5th Case of Cellulitis

I had 1 case of horrible cellulitis. My onc tested my immuglobulin and found that IGG was very low. It covers immunity for 80% of all infections. Now I receive IVIG infusions. My IGG numbers are low normal but I am on track for another year of infusions now every 8 weeks.

No cellulitis for 1.5 years.

Sorry for the length of this post, but I have spent many frustrating hours searching the Internet for information and chat boards about secondary LE, MLD, CDT, and what to do when the compression garments and bandaging cause the skin problems or just didn't work. I have found NOTHING.

When will we women automatically STOP thinking that our doctors are all-powerful and all-knowing. They aren't. And this goes for LE Specialists, sad to say. And when will we stop accepting the status quo as our lot in life as breast cancer patients vs. raising our collective voices and demanding better treatments for LE?

Like other women, I have had cellulitis and other infections on my LE arm. So far, 2015 has not been a good year for my LE.  And I do have a suppressed immune system, but that isn't why these infections keep appearing. I think the explanation starts with my breast cancer treatment. To backtrack, I was diagnosed with Stage 3C IDC and metastatic cancer of the lymph nodes back in 2008 (24 nodes positive, no clear margins, spot on my lung, etc.) Like Ched, I had lots of problems with radiation -- and the chemo, too. LINGERING long-term problems. Nothing has been easy for me. But LE? This is the worst aspect in many respects of this Breast Cancer Journey. I can "hide" my missing breast with a bra and fake boob. I can't hide my deformed arm or my trunk bulge.

Back in March, I developed a major infection with hundreds of constantly oozing blisters just from wearing a new pretty blue arm compression garment for less than two days; possibly from the dye. My arm blew up and I ended up receiving a month of MLD (LE massage technique) and then the bandaging in April, which I found barbaric and hateful. After a month of bandaging (meaning I wore that bandaging 23 hours a day for 30 freaking days), I only lost 1 cm "overall;" less than 1/2 an inch!  My arm was constantly red, rashy, and irritated on top of it. It HURT! I was always on the verge of another skin infection. I was in ER twice in the month of April and prescribed Cipro both times. Yet, my LE specialist persisted with the massaging and bandaging even though the skin was constantly hypersensitive and red. I was so unhappy and deeply depressed.

Lots of posts in this website refer us to our LE specialists for info and help. My LE phys therapist was inconsistent  in HOW she massaged my arm before wrapping it with at least 12 layers of foam, bandages, and what not. Sometimes she used the traditional light massage touch, but other times she pressed really hard from my hand to my upper arm. And this created a whole new set of problems! Like: my right shoulder BALLOONED with fluid. My back swelled. My side swelled. My stomach and abdomen area really swelled. At age 65, I look 8 months pregnant, mostly on ONE side. Very little was done by my LE gal to address this new fluid increase in these other body areas. Oh, she did tell me to go out and buy a men's compression t-shirt because the sleeves are longer than on a woman's t-shirt. In the meantime, I could not wear my fairly new mastectomy bras and I am a 46D so going without wasn't pleasant. I could not wear the majority of my clothes, pants and tops included. I cried a lot.

Despite one popular sentiment, bandaging did NOT bring my husband and me closer together. He is good at many things, but bandaging my arm wasn't one of them, and I cannot not do it myself. He had maybe half an hour of watching my LE specialist do it on two occasions. Why she thought that was enough training, I will never understand. And, if I asked questions, my PT was mostly silent even when I wanted to discuss using kinesio bandaging and/or a pump for a few weeks (at the facility), followed by the MLD and only THEN the bandaging. Just to get the awful swelling under control. Like I said, the bandaging was NOT successful and I was tired of the irritated, red, and rashy skin on my arm.  I was tired of being able to wear only 3-4 tops over and over because that's all that fit. Plus, the skin on my LE arm never healed the whole month of bandaging. Still hasn't.

It's not just the LE skin problems as bad as that has been. It's the LE specialist who can't accept that bandaging was a disaster for me and who made my LE  worse, and now won't think outside the box. It's the doctors who looked at me blankly when I pointed out my one-sided huge "belly." They said they had never heard of truncal lymphedema! Yes! Really! It's the fact that little research and development is directed towards creating a new "gold standard" of care for LE -- because what we have now sure isn't it for me, and I have no clue what to do next.

Nancy

AlabamaDee!

However did you get access/permission/authorization for using a pump? My LE therapist seems to have made up her mind that kinesio tape and compression pumps are not on HER list of approved treatment options. Even though! My health plan offers the pump onsite. I can't get her to comprehend that the bandaging is NOT working for me on ANY level.

I have no quality of life with my arm wrapped up like a heavy useless appendage day after day. And it is often hot and itchy. One of my favorite side effects from the bandaging means that I use my left hand pretty much exclusively, leading to numbness and tingling in my left thumb and first 2 fingers from overuse. And then I can't use my left hand either!

