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Topic: Lymphedema pumps

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jul 29, 2017 10:38AM

AliceS wrote:

Does anyone know anything about Lymphedema pumps? Two years ago had my arm wrapped for 6 weeks to reduce swelling. The LE therapist just recommended a day sleeve after that. The swelling returned right away and she said to get a night sleeve (which looks like a big oven mitt). She says I'm Stage 1, but to me it's quite noticeable and some of my clothing sleeves are tight. The medical suppliers in my area don't sell pumps, don't seem to know anyone who has one, and don't seem interested in recommending one. Online, some ladies seem happy with their pumps when looking at reviews and others say they put them away and stopped using them after awhile. The machines are expensive and I would like to know how effective they are before buying one. 

Thanks to anyone with input.

Dx 10/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-/PR-, HER2+ (FISH) Dx 10/9/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-, HER2+ (FISH) Targeted Therapy 11/12/2014 Herceptin (trastuzumab) Chemotherapy 11/12/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy
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Jul 29, 2017 12:06PM Zillsnot4me wrote:

my therapist told me about the pumps and the distributer. I got a used 8 chamber one. I'm also a st 1 but it is noticeable. It savesme a trip to the big city and parking hassles. I don't do it religiously but I'm glad I have it. It takes so long to get an appt.

Liver 1/ 2016, Xgeva 9/2015, Bones 4/2015, Lungs 4/2013 Dx 4/2013, 4cm, mets, ER+/PR+, HER2- Surgery 4/29/2013 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/23/2013 AC Hormonal Therapy 10/2/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 11/6/2013 Breast, Lymph nodes Surgery 9/25/2015 Prophylactic ovary removal Hormonal Therapy 1/7/2016 Femara (letrozole) Targeted Therapy 1/7/2016 Ibrance (palbociclib) Hormonal Therapy 4/24/2017 Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy
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Jul 29, 2017 01:30PM AliceS wrote:

Thank you SO much for replying. The day and night sleeves may help but results are minimal. Seems like a pump would be more efficient--but not knowing anyone who has one I'm reluctant to invest. The wrapping was not beneficial long term and was a big inconvenience for what it did. Glad you like the 8 chamber and I'll research it. How long does the benefit last? 

Stephanie

Dx 10/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-/PR-, HER2+ (FISH) Dx 10/9/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-, HER2+ (FISH) Targeted Therapy 11/12/2014 Herceptin (trastuzumab) Chemotherapy 11/12/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy
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Jul 29, 2017 02:44PM Kicks wrote:

I have a FlexiTouch MLD machine that I've had for more than 6 yrs. I use mine daily (unless out camping where no electricity is available). It does a MUCH better job of MLD than I do - so for me, its the way to go. I do wear my day garments (sleeve/glove) daily and use my night garment nightly to keep under control.

My FlexiTouch has 3 garment sections that work together. The garment sections are,upper thigh/abdomen, upper body/chest and arm. It takes an hour for it to run a cycle. It starts by draining the upper leg/abdomen, then moves to upper body/chest then moves to areas of arm in the sections. When this is portion of the program is done, it reverses direction and continually moves from hand, up arm, around chest and down to abdomen/upper leg and then starts all over again at hand.

When my LET guy ordered mine a Representative from FlexiTouch had to bring it and do education.

I'm not sure I would buy a used MLD machine (VA bought mine for me so not an issue). For one thing, there are different sizes in the garments that go with the unit. If you are 125 lbs, a garment that fits a 200+lb person won't fit you and visa versa a garment for a 125 lb person can't fit a 200 lb person. Yes there are adjusments that are made but they can only adjust so much. Also with time and use the garments, the garments do have to be replaced. I'm on my 3rd set of garments as with time and use, the sections had 'blow outs' between the chambers.

Do I like my FlexiTouch - no - I LOVE it! I would hate to not have it.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Jul 29, 2017 06:22PM AliceS wrote:

Thank you so much for your reply, Kicks. Really am in the dark about these machines, so grateful to get your input. Will certainly research the FlexiTouch and appreciate your positive comments for it helping. I only need it for my arm--sounds like you have LE in other parts of your body. In the morning after using the night sleeve, I exercise pretty vigorously, and my arm swells some and am sure the Florida heat in the summer doesn't help. Would like to have a machine to help before putting on the day sleeve. 

By the way--thrilled to see you have done well with your BC so many years--you're an inspiration to many of us who aren't as far down the line. Hope to follow your success!!!

Stephanie

Dx 10/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-/PR-, HER2+ (FISH) Dx 10/9/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-, HER2+ (FISH) Targeted Therapy 11/12/2014 Herceptin (trastuzumab) Chemotherapy 11/12/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy
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Jul 29, 2017 08:32PM Kicks wrote:

NO! I do not have LE in "other parts of my body"! My ellbow and above and below is where my issues with LE are. The reason for 'empting' nodes in the rest of the body is so that they can accept the fluid that will be coming as MLD moves the stagnant fluid. Wasn't that explained to you when you were taught MLD?

I am a very active outdoor woman. For the last 3 weeks we have been over 100f every day.

