GRRRRRRRRR I HATE LE..........

cwins1218

Thank you Minus-Two and JO-5

I appreciate the information and I will try using the chest and arm garment of the machine with arm elevated. I thought I was crazy thinking that it felt localized in my armpit area. I do massage it every night but will happily have my LE therapist help. That area is completely numb and this is so aggravating. I thought because I was wearing a compression sleeve and bra that maybe I pushed the fluid in the area..searching for a reasons??? My provider said because I have two good tracts she didnt want to risk doing the lymph node transfer for fear it will make things worse.. I am currently coming up on my 2nd year being diagnosed...little over this..but will try to remain positive😊

BlueGirlRedState

cwins - my lymphedema has changed in how swelling expressed. Surgery looked very interesting, but at this time is not an option for me because of health issues. Some A few people have posted great results, but hard to know how long term the success is. Providers here do not know much about it at all, lymphedma and even less about surgery for it. One hesitation I have, is how long does it last? My partner had routine prostate surgery after using drugs for peeing issues. And for about a year the surgery seemed to work great. But he back onthe drug again.

cwins1218

JO-5,

Wow! Good to know. I am very careful shaving cause that area has never regaining feeling. It will be 2 years. Currently sitting here doing the nightly massage after using the machine-- so that I can have a goodnight sleep. Im now massaging both breasts and arms/armpit every night just because I don't want what is happening on the left to start on the right.

CBD oil, 200 mg of gabapentin, olly stress gummies, pump and manual massage. just for 5 hours of un interrupted sleep. Sometimes compression bra.

SMH ☹

Rah2464

cwins1218 boy do I hear you. I spent a good part of last night hurting because my left hand/arm has a flare up going. I have overused it somehow but as usual cannot pinpoint when. I wonder sometimes if for me hydration also plays a role. Seems to be more likely in winter when I am battling keeping hydrated due to Tamoxifen and just the dehydrating effects of the heat running all the time.

There was a lady on here that swore by using her mini trampoline to get lymphatic fluid moving. I have gone so far as to invest in a cheap one, now I need to start trying to use religiously for 5-10 minutes a day.

purple32

WHICH covid vax did you hget ? I suggest PFIZER...had Moderna with issues to lymph nodes. Please share experiences / THANK YOU

JRNJ

I need recommendations for an arm compression sleeve without a glove that is for daytime use, not too much pressure. I have the copperfit gloves and socks and they feel too tight. I saw a few on Amazon. Not sure which one to get. Thanks!

Rah2464

JrnJ if you haven't already, you should be measured by an LE therapist first to determine sizing. They do measurements on your wrist, mid arm, elbow area and upper arm. That will dictate sizing. They should also be able to recommend what level of compression to use ( I know there is at least one product out there that has a lower class of compression but for the life of me cannot remember the brand). I'll try and check my paperwork to see what it is. If i find I will post it.

purple32

MARCH 1st, 2021 addressed covid 19 vax in thigh ( OK site)

Daily one hour free webinars! I received notice today of these webinars and wanted to share in case you may be interested. I'm definitely planning to listen to a few. The National Lymphedema Network www.lymphnet.org

March is Lymphedema Awareness Month. To celebrate and work towards our mission of increasing of awareness, we have planned an entire month of educational sessions intended for the patient

community. We want to let you know that we are here to work for you and to empower you with knowledge. This webinar series is complimentary and is our service to the community. Start at 5:00pm ET end 6:00pm ET. Each day will be a combination educational content on the topic listed, sponsored content, and time spent on updates on other lymphedema related topics, services, and/or organizations. Go to NLN website to register.

purple32

JRNJ

Contact Josh at lymphedivas.com

He can help you - you may want a gauntlet though. It is inadvisable to wear a sleeve with NO hand protection at all as the lymph fluid is likely to follow gravity and drain into and pouff up your hand.

Knowledge is power!

JRNJ

Rah2464 and purple32, thanks for your responses and advice!!

