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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 09:56PM

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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Aug 21, 2018 11:55AM SheliaMarie wrote:

Mine is Puffy McPuffins 😜

I feel like all of our le is so completely different from everyone else’s. Such a strange condition.

I was unable to do MLD on my arm, as the fluid tended to get stuck in my chest... where my mets are. See, my mets came back with a vengeance in all of my lymph nodes on the left, from cervical, axillary, supra and sub clavicular and pectoral. Same side as LE. Wrapping helped tremendously, though. I lost over FIVE CUPS of fluid after wrapping a few days a week for three weeks.

Jo- if you don’t mind telling me, how did your angiosarcoma present? I’ve read that it’s rare, and until you, I’d never even heard of 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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Aug 21, 2018 02:23PM - edited Aug 21, 2018 02:40PM by JO-5

SheilaMarie,

As usual anything that happens to me is different than the way it happens for most.

On my lumpectomy scar exactly where they did the radiation boosts 10 years almost to the day, I noticed a red bump. Bright red (not those dark red dots we get as we age) and it sort of looked like a pimple but no white head on it. Dr had me wait a bit to see if it went away and it did not. It did not hurt, but was a little tender. Core biopsy showed secondary angiosarcoma (caused by the radiation treatment which was 35 treatments and 3 boosts.)

(different than primary breast angiosarcoma)

I had a wide excision with very wide clear margins. It all healed well and lab showed nothing in the entire specimen removed. The consensus was it had all been removed in the biopsy.

One year almost to the day another similar spot right near the boosts scar. Dr did a core biopsy that day .... was not going to wait this time. It was secondary angiosarcoma again. I had another wide excision to get it out as soon as possible. This time margins were clear but close.

Since surgery is about the only and best treatment ( chemo doesn't help much and if course no more rads) we decided on a mastectomy getting as much radiated tissue and skin as possible. The entite specimen had no cancer of any kind. Thinking and praying it had all been removed in the wide excision.

My dr in practice over 40 years had only treated 3 cases and 2 of those were sent to him from other drs. Only 1/2 persent of people getting radiation treatment ever get Sec. Angio. My dr also said it was the smallest he had ever seen ..... and low grade, because most women wait too long thinking it is nothing and it is mistaken for infection etc. so often.

Most cases present as purplish blue bruise areas and are dx as radiation fibrosis.

I had many biopsies on that breast (at least 5 or 6) through the years after 04 that were purplish bluish bruised looking areas and none of them were cancer.....they were indeed just radiation fibrosis and inflammation from raduation.

Biopsy is the only way to dx Sec. Angio.

I had to have a lat-flap to cover the huge area removed and me being me .... half of that went necrotic and I had a surgical debridement, and a split skin graft from my leg to cover that area.

I chose not to have reconstruction because of all the issues I have with everything.

That was 2014 and 2015. 3 years this month and so far so good......until that doggone deer fly bit me.

(Now you all know why I went bonkers when my PCP thought cancer...in my arm...although the arm would be extremely unusual place for sec. angio to appear. )

If you google Sec. Angio it will scare you to death.....but there are a lot of survivors out there. I am in contact with a lady that is 13 years out and doing well. We both watch ourselves closely and report any changes immediately to our Drs.

It is very very rare, but something to be aware of. I asked my dr why we are not told about this possibility and he said "Because no one would get radiation and the death rate would be much higher" (I was not pleased with that answer)

Now they have ways to check to see if radiation is necessary, also many don't require what was standard back in 04.

I hope this answered your question and I hope it does not scare the bee geebies out of you. It is RARE RARE RARE!

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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Aug 21, 2018 03:46PM MinusTwo wrote:

Jo - if you have a good dermatologist, that's a great idea. Can't hurt anyway.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 21, 2018 03:53PM SheliaMarie wrote:

How scary, jo! I should pay more attention to things, but honestly, I probably wouldn’t have thought anything of a bump, as I already have skin issues. Thank goodness you did pay attention

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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Aug 21, 2018 04:53PM JO-5 wrote:

Minus,

I am going to see what this new therapist says.

I will ask her opinion about a dermatologist.

I have wondered why no one tried prednisone.

