Cellulitis and lymphedema

Southamptonmom

Cellulitis and lymphedema

Southamptonmom

My lymphedema started a month after I had a B/L mastectomy, November, 2011. I have not recovered from this stupid disease in so many ways. This past month, I had a crack on the tip of my index finger. I gel and wash my hands. I'm careful and conscious about what I do with my arms. Ugh. I think the chemo-induced neuropathy left my fingers and nails dry and brittle. Anyway, I feel like I was getting a cord in my hand, so I wrapped it. My fingers were swollen so I wrapped each finger and my hand and used a sleeve. It ached all day. I took the wrap off to make dinner, and I knew immediately. By the time the doctor called me back, it had traveled up my arm. By the time I went to the ER (Less than 1 hour), it was in my armpit and blood. The ER didn't move fast enough for me, and I was freaking out at them. I felt like they had no idea how important it was to take me before the kid with a 2 week fever or sore throat. I was in so much pain. It was crazy. Anyway, my question is, how long does it take for the redness to completely go away. I did not wrap for over 2 weeks, per my doctor, but started this week because the LE hurts. It is not hot. When I unwrap or remove my sleeve, the redness is comes back. LE therapist said I could wrap when my course of antibiotics were done. Heading to the doctor today, but feel like, even great medical help in a large city (Philadelphia), the experts don't even know how to treat this. I HATE IT!!!

kira66715

Rose, The redness of cellulitis can linger, but have a high suspicion for incomplete treatment.

The more recent thinking is that you can start to wrap and compress as soon as you have the upper hand on the infection--you don't have to wait for the full course of antibiotics to be done.

I know you posted a few days ago, what did the doctor say?

Not too long ago I found a reference for starting treatment earlier in cellulitis, I'll look for it.

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: http://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/erysipelas

So, 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

dassi52

I hope your cellulitis is gone. That is so scary. I am prone to cuts in my fingertips in winter from the cold water etc. I already started on my good hand, and now I am really worried that like you it should happen to the LE hand and develop into cellulitis. 

Kira, you are unbelievable! I am learning so much from you. Wish our doctors would know even 50% of all that! I just finished an exercise group with a LPT and when she asked us what we would like to see happen, I said that people like her who know their stuff, should talk to each BC patient while still in the hospital, so that those who'll get LE will at least know what to do and who to turn to. 

Southamptonmom

Thank you, thank you! I am so frustrated that there is not enough information and competent professional help. They have LE conferences every year, but none of the garments or pumps are scientifically proven to improve the LE. I tried to get a compression pump and my insurance refused the better pump, so I am getting the Lympha Press. I had to pay $950.00 for the vest. The biocompression pump had just a sleeve. I have B/L lymphedema. At times, my armpits are edematous and hurt almost unbearably. I also get it into my chest. This vest will clear my armpit and compression diminishes in the chest. My blood cultures are negative. My oncologist said the redness will take a while to go away. He thinks I may have underlying connective tissue disease. I think the oncologists just don't know how to deal with the permanent side-effects of chemotherapy, so they try to blame an underlying cause. I have chemo-induced cardiomyopathy, B/L lymphedema, neuropathy, major weakness and pain in my sternum and upper arms. The neuropathy has left me with an unsteady gate at times. My brain doesn't work. My nails are coming off. I stopped chemo October 7, 2011 and had the last Herceptin this past August.

If I can figure out how to post pictures, I will post them. I've never seen anything like this in the 15 years I worked as an RN. A bump on the hand to full blown sepsis in less than an hour or two. I'm not sure how I will do this the rest of my life. Depressing. I think my husband wishes he never married me, and my poor kids keep asking my to do things I can no longer do. WTH, I was running 4 miles a day, skiing, kicking around the soccer ball... Now I feel useless.. Ugh.

dassi52

You really got "the works" with BC and I think all of us, even those with milder issues, feel sometimes really down when they compare the before and after. I know a lot of people take something mild to relieve depression. Now I don't know how that would interact with everything you take and have, but I really believe that it might help you to deal better with all this mess. Wishing you optimal health and strength to cope!

kira66715

Rose, the cellulitis can really make you feel vulnerable: I had a bout of it this year--ironically after taking a class to become a certified lymphatic therapist--and it was a real wake up call. I had augmentin at home, and it nipped it in the bud, thank goodness.

