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

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

Posted on: Oct 14, 2010 10:56PM

Estepp wrote:

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.

REALLY????????????????????

I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Oct 9, 2018 11:03PM - edited Oct 9, 2018 11:04PM by JO-5

Susan,

The one I watched on line was by JoAnn Rovig from Northwest Lymphedema Center. I have not watched her for about 4 years and when I tried to find it I could not get it. Maybe someone else knows if she is still on.

I learned a lot from this book, and I believe I was able to keep my LE under control with the massage described in it.

However my new therapist does not use this method. She does use some like this but not all. She was Vodder trained but has incorporated methods from other schools.

It is hard to explain just how she does it. She calls it "inch worm" Using the palm mostly she sort of does a half circle pushing down and circling upward or outward (depending on what area she is working on) releasing pressure on the upward or outward. She moves just a very little bit upward and does it again. That's why she calls it inch worm...because an inch worm moves just a bit. (That sounds weird probably but makes so much sense when you watch her do it) It is very gentle....just enough to move the skin. It's sort of like you're scooping with an icecream scoop in a half circle releasing at the top, very gently.

I'll stop right there because it is just too hard to describe. In lieu of anything else, I would use the massages in that book and also the first 15 minutes of the Lebeds exercises. (PICTURE OF THAT BELOW)

Remember everyone is different and she is mostly using the method I tried to describe, because of my arm. It has a firm area she is trying to reduce and it is improving. She says it won't get a lot better until I get the wrap substitute velcro thingie. I have an appointment to be measured.

Both can be purchased on Amazon. I wish I could explain better what she does.....but this book and the Lebeds DVD are good in my opinion.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 9, 2018 11:14PM susan3 wrote:

thanks Joanne. The Velcro wrap was given to me when they came out kinda "new". When I wear if all the time, my arm gets close to normal. Just a hard thing to keep on for me all day. I am still working a very little bit, as a hairdresser. Can't work and wear it. But it really is great when I wear it. I can't wait till you get your

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2-
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Oct 10, 2018 12:04PM SheliaMarie wrote:

Jo, I don’t understand why you need to be measured before ordering the circaid. The beauty of the thingy is you adjust it as needed. Regarding the hand part of the contraption, you trim it to fit after you get it. Honestly, I had zero issues with ordering it and taking it to my therapist so she could show me the proper way to use it.

Dx 7/7/2008, IDC, Left, 2cm, Stage IIB, ER+/PR-, HER2- Surgery 7/10/2008 Lumpectomy: Left Chemotherapy 8/7/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Radiation Therapy 1/1/2009 Whole-breast: Breast, Lymph nodes Surgery 2/1/2009 Prophylactic ovary removal Hormonal Therapy 2/15/2009 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 5/24/2017, IDC, Stage IV, metastasized to bone/other, 1/1 nodes, ER+/PR-, HER2- Targeted Therapy 5/25/2017 Kisqali Hormonal Therapy 5/25/2017 Aromasin (exemestane) Chemotherapy 4/10/2018 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 6/10/2018 Halaven (eribulin) Radiation Therapy 6/18/2018 External: Chest wall Chemotherapy 8/26/2018 Ixempra (ixabepilone) Dx 10/30/2018, IDC, Stage IV, metastasized to lungs Dx 11/7/2018, IDC, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Radiation Therapy 11/12/2018 External: Bone Chemotherapy 11/12/2018 Xeloda (capecitabine)
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Oct 10, 2018 03:48PM Binney4 wrote:

Not sure if this is the one you mean, Joanne, but BrightLifeDirect is having a Circaid sale right now. Also, take an extra 10% off with by using the code TEN4MED.

https://www.brightlifedirect.com/circaid-arm-reduc...

If that's the one you want, it might be an auspicious time to buy it! (Just to be clear, I have no affiliation whatever with BrightLifeDirect, but I've bought some products from them and love their customer service. Good folk!)
Binney

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Oct 10, 2018 06:31PM JO-5 wrote:

My therapist is having me try the Juzo. She said the velcro lasts much longer than the ciraid. It is adjustable, and reversible cream to black, and if I don't like it or can't wear it I can return it.

She said it will be flexable enough for me to bend my elbow. I don't know how much it will actually be but she thinks about $123 - $125 after my senior discount (seniors get a discount on Wednesdays ) and with a script from the dr it is tax free.

Thanks ladies.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 10, 2018 06:52PM - edited Oct 10, 2018 06:54PM by JO-5

I think this is it.....but I will not have the hand wrap. In 14 years, no matter what, my hand and wrist has never swollen at all. She says they have found that women who do not swell at the wrist and hand have extra lymph drainage there. (Not sure I understand that but for whatever reason .... not getting the hand part) I have a gauntlet....never used.