Sheila,

I may not have thought much about it if it had not been on the scar, as I have blemishes and bumps all over. Now every tiny thing is enough to throw me into a tail spin. My rule if thumb is if it gets any bigger in a few days I call the dr. If it seems to fade and get better I try to forget about it. The bumps I have had on this arm so far have gone away and CANCER DOES NOT JUST GO AWAY

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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Aug 22, 2018 07:40AM JO-5 wrote:

I just want to say this morning......I hope my post about the Sec. Angio did not frighten anyone.

Sheila ask what it looked like and I feel everyone should be aware.

Keep in mind.....only 1/2 percent ever get that. If you have a "bump" it is most likely just a bump.

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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Aug 22, 2018 10:16AM SheliaMarie wrote:

Jo - I cannot imagine how that could’ve scared anyone. I appreciate your post. Knowledge is power. And again, it is incredibly rare... which you’ve stressed. Please don’t feel like you’ve done anything wrong. Xox

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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Aug 22, 2018 12:04PM - edited Aug 22, 2018 12:04PM by Vargadoll

Joanne - I felt that you were educating me! I knew nothing about it! Just like the LE! We should know every possibility with all our treatments!

"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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Aug 22, 2018 12:44PM - edited Aug 22, 2018 12:47PM by JO-5

Sheila and Vargadoll,

Thank you. When I was first dx with the sec angio no one wanted to talk about it. I got a few that were really nice but some that were just plain scary.....then the discussion just stopped.

I feel that the drs should tell their patients all the possibilities. If I wasn't the very Vigilant type I would never have seen that place on my scar.

I feel that I have one of the best breast cancer doctors but even he doesn't know much about lymphedema.

When I first realized back in 06 that my arm was bigger than the other and I was having a little bit of pain I showed it to him and asked if I should get a sleeve. He said you don't have lymphedema I can show you lymphedema.

He had a nurse at that time that had been with him his whole practice. She told him that my arm was bigger and to write me a script for a sleeve. When the fitter came to measure my arm she looked at the script and said, "There is no way you can wear a sleeve this tight and I am not going to order this for you." She said at the time, "These Drs have no idea about lymphedema and what kind of sleeve to prescribe." Thankfully she was a good fitter and the sleeves did well for me.

So thanks again ladies for the kind words. I have certainly learned more than I ever wanted to know about breast cancer, secondary angiosarcoma, lymphedema, and deer fly bites. If I could help anyone else I'm glad to.

I just hope and yes praying that this new lymphedema therapist knows what she needs to know.

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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Aug 22, 2018 02:06PM MinusTwo wrote:

Jo - I agree and thank you for furthering my education. All of us have had to learn WAY more then we ever wanted to know in order to advocate for ourselves. I always cringe when I read a post that says "I'm having exchange surgery next week, do you think I should find out about anything about implants?" or "my doc told me not to worry my pretty little head." Knowledge is power. Thanks for sharing. Looking forward to hearing good news about your new LE therapist.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 23, 2018 08:15AM - edited Aug 23, 2018 08:17AM by JO-5

It boggles my mind how little I knew back in 04. I learned fast, but not about sec angio. That was a broadside!

I had to learn about LE on my own, with the help of Binney and the rest of you ladies, videos and books.

The next thing I knew nothing about was the lat flap and I was so undone about the angio that I did not know what to ask about the plastic surgery. Everything I found was rather positive until I found the subject on here.

The PS said about the center of the flap failing that it was just the skin and an easy fix. Well, it was the muscle as well. Of course it was " the first muscle he had go necrotic in 30 years." (Still don't believe that)

After the angio dx and lat flap, I research EVERYTHING.

I like my drs, but I will never take their word for gospel again.

My old PCP was the most honest. He told me that medicine at its best is just an educated guess, and if tests are not definitive ..... they have to guess.

I read a lot on these boards that make me cringe........but I was much the same when this all started.

Live and learn!