While I absolutely HATE the bandaging, I am OK with my new night-time Oven Mitt; you know, the quilted night arm/hand garment that looks like it would hold a rifle of some sort? So romantic. In the morning when I take it off, my arm is wrinkled with indentations from the Mitt. I have no clue if this is normal or not. But, my arm does look a little better after wearing it, and I have less achiness and heaviness in my LE arm.

And! I ended up with a blood clot that traveled to my groin while on Aromasin. They thought I had a clot in my armpit at one point, but I didn't, I can't take Coumadin (allergic) and the Lovenox was wrecking havoc on my stomach. I am now on Pradaxa as my blood thinner.

I know nothing about the LANA or the Vodder training, but I have seen the terms used once in awhile. You can bet I will go look them up now!

nancy

my Therapist helped me get my arm pump. you need an RX from your doctor to get insurance to pay so you may go that route to get one. It seems you are unhappy with your care, is there another choice in your area for LE therapist? I hated wrapping but it did help me reduce over the long haul. I don't know why it does not seem to work for you. My nighttime oven mitt is not romantic but it is necessary to keeping my arm size reduced and so much better than bandaging.

I am trying to get the flexi touch pump. My alabama therapist does not have access to it so I may have to travel to Tennessee. It may help you with the trunk swelling since it covers more of the body than just the arm. Call their 800 number to see if they have a local provider and you may find their rep has LE therapist contacts who use their pump.

hope you get help. Don't give up! Cancer sucks and LE makes us feel like we are always a patient and conspicuous to the public. But I'm glad i am alive and I just keep trying to find new solutions to all the crap being thrown at me. Like I just came down with another cellulitis(staph aureus) in my LE arm so I had to get a Hickman central line to get daily IV antibiotics of cubicin everyday for a month. I broke my other arm falling off a ladder . Had to cancel our 30 th anniversary trip. It is always something. Life is never easy but I am thankful my faith, family and friends get me through.

Dee

MLD/ Massaging & the LE bandaging seems to work for most women, but it didnt work for me. So now what? 

Plus, I just got my d-dimer test result back which was 838 (normal is less than 499). Is bandaging even recommended in this case?  I am pretty darn positive that I have some upper arm fibrosis, not that my LE specialist confirmed it, or did anything specific (used "chips") to treat it. The fibrosis started during LE bandaging. 

Here's the situation: No, I am not thrilled with the care received from my PT LE specialist, but there are only 2 PTs at my facility that treat LE patients. Among other issues, she performed a deep tissue stroking style in the 2nd week of my month long CDT/BANDAGING. That deeper stroking only pushed fluid into my shoulder, back, side, etc., which was not treated. So for over 2 months I have not been able to wear my mastectomy bra or most of my tops. I had to ask my Onc for help. I now have an appt in a few weeks at another facility for a "2nd opinion" by some other PT.  A 3 hour round trip from where we live. 

At the same time, my current PT now claims she recently attended a class on using deeper strokes for LE and wants to essentially experiment on me. She did not answer my question of how is this new technique different from the deep stroking she already used on me THAT CAUSED FURTHER SWELLING which she did not address or treat despite my questions and comments at that time. Further, I cant wear a sleeve because of skin reactions. 

And here's another problem: the  CDT bandaging only aggravated the skin hypersensitivity on my inner arm, meaning for a whole month my poor arm was always rashy, red and itchy. I thought if there were any rashes that bandaging was NOT recommended. So why would my PT still bandage me? Yes I asked but I never got an answer.

Late postscript:

My LE-PT at the time I got my nightime LE "oven mitt" as I call it, told me next to nothing about this garment, let alone whether the indentations were normal or not. I rightfully expected my PT to know her job. Fast forward to a year and a half later to the current time (Dec 2016) and I have learned she knew very little about a lot of things to my detriment. We must ALWAYS question, research, question some more if we really want the best care for our LE.

I am still struggling with my bout with cellulitis. This is my 4th bout since November 2015.

I have had 2 heart caths with a possible diagnosis of Pulmonary Hypertension, but luckily I didn't have it. I understand your frustration.

Now they think I have Lyme Disease. I have been on and off of antibiotic since September 2016. I have never been the same

since I had my cancer and taken Tamoxifen 2013 ( I was on three estrogen cancer meds) with side effects. When I go to my oncologist they think I am a nut.

The first time I had cellulitis the PA from the oncology group about had a cow. ( she sent me for blood work, CT scan, ultrasound to make sure I didn't have a clot.)

The cellulitis is happening in my left leg and swelling has been on both legs. I still think it has something to do with my radiation and the cancer meds. Does anyone else have trouble in their legs? I don't have any cellulitis in my arm or any other place. There were no open wounds on my leg. I am really at a loss. I am going tomorrow for a therapeutic massage (hopefully to get the fluid off).