This is the wrap reversed and no hand cover.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 11, 2018 12:55AM VLH wrote:

Have any of you that use a pump had an issue with the Velcro on your lower garments losing some of the stickiness" / adhesion? The tabs that snug up the waist often come undone, even though I've only had the pump a year. I've become fairly adept at holding the waist tabs in place as I gracelessly fling myself onto my high Queen Anne bed, trying not to bend, but it's not pretty and I sometimes get so frustrated that I give up for the night.

I recall the pump rep saying insurance will only pay for new garments every five years. If I make it that long, I'll be on Medicare & doubt they'll pay anyway. The heavy garments contribute to night sweats so they'll probably require fumigation by then. 🤢

Thanks, Lyn

Dx 5/20/2016, IDC, 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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Oct 11, 2018 08:25AM - edited Oct 11, 2018 08:25AM by JO-5

Lyn,

I have a Lympha press pump. At the time I got it my insurance would not pay on a Flexitouch.

Mine is one arm and the whole torso. It closes with zippers, the straps to tighten have velcro and I never had any problems.

However ... I never layed on the bed to use it. I sat in a recliner. Much easier to manuver.

I am not able to use the pump at all now because of the graft in my chest.

Truthfully, I don't think the pump ever did all that much good anyhow and I've been reading that pumps are not being used all that much now.

Having said that... you can purchase stick on velcro that might be able to replace the velcro on your strap. Auto Zone (car supply store) has super strong strong stick on velcro. Also if the 'hook" side has a lot of lint or debris in it use a brush or tweezers to pull it out and clean it.

I am going to try the wrap my therapist is recommending just because she says the velcro lasts longer......If it doesn't ....I have a heavy duty sewing machine and I will just replace the velcro.

Good luck. The visual of "throwing yourself" on your bed made me smile.

We might as well laugh....makes fewer wrinkles!

Goid luck....gotta get off here and do my massage for the morning! Grrrrrr.....thus gets old in a hurry doesn't it?.

YOU ARE ABSOLUTELY RIGHT.....MEDICARE PAYS NOTHING FOR LE COMPRESSION.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 11, 2018 09:45AM susan3 wrote:

I don't know why it isn't taken seriously. Even my doc, who is a great onc, has never asked me about my arm. And when the other started to swell, not sure if it's cause of nodes or what, I said do you want me to pull my top off so you can see it.....not just feel around,.....cause it does look real swollen. He said no.

Why, why is this ignored. I don't get it

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2-
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Oct 11, 2018 03:01PM Vargadoll wrote:

Question for all the LE ladies. Have you ever had a contrast dye mammogram? I am scheduled to have one soon and it will be my first mammogram done this way. I just mentioned it to my PT last night and she asked why the ordered one that way. I assumed its because my LE boob is so lumpy. She told me to do my research and reach out to my "LE friends " for information.

Susan- I do the samething with my Flexitouch! ! I hold it and fling myself on to my bed! Lol.. so yes my lower velcro is not hooking as strong. I will just replace it myself when it totally loses its grip!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 11, 2018 04:36PM susan3 wrote:

can't help you. No bobbys left here 😳

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2-
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Oct 11, 2018 06:08PM Binney4 wrote:

Ladies in the U.S., YOU CAN HELP get Medicare to care about LE. We currently have a bill, called the "Lymphedema Treatment Act" before both houses of Congress. It will assure that LE treatment and garments are paid for by insurance. If you're not yet on Medicare, consider this: most insurance companies look to Medicare when considering what to cover, so when Medicare doesn't cover it, we're all at risk. Thanks to the dedication of so many lymphers, the Lymphedema Treatment Act is the bill with the most sponsors in Congress. (Yes! Amazing!) Even so, this Congress being what it is, we still need all the voices we can raise to make sure it gets passed before the new crop of Representatives and Senators take office in January and we have to start over with convincing them to sponsor the bill.

Please go to this site and learn how YOU CAN HELP with a few simple phone calls or emails (phone calls are better.) Better yet, show up in person at any events in your home district and make sure your Sens and Reps know how to vote on this one:

https://lymphedematreatmentact.org

We can do this! YOU CAN HELP! Please do!
Binney

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Oct 11, 2018 09:40PM JO-5 wrote:

Binney,

Will do it tomorrow morning for sure! Late....had a hard day....bedtime!

