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

Sep 26, 2021 05:58PM RuthATO wrote:

OMG this is an awesome thread. I am thinking a lot about Mavericksmom's comment regarding all this intervention is way too much. I was humming along with mild lymphedema which was a tiny bit worse. Once I reached out for help, I was recommended for custom flat knit sleeves then things revved up once I started wearing them. I've had months of bandaging, including Coban, with next to no improvement. Also wear a night guard. Between physio and RMT and my deductibles, I have already spent over $2500 this year. With no change.

I keep thinking this is a freight train which will keep going forever. :-(

I am going to start those exercises - anyone else do the 'T' on the floor? I jog for exercise but don't do a lot of stretching. I just did it now and I had to be very careful but it feels really good now. Feels like what I need. Not 24/7 compression!

I also hate both wearing the gloves and people who continually ask me "What's wrong with your arm?". I feel like a freak.

Anyone else here from Canada?

Sep 30, 2021 03:04PM - edited Sep 30, 2021 03:05PM by HomeMom

I've only found relief in losing weight. I lost 35lbs about 4 years ago on an Optavia diet (google it) and the arm went very close to normal with just a smidge of swelling on my upper arm near the shoulder. I gained the weight back and it's worse! I went to a therapist for 4 months at $300/month and nothing. So I'm back on the diet to get to an even lower weight. I am 5'4" and a good weight for me is the upper 120's to lower 130's. I've lost 9lbs so far (154lbs currently)Fingers crossed it goes down again!

Oct 5, 2021 08:10PM HomeMom wrote:

Went to one of my favorite stores today to get some new clothes. Found a nice pair of pants and a top that had dolman sleeves, which in the past has been great to fit my larger arm into, however, this top's fabric wasn't stretchy enough. Although I've been losing some weight with the diet I'm on, the arm hasn't gone down like the last time I was on this diet. I still need to lose about 20lbs, so that might be it. I had to put the top back and get a blouse with wider arms.

Dec 3, 2021 02:32PM HomeMom wrote:

BlueGirlRed - Yeah, sounds like a good idea for certain tops. Now I woke up and my arm felt achy and brused in places, very uncomfortable. I took a dual action Advil and it went away, but my arm looks almost like I have a rash in places. Anyone have that?

Dec 3, 2021 10:04PM MinusTwo wrote:

Sorry I don't know.

But have to share this amazing You Tube that the WearEase company sent out to their customers. Really a FANTASTIC video & recap from the LymphaticNetwork.org.

Dec 8, 2021 01:44PM HomeMom wrote:

Thank you Minus Two that was a great deal of information. I wish they had that lymph suction thing they do on the lower extremities for the upper. I had read about the lymph node transfer surgery, but you could develop Lymphedema wherever you got the transfer node(s). It sounds like they do that in conjunction though.

Jan 12, 2022 02:11PM runor wrote:

It has been a while since I popped in here. My LE comes and goes but so far has always gone, or at least been beaten back to a manageable point. But not lately. The last couple months have been horrid and nothing I do, none of the usual tricks seem to help. While my arm is slightly swelled, it's my boob,  armpit,  shoulder blade and side that are really giving me grief. By the end of the day my bra band on that side has dug a red, raw trench into my hide. I am so puffed up. The armpit and shoulder blade ache and my boob HURTS! It hurts all the time. I had pain like this for two years following surgery. My boob hurt all day long every day. Then it quit hurting! But now.... oh my word.... it's unrelenting and gets worse as the day goes by. I have not found the trick to getting this cleared up.

Out now to shovel snow, which either makes it better or worse and I never know which!

Jan 12, 2022 07:52PM MinusTwo wrote:

Runor - so sorry for this horrible flare up. Hope you can find a certified LEPT to evaluate and help you get past this.

Jan 13, 2022 10:47AM MinusTwo wrote:

I'm the one who recommended Wear Ease. Link below to the Sydney Bra I wear one 24/7 and they are really comfortable. (fuchsia for day & white for night) It can be stepped into or pulled on overhead. Drys quickly, which is important in Houston. When I was going through LEPT at MD Anderson, they had not seen one, but loved the product since it come up under the arms & high on the back to provide truncal compression. And no thin, hard band to cut into your ribs. Their products are made in the USA by a woman owned company. They are very responsive if you call and no problem with returns as long as you try them on w/o perfumes or lotions. Every couple of months they have a promotion - like buy one/get one half price or free shipping. I don't have any stock in the company, but wish I did.

https://www.wearease.com/products/sydney-bra?varia...

Jan 13, 2022 07:52PM runor wrote:

Wear - Ease, never heard of that. Will have to investigate, Thanks.  Pump units? God, I can't figure out how to use a flat iron on my hair, I can only imagine the catastrophe I'd have hooking myself up to a machine!

No LE specialist for me. I don't even know if there are any around here. I have muddled through, fairly well, on my own so far watching videos and just doing odd things to try and bring some relief. So far I've been pretty lucky. But not lately.

