Topic: GRRRRRRRRR I HATE LE..........

Dec 8, 2019 10:33PM LindaKR wrote:

i was hospitalized for almost a week, with cellulitis, in October, I was on IV antibiotics for 5 + days, then on oral antibiotics, 2 kinds, for 3 and a half weeks. I was told to stay on antibiotics for 3 days after the signs of infection, like redness and warmth were gone, and my skin looked pretty much normal. So, I think if you have redness still you need to contact your doctor. Mine went from not much to life threatening in a couple of hours. Also, take temperature and make sure it's not elevated.

Jan 8, 2020 08:16PM MinusTwo wrote:

Yes maj, you can have a remission. Exercise is good, they just recommend starting slowly & building up. But it could come back at any time. Be sure you take all the precautions you can.

Jan 22, 2020 10:20AM reflect wrote:

Hi I need some advice. I have cellulitis (6th time) and have been on antibiotics for over 48 hours, 2 IV infusions in the hospital and oral since then. Redness is receding and swelling is awful. When can I safely resume compression? I've had different answers, even from doctors. What have you been told? Thanks in advance.

Jan 22, 2020 08:08PM - edited Jan 22, 2020 08:09PM by JO-5

reflect,

I had 7 bouts of cellulitis since 2004, with one 3 day hospital stay. The last was the worst.

I got bit by a deer fly on that arm. I had all the swelling and redness of cellulitis and 5 rounds of antibiotics never touched it.....No pain and no fever. No other symptoms of cellulitis.

I finally got into a therapist and it was actually a very bad LE flare from the bite .

She did some very very gentle massage even with that.

All the other times I waited, drs orders, until the redness and most swelling was down before doing any massage at all.....then started with just a feather light upward stroke.

Things change so fast.... that the thinking may be different by now, but I certainly would not be in a great hurry to do much massage.

Perhaps someone else will be along shortly to give more info.

Joanne

Jan 22, 2020 09:53PM SerenitySTAT wrote:

reflect - I've only had cellulitis once where the redness and swelling were located mainly on the side of my elbow. My regular sleeves felt too tight around my elbow, so I used my night compression sleeves with the velcro loosely attached. They're also easier to take on and off since I wanted to check the area frequently. I saw my LE therapist after I had healed, and she thought I did the right thing. I hope you feel better soon. The redness went away after a day, but I remember the pain lasted until day 9 of the antibiotics. I was worried I would have to go back to the ED.

Jan 23, 2020 06:32PM Vargadoll wrote:

Oh my goodness! So sorry to read this! I've had cellulitis but not that severe. I had to wait a week after I finished my antibiotics to use my flexitouch pump. But no one told me not to wear my compression! I wore it well I had a bacterial infection and cellulitis ! Hope you get the right guidance soon !

Feb 27, 2020 01:08PM MinusTwo wrote:

Jo - Wow - so sorry to hear that you're still having problems from that dag-blasted deer fly. I'm sure this sounds evil & cruel, but I hope you smashed him.

I have truncal & breast LE on the right side since my ALND surgery. So far I haven't had any problems with calf or ankle. When I'm sitting I usually have my legs up and I walk a fair amount, but I don't know if that makes any difference. What does your LEPT say? Hopefully someone else will have more experience.

Feb 27, 2020 02:44PM Vargadoll wrote:

I have truncal and abdominal LE. I have not had a problem with my leg but my right hip does hurt. I had a MRI and it came back clear not even arthritis!

I'm sorry you are having an issue! When you are told LE and it's for life....sigh.....

Mar 1, 2020 10:07AM Binney4 wrote:

Jo, hello!

I have truncal LE that over several years moved to abdominal LE as well, and then showed up in my lower leg. I've been wearing knee-high compression stockings on that side, but lately I notice the upper leg is also sometimes swollen, so I ordered a thigh-high to try. Have you learned Manual Lymph Drainage for the abdomen and leg? Good skills to have in your LE toolbox. Hopefully what you're dealing with will be readily helped by more activity, but if not please know it, too, is manageable. The Lebed opening is still my go-to for both management and flares, including arms, legs, thunk or abdomen.

