Lymphedema and insect bites (we think)

Emilylaughed · June 2016

we are new to the lymphedema party (and honestly wish we wouldn't have gotten here at all), but we are just starting to get this thing worked out--and it sucks.

I'm posting on behalf of my mom, diagnosed stage 3-C October 2012. 8 rounds chemo, radical mastectomy, radiation, local recurrence a year later (oral chemo, more radiation) and then a recurrence in a pleural effusion (still localized, surgery followed by oral chemo). We thought we avoided lymphedema -- and honestly, with everything else that went on, life was good without it. But a few months ago, my mom's affected arm blew up.

We haven't found the right combination of sleeves, wrapping, massage, exercise yet, and my mom is starting to get vaguely depressed over this complication. We have one good day followed by six bad ones, but we're working on it.

All of this is a preface for my question: she has what look like two spider bites on her unaffected arm. They aren't swollen, but they are full of fluid. Should we be concerned about this as a complication? They aren't red, they aren't hot, we have been treating with neosporin and she is also on a general antibiotic for a suspected touch of pneumonia (4 days into a 10 day regimin).

Can something like insect venom (presumably) cause issues? Any info anyone has would be so appreciated--and any tips to help us get this all lined out again would be wonderful.

Oh, the joys of this crappy, crappy side effect

Anonymous · June 2016

Hi EmilyLaughed, yes its a horrid side effect. Not sure what neosporin is but it sounds like you are doing all you can that she's on antibiotics right? I would further watch carefully that those bites don't turn into cellulitis, (watch for any redness) another dreaded complication we LEers have to watch for. Being the unaffected arm still has risk factors as some of us here have bilateral LE with nodes out on one side only. Not sure how much fluid is involved but if you get concerned get her to the doctor.

Emilylaughed · June 2016

thanks for the reassurance; it is terrible to see my mom so uncomfortable and unhappy right now! You ladies are such amazing inspirations when everything around here seems so dark. I'm really ready for this bout of bad luck to come to a close so that we can enjoy some quiet moments and enjoy some peace again.

ChiSandy · June 2016

Neosporin is an OTC antibiotic ointment that is broad-spectrum and (usually) hypoallergenic. Sounds like you’re taking all the right precautions. Be very, very careful with spider bites--brown recluse spider bites can necrotize flesh as they spread and need to be widely-excised before too much of the affected area is lost. But might they be tick bites instead? Lyme doesn’t always present as the stereotypical bulls-eye rash. What does the “fluid” look like--color, consistency, size? Is the fluid openly oozing or covered with skin?

Emilylaughed · June 2016

I spent some time googling, and the bite most looks like a hobo spider bite (http://mddk.com/hobo-spider-bite.html) the clear one in the middle of the page. It's a clear fluid, sort of just a blister that is oozing, but we're keeping it covered, so it's a bit of 'cover it, then hope it bursts, keep it clean, let it drain, then cover it...and it heals up and the blister forms again.' But all of that said, it's not cloudy, it's not red, it's not hot. She's really tired, but I think that has more to do with the General lymphedema and not so much these bites.

Eta: it could probably be just a mosquito bite, too. I don't think it was anything crazy that hit her, it's just the complication bit...

Anonymous · June 2016

I also forgot to say that there's a stepupspeakout website that has great info from some people here. Do you have access to a trained Lymphodema person where you are? I hope something helpful can be done about your mums arm VERY soon. This LE is an insult to injury.

I'm one that mozzies seem to go for. Personally I have to be very careful with the darned things.

Emilylaughed · June 2016

We do have access to therapists. She has an appointment tomorrow afternoon, and I'm sure they will take a look at it; they will be sure to say they aren't doctors, though. I think we'll talk to her pcp in the morning. I am always more anxious about strange situations like this than I ought to be. My mom has always stayed so stoic and strong, but since the lymphedema started a lot of that resolve has been slipping away, which makes it harder for me to make judgement calls on if it's a normal crappy feeling or if it's one that needs to get to a hospital immediately. I think this one can wait until tomorrow

Anonymous · June 2016

You're obviously a very caring daughter. Your mum will know that. LE is such a pest but I think you will know the right things to do at the right time, as you know your mum.