BlueGirlRedState

has anyone out there gotten any advice or opinions on getting lymph sucked out of the arm when you have an active cancer. my arm is so swollen and there is so much I guess fibrosis going on I can hardly move it it really really sucks. Ibrance and Arimidex dor about a year seem to be keeping the beast at Bay, but in December it started roaring back with a vengeance. I feel like some of my initial complaints and concerns were being dismissed as it must be something else because things were not showing up on CTS that is until the most recent one. I know that won't do anything for the cancer but it's making my life miserable

Anonymous

Bluegirlredstate - My LE therapist recommended this sleeve , and it softened the fibrotic tissue from cellulitis. I wore it while sleeping and anytime I could keep my arm from bending too much. It took time, but it worked.

https://www.thuasne.com/en/mobiderm-autofit-sleeve

BlueGirlRedState

Serenity - thank you for the suggestion. Do you use the Mobiderm instead of of "regular" compression sleeve? It looks like it might be easier to put on. Does the texture provide massage? Do you need a Rx ? I do not see a price on the website.

Anonymous

I almost always wear a sleeve. I use the Mobiderm when I have more fluid buildup. Initially I wore it every night and as long as I could during the day. It's too bulky to wear out. It leaves an impression on your arm. As the tissues and fluid level out, the fibrotic tissue softens.

I'm in Canada and bought it through my LE therapist. It doesn't require custom sizing, so you may be able to buy it directly from a store. You could contact their site to find where they're sold. It's certainly cheaper than a custom sleeve.

Rah2464

Serenity thanks for the info on the Mobiderm I think I will be checking that out. I need something to sleep in and I find I am constantly pulling my fabric sleeve on and off during the night.

BlueGirlRedState

Has anyone had any trouble getting vaccine other than arm? I finally got signed up for dose 1, have letter from DR asking them to use alternate site such as thigh.

MinusTwo

BlueGirl - copying my answer from another site.

BlueGirl - it's unlikely they will use your thigh if you are going to an automobile drive through location. Also unlikely if you're going to a WalMart, CVS, etc. I bugged everyone all the way along the line moving to the next supervisor until they found a nurse that said sure. Good luck. Please come back & let us know.

Anonymous

Rah - I sometimes remove the Mobiderm sleeve at night if I strap it too tight. But it's easy to adjust. Hope it works for you.

amanda6

Hi serenity, that's the first I've seen the mobiderm sleeve. I have a solaris tribute & it is very bulky, the mobiderm looks less so. I have some nerve issues & a very swollen wrist that make wearing my daytime compression sleeve near impossible. I will wear the tribute overnight sleeve during the day but it is heavy & awkward, & I can't imagine I'm doing my shoulder any favors as it pulls my arm foreward & down. Is this sleeve heavy? Think it could work as a daytime sleeve?

---

Anonymous

amanda - It's not heavy at all, but still too bulky for most long-sleeved tops. I wear it during the day at home sometimes but haven't worn it out. I'll wear short sleeves so I can put it on but easily take it off to avoid getting it wet or need more mobility. I hope your nerve issue improves. I had severe sciatica for years. Nerve pain is the worst pain I've had.

BlueGirlRedState

First pfeizer dose at WalGreen. Called 4 pharmacies, none willing to administer vaccine in thigh. I grabbed the first appt I could get. Clincs might be willing, but it is so hard to get an appt. A liitle bruising.

Someone posted a video on one of the lymphedema threads, DR/clinic in San Fransisco, I think. Tryng to find it. I think the specialist I need are nowhere nearme.

amanda6

thank you...it actually looks pretty comfy! The solaris tribute is made of Velcro & though it does work to move fluid, it's snags on everything. I'm going to check out the mobiderm. Looks like the US companies don't carry it. The gauntlet looks comfy too!

Anonymous

The Mobiderm also uses Velcro. It is comfortable even as it restricts movement. Hope you're able to get it.

