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Topic: Truncal Lymphedema

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

Posted on: Apr 17, 2013 10:34AM

dechi wrote:

Hi Ladies, 

I've had some slight lymphedema in my arm and hand, especially my index and middle finger, which seems to be under pretty good control.  I have some lymphedema in the trunk area.  I get pretty deep indents from my bra.  I can see a difference in my back when I look at it in the mirror also.  It's not bad but I can notice it.  My question to all of you is what kind of pain or sensations do you get from truncal lymphedema.  I always seem to have a feeling of fullness and discomfort in my side on that side and some pain when pressing on the skin. I do wear some over-the-counter type compression camisoles and do some MLD but it always seems to be there.  Does anybody else have the same experience?

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Apr 17, 2013 05:18PM, edited Apr 17, 2013 05:20PM by hugz4u

Fullness is a good word to describe truncal, The back of my armpit feels like someone has put a hardboiled egg back there and it wants to get in the way of my arm moving smoothly back and forth. My truncal started at the back of my armpit with an internal itch that wasn't relieved by scratching about a year before I was in full swing. I don't get that itch anymore. People have all different symptoms but a sure sign is bra strap marks. Try ditching the bra so your lymph can run freely. You may notice a big difference in comfort.

If I don't wear my swell spots (they compress and make lymph move in the right direction)to bed under a tight cami then I get pinching in the day. That is a fair warning that I have to comply. Also I wear most days a tight Cami to work but the best is a UNDERARMOUR compression men's tee shirt. The label must say compression and get it in a size smaller than you are.

Welcome to our great threads where we can help each other with this nasty LE. Do ask questions.
You will want to educate yourself on LE by going to stepup-speakout.org where some girls from these boards wrote excellent info on all aspects of LE.





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Apr 17, 2013 05:21PM Marple wrote:

Here is the link to StepUp-SpeakOut http://www.stepup-speakout.org/

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Apr 17, 2013 06:06PM hugz4u wrote:

Thanks Marple. I gotta learn how to post a link. I am not tech savvy.

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Apr 17, 2013 07:19PM purple32 wrote:

People have all different symptoms but a sure sign is bra strap marks.

Sure is!  Hugz is right- 'indents ' suddenly wewe apparant in places I never ever had them prior to LE.  I am amazed that so called competent ( Harvard trained BS)  drs . do not recognize this as a tell tale sign.

You say you had " some MLD" .  Do you do this daily ?  This is suggested ( usually twice a day) as a part of your daily regimen as well as an evaluation  (and possibly therapy)  by a  qualified LE therapist.


Please do visit the website link  Marple posted and follow hugz advice on the compression cami.

Good Luck to you!

Lymphedema on LEFT. NO radiation. 2 clean nodes. purple32. Hope is our light ... in the night.

Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 05/01/2012 Lumpectomy (Left)
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Apr 18, 2013 11:42AM dechi wrote:

Thanks everybody!  Purple32, I know I should do it (MLD) daily but I get lazy sometimes.  I know I should make it a priority!  I have seen a LE therapist who did help my arm & finger LE a lot.  

2003 Stage 1 IDC, ER+, PR+, HER2+ with R MX, chemo w/CMF. Local recurrence 09/11, stage Ib, grade 2, ER+ 90%, PR+ 80%, HER2 + by FISH, 0/17 nodes, AC x 4, Taxol/Herceptin x 12, Hercpetin x 1 year, rads 33

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Apr 18, 2013 12:12PM Alicethecat wrote:

Hello ladies

My oncologist told me he thought I had truncal edema in October 2013, 7 months after having a mastectomy. Is this the same as truncal lymphadema?

In brief, I was getting swelling on my right side (mastectomy side) that seemed to build up and build up and then dissipate. Looking back, I think this was happening since after the mastectomy. I got a huge seroma and had to have it aspirated. The nurse wanted to do it a second time but it was so painful I refused!

But in case it gives hope...the good news is...it is so much better now! No treatment. Just healing.

It still hurts at the shoulder blade to raise my right arm but otherwise it is OK.

Hope things improve for everyone else too.