Lymphatic fluid is a great culture medium and you add the lingering immunosuppression from chemo and you get sepsis from a cracked finger.

Some people will go on prophylactic antibiotics if the cellulitis happens frequently. I'd strongly recommend an emergency supply of antibiotics so you can start treatment early if needed. As an RN, you'll know when to do it. My LE therapist worked with a great LE doctor in NYC and he would start them early and often--like if you got a poke or any spreading redness and if there was a prophylactic reason, like an aspiration.

It's very, very depressing: here's a link to emotional responses to LE: http://www.stepup-speakout.org/patoconnorcopng.htm

Um, I don't think you have an underlying connective tissue disease, but an inflammatory reaction to cellulitis.

The bilateral and the axillary swelling are difficult problems to manage, but many women do get a handle on it with creative compression and swell spots.

And yes, the medical literature generally stinks around LE: just recently Mass General put out a study that SNB doesn't increase LE if done with a prophy mx, and I looked at the WHOLE article, not just the abstract, and it was beyond poorly done and yes it DID. And they're a "reputable" group.

Hang in there, you will get a sense of control back and you'll be able to do some exercise.

It takes a long time to get used to the new normal.

Kira

purple32

And they're a "reputable" group.

Not anymore- not in my book.

I havw LE from a  simple LX with SNB. MO RO and BS were three blind mice whern I showed it to all of them just three weeks post op.  Had me thinking I was imagining it. That was breast/ truncal at the time.

Now that I am 6 mos out my BS can finally see it. Response ?  " Oh, you can just get your ring re-sized ?!"  (Hmmm... maybe I can get my hand re-sized !)

I never got ONE SINGLE pamphlet on LE and not one post op instruction, as God is my witness !  Ship ' em in - ship em out.

mom2twins34

Hi girls...

Hi Rose,

Not much to add to but support.  I'm so sorry for what you are going through.  

I won't post the details of my cellulitis story, but if you care to read bits and pieces:

http://community.breastcancer.org/forum/64/topic/788444?page=1#post_3045353

My only suggestion -- I'm happy to say that I'm finally on the other side of it, but I have bottles of strong antibiotics on hand to take at the first sign of it's return.  Especially with how quickly yours moved, you may want to ask for the same when this bout is behind you.

Thank goodness for the girls here, especially our resident experts -- Kira & Binney.  Thinking of you and sending gentle hugs...  And I'm so sorry for all that you are dealing with.  It can be very depressing.  I try to be really positive, but I almost feel like I need to mourn the loss of my former self.  And you are right, I don't think most oncologist's are equipped to deal with the many side effects from our treatment.  It's a difficult road.  

One of the few consolations is that there are people here who understand -- you are not alone.  And thank goodness we have ladies here who are well-educated about LE -- and who care.  I wish it were so easy to find this combo in 'real life.' 

The gentlest of hugs to you... xo

*Edited to fix the link*  

purple32

Never a dull moment ....

OK ladies,

I have a  red ' pimple' thing on my nipple scar. (There, I've said it!)

The scar looked FAB. and healed well after a few weeks. I am now 6 mos out.

I woke about 5 days ago and it had appeared in the night. I was a little alarmed , but then thought perhaps it came because I practically live in a  bra or garment of some sort and area could not ' breathe'. Husband says I make too much of things, and I should ignore and see if it goes away.

I highly doubt it is cellulitis , and have NO other symptoms.

I went to see a new MO yesterday. MIND YOU, I know darn well , he is let us say ' not the best'. In any case, I did ask for keflex to have on hand. No prob. He did a breast exam and said all looked good. ( I never mentioned that red thing was new so who knows WTH he thought on that !)

Should I settle down as my husband suggests or ??  I sure dont feel like going to some ambitious dr. who wants to biopsy something in my LE breast that could disappear as quickly as it appeared. My own BS is in Boston- takes awhile to get appt.

I appreciate any comments at all.