Spirit is willing but flesh is weak .....went for a day trip and some shopping ....first time since fly bite.....and I am done in.

I will click on that site tomorrow and do my part.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 12, 2018 03:30PM VLH wrote:

Thanks for the responses. I have two large, heavily coated dogs. Despite my best efforts, I'm sure some dog hair gets nabbed by the Velcro so that may be contributing to the problem although I have no issues with the Velcro on the chest, arm, or thighs. It's only the waistband. I'll have to try the tweezers. My pump is a Flexitouch, Varga.

I've not had a mammogram with contrast so can't offer any input.

Lyn


Dx 5/20/2016, IDC, 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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Oct 12, 2018 03:38PM LindaKR wrote:

In the past I had custom one-piece glove/sleeves because using two pieces caused addition hand swelling, but now that I have Medicare, it's not covered, and they cost 700+++, so needless to say I'm trying to find something that will work.

I say an experienced fitter and she recommended, in fact sold me, Jobst Bella Strong glove, which is longer and the Juzo soft sleeve. I've worn it 2 days now and I notice that the Jobst seams appear to be pulling apart, and the palm of the glove is already pilling a little. Also, first day way more hand swelling because of the double compression, but the second day I put the glove on first so that i was under the sleeve and that seemed to work better, but it still seems that the double compression is an issue - do you know of a sleeve that has less compression at the wrist, or any other suggestions would be great. Thanks.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Oct 12, 2018 08:39PM JO-5 wrote:

Vargadoll,

I've never heard if a contrast mammogram. I've heard of contrast MRI of the breast....but not mammogram.

Linda,

I didn't even know there were sleeves with the gauntlet attached. It must be a custom and they are always more costly.

Hopefully this Lymphedema Treatment Act will pass.

I don't understand why Medicare pays for 12 bras a year and a prothesis only 1 every 2 years! Who needs 12 bras a year? I've never had that many.....but my prothesis fell apart.....and I'm not due another one until January! I have to pay out of pocket and they are NOT CHEAP!!!!

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 12, 2018 08:45PM JO-5 wrote:

Vargadoll,

Found this on the internet:

Contrast Enhanced Mammography

Contrast Enhanced Spectral Mammography (CESM) is a special type of mammogram that is performed after an IV injection of X-ray contrast (iodine). CESM shows all of the information of a regular mammogram but also shows areas of increased blood supply. Breast cancer typically has a greater blood supply than normal tissue so it is highlighted on the images.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 12, 2018 08:49PM - edited Oct 12, 2018 08:50PM by JO-5

Linda,

Is this what at you are talking about?


Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 12, 2018 11:15PM LindaKR wrote:

JO-5

That is sort of like my customs, except they have fingers. I can't wear gauntlets, have to have a glove, or my fingers swell up like sausages. 😔

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Oct 13, 2018 08:18AM JO-5 wrote:

So sorry Linda, I looked all over the internet and did not find sleeves with arms attached. Have you tried different brands.....that might be a little less expensive. My sleeves are Juzo and seem to be very well made.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 16, 2018 01:04PM - edited Oct 16, 2018 01:05PM by JO-5

Binney, you were right once again.....Remember when you told me at the beginning of my fly bite saga .... that the redness may never go completely away?

My therapist told me yesterday that she attended a seminar given by Ohio State University by a lymphedema therapist.

One of the things he talked about was the redness that remains or comes and goes with a lymphedema flair, and especially so with some kind of bite. She had a name for it but of course I've forgotten what it was.

My arm is just pink now, thickening better but still there, swelling much better but still there.

Fitting for velcro wrap is next week.

Hope you and all the other "swell" ladies are doing well.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 16, 2018 03:17PM VLH wrote:

Good luck with the Velcro wrap, Joanne. I can't believe what an ordeal you've had!

I wanted to try one of the Velcro gadgets, but my therapist had been told that they didn't work well for extra large arms. After watching a video of the donning process, I don't know that I could readily reach to get the top portion closed properly. I went to my sleeve provider and asked that she add extra ease so that I can hopefully tolerate it for more than a couple of hours at a time.

Lyn

Dx 5/20/2016, IDC, 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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Oct 16, 2018 06:07PM JO-5 wrote:

Lyn,

I am just a bit leery about the Velcro sleeve. I am sick and tired of laying out big bucks for things that do not work, and I'm afraid this might be one of those times.

My therapist wants me to wear my regular sleeve as much as I can through the day, especially when I'm up and working. I managed an hour today. Sometimes it stings or burns my skin. Other times it is just fine. It is a Juzo. I wonder if there are sleeves that are made of smoother material?