Though I no longer live in FL, I am a Native and 6th generation Floridian on Mom's side. Dad's side had been in SW Fl since the 1880's so I do know FL - how great it was and what it had become.

Nor make totalally unfounded statements that I have LE issues in other areas because I tried to explained to you how a MLD machine works (MLD massage).



Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Jul 29, 2017 09:36PM Spookiesmom wrote:

Check with your insurance they may cover some or all of the cost. Mine covered 100%, and my PCP ordered it for me.

Dx IDC, Stage IIIA, Grade 3
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Jul 30, 2017 09:20AM AliceS wrote:

Yes, forgive me--totally jumped to conclusions about the FlexTouch for parts of the body besides the arm-- thought that when I saw pictures and many people on machines who have LE in other parts of the body using a large pump. My therapist did massage my trunk, legs, etc. when I had the wrap for 6 weeks 2 years ago so I do know the fluid has to be distributed throughout the body. I try to massage my arm toward shoulders, back, chest, etc. and do the exercises but not sure how effective all that is compared to a pump.

I have Blue Cross Blue Shield. They said since Medicare does not pay for sleeves they do not pay anything towards them. Day sleeves I can get online cheaper than at a Medical Supply, but the night sleeve was custom made and cost several hundred. Will find out if Medicare or BCBS will pay for a pump. 

Many thanks for your information and input. I appreciate it--hate to order online without knowing more about the machines from someone with experience.

Stephanie

Dx 10/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-/PR-, HER2+ (FISH) Dx 10/9/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-, HER2+ (FISH) Targeted Therapy 11/12/2014 Herceptin (trastuzumab) Chemotherapy 11/12/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy
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Aug 2, 2017 09:12AM mimistewart wrote:

I'vebeen using a pump for close to a month two times a day,my arm is still swollen and I wear a sleeve everyday .i'm hoping for my swelling to go ,not sure that it will. My insurance paid for my pump and the girl who brought it says use two times a day and it will keep me from getting cellulitis,so for that I'm in

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Aug 2, 2017 07:43PM Kicks wrote:

There are several different MLD machine manufacturers and not all produce the same result levels for everyone. I personally only have experience with FlexiTouch and as I've said LOVE IT and would not want to be without it.

How long does the programmed cycle take to run for you? Mine takes an hour to run and I really can't see doing that much time twice a day (total of 2 yrs a day). Also, I was told not to run it more than once a day. I was told that it's OK to run it twice a day for a day or two IF having any unusual issues. Summer is great for me - winter not so good, as winters are brutal here and I can't get out and get as much exercise (I do go to the gym most day but not as good as actually getting outdoors) as I do during the summer so LE is much more of an issue in winter for me. But we are each different.

If you are still having swelling issues with using your MLD machine, you might want to wrap at night til you get the swelling under control. Or get a night sleeve. (Night sleeves work passively while you are sleeping (inactive/passive), day garments work actively while you are up moveing around (active).)


Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Aug 2, 2017 08:43PM hugz4u wrote:

Mimi. You also should be wearing a hand garment if your not otherwise fluid will drain to hand.

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Aug 26, 2017 01:15PM VLH wrote:

My LE therapist recommended the flexing touch and my medical oncologist said she would definitely prescribe one. I need to get through radiation before considering the pump; however, must one use it daily for ever? Luckily, I'm only stage one. The idea of a one hour cycle every day is quite daunting although I guess it could be justification for binge watching Netflix. Nerdy

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Aug 26, 2017 07:07PM Castigame wrote:

Answer is no. I regiously used for two months. Due to radiation I have not used it at all for about month and a half. Because I have been busy i did practically no MLD. My LE is stage 1. I am even getting lymph nodes radiated. Swelling from rads and non usage of flexitouch is not bad. I am thinking I may be able to skip here and there.

I would like to add though daily usage is cumbersome at times but the benefit is worth the daily commitment..

Mimi

Mimi Dx 1/11/2017, IDC, Left, <1cm, Stage IA, 0/2 nodes Dx 1/11/2017, IDC: Papillary/IDC: Cribriform, Right, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2- (IHC) Surgery 2/15/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 3/20/2017 Radiation Therapy 7/30/2017 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 26, 2017 07:09PM - edited Aug 26, 2017 07:15PM by Castigame

Answer is no. I religiously used for two months during chemo except bad chemo days. Due to radiation I have not used it at all for the last month and a half. Because I have been busy i did practically no MLD since rads started. My LE is stage 1. I am even getting lymph nodes radiated. Swelling from rads and non usage of flexitouch is not bad so far. I am thinking I may be able to skip here and there.

I would like to add though daily usage is cumbersome at times but the benefit is worth the daily commitment..

Mimi

Mimi Dx 1/11/2017, IDC, Left, <1cm, Stage IA, 0/2 nodes Dx 1/11/2017, IDC: Papillary/IDC: Cribriform, Right, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2- (IHC) Surgery 2/15/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 3/20/2017 Radiation Therapy 7/30/2017 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 27, 2017 10:04PM Kicks wrote:

There is no one who can tell you what will be best for you using a FlexiTouch (or other MLD machine). We can only give our personal experiences which are not at all the same for all of us as we are each so unique.