Jan 14, 2022 10:01AM ThreeTree wrote:

Minus Two - The Wear Ease garments look interesting and I'm considering. Thanks for the info.

Runor - See if one of your doctors will refer you for OT or PT, as they are usually the lymphedema specialists (LE Certified, etc). Most are PT's, but where I go it is the OT's. I am totally with you about the pump idea. It was suggested to me, but I found the idea and details totally overwhelming and could not imagine hooking myself up to some machine for an hour or whatever it is and just sitting there being "pumped". Also, I had read that pre Covid at least, someone comes to your house and helps you set it up and shows you how to wrap yourself up in it. I did not want anyone coming here either. My OT (and the pump saleswoman!) really pushed it, so I went ahead and signed the request to the insurance company. Turned out that my insurance denied the request that the OT put in anyway, saying that they saw no evidence that what we were already doing (massage, sleeve) wasn't working. This was one very rare time when I took the insurance company's side. Things weren't all that bad with the regular OT visits and the sleeve, and I thought the pump salesperson did a real "hard sell" and maybe even had the OT "snowballed" or something.

I've also found that it is real important to replace the sleeve reasonably often and to be sure and wear it all the time. My problems start if the sleeve gets stretched out and/or I forget to wear it regularly.

I too have watched some online videos for tips and help, but what I have found that helped the most seems to be the massage done by the OT, along with religiously wearing the sleeve, so again, I would suggest that you try to get a referral for that, because insurance covers it, it's relaxing, and not cumbersome or overwhelming like wrapping yourself up in a machine and having strangers come into your home to see where and how you would be using the machine.

Rah - I agree that the massage is helpful, but I don't think I could do it to the extent that you seem to be able to. I'm just too generally fatigued from all of this to even shower every day (I'm an every other day shower person), much less do all that pre shower prep you've described. There's lots of post shower stuff too, like lotioning and more. Just like you say, all of these maintenance things can take up so much time and energy, there isn't a lot of room left for just "normal living" anymore. I get really frustrated with both the time and cost of all these "extra's" that cancer has added to my life and just normal daily living.

Jan 16, 2022 09:01AM - edited Jan 16, 2022 09:03AM by cowgal

I have been dealing with LE since 2010 and have used two different LE therapists. I live in a very rural area and surprisingly enough, my first LE therapist was in another rural area but she had tried to decide what she could bring to their small rural hospital that would bring others in to the area so she got certified in LE years before I went to see her. It was still several hours drive but worth every mile. She taught me self lymph drainage and got my first set of sleeves and gauntlets ordered. I only had to visit her for a brief amount of time and from then on, I could get measured for my new set of sleeves every 6 months by a PT 25 miles from my home that surprisingly enough worked some with her so I did not have to drive up for all of the measurements. She retired after seeing her for a couple of years and my next LE had moved from a big city to a smaller city of less than 30,000 that is an hour and a half from me. In my neck of the woods, that is pretty reasonable drive. It just shows that you really don't know until you look where a LE therapist might be.

During my years with my current LE therapist, I was able to keep my moderate LE fairly stable and still lift feed bags and hay and be pretty physical. She told me that her LE patients were pretty diverse as far as what worked for them. She had one that only wore her sleeve when she was doing a lot of landscaping work in the summer months. I did start wearing a Tribute night sleeve in addition to my custom sleeves and gauntlets that I think really helped for quite a few years until my cancer came back in my LE side in a lymph node and my collarbone in 2019. That plus the radiation that was delivered to the lymph node and collarbone really flared my LE up the worst it has ever been and I could not get it under control very well and I am thankful that I was able to get a Flexi-Touch pump right before last Thanksgiving. My insurance paid 100% of it and yes they sent a trained LE therapist who drove many hours to teach me on the device and was very helpful and friendly. I use it every day. You do use it for 60 minutes and I normally do it at the end of the day while sitting in my recliner watching TV. For those of us that need it, the pump is very helpful and gets to places that I could not get to with my own manual LE drainage massage and quite honestly, I still work full time and farm and ranch so I was pretty dang tired in the evening to do the LE drainage and using the pump does a better job and I can relax. It is actually not as complicated as some of you make it out to be.

Jan 16, 2022 10:54AM MinusTwo wrote:

Cowgal - thanks for sharing you experience with a pump. Good information.

ThreeTree - how long ago did you finish active treatment? Did you ever see the TaiChi Breather exercise that was posted here some time ago? It not, I think I can find then & re-post since they are very mild.

Jan 16, 2022 03:16PM MinusTwo wrote:

ThreeTree - Darn - I can't get the link to paste or insert - either as a.pdf or a word file. I've tried both 'insert image' and 'insert link'. Can someone refresh my memory of how to paste a link?

I have another page of "light" exercises, but not in my computer. I'll try to dig that out.

Jan 16, 2022 05:50PM MinusTwo wrote:

THreeTree. Below is the link on the BCO thread - thanks to BInney - our guru.

https://community.breastcancer.org/forum/64/topics...