I hope she feels better soon. Just an added tip that may help, and I say it because when my arm is being a right nuisance I find that elevation really does help. Try and see if possible you can get her comfortable where you can jack her arm up under a pillow. No doubt you've heard of the fist pumps as well. I personally find these help me a lot too. 30 fist pumps is what I do.

Emilylaughed · June 2016

thanks musical. I've tried to do all of the best things for her for the last nearly 4 years, but this new complication has been harder than anything else she has gone through because it's made her so listless and disgusted. I'd be worried that they cancer was back somewhere new if we hadn't just got scans that showed that everything was stable.

She doesn't have a lot of mobility in her arm right now (we're going to get it back come hell or high water), but she keeps it elevated. She has been complaining about not being able to do exercises, but fist pumps are certainly possible.

Anonymous · June 2016

Hi Emily - hope your mum is OK now and let us know how your day goes as you venture out. She has a great daughter on board. Sorry for my bloop in my post above it should read "jack her arm up ~~under~~ on top of a pillow" Sounds like she is a fighter. She has plenty of support here as to being disgusted with it all.

You['ll probably know all this but - also if she's able, to keep the fluids up. Sometimes you just DON'T want to do that, but it's always recommended here. How is that bite looking?

Emilylaughed · June 2016

Hi Musical—Thanks for checking in. She's still exhausted, but we had a good appointment with the therapist today.

I talked to her oncologist's office today, and they think that the antibiotic is what's really knocking her out. It's making her fight a different fight, and that one's important too, but her poor body is getting tired.

The insect bites seem to be pretty much healed, so no worries there even though that's what got me started into a tailspin as the straw that broke the camel's back. The swelling in her arm is really decreased, but she's got lots of muscles spazzing in her arm and neck and back, so we're working on those. They're recommending an actual massage to loosen her up.

Thanks for the tips; she's been sleeping in a recliner chair and elevating her arm as much as she can. When we got home this evening she got comfortable on the couch, and I'm hoping that helps stretch her out a little more! We got two new exercises for her to work on for the next few days, so we'll see how that goes. Next therapy is Friday, next doctor is Monday, and we can only pray that she feels a bit better in between.

I'm so grateful for your responses. I am glad to be her support, but sometimes I need advice to help prop me up and keep this thing going the right way!

Anonymous · June 2016

You're welcome Emily. Tailspins are allowed here : ). Glad you've checked in too. So pleased those bites have backed off. That's one less thing you have to worry about. Great that the arm is going down and you're being seen by someone.

Not sure how much has been explained to you about MLD (manual Lymph Drainage) but it is a special type of massage which should be taught by a trained person. I'm not in the US, but on that stepupspeakout site apparently they have references to people you can access in your area. Here, there's a lot of importance placed on getting the right people. Your mum definitely needs a proper assessment with the spasms going on. I'm wondering if that might have something to do with cording.

I've been in the supportive roll myself so I know what it's like. You have to watch out for you too. You crash - your mum does too. Its really hard sometimes coz you just want to do your very best.

Gentle hugs.

LymphActivist · June 2016

Insect bites are to be avoided since any break in the skin of a lymphedematous limb can introduce or allow entry of bacteria. Watch for progression of red streaks from the area of the bites along the limb. If there is red "streaking" get to emergency since this could be "lymphangitis" or infection of the lymphatic system, which can progress very rapidly to generalized skin infection (cellulitis). My wife's favorite perfume is citronella to ward off insects.

ChiSandy · June 2016

I’ve found that I stopped getting skeeter bites when I started wearing Angel (by Thierry Mugler) back in 1994. It has NO florals in it--but does have citronella, grapefruit, vanilla, chocolate and coffee notes. When I was visiting a resort & spa near San Antonio in April and realized I’d left my Angel home, I found an essential-oil-based natural repellent called “Aromaflage” and “Aromaflage Wild” (the latter having a bit more spice). I know that picaridin and DEET are the only repellents officially considered effective, but Angel & Aromaflage work for me.