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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Aug 23, 2018 12:54PM hugz4u wrote:

since bc Ive made dr google my friend on educating myself with my treatments. I make sure I stay away from miracle type websites and surf the university, medical based or John Hopkins type sites. Doctors usually hate it when you say. “I researched it on somewhere on the net” Instead I state matter of fact my opinion and which medical journal or university study I read and make sure I know what I’m talking about. I sometimes bring a print out but keep that in my purse if needed. I don’t want to intimidate them

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Aug 23, 2018 04:36PM JO-5 wrote:

hugz,

I do the same thing... usually John Hopkins University, MD Anderson, or Mayo Clinic. Because I live in Ohio I often quote Cleveland Clinic. I don't even mention "internet", because if you do you get this

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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Aug 24, 2018 04:49PM flowergal wrote:

Jo- I love the catoon! I do hope you are doing OK.

Hello to everyone- I have been walking and now up to 2 and 1/4 mi. daily . Thanks for the info on the Lebed exercise. I will look into it.

Hope everyone has a good weekend

Dx 1/2018, IDC, Left, 1cm, Stage IB, Grade 1, 1/1 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole)
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Aug 24, 2018 09:14PM hugz4u wrote:

jo. To funny cartoon. Awesome funny! Yup all those sites you mentioned I use when needing to know something of value! Any sites selling anything I run from!

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Aug 27, 2018 01:52PM - edited Aug 27, 2018 01:59PM by JO-5

Ok...reporting on new LE therapist.

I don't know yet! Ha.

Today's evaluation lasted 1 and 1/2 hours. She is very thorough if nothing else. She asked me more questions today then the other two therapists that I've had, asked the whole time I saw them.

Then she had me put on a gown and looked at the whole situation. She told me to do the massage the way I had been doing it but a little bit different direction because of my scars.

She does not want me doing the Lebeds, because of the lat flap scars and the scars and loaf under my arm until she watches the Lebeds DVD. That was the only thing I mentioned that she was not familiar with.

She has LE exercises that she has patients do but did not give me any because she wants to see the Lebeds.

She was very concerned with my back scar and in her words, " very tight and hard and looks painful."

She seems very knowledgeable, and has a lot of common sense. She wants me to start wearing the sleeve one or two hours at a time to see what it does.

I will see her next Wednesday. She wants to see how my arm looks after a week of Massage and wearing the sleeve. I have no idea what she will do then.

She is not brand new at this and has been doing it for a while. She also volunteered that she talks to other lymphedema therapist about different situations and I got the feeling she wants to talk to someone about me.

She is doubtful that I ever actually had cellulitis. She said if it was really cellulitis I would have seen some difference within a few days. She was really appalled at 39 days of oral antibiotics. She said if it had been cellulitis and had not responded to oral antibiotics I should have been in the hospital on IV antibiotics but probably because there was no fever and no warmth they did not do that.

I will let you know after next Wednesday what she does and what I think.

Hope all of you are doing well and your lymphedema is under control.

So. I'll be doing the massage and wearing the sleeve, (on my own one more week.) Anxious to see if she actually does anything next week.

Holding judgement until I see what she does.

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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Aug 27, 2018 06:45PM Binney4 wrote:

Joanne, thank you for the report. This sounds really promising, and I'll be anxious to see how it develops. I'll also be interested in her assessment of the Lebed, especially the15-minute opening session. Glad you introduced her to it!

Also glad she seems to have a group to share ideas with. I think that's a great way for therapists to grow and to widen their experience, since LE can take such strange turns.

Holding out hope for this one! Gentle hugs,
Binney

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Aug 27, 2018 08:23PM JO-5 wrote:

Binney,

The only problem is.....there is a dispute about the insurance. Not sure it is going to be like my insurance said.

My ins is insisting since I have out of network coverage they have to take what my ins.pays.

This physical therapy place is owned by Cleveland Clinic but the hospital the pt place is affiliated with is not on my insurance.

My ins says as long as they are a medicare participant they have to take my ins. I just have a higher co pay.

It will be too bad if I can't continue with her because I do have a good feeling about her.

She would like me to come twice a week but only doing once a week because of the expense....$55 a visit if my ins is right......$100's if not.

Big sigh.....rolling eyes!

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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Aug 27, 2018 09:38PM hugz4u wrote:

Jo, sounds like your making turning a corner and making headway with this le girl. Hoping it all turns out.

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Aug 27, 2018 09:56PM - edited Aug 27, 2018 09:59PM by JO-5

hugz,

I have had soooo much trouble with LE therapist.....and I'm going to be so bummed if this one turns out to be really good and I can't go because of the expense.

