Pamela, thank you so much for all the information. Very helpful. I have been seen by lymphedema specialist and she is working with me-she ordered the sleeve & gauntlet for me so I’d get the right size. The sleeve has kept my arm under control, but I’m having problems with trunkal swelling. They are jumping thru all the hoops with Medicare to eventually get me a pump. I am just trying to figure out if I should go ahead and buy one on my own since it will be months before Medicare will pay for one. I am also seeing her for massage, which has been vey helpful. I am very proactive and like to know exactly what’s going on and what “might” be expected and what my options are. Exhausting...right??? Sounds like you and I are a lot alike
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Ashera started following
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Question: Breast Cancer
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Ashera wrote on Mlaq's wall
Hi Mlaq!
From reading your posts, it sounds like you are indeed having a lot of nasty side effects from your treatment. First thing that may not be an issue now as you wrote about it days ago - is STOP putting so much on your skin burns from radiation. No soap, no tea tree, no Jergens. Only use aqafor while it is healing. Gently wipe it off before your rad session. I used men's XXL pure cotton tshirts to sleep in and some got pretty yucked with the ointment but washed well enough. I even wore under another big shirt or tunic on some radiation days. Now I'm in MN - and my 7 weeks of radiation covered January so layering up was necessary. Can't believe your rad doctor or his staff haven't been more helpful.Re lymphedema. I was seeing an Occupational Therapist who was certified in Lymphadema treatment. I met her prior to my surgery where she took precise measurements of both my arms - to compare the befores. My surg was only my R breast (lumpectomy) but a complete axilla dissection under my R arm removing 21 lymph nodes. Lymphedema was sort of a given. A few weeks after surgery, I began to feel stiff wire-like cords up my upper arm and up and over my armpit and down. I started my sessions with her and she immediately id'd them as 'cording' - where lymph still in their veins had no where to go and had to manually be massaged up, over and down through my chest to the nearest viable lymphatic drainage. It's a very gentle, methodically massage that one needs to know how to do. In a few sessions - there was no more firm strings under the skin. I continued to see her for months - taking a break only when my radiation began to give me horrible burns. MN had excellent state insurance at the time - and my hospital participated in an after care program for breast cancer pts. Therapists of all kinds took special courses just for breast cancer as our care differed from the general OT or PT. OT even helps with swallowing issues.
As my swelling lessened, she requested my surgeon write a prescription for a compression sleeve. She's the one that told him the pressure I needed. They are sold in 15, 20, and 30mmHg - which is the amount of pressure they exert. After that first, you can buy your own. I use Lymphademaproducts.com and like the brand Juzo. I have tried Lymphadiva brand but their tops roll down on your upper arm. Both come in regular beige/black but also dozens of prints and colors. You can also buy a glove/gauntlet to go with. And...unfortunately for now...insurance and Medicare DO NOT cover anything for compression. There have been bills in the House to get legislation passed and once Medicare covers it - other insurance will. They are pricey - between 45 and $80 for the sleeve, less for the glove. Never buy used on ebay. You may need several a year.The pump I mentioned - my therapist first tried out one in her office to see how I tolerated it, as my time with her was soon not to be covered and I had to manage on my own. There are a few kinds. They are very expensive - and you have to have a doctors prescription to order one - and it has to be calibrated by a technician in the beginning. Go to biocompression.com - which is the manufacturer and I am sure there would be someone that could explain how you would go about getting a prescription written for one - you would not be the first that has this issue. I didn't realize how fortunate I was at the time in that my OT worked with a rep from this company to get both the insurance run by the state here, along with another 3rd party insurance company to share the cost. My set up has the compression deck with 8 chambers of graduaded filling - of the 8 areas on my arm sleeved vest that wraps around my chest. Think life-vest with a long arm covering your arm down to your fingertips. On that site - you will see pictures. The box, about the size of a cable box is programmed to start slowly working the compression of the sleeve from my hand, slowly filling airpocket chambers up my arm, around my shoulder/underarm area and down my R chest to around my rib cage. It pauses and slowly deflates, starting over. I feel like the upper quarter of the Michelin Man when I wear it. It fastens around you with strong velcro. From what I can tell, the main unit runs over $1000, the arm/vest unit will be upwards of $800. This is just a guess. I never saw the actually paperwork as it was filed with the insurance companies. Believe it has a 3yr warranty. Had to send my unit back to the factory once last year as it quit working. They paid for shipping both ways. This will sound discouraging for you I know. Your doctor - onco? surgeon? should refer you to whomever treats lymphedema. This might be a PT or an OT - and I would think this would be covered. You start there. Not a question for your radiologist. You are not the only one who needs lymphedema information - yours is caused by cancer treatments - others have lymphedema from other problems and it is easier to keep it from happening that to reverse it after it has already begun to swell.
Be your own best advocate and get noisy about needing help. Start with your oncologist/staff/nurses and surely they'll know how to refer you for help. You cannot just go buy a compression sleeve unless you know your strength needed. Ditto the pump. You could do much damage. Your first goal after talking to them is to find a person that does lymphatic drainage - a good massage therapist "recommended" by your medical staff or preferably a PT or OT who can let your doctor know what kind of garment you might need.
Maybe others on this forum have ideas? Post a new question on the general page to see what comes up. Others may have different ideas or different information to share.
I wish you so much love and luck in this!
Pamela -
Mlaq wrote on Ashera's wall
Ashera, I read a comment you posted about a chest pump you had for chest lymphedema. I’m dealing with this now. I’m 65 and am on Medicare & I have to leap over tall buildings before they’ll pay for it. Where did you get your pump and how much did it cost? Any info would be appreciated. Also do you wear a compression sleeve for your chest area? I’ve been looking for something like that.
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