofen. Hope I sleep tonight.
I think it's from cutting my middle finger with a knife a few days ago. It had seemed healed, then yesterday I noticed it had opened up again.
I really, really didn't seriously think cellulitis was in my cards. I guess I assumed that with my lymphedema generally very well-controlled, I didn't have that much of a stagnant pool. This is a wake-up.
Comments
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Ugh Outfield:( I'm really scared of cellulitis, sorry you are dealing with it.
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Aw, Outfield, I'm so sorry to hear this!
Glad your MO was on the ball, though. Stay REALLY well hydrated, elevate that arm as much as you can, and I sure hope you get plenty of rest tonight. Please keep us posted!
Really gentle hugs,
Binney -
Outfield. Oh dang, not the cellultis beast. I wish for no one else to get it this year! And next year, and next year and next year.Big hugs for you!
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Outfield, I got cellulitis at the end of my CLT course! Just came on out of no where: a red patch on my biceps area. And it was sobering, and scary and made me realize that we're all at risk.
I think mine was because of shaving my axilla and having a bunch of people work on me, with not great hygiene.
There have been a number of women who have posted that they've blossomed with cellulitis in the face of a viral syndrome/sinusitis/pneumonia, and this flu is H3N2 and I saw it give someone pneumonia right off the bat. And it's rampant--the earliest season since 2003.
To get cellulitis is terrifying and causes a sense of profound vulnerability, but you caught it, and hopefully it's subsiding.
Feel better!
Kira
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Thanks for the tips. I feel really weird with no compression, and it's hard to get comfortable in bed with an IV in my other forearm (we're doing this as equivalent to an inpatient course of treatment, except at my MO clinic so I'm not sleeping there) so I've been bad about consistently keeping it elevated. But I'm trying.
It is amazing how fast this spread. It's basically a red map of all the areas on my body that would be expected to have compromised lymphatic drainage from the ALND, including spots where I haven't necessarily noticed lymphedema before. Luckily, the only place I can feel it is on my back - my upper arm and left chest are mostly numb. It's weird that it spared my forearm, which is my puffiest place.
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Outfield, RE: compression and cellulitis, the only "medical" reference I could find was the international best practices guideline, and it actually said to resume bandaging at low levels, avoid MLD.
Let me see if I can find the post and copy it.
How sucky to have it spread to the whole quadrant.
I did home IV with my dh, and pushed the med with an epi pen on the table....
Found the reference:
Found it, it's from the International Best Practices Guideline--written about 6 years ago, invaluable reference, there's a link on the stepupspeakout home page--right hand side: www.stepup-speakout.org/
Well, I searched pubmed, and could not find a single article that said that LE should not be treated during episodes of cellulitis. A google search produced references, but none were studies.
So, it's clinical practice, but it's not supported by scientific evidence.
And the articles did show the lymphatic damage caused by cellulitis.
However, I looked it up in the International Best Practices Guideline and found:
Commence antibiotics as soon as possible (Table 4), taking into account swab results and bacterial sensitivities when appropriate
During bed rest, elevate the limb, administer appropriate analgesia (eg paracetamol or NSAID), and increase fluid intake
Avoid SLD (self MLD) and MLD (by therapist)
If tolerated, continue compression at a reduced level or switch from compression garments to reduced pressure MLLB (multilayered bandaging)
Avoid long periods without compression Recommence usual compression and levels of activity once pain and inflammation are sufficiently reduced for the patient to tolerate
Educate patient/carer - symptoms, when to seek medical attention, risk factors, antibiotics 'in case', prophylaxis if indicated
Another page:
Contraindications to MLD and SLD
General contraindications
■ Acutecellulitis/erysipelasSo, this is the best scientific advice/evidence we seem to have: avoid MLD in the acute phase, but resume light compression ASAP, and MLD can be resumed when the acute phase of infection is over.
Kira
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Thank you Kira. I wonder if my Tribute without the over-cover layers would be OK. I'm sure I'd tolerate, but that's largely because my upper arm, even where not numb, doesn't have normal sensation.
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Outfield, if you know how to wrap, it's easier to do that because you can control the compression and go gently with it. Tribute can be tight or looser depending on how long it's been since it was washed, and since there's some swelling, it may be especially tight now. Just a thought,
Binney -
Joining the cellulitis club this week for the first time. Noticed Tuesday that I was achy all over, yesterday a red patch appeared on my arm. Went to my lymphedema therapist and she drew the outline and said it if left the outline to call the doc for antibiotics. It stayed fine until this afternoon then suddenly started spreading. Onc called in antibiotic. Hope it works fast! This is crazy! Just a teensy little cut on my finger from sewing and a little bit of a sinus headache. No fever thank goodness but it is warm to the touch.