Knowing you, you'll be on top of this soon! Gentle hugs,
Binney

Mar 1, 2020 12:48PM JO-5 wrote:

Binney,

When you say your LE has gone to your abdomen, is your abdomen swollen? Slowly but surely ever since the LD flap in 2015 the LE in my trunk has gone to my abdomen.I look like I'm pregnant! I did gain about 10 pounds but am losing it .... nothing that should cause my abdomen to be this large.

I did get lazy with the Lebeds because the scar in my back where they took the lat muscle spasms when I do much of the Lebeds. I am not able to do any that causes me to have to stretch much because of the loaf that is still under my right arm, so I've had to modify some of the Lebeds. I will get back to it and just not do as much. I suppose some is better than none at all, right? It is so hard to do any exercises when you hurt 24/7 and any stretching hurts for days.

I do not know any MLD for the legs, but will see what I can find on line. My LE therapist did show me some for my right side abdomen but it really does not help much. I have a Solidea abdominal compression band that helps if I can wear it long enough. That makes the loaf under my arm (where they ran the lat muscle through) swell and hurt.

I'm a mess, for sure. Since I've been trying to move more the swelling in my foot and lower leg is not as bad. I don't know what is from the upper body LE and what might be from my bad knee.

Thank you for answering.....and though I'm sorry you are having yet even more LE ...... I appreciate knowing it really can be from the upper body LE.

This thread is aptly named isn't it? Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!

Joanne

Mar 1, 2020 01:12PM Binney4 wrote:

Jo, I'm not sure what you mean by your therapist showing you MLD for your "right side swelling," because even if the swelling is only on one side (mine is too) the MLD addresses both sides of the abdomen. Especially important when you think of where you want to move the lymph fluid to. With a full abdomen routine you can move it to the opposite groin nodes so it doesn't end up in your swollen leg. Abdominal MLD starts just like arm or chest MLD with clearing the nodes in the area where you want to direct the fluid to. Can you make an appointment with her/him and get a tutorial for an MLD that will help clear both your abdomen and your leg, without clogging the trunk or arm? You'll need to direct fluid to your unaffected leg in order to avoid moving it upward toward your underarm.

On the exercises, don't overdo on movements that cause pain, because pain brings more lymph fluid to the area--makes sense because the lymph fluid is a "garbage truck" that's supposed to carry away any damaged cells or other "junk", so it responds to calls of pain. On the Lebed tape she often says, do such-and-such "if you can do that." So, yes, modify any movements you need to and don't set yourself up for pain.

Yep--Grrrrrrrrrrrrrrrrrrrrr!
Binney

Mar 3, 2020 12:58PM MinusTwo wrote:

Wanted to share this info since one major hospital is saying we are no longer at risk with blood draws. Pooh Pooh.

Here's the latest seminar posted on line from Dr. Stanley Rockson at Stanford. It's an hour & 30 minutes - but I thought really worth it - even the questions at the end.

https://stanfordhealthcare.org/medical-clinics/center-lymphatic-venous-disorders.html/presentation-mode/stanford-health-care-now/health-library-videos/rockson-lymphedema-treatments

And here's a short summary. Long, but shorter than watching the seminar/lecture if you decide it doesn't apply to you.

5/30/18 talk at Stanford - Center for lymphatic & venous disorders
Diagnosis, treatment & research
Dr. Stanley Rockson is a guru -Only half doz other docs in the US. You may have seen him on NPR

Still true - 1/2 the docs in North America have between 15-30 minutes of their entire medical training.
Fascinating new research since the last seminar online in 2012. But scary what as he tells what most docs will say if you go to them with problems.
Most important to PRESERVE working lymph movement which will PREVENT progression
ANY injury to the skin - cut, burn, insect bite, rose thorn, small scratch. ANYTHING that traumatizes the skin and needs a wound healing response can bring on LE. Including pressure changes in an airline. And he talks about locations over 5000 ft.