I looked on line and found some but they are $50. I have 3 of the Juzo's so I will just try to wear them...... This Velcro thingie is going to cost in the neighborhood of $135.....and my prosthesis fell apart....and insurance will not pay for one until January! Those are way over $100. This is getting to be very costly.

I wonder if your therapist could get a demo of the Velcro wrap and see if it would be possible for you to get it on? I go for the fitting next week and my therapist told me they will show me a couple of different kinds, and even let me try one.... Perhaps you could find a medical supply place that would do that for you.

This can be so discouraging! One thing I am going to do is try my very best to lose some weight. I know the last time I lost a lot of weight my LE was much better. So far.....I've gained....7 pounds! Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

Good luck!

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 16, 2018 07:01PM Vargadoll wrote:

Joanne- thank you for the info on contrast dye. I see my oncologist next Wednesday and I'm going to ask more questions for sure. As far as sleeves go I have always wore Juzo until a few weeks ago. I saw a sleeve with humming birds on it and wanted one. It was made by Lymphedivas. It took 2 months for insurance to approve and pay for it. I love it!! It's so soft and never slides down. I have ordered 4 more different ones. On the website under "Shop" they habe a section called discount seconds. When you order one you get a card telling you why it's a second. It's usually a dye lot shade issue or the seamless weave is line is off a stitch. (Which I just wear on the toward my body so no one sees) I'm glad you are doing so much better!! I'm swelling some and I think it's due to the weather changing. Plus we just closed our pool so I haven't been swimming in over 3 weeks!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 17, 2018 08:21AM JO-5 wrote:

Vargadoll,

I looked at that site, and their measuring chart. I'm not sure I would measure right or get the right size.

I think next week when I get measured for the velcro wrap I will ask the fitter what size sleeve I should get. Maybe they will even have something smoother.

I just want a solid color one as close to my skin color as possible.

Thanks. We all can use as much info as we can get.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 17, 2018 06:46PM Vargadoll wrote:

I just ordered the same size as my Juzo. I have 3 of the beige ones now. They are $32.50 ($37 with shipping if you order one at a time) my arm loves them...lol Hope you find one you tolerate well. Did you happen to read the history behind Lymphedivas?

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 25, 2018 07:26PM - edited Oct 25, 2018 07:37PM by JO-5

Ladies,

I was measured yesterday for my Juzo velcro wrap. It has to be ordered and won't be in for a week.

I've researched it and it sounds good....but I was not happy with the person that measured me. #1 She did not know that this one is reversable from black to nude. When I assured her it was she said, "I don't see how it could be".....then turned it inside out and saw that it was.....OK.....here I go again with someone that doesn't know their job!

#2....After she measured me I asked what size I was getting and she said she did not know yet! I was assured that this lady was really good and would know what to give me. (I'm hoping she just had to compare my measurements with the chart)

#3 When she told me the price it was way over what my therapist had told me. I asked if that was with my senior discount for coming on Wednesday...and no taxes because I had a script. She looked dumbfounded and said, "Oh, this is Wednesday isn't it?"

I guess I've been through so many bad therapists and techs it has become a pet peeve. People that don't know their jobs!!!!

OK....got that off my chest. Ha...still doing the massage twice a day. Arm still a bit red and swollen. I hope this new wrap works.

I am having trouble wearing my sleeve. It irritates my skin. Anyone have a remedy for that?

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 26, 2018 02:09AM Binney4 wrote:

Jo, does your sleeve irritate your whole arm, or only certain spots (like the elbow, for instance)?

Anxious to hear how you do with the wrap!

Hugs,
Binney

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Oct 26, 2018 06:50AM JO-5 wrote:

Binney,

Mostly the inside of the elbow, then the red area. but eventually the whole arm.....and that's when I take it off.

Yes I am anxious to see if I can tolerate the new wrap and also if it helps.

The massage seemed to be really helping but now...not so much, unless I do it more often.

The therapist said this is not going to get much better until I use the wrap.

Thanks.....hope you are well.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 26, 2018 07:36PM VLH wrote:

Ohmigosh, Joanne, that's the "good" therapist??? Let us know about the Velcro sleeve once you take it for a test drive. My sleeves are also Juzo. My custom sleeve is rougher than the butterfly-patterned over-the-counter sleeve I tend to go back to because it's not only smoother, but stretchier so easier to don.

VargaDoll, I'll have to keep Lymphedivas in mind when I switch to Medicare. Thanks for sharing your experience with them.

Lyn



Dx 5/20/2016, IDC, 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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