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Outfield, I think you can gently try the Tribute, and pull it off periodically to check how it's doing. If you don't know how to wrap, something for the to do list in the future....Wrapping can be adjusted and is less "aggressive" than chipped foam, in the Tribute.
Lori--glad you're on antibiotics, sorry this happened. Advice for the future, treat early--no waiting. Cellulitis can be very dangerous, and with LE, it can spread fast.
Both of you: heal up and let us know how you're doing.
It really stinks, but it will get better.
Kira
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I'm so sorry for you ladies who are going thru this and hope you are better quickly. I have stand-by keflex here and did not realize and IV was necessary.
I do not believe I have cellulitis , however, almost daily I will see a red spot somewhere on my skin, put anti B ointment on it and later it will be faded and later still, totally gone. NO other symptoms.
I never noticed this before LE.
>?????
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Still feeling lousy. Two rouns of iv antibiotics and the celllulitis is acting as if somebody blew on it to make it go away. "OOoooo, stop that you silly, it tickles!" But it hasn't kept expanding. Interestingly the borders are generally the borders of the areas that drain through the axilla, except my puffy little spared forearm. Tired of feeling sick. Gave away tickets I had for a concert tonight.
There will ALWAYS be antibiotics on my person from now on.
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Redness seems to have stopped spreading after 3 doses of Keflex. It is also looking a little lighter pink instead of angry red. Just planning on sitting at home resting it today. Still no fever but I rarely run fevers even when really sick. I am going to get a standing order for antibiotics from now on!
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New antibiotics yesterday, also the relief of finding out that my oncology clinic has, during the time since I finished chemo there, begun opening the infusion room for a few hours on Saturdays and Sundays for situations just like this. They said they're doing everyhing they can to keep me out of the hospital, and given how much this has already uspet my daughter (now 5-1/2) I'm really, really glad of that. She has pulled out all the "mama has cancer" books and is wanting them read to her, with reminders that my sickness is not cancer. This morning my swelling is down a little, and the redness is receding in several places. It's not a miracle, but at least the infection isn't sitting there as if saying, "You're what, trying to kill me? Are you sure? HaHaHaHaHa"
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Oh Outfield, glad for any improvement, and the out patient option. It makes so much sense that your daughter can't stand to see you sick. I really hope she sees her mom getting better every day.
What a stubborn infection! It sounds like you're gaining on it now.
Really scary that a cellulitis could be so virulent, but they can be. I heard a lecture from Anna Towers who heads up the Canadian LE association, and there's little coverage for primary LE in Canada, and she talked about the mortality from cellulitis in these--primarily leg LE--patients, and said "This shouldn't be happening in a civilized country." No it shouldn't.
There's a photo from NEJM that I've used in lectures, and the text says the woman doesn't have LE: hah!
I'm having a hard time getting it into the post
I don't know if the link works: http://www.nejm.org/doi/full/10.1056/NEJMicm065836
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Duh, NEJM, do you not notice what that pattern is? Hers looks very much like mine did yesterday, except I have only a chest wall, no breast, and a bizarre sparing of my forearm, which is my usual puffy spot. I see she's a little heavy. I have often thought that if I were even a little bit heavy, my lymphedema would not be noticeable. I don't meet any of the measuring criteria but was diagnosed by obvious, obvious, obvious puffiness in my anterior left forearm compared to my right. That bioimpedence test that I had, which I resented so terribly at the time because I thought I was going in to get treatment, was also strongly supportive.
I don't feel as bitter about that test as I did at the time. I was just so desperate to get started treating the lymphedema and I didn't get that out of the visit. But it has occurred to me from time to time that if were a heavier person, even if I weighed as much as I have at other times in my life, my lymphedema would have been missed. I wouldn't have started treating it so quickly, I wouldn't be so satisfied with how things in general have turned out with it, and I wouldn't know about things like the risk of cellulitis. If I have to have lymphedema, so be it, and I'm glad I can work and basically do anything I want. The differences in my life are my sleeve and Tribute, how carefully I protect my hand and the self-monitoring when I do something out of the ordinary, like dig a garden bed. Not too much burden.
But here I am knowing I have lymphedema, still getting a bad-ass bug cellulitis since what I have is resistant to ceftriaxone but obviously sensitive to vancomycin - likely MRSA or a resistant strep species - and getting a cellulitis as extensive as that picture. And that's with getting good treatment pretty darn fast. Blood cultures, antibiotics, all within a couple hours of me calling my MO's clinic. What if I didn't know I had lymphedema?