Emilylaughed · June 2016

God bless you all. I was reading about bug bites after it happened, and believe me, that wasn't something we were shooting for. The lymphedema therapists said that it's not so bad when it's the unaffected extremity, but we're still keeping a good eye on it. Nothing red or streaky happening. I wish smells were something that didn't turn her stomach; I'm big on essential oils, but my mom is big on absolutely no scents, otherwise she gets grouchy. That said, I think I'm doing a heavy cleaning of the house this weekend and shaking up any insect hideaways best I can.

vlnrph · June 2016

What a devoted daughter, doing such good care AND cleaning the house! Please be aware that, although for most people as ChiSandy describes above, Neosporin (generic name = triple antibiotic ointment) is fine, it does contain neomycin which is a known allergen. Another option might be plain bacitracin if this is a concern.

I had a strange little red circle last month on my non-affected wrist that I initially noticed because of a tiny streak of blood at that location while working in the yard one evening. Went in the house and washed, happy it wasn't the LE arm. That one took a week to fade, during which time I had a couple of nurse friends take a look. Then a similar lesion popped up on the opposite side but with no further complications. Not sure what bit me, possibly an ant?

I was about to cancel our outdoor pest control service however I think I'll keep them until the end of the season. They use a plant based preventive, a permethrin type product. We hired them last year due to finding a wood tick on my scalp and have not had those turn up since. Our property ajoins a wild area with a large pond which means mosquitos can be a problem. I like citronella: wonder whether imitation Angel uses a similar formula at lower cost.

glennie19 · June 2016

http://www.homedepot.com/p/Superband-Premium-250-Hours-Insect-Repelling-Wristband-SB37001P/205853294

I really recommend these little bands. They have citronella oil and lemongrass oil,, and one other one,,,

I've been wearing it on my LE arm,, and so far this summer, no bites! And I am one that the mozzies just love,,,,,

I found them at Home Depot in the gardening dept,, at the checkout.

ChiSandy · June 2016

I wouldn’t trust the imitation fragrances, as they may smell similar but use different, even synthetic esters. (The exceptions are fragrances manufactured in large perfumeries around Grasse, France for relabeling by the major designers & cosmetics firms such as Chanel, Guerlain, Estee Lauder, Mugler, Gaultier, etc. If the manufacturer is listed as “Galimard” or “Fragonard,” you are getting a rebadged version of the real thing. But it’s highly unlikely if you’re talking about those dirt cheap drugstore imitations (displays usually say something like “if you like Angel, you’ll love...”). It’s not at all like drugstore house-brand versions of skin care products (e.g. CVS’ moisturizer label reading “compare to CeraVe”) which are usually made in the same factory for separate packaging.

Anonymous · June 2016

"God bless you all. "

Thanks and same for you too Emily. - Been wondering how you and your mum has been today. Hope you've had a good day. Have to get off here but I'm interested to get back and read about warding off these pesky mozzies and other nasties.

Emilylaughed · June 2016

Thanks, Musical.

We saw her PCP today, and they are going to do an MRI on her shoulder on the affected arm; best case scenario, it's a frozen shoulder and they need to break up the tension. Worst case scenario the cancer is in the bone and that's what's causing the pain. (The scan from 2 weeks ago is still clean, so we're going to try to be hopeful that it isn't the worst case scenario--she had a bum shoulder before that picture was taken. Still, hard to not go there. )

The bug bites are worth keeping an eye on, but nothing to worry about right now.

So, the daughter is going to do what she can and clean and cook and stay positive. I'm supposed to go on a short trip next week, but I'm questioning leaving her be; she just needs the help right now. No one said that life had to be easy, I guess.

Thanks for checking in. You don't know what a blessing it is to know that someone is thinking of you! I hope that you're doing well and having some fun this weekend!

Anonymous · June 2016

Still thinking about you two Emily : ).

So how did the weekend go? Hope you didn't do too much work and that your mum is having some respite. Is she finding the exercises helpful? Hopefully you can go with that prior scan and the MRI doesn't turn up anything new. We always have it in the back of our minds somewhere (it's quite normal)

Let us know how the scan goes. All the best for that! If you take your couple of days, have a nice rest!

LewisThomas · October 2016

I think if you notice any different symptom in your skin and body you must consult your doctor. Initially ticks do not show any symptoms. Always keep your home, surroundings and pets clean. If you notice ticks in you home or pets you can call professional tick control from Fairfield county CT, as they have high expertise in this field.

Lymphedema and insect bites (we think)

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