InnaB2018

I use Mediven sleeves and gloves. Very comfortable

BlueGirlRedState

Trying a new compression garment after my arm blew up and got too big for a standard compression sleeve. The "Tribute Wrap Wrist to Axilla" is a little bulky, but the chip foam in it seems to be getting the swelling down. I am wearing day and night. Also have an "oven mit" to wear at night. During the day I use a regular compression glove with a piece of foam that has grooves instead of the oven mit. Without the foam, my hand tends to swell. Sometimes at night I have to take it off and ice the arm to help with pain. The wrap is not causing the pain, but it seems like late a night is when the pain is likely to occur. Does anyone else get a bruising/throbbing pain in affected limb? https://www.lohmann-rauscher.com/us-en/products/solaris-collection-by-lr/tribute-wrap/

runor

I am looking at a diagnosis of uterine cancer, waiting right now for the call to go for a hysteroscopy  and D&C so they can gather tissue to send to pathologist. This will be 2 cancers in 4 years. It was April 2017 I had a lumpectomy. I am not doing very well with this. 

In the bit of research I have done I have pretty much decided that I will NOT take any radiation, either external pelvic or internal brachytherapy. One lecture I heard said that the breast area tolerates radiation fairly well, much more so than the pelvic / abdominal area which has terrible effects from rads and accompanying lymphedema. Well, I had ONE stinking node removed with my lumpectomy and have battled lymphedema effects ever since. There is NO FREAKING WAY I am going to have that crap going on in my stomach, legs or genitals. If I'm about to be taken out by cancer, then I want my remaining life to be as quality as possible and that does NOT include all the horrendous effects of gut radiation, which very much include lymphedema.

It seriously enrages me the way that the effects of these treatments are overlooked, under-reported, glossed over and shoved aside. Gut radiation has a high rate of leaving people incontinent, bladder and bowel. Research shows that this happens way more often than doctors realize and it makes patients withdraw from life and become shut-ins. No doubt. Do I want to spend my last days shitting my pants at the dinner table? I think not. 

Lymphedema is not a side effect. I hate that term. It's a fairly common outcome.  An effect. I think 'side effect'  is a word that should only be applied to things that you can get rid of. This damn disease. I am in serious anger and hate mode right now. Scared to death while I try to tell myself I am ready for death. But I sure as hell am NOT ready to even risk this lymphedema in the lower portion of my body. No way. 

MinusTwo

Runor - I hear you. I agree - it's not a damn side effect. And it's worse that no one talks about it - or really even knows about it. I'm just so sorry about the possible uterine cancer. Do they not think they can get clear margins with a hysterectomy & etc? I do understand the 'why would I believe that', since I had a (quote/unquote) recurrence at exactly 2 years - AFTER BMX with clear margins.

Interesting - my RO was the only one who believed LE was real, did the tests & the measurements and got me into therapy. EVERY other doc said pooh pooh, it doesn't happen very often.

I hear the scared & angry and I honor your feelings. Glad you can 'talk' here. Keeping you in my thoughts.

HersheyKiss

Hear, hear rumor and MinusTwo! Lymphedema is a medical complication. It complicates so many things in life that I used to take for granted (lifting, carrying, drawing blood, etc.). I'm fortunate that my surgeon recognized my lymphedema and straight away referred me to a specialist. My other doctors gave me scant information and guidance. Frustrating.

BlueGirlRedState

I think oncologist get very little training for lymphedema and perhaps even see it as a necessary risk of cancer treatments, and may fail to recognize its profound affect on quality of life. Range of motion in affected limb is severe. Started some water exercises that do not require getting head wet, but getting a reservation at the pool is hard. Breast stroke is doable, but back crawl is hard, and front crawl is very hard. Hoping to get range of motion back so can swim. Some of the circuit weight lifting helps, I think. I am now trying to wear the "Tribute Wrap Wrist to Axilla" on the outside of a slinky long sleeve shirt. I was buying cheap shirts at thrift store and ripping seam on the right sleeve. One woman at checkout stand asked about my arm, and made the comment that her mom also uses compression. She mentioned something about stimulating thyroid with wool soaked in vodka and how she used to get in trouble when younger because she kept raiding her mom's vodka and drinking it.

Anonymous

Are you supposed to eat the wool? Hope not.

Qi Gong/Tai Chi/Yoga can help with ROM. I haven't tried this specific video, but her ballet-based movements would help.