I do suspect the critters multiplied so fast in me not only because of the lymphedema, but also because I have a chronically low white blood count. Getting up to 6.8 on the day of the cellulitis diagnosis was a huge increase for me. Proportionally about equivalent to someone with anormal white count of 7 going up to 20. Last summer, I had a total ANC as low as 0.3, never figured that out. But it came up to its usual 1.2-2.0 range. And I have no lymphocytes, fewer than well-treated AIDS patients.
Well, it all sucks. I went out this morning got some Zofran and Probiotics, because after all the Benedryl and steroids before the Vancomycin, I won't be safe to drive for hours (I have had repeated red-man syndrome with vancomycin, so need those premeds).
I did try my Tribute. Felt bad despite the numbness two nights ago, but after my dramatic response to vancomycin yesterday I was able to wear it last night without problem. I can wrap, but was just feeling awful with the fever and had an IV in my right wrist that made doing it hard. The forearm which never turned pink during this but got puffier than it's ever been, looks back to the bad end of its range of normal. Phew.
Thanks all you for the support. I am so, so thankful to know of this community of knowledgeable people.
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Outfield
Your attitude will pull you through !
Sounds like a great place to have the infusion room avail. on weekends. I am glad you are seeing some improvement.
Your little girl is afraid. I am sorry. I so hope she will see you getting better and better each and every day and soon she can relax about things.
Take Care and Best Wishes. -
Outfield, I'm glad the bioimpedance test confirmed LE: it's a troublesome test as it is measures increased fluids, but doesn't differentiate what fluids, and technically requires serial measurements, and some researchers have found it unreliable.
LE is a condition without objective diagnositic criteria, so there's a desperate search, and a manufacturer who wants to make money--impedimed--them of the deceptive marketing practices (they created a fake LE patient website to solicit support for their product and didn't own up to owning it and the information until we made a stink, and they've "bought" some researchers. LE doesn't have pharma to corrupt the field, it has devices....) Bioimpedance should be used in the context of an entire evaluation: symptoms, palpation of the tissues, measurements--and no actual threshold of measurement change is truly diagnostic.
A favorite article of mine is Stanton, on how 2 cm is useless for diagnosis, and attention to subtle changes needs to be paramount. Andrea Cheville said the same on the bc.org pages: According to Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic, it’s important to look at the whole picture: not just size and volume measurements, but the appearance of the limb or other body part. “There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don’t, well then you don’t have it,’” says Dr. Cheville. “For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it’s important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture’ — an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger.” http://www.breastcancer.org/treatment/lymphedema/evaluation/diagnosis
I've seen far too many women be told they don't have LE because they don't meet some arbitrary and meaningless criteria, when it's a purely clinical diagnosis at this point.
Sure makes sense that your chronic neutropenia sets you up for infection. I have an IgG subset deficiency, and it sets me up. But ANC of .3, that's scary stuff.So, long winded, but I'm so glad you're better, and I hope your daughter is getting comfort in her mom feeling better.
And I have visions of you playing ball in the spring, with all this behind you.
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Kira, I wish that quote by Dr. Cheville could be tattood to the back of every breast surgeon's forearm, add in the radiation oncologists too. Maybe not permanently, but long enough that they'd remember it. I have been such a good example because of my skinniness at the time of diagnosis of how poor all those measurements are. My left arm was exactly the same size as my right, but very swollen to the eye. Everybody took measurements because they said they "had to." I guess they could use them for following my response, but I sure hope insurance wasn't using them. I am absolutely certain I would not have been diagnosed if I were someone with a BMI of 29 instead of 19.
There is such a sucking need for a GOOD test that could be done as simply as the bioimpedance. My bioimpedance testing was solely because I saw my lymphedema, was panicked, and scheduled with someone a friend recommended to me as a "lymphedema specialist" who I could see out of pocket faster than the CLT I was waiting to get in with. Turns out all the woman does is the testing, as part of a breast surgeon's office (not my surgeon). If I hadn't been hoping so hard to get going with treatment, I wouldn't have been bitter about it. I think I was mis-referred by my friend more than anything, and I'm glad the surgeon is following up with people with what tools there are, even if not perfect.
I took my little girl with me to the infusion room yesterday. Read to her "Becasue of Winn-Dixie" until my partner came and got her, which I was glad about because it was quite an effort to keep going after the Benadryl kicked in and I was both wiggly and groggy. She was scared when I got my IV, but I told her it would hurt, but not so much that I'd shriek or cry, and I thought that since she doesn't cry when she gets shots it would be unlikely she'd cry if she ever had to get one herself. Then she watched it OK. It seems to have been a good thing to have done for her. We were able to put the cancer books back on the shelf.
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It seems to have been a good thing to have done for her.