Best wishes

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR+, HER2+Surgery 02/07/2012 Mastectomy (Right)Chemotherapy 03/12/2012 Cytoxan, Ellence, fluorouracilChemotherapy 06/08/2012 TaxotereChemotherapy 07/02/2012 TaxotereTargeted Therapy 07/19/2012 HerceptinChemotherapy 08/17/2012 TaxotereRadiation Therapy 10/03/2012 External
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Apr 18, 2013 12:30PM purple32 wrote:

 Is this the same as truncal lymphadema?

In a word ? No.

Edema and lymphedema are two entirely different things, but I am *guessing*  your DR meant lymphedema-  ESP. since he called it truncal edema.

When my BS  FINALLY admitted I had LE she said :  " OK, so its not uncommon for edema to pool in an area after a breast surgery."  I said :  " Edema ?"  She said "YES. Fluid."     I said " What KIND of fluid ?"  She said :" Lymph" 

I replied,  " Soooo, LYMPH-EDEMA.  lymphedema, right ?"  She said : " Right".  It was like pulling teeth,

The best way to be sure is an eval. from a qualified  LE specialist/therapist ( NOT a  dr.)  Please visit the wonderful SUSO site for detailed info and do follow through.,  It's truly important.  http://www.stepup-speakout.org/

Be well!

Lymphedema on LEFT. NO radiation. 2 clean nodes. purple32. Hope is our light ... in the night.

Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 05/01/2012 Lumpectomy (Left)
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Apr 19, 2013 12:23PM dechi wrote:

I wonder why it is sooooo difficult for healthcare providers to deal with LE?  Never heard much about it before my axillary node disection (that doesn't look right) and NEVER heard anything about axillary cord webbing, which scared the living daylights out of me and I had to figure out what it was on my own.  Thank you Google!

2003 Stage 1 IDC, ER+, PR+, HER2+ with R MX, chemo w/CMF. Local recurrence 09/11, stage Ib, grade 2, ER+ 90%, PR+ 80%, HER2 + by FISH, 0/17 nodes, AC x 4, Taxol/Herceptin x 12, Hercpetin x 1 year, rads 33

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Apr 19, 2013 01:04PM carol57 wrote:

dechi, LE is definitely a DIY condition for too many of us!!

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Apr 30, 2013 05:36PM Ibethewife wrote:

My cancer surgeon said "you can't have lymphedema! I only removed 6 lymphnodes!" She then checked my arms and then admitted it. This was after my oncologist and the lymphedema therapist confirmed it. I have swelling under the arm, on the side and above the breast as well as the arm. At the end of the day if I don't wear the camisoles that compresses, it is very full and noticable along with being painful. I do better on long work days when I wear my sleave and my camisole. But with the latest arm surgery the camisole is difficult to get on and off, so I don't always wear it.

Dx 4/24/2012, IDC, 1cm, Stage Ib, Grade 1, 0/6 nodes, ER+/PR+, HER2-Surgery 06/06/2012 Mastectomy (Left); Prophylactic Mastectomy (Right); Reconstruction: Breast implants (permanent), Nipple reconstruction (Both)Hormonal Therapy 07/08/2012 FemaraHormonal Therapy 02/04/2013 AromasinHormonal Therapy 08/15/2013 Tamoxifen
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Jun 20, 2013 05:10PM, edited Jun 20, 2013 05:14PM by janinadj

I woke up from belly botton hernia surgery with big roll above my navel. Did not made big issue of it...., thinking that somehow my body changed after he pull all of the skin in......

Then few mounths down the road I had brest remowal do to the cancer and 24 lymph-notes, again, I woke up with my arm and siede under arm swelling, thinking it is after affect of the surgery....

Today 1 year later I know better but the main doctors/surgeon do not, I changed mu internist for one I trust better as I know her to an excellent doctor from taking care of my mother and I am trying now to get insurance company with her help to get me pump wrap for my body and sleeves for my arm...

The doctor who recognize it is lymphodema, was my radiation doctor, anyone before it ignore my question when I asked....: when this swelling will go down? how long the swelling usually stay.....

The sore spots and pains change places, in body trunck usually about 1-2 inches from my navel to the left and up about 3 inchees, swelling and sorness on my right body side and above the removed brest, sometimes in the back also. The arm usually under the right upper arm along the lymphnotes and a lot of swelling.......

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Jun 20, 2013 06:57PM, edited Jun 20, 2013 06:58PM by hugz4u

Sorry to hear you  have joined the "swell" group but we can help you. You can control and get the swelling down somewhat but you have LE for good. Usually it is less in the morn and more by night. Sounds like you have breast/trunkal/arm LE.