10 million people in the US have LE. 90 million world wide
With breast cancer - chances 15-20% of developing LE
90% of the problems develop in the first year but risk never goes away.
So after 2 years, you probably have 2% for the rest of your life. How much you want to work on preservation & prevention depends on how much a gambler you are???
If you get past that 1st year, statistics show you may not be prone to be pushed over the edge to progression.
But if you're in the 1% - do you want to take that chance???

With only 1-4 nodes (like SNB) you have only 1/4 of the risk - but you can get LE with only ONE node out
You have to determine what you are willing to risk.
Yes are finite risks with surgery on parts at risk - even if LE is dormant or sub-clinical. Weigh the benefits. Even carpal tunnel surgery

New bio-impedance surveillance - if treat REALLY early, can reverse the problem
Coming - Biobridge implant at time of breast surgery

AND FINALLY... here's the link to the lymphatic network. Select 'resource downloads' on the right for TONS of facts.

Mar 8, 2020 10:54AM BlueGirlRedState wrote:

Has anyone had trouble getting a provider to respect your wishes, perhaps contrary to "their policy". I have lymphedema in R- arm, due to a new cancer in R-axilla. Prior TX for cancer in L-breast included 2 node removals both times. 3 techs with 3-4 pokes each could not get IV into R-arm for January CT. I requested they use the left arm, since no swelling there, and to please contact my oncologist. They refused, since lymph nodes had been removed on that side. They finally used an ultra sound guided "deep" IV,which went very smoothly.

Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric (Curcumin), Glucosamine-Chondroitin, BoneUp (multi with Collagen), Thorne (another multi), Melatonin (at night). Self-massage for lymphedema as well as therapist. Acupuncture.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.

8/2019 CT, Breast/chest, neck/thyroid ultra sound

9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)

9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.

10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.

1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.

2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray

Mar 8, 2020 04:51PM SuQu31 wrote:

Minus, Thank you for your response, and thank you for consistently helping so many with advice and experience. I had to convince my doctor to send me to PT for ROM after my re-excision, then for LE. She told me at first that I did not have LE (because apparently I was unlikely to get it, but to her credit (and because of my persistence), she did eventually send me to PT. I was less than impressed with the therapist, mainly because she gave me some Dos, Donts, fitted me for a sleeve and some exercises. And that was it. Two visits. She agreed that I have slight LE in my side under my armpit, but felt it wasn't severe enough to treat. Well, I'm glad it's not awful, but I was hoping for something more aggressive as far as treatment goes. Oddly, softer, more “compressing" bras bother my side and make it swell more than the underwire bras my PS wants me to wear, post exchange surgery. Still working on the bra thing. I will look into the one you wear.

And don't get me started on the insurance issue. My LE is caused by my cancer and treatment, so under my policy, the PT should be covered 100%. (Or that's my way of thinking). I never could get anyone to code it properly, and when the bill became overdue and apparently would threaten my good credit, I just paid it. My insurance still paid some and honestly, the time I wasted fighting it would have been better spent working and making money. But frustrating!

I've been looking for other options for LE treatment, and have not been able to find much. There is an NCI hospital in my city, so surely they have someone specifically for LE, but so far my online searches have not identified anyone there. I will not give up, though. Thanks for listening to my frustration.

Mar 14, 2020 10:28AM BlueGirlRedState wrote:

SuQu31m - I seem to have chronic LE, goes up/down. From what I've read, compression sleeve glove seem to be the most effective treatment. Massage has some benefit as well as do compression pumps. Link for home self-massage. India Lymphedema Foundation, and Link to StepUp(trying to get lymphedema added to Medicare). One person who has LE in arms and legs rcommended this book "The Compete Lymphedema Management and Nutrition Guide" Jean Lamantia RD and Ann Dimenna PT CDT. LE has now suggested compression pump for home, measurements are always slight lower when she uses one in office. Fortunately my insurance has coverage for lymphedema treatment and supplies. Therapist has strongly recommended that I "stock up" as much as possible on supplies before I am on Medicare, because even if I keep my private insurance, they won't pay anything if Medicare does not, and Medicare does not cover lymphedema supplies/devices.

https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be

https://www.stepup-speakout.org/