THX

dassi52

It must be so frustrating to work with these kind of MDs that you can't rely on properly. I suggest that you call your BS in Boston and ask her on the phone what she suggests. She is in a better position to give you guidance. And by all means tell her you are not too happy with the locals, and feel you can't rely on them. Maybe she has someone in your area who she can recommend.

purple32

It must be so frustrating to work with these kind of MDs that you can't rely on properly

Actually, i intentionally ( JUST) CHOSE THIS M.O>  frANKLY, i AM TIRED OF POMPoUS drs WITH THE ' LET'S WAIT AND SEE' KIND OF ATTUITUDE ., tHAT CRAP CAN kill A PERSON!  i'D RATHER HAVE AN mo WILLING TO SAY : " sURE i WILL rx THE KEFLEX FOR YOU- SO YOU WILL HAVE IT ON HAND.


bUT WHAT TO DO ABOuT THE ' PIMPLE"?  tHAT IS ANOTHER STORY.

thx

Yikes ...so sorry caps.

dassi52

I meant the pimple, but don't tell me there are no MDs who are good and forthcoming at the same time???? Don't lose hope. There are very decent MDs around (hopefully in your area as well) who will listen and do care, and I really wish for you to find such a person. In the meantime, call your BS about the pimple. You've got nothing to lose! Don't lose courage!

purple32

OK, I really *Think* this is  from a hair follicle as , now get this - I woke this AM with one on the right nipple!  When I looked very closely, I could see there is a stray hair there that is the root of where a lighter 'pimple' on the right aerola now is !!!!

Now, I am guessing that is probably the culprit on the  left nipple as well, but cannot see the hair due to the scar line perhaps.

IF this is the case, do you think treating with witch hazel/ alcohol...at home is afe ?

Anyone ever hear of this ?

It makes sense to me as perhaps this area just does not get air the way it used to - I even wear a  sports bra at night.

I just dont need a new worry right now.  ugh

Southamptonmom

Purple, the red pimple thing could be an abcess from an internal stitch. That's happened to me with my port and my B/L mastectomies. I don't think my body likes those strings. Once it poped through my skin, I was able to clean it and pull it out. I am only telling you because the PA at the SO office told me it was ok to do it. I love my SO and my MO. They are kind and caring and really are more like a friend than a doctor. I just think that they treat the cancer and set you free. That's the way it has always been. If there were a doctor that specialized and researched LE, we would have some much more medical coverage and treatment options. My right arm is not huge like some people get. I had a +3 to +4 pitting over Christmas last year, and no LE therapist. I wrapped it by looking it up on youtube, and waited for an appointment. I had a DVT in the left arm since 11/7 surgery, that was not diagnosed until February. LE and DVT made that side a +3 as well. Now, my husband can see the difference, but other people will say the dreaded "oh, that's not so bad." Ok. You are  not living with this, it hurts like a mother ......., It feels like my fingers are going to split, and my armpits and arms ache all the time. The amount of time it takes to take care of my arms sucks, too. On my radiated side, my sternum hurts ALL THE TIME. The pet scan showed increased intensity in that area, and I am told it is probably a costrocondritis. I am 9 months out from radiation, and there is not a second it doesn't hurt, and when I can feel the LE fluid aching and moving, my chest is unbearable. I cannot cook without taking my gloves and sleeves off either. I don't wear my rings anymore. I'm afraid too...

Kira, I've poked around your website many times, and find it has valuable information. I did take a keflex when I fingured out what it was, but it was so virulant that my arm had no chance of missing out on an ER trip and an admission. The cording and the infection really felt exactly the same. I have been using the Lymphapress for the past 2 days. I've only had about 20 to 30 minutes to use it, but when I have it for a while, I am going to put reviews online. I couldn't find any information about the garments and pumps...

How long does a Keflex prescription last in the cabinet? It's now almost a year old.

Honestly, if it were not for my kids, I would have never chose the chemo path. Death would have been so much kinder. If I ever get well enough to go back to work, I am starting an oncologic rehab and support center.

Can anyone tell me how to load pictures on here?

Once again, you ladies are such wonderful support. Really my lifeline.

purple32

Purple, the red pimple thing could be an abcess from an internal stitch.