A extra tight shaper that comes up high into the armpit and far down the waist or a extra tight mens UNDERAMOUR compression tee will help you and may lessen the pain. Underarmour must day COMPRESSION

But....You need to see a well qualified Lymhedema therapist who can drain that fluid and teach you how to self massage it out.  See the website our lovely smart girls her wrote to help you with questions about LE. stepup-speakout.org for all your need including finding a therapist.

Do let us know how it is going and please do not ignore this because the swelling will become worse. Good news is that you can get a handle on it. 

Hopefully our LE experts here will advise you soon. Keep us posted and do ask questions. Getting educated on LE is the best defense.

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Jun 29, 2013 06:02PM, edited Jun 29, 2013 06:06PM by ronixx

Hi all,i have been reading your comments and i think my symptoms are what you are discribing.pain under armpit,on the chest wall and upper back.im not sure on swelling as i have gained weight since my treatment i had chemotherapy,and radiotherapy which was finished nearly two years ago.could this be what i have or could it be due to the radiotherapy? I had 9 lymph nodes removed from my armpit.

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Jun 29, 2013 06:09PM, edited Jun 30, 2013 10:40AM by ronixx

This Post was deleted by ronixx.
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Jun 30, 2013 12:02PM Binney4 wrote:

Ronixx, hello and welcome!Smile

Sorry about the worries that brought you here, but glad you found us. Usually the swelling and discomfort from radiotherapy resolves in the time since you did that treatment, so it's definitely time to get this checked out by a fully-trained lymphedema therapist. Here's how to find one near you (the "Therapist Locator" lists therapists all over the world, so that's a good place to start looking):
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

It's hard to recognize swelling in those parts of our bodies, so an evaluation by a therapist is extra important. Here's information from the StepUp-SpeakOut site about truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Please keep us posted! Gentle hugs,
Binney

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Dec 10, 2013 03:23PM LynnInColorado wrote:

I posted some of this under the "Shorter Radiation Protocol" topic. Anyway, I did 15 days of Rads ending late May. Skin wasn't too bad and normal mammogram recently. But, I DO NOT RECOMMEND unless you live far away from a treatment center. Most ROs in the Denver area won't do it. I asked my husband's RO why. (My husband was diagnosed with prostate cancer 2 weeks after my breast CA diagnosis. Fun times!) He said he will do it if pressured, but there are more side-effects. I have had 3 problems most likely from radiation, but the lymphedema (LE) was likely also due removal of 4 lymph nodes for SNB. My LE was primarily truncal, but has now moved down to mid forearm. It's very mild, mostly tightness rather than significant swelling, I also developed 2 MINOR issues: TIETZE Syndrome (inflamed rib cartilage just below affected breast) and MONDOR'S Disease, (subcutaneous thrombophlebitis) extending from below breast to belly button. I believe the last 2 would not be related to the surgery, but who knows?

TRUNCAL LYMPHEDEMA is what I started with and thanks to advice here and at http://www.stepup-speakout.org/ , I've found the right garments for me at this stage of my issues. Bras hurt my rib. Camisoles and tank tops cut into my axillary and truncal LE areas. So, after morning massage, I don (love that word), a men's UNDER ARMOUR v-neck short sleeve shirt from the Underarmour web site. Over that goes the old version of the women's REEBOK EASYTONE short sleeve shirt (with curved tape areas and still available on eBay). The Easytone sleeve is too short to stay put and thus 2 shirts. Also, if my swell spots bother my skin, I can put them between the shirts. Easytone seems to provide a lot more compression than the UA. Next I don my compression sleeve with top band over bottom of both sleeves. Add Swell Spot to underarm and/or lateral chest and back. Then gauntlet and I'm ready for my exercise regimen. Whew!!

I am a pudgy apple-shape 5'7" and 170 lb and wear a men's medium UA shirt and an XL women's Reebok Easytone shirt. I find that long sleeve button up shirts work best over all this as it just looks like you have a V-neck under it. Turtlenecks mock and otherwise work too! Hopefully by summer I can wear all this stuff ONLY when exercising/traveling by air/doing strenuous activities, etc. :)

Between Stage 0 and Stage1 lymphedema in arm and trunk, Mondor's Disease (superficial thrombophlebitis under affected breast) and Tietze Syndrome (rib cartilage swelling just below the affected breast.)