LE therapy is really expensive. My daughter is in this type of work and knows the language. She said if they won't accept my insurance's payments/ or my insurnce won't pay the full amount, I can give permission for them to talk to her and she will see what she can do.

We'll see, but I just have a gut feeling this is going to be extremely expensive! 😟😢

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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Aug 28, 2018 12:13AM Binney4 wrote:

Sigh! In order to have LE you have to be independently wealthy. Funny they don't tell you that when you first sign up for breast cancer, y'know?

But hey! For those of us in the USA, the Lymphedema Treatment Act, which will provide insurance coverage for our LE garments, is making some surprising headway in our contentious legislature. PLEASE go to here to learn what's happening with that and see how easy it is for YOU to pitch in:

https://lymphedematreatmentact.org

Together we can make a difference!
Binney

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Aug 28, 2018 12:37PM hugz4u wrote:

Onthis subject I just posted on another thread SOME not all of my out of pocket expenses. Jo I hope you get what you deserve. Good care and coverage.

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Aug 29, 2018 08:07AM GmaFoley wrote:

After my longgggggg plane trips to Rwanda and back (32 hours of travel out and 39 hours on the way home) - I am a firm believer in using compression sleeves and socks. I used mine and had no problem. Another team member said they were too cumbersome for her legs. She swelled up like a balloon for 3 days and had to use compression socks almost the whole time we were there. Just thought I would share that experience.

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Aug 29, 2018 08:18AM JO-5 wrote:

YES! Good for you Gma.

One of the very first things my new therapist addressed was wearing compressiom when flying or going anywhere there is a high altitude. In fact she said, "If you are planning a car trip to Denver.....wear your sleeve and gauntlet (because ordinarily I do not ever wear the gauntlet as I have never had any hand swelling )

Made me wonder about the LE ladies that live in Denver!?

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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Aug 29, 2018 08:25AM JO-5 wrote:

I have a question.

I know there is a sleeve/compression device that uses velcro that can be used instead of wrapping.

Do any of you know the name, brand, and cost of this device. New therapist wanted to wrap me but after talking to me decuded I am not a good candidate for wrapping .

Some of you say you are not good at massage.....well I absolutely cannot wrap and never had anything that aggravated me more.

Any one have any info on this new device and how does it feel.....can you move with it on, especially pricing, because my medicare advantage will pay nothing on it.

Thanks

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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Aug 29, 2018 08:34AM SheliaMarie wrote:

Lymphedemaproducts.com

Brand: CircAid

Reduction Arm Kit

$139

This is what I bought. Therapist really likes it. Works as well as wrapping. I cannot do massage or wrap myself, so this is my go to :)


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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Aug 29, 2018 09:21AM JO-5 wrote:

Thank you Sheila,

I already looked it up and read all reviews.

Does the velcro wear out as soon as some say.....Can you do much with it on or do you just wear it at night?

I bookmarked it and the other one they show and will ask the therapist about it next week. Price is much less than I expected.

Thanks

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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Aug 29, 2018 10:05AM SheliaMarie wrote:

it comes with one extra set of Velcro. I don’t use it often, so I don’t know how often it’ll wear out. Sorry.

It’s much less cumbersome than being wrapped. My favorite part is that I can take it off to do whatever and then put it back on.

It’s indicated as a night garment, but my therapist recommended getting this type as it doubles as a replacement for wrapping. I’ve only used it as wrapping. Haven’t used it at night.

Hope his helps. And hope you find one that works for you :)

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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Aug 29, 2018 05:45PM - edited Aug 29, 2018 05:45PM by JO-5

Thank you Sheila. I have it bookmarked and will show the therapist next Wednesday.

I for sure cannot wrap myself and did not do well when the other therapist wrapped and this one doesn't cost as much as I thought it would.

Will let you all know what the therapist says.

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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Aug 29, 2018 05:46PM hugz4u wrote:

Jo try brightlife direct. I have I think circaid but my therapist is not fancy on it because it doesn’t overlap by half like short stretch wrapping does. I can wrap but I need to practice every couple months or so to not forget

Stella does it really work as good as wrapping?

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