OUTFIELD
I was a teacher of young children for many yrs. I am guessing it WAS good for her to see that all seemed to go okay with mommy.Please be sure to remind her that SHE is not going to be able to get this condition. As much as she is worried abpout you, all young children are egocentric and have a deep rooted fear and vulnerability. Reassurance from mommy that both of you are fine is sure to go a long way in easing her mind.
Good luck to you.
Get well soon!
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Thanks Purple, I will. She was 3 when I was diagnosed and it's been very hard for her at times. I got very, very sick with active treatment and that was no way around it hard. We read those cancer books so many times, and she did ask everything I read that she'd ask - did she give it to me by biting my breast, could she catch it - all the little kid questions. Seeing me as sick as I've been with this and going back to the cancer center to get it treated (bless my cancer center that they can do it as an outpatient and I don't have to be in the hospital) has brought it all back to her.
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did she give it to me by biting my breast, could she catch it...
Breaks my heart!
Thank goodness I dont have little ones. ( although I have a 2 yr old granddaughter)You hang in there. I am sure you'll be fine- you have to !
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The cancer books are back on the shelf: I think that is a great sign that she saw what was going on with her mom, and it helped her understand.
I totally had forgotten about red man syndrome: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC270616/ Good thing you get that benadryl.
Hope it's receding and it's great that you can have the treatment as an out patient.
My daughters are a lot older--early twenties--they were 19 and 22 when I was diagnosed, and each handled things differently: the older one was extremely worried and concerned, the younger couldn't really deal with it at the time. My younger daughter has been watching "Parenthod" and crying, and working things through now.
When I had BRCA testing, the older one had a plan for how to deal with the information, the younger didn't want to know.
My older daughter is a special ed teacher, working with autistic children, and hearing about her work reminds me of all the developmental nuances and capabilities of children/adolescents/young adults.
I always think with kids your daughter's age, the reality is a real help to them, as their imaginations are so vivid.
Hoping you're on the way to a rapid recovery, and the books stay on the shelf.
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Found out my bug. Strep agalactiae, a group "B" strep. It's the one that hits newborns, but it doesn't usually cause disease in healthy adults. I guess I don't count as healthy, even though I usually feel absolutely fine with my low WBC.
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Outfield, glad you've got the bugger tracker down--go get 'em!
Your daughter's experience reminded me that when younger kids ask about our wrapped (or garmented) arms, it's reassuring to tell them it won't happen to them. Sometimes when I say that I see them visibly relax, and usually that's all the information they want. We tend to equate early childhood with being care-free, but in reality it's worrisome for them to try to figure out all the things they see. So glad she's relaxing, Outfield--give her an extra hug from all your Sistahs here
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Binney -
Nasty bug: did you have a positive blood culture? Can they switch you to a penicillin now?
I've been watching the news from San Antonio: the hot items seem to be 1) Atlas--tamoxifen for ?10 years and 2) chemobrain is real.
So, how about reduced immunity due to chemo? It's not just the brain...
My key reference has been the IOM report on Survivorship: "Lost in Transition"--but it's getting old. http://iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx
Per Wikepedia:S. agalactiae's polysaccharide antiphagocytic capsule is its main virulence factor
Well, glad you figured it out and hope it's getting so much better.
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I think my exposure was my ill-advised dip in the hottub at our gym, fondly known as "diaper soup" because although there's a 6 and over age restriction, many parents let kids with diapers in it. I know, it's gross, nowhere for someone with chronic white count problems to be, but I'd been so well for so long, and I was cold, and I forgot I'd recently cut my finger.
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Cellulitis is easy to manage once you have had it. I have had it about 4-5 times in my lymph arm. 2 times, I have been in the ER for IV antibiotics, the other times I have used antibiotics prescribed to me by my oncologist...just in case. It comes on for no known reason, but it is so easy to recognize it!! Mine starts with small dots on my arm, and I don't feel great. By the next morning there is a fever and my arm has big blotches. Seek medical care ASAP!!! It can be very serious if you ignore it, but managable if you can spot it.
I am a survivor of 10 years on the 18th. Originally I had been given 6 months. Shows what science knows!!! My lymphs were involved and too many to count. All lymphs in armpit removed and there were 4 of 6 cancerous above my clavical. Lymphodema is a small price to pay.
Cheers, girls!!!
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Also, speaking of San Antonio, has anyone heard if they are promoting Femara for longterm care??
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RE: Mine starts with small dots on my arm,
I keep getting those kinds of thinbs! Maybe 2x a week. feel fine, put anti B ointment on them and they go away the next morn. My husband keeps telling me I am inspecting myself ( TRUE) and probably ' always ' got them in the past too ( NADA!) I dunno- Very odd.CONGRATS missing boob!!!!!!!!!!!!!
Inspirational!
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