I use my FlexiTouch daily basically. That does not mean that there aren't days when I don't. When we are camping with no electricity that it gets used - of course it doesn't. Or when the day's schedule does not allow for using it occasionally - nope!

We each have to learn what is best for us INDIVIDUALLY - not what someone else says because that's what 'they' do is the 'answer' for everyone.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Aug 28, 2017 01:44AM ChiSandy wrote:

>>The reason for 'empting' nodes in the rest of the body is so that they can accept the fluid that will be coming as MLD moves the stagnant fluid.<<

Exactly! Your lymph system extends past the body part affected by the removal of nodes. My LET explained there are four “quadrants” of the lymph circulatory system, and there are channels that flow across the chest, down the sides, and across the abdomen. Even if your node removal impacted only one quadrant, MLD mobilizes the channels in the other quadrants to move the stagnant fluids into the capillaries & veins and eventually into the urinary system to be excreted. (Which is why we’re advised not to do MLD just before bedtime, unless we don’t mind running to the bathroom not long after falling asleep).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 29, 2017 12:21AM VLH wrote:

Thanks for the input, Mimi & Kicks. Of course, results will vary, but I wondered if the body tended to respond after some amount of time so the frequency could be reduced to, say, three days a week.

Must you lie flat during treatment?

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Aug 29, 2017 05:02PM Kicks wrote:

Most of the time I'm sitting up playing on my tablet or reading. Occasionally (more often in winter than summer), I'll lay on the couch on my left side (my LE is on right) watching TV.

We each have to find out what works for us individually. What works for me, may not for anyone else (and 'visa-versa).

I wasn't told to lay flat but to lay on my none LE side if laying down. I also can't say I was told not to use my FlexiTouch before going to bed - haven't had any issues with having to get up and 'run' on the few times I've used it before bedtime (primarily when I gone to Retreats) but could be different for others. On a similar note but no matter the time, I suggest that before you put on garments and start the cycle - go to the bathroom first as a 'just in case'.

3 days a week might be what will work for you - doesn't for me.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Aug 31, 2017 06:49PM VLH wrote:

Thanks so much for the input, Kicks. Being able to sit up or lie on my non-LE side would make the hour pass much more quickly. I was envisioning lying flat on my back trying to figure out how to hold my Fire overhead comfortably or watching TV with my head cranked at an awkward angle.

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Aug 31, 2017 09:07PM Kicks wrote:

Oh NO - I NEVER lay flat on my back! Uncomfortable! And more importantly IF I did dose off, when flat on my back I have a very bad nightmare (the same on always!).

Do/Position yourself how is best for you! No reason to not be comfortable. Don't lay on the LE side though.

Have you cell within arms reach in case you get a call while cycle is running. Have the channel changer within arms reach in case you want to change the channel. Have water/juice within reach if you are a 'waterholic' like me - have to have water in reach all the time. Same goes for 'snackies' if wanted.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Sep 4, 2017 01:20AM VLH wrote:

Great advice! Thank you, Kicks.

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Sep 4, 2017 01:52PM Kicks wrote:

Was just sitting here 'thinking' (well trying to think Loopy) and it came to me that I've never seen anyone comment on what they wear under the garment sections while running your MLD machine.

As the garment sections can not be laundered, I have sort of a 'uniform' that I wear to be sure the garment doesn't actually come in contact with the skin.

As I get cold easily, during winter, I wear a long sleeved turtle neck (not 'heavy' but 'snug' so no wrinkles) and snug sweat pants on the bottom. Also a pair of warm socks to keep 'toesies' warm. When I saw 'snug' I don't mean so tight that look like a stuffed sausage but snug enough so there are no wrinkles - not what I would wear to the store though but snug/smooth enough to comfortably wear under jeans instead of thermies when really cold outside. Actually, the fit for both top and bottom is about how thermies fit.

For summer, I still wear a light weight long sleeved t- shirt to keep skin off the garments themselves. For bottoms a pair of snug sweat pants cut off to knees or an older pair of cut off to knees leggings so not as warm and thinner material.

Also summer or winter, the few times I had to use FlexiTouch (away from home and forgot to take one) without a long sleeved snug shirt on there is a tendency for the garment to like to be a bit 'sticky' when removing.

I also have an electric fleece throw that when it's really cold I either sit on it and wrap around over body if sitting or throw over me if laying down. Its sort of like an electric blanket but smaller (like a throw) and cheaper than an electric blanket. The last one Hubby got at Walmart was between $20 - $25 last year. This was the 3rd or 4th one I've had. When I was doing Chemo, I had a hard time keeping temperature up close to 'normal' so was always 'freezing' no matter how many 'bankies' I piled on or how much clothes I had on so one night Hubby had found one at Walmart and brought it home to me. It helped so much, so after it quit working he got me a new one and I've not been without one since. Actually I use it year round as a throw when laying on the couch. So if you get cold easy, you might want to look into one.

So what other ideas work for others?

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Sep 5, 2017 09:50AM VLH wrote:

Thanks for the tips, Kicks. Nerdy

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast

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