I dont think so after 6 mos., but thanks. I do think it is a hair follicle issue- now that I can see the right one that matches (YIKES) but sill not sure if I can self treat as I prefer to.

Sounds like you have been  through a lot!
Best wishes to you.

kareenie

This may sound off-the-wall but once I had a pain in my nipple and when I looked really closely I had a teeny tiny "cut hair" (loose hair clipping) that had worked its way into a pore. (I had just had a hair cut.) I pulled it out and the pain went away.

kira66715

Rose, I openned a photobucket account and uploaded photos, and put the link in when I want to post them: other women know other methods, but that's what works for me.

There was a medical letter about expiration dates, and reportedly they are much further out than listed: the pharmacy puts one year on the bottle. But, to be safe, I'd refill it. I think you can store them in the fridge. I'm notorious for "saving" meds, but do toss them eventually.

Personally, I find that many of my treating doctors downplay side effects or collateral damage, with the attitude that "we saved your life"--but study after study shows quality of life issues in "survivors".

Rose, a LE flare causes despair, just know it and realize that you made the absolute best decision you could with the information you had available. If you are starting to get really sad and hopeless, you deserve someone to ease that.

I took the STAR oncology rehab course and it said more breast cancer patients have PTSD than depression, but why do I see so many on anti-depressants? It's not just for the hot flashes.

There are peaks and valleys in this journel and this is one dark valley right now.

What can we do to help?

Kira

Southamptonmom

Talking with ones who understand, helps the most. I tried antidepressants for neuropathy and was sleeping 18 hours a day. I don't want anymore drugs. An occassional ativan is my limit. My kiddos are 12 and 13, and full of energy. I need to have my head on, drug-free. As for "survivorship," I've had that speech from my RO. I wanted to slap him.

carol57

Purple, I had an internal stitch work its way to just under the skin surface a good year after my reconstruction surgery. It looked exactly like a pimple and was quite aggravated by my bra band, pretty painful in fact.  My PS took care of it for me, which was simple enough.  So I can say for sure that the stitches can be little gremlins long after they're put in.

Rose...all I can say is that in this forum, you are indeed surrounded by women who care very much.  Our experiences can differ quite a bit, but the common thread is both needing and being able to give emotional support through some terrifying times. And through the emotional abyss. I tear up every time I read someone's post about not being able to wear their wedding rings, because that tangible tie to my own rock of a DH means so much to me and not being able to wear the rings would wound me in so many ways. I am lucky to have no hand involvement and wear only a gauntlet.  I am so sorry --and so angry, in fact--that LE has made you put your rings aside, as well as been so terribly physically painful for you.  Sending hugs your way...

Carol

purple32

YIKES!

Really, Carol? ! Wow, well is sure is coincedence to have the right (good)  boob get a " matching pimple" in a hair follicle now. ( NEVER had anything like this before in my life)

ugh and ugh.  That would be a hassle.

The right one already seems  somewhat better after applying witch hazel a few times today. Of course , the left is on top of a scar.

OK, witch hazel all weekend and if this isnt any better I guess I have to get a call to MGH ...should only take  month or 2 to get in !!!!!  I sure wish I had gone to a local surgeon.

Cindyl

Ditto what Carol said.  I had a stitch work it's way out of my forehead years after the accident...  I don't think witch hazel will do any harm for a watch and wait type deal.

Good luck.

purple32

Wow!  that is so surprising.

Thanks very much, Cindyl and Carol

carol57

Actually, a good friend had something similar within a C-section incision. When her son was 22 years old!  Her doctor said it's called a 'wayward stitch.'  I had forgotten about that until tonight, when she happened to call. Thinking of these posts, I asked her if I remembered it right, and she confirmed.  I suppose this means we have some kind of stitch jeopardy forever. Ugh.

purple32

Ugh is right , but dont stop there.  Tell us Carol, how did they resolve the wayward stitch with your friend ?

carol57

Her wayward stitch was removed in a surgeon's in-office procedure room, with just a local anesthetic. It wasn't deep at all, and removal took just a minute. A big bandaid afterward.

purple32

That sounds very promising!
THX Carol.