Dx 3/19/2013, DCIS, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR-Surgery 04/04/2013 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Radiation Therapy 04/25/2013 3-D conformal external beam radiation
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Dec 10, 2013 04:42PM Musical wrote:

Thanks for your post Lynn. Just looked up UnderArmour and great, it looks like I can get it in NZ. I too find that on occasions even with a VERY loose bra, I can still get sundry achings. I know its the bra because I get relief when I ditch it. Unfortunately I think Ive got some truncal LE.

Next I don my compression sleeve with top band over bottom of both sleeves.

How do you find the lymph flow in regards to the C sleeve over the top of the two other sleeves? Does this not impede the flow somewhat?

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)

Dx IDC, 4cm, Stage IIa, Grade 3, 0/13 nodes, ER+/PR-, HER2-
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Dec 12, 2013 01:49AM, edited Dec 12, 2013 01:49AM by LynnInColorado

It certainly seems like it could impede flow and I know this a concern at the wrist when compression sleeve overlaps the gauntlet or glove. However, the shirt sleeves aren't very tight on my arm and I find it more comfortable to have the shirts under the compression sleeve band. Maybe this is due to the higher compression pressure at the wrist that gradually decreases as you move up toward the shoulder.

Between Stage 0 and Stage1 lymphedema in arm and trunk, Mondor's Disease (superficial thrombophlebitis under affected breast) and Tietze Syndrome (rib cartilage swelling just below the affected breast.)

Dx 3/19/2013, DCIS, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR-Surgery 04/04/2013 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Radiation Therapy 04/25/2013 3-D conformal external beam radiation
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Jan 19, 2014 01:27PM FireKracker wrote:

been lurking here

I like this thread

Always looking for info.

I had a swelling a few weeks ago,trunk and breast,went to a natural dr and she told me to massage with castor oil

Hot damn it worked

Every hear of that one?

Focktober!!!!Pink stinks!!!!

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Jan 19, 2014 11:40PM mnmbeck wrote:

Never heard of it, but I have wondered if naturalists have any suggestions for this stuff.  It can't hurt, right?  How long after your surgery were you experiencing swelling, FireKracker?

Dx 10/8/2013, DCIS, 2cm, Stage 0, 0/4 nodes, ER+/PR+Surgery 10/24/2013 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)
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Jan 20, 2014 11:14AM FireKracker wrote:

I had my first. Surgery in 2010

Found the swelling a few weeks later.of course the surgeon didn't see it buth the RO did and sent me to therapy.

It comes and goes,but the castor oil did help real quick

Hey what ever works right?

Focktober!!!!Pink stinks!!!!

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Jan 20, 2014 04:08PM Dejaboo wrote:


FireKracker- I would like to hear more about how you are using the Castor Oil.  Did you make a Pack?  How long did you leave it on?  How often did you use it? What brand did you buy & where did you get it?   Thanks

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Jan 20, 2014 05:53PM RMlulu wrote:

Castor Oil...hum

Will be looking for details.

Trunk LE from the get go :( BC team sort of looked past, but after 4 mos post rads began PT. Trunk is constant (3rd girl) heaviness fullness uncomfortable. 6 mos post rads moved into arm.  Now compression bra, sleeve, gauntlet 20 hours a day, arm elevated, mld 3x a day, swell spot...have lost about 4cm, but oh what work :(((. Have a compression shirt, but wonder if it will push into another area...

Wish I could click my ruby slippers and wave a wand and it would be gone!

Dx 12/18/2012, IDC, <1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR+, HER2-Surgery 01/23/2013 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 03/14/2013 ExternalHormonal Therapy 06/01/2013 Aromasin
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Jan 20, 2014 10:14PM FireKracker wrote:

I used the castor oil in the morning and evening

I leave it on like any other cream that u would use for massage

I thing a small bottle is around six bucks

I leave it on till I shower and start all over again

Right now I'm good so I do it only once a day

I bought it in a reg.pharmacy but the brand I got is called good neighbor pharmaceutical

I bet Every pharmacy carries it.

Try it,u will like it..and if u don't let me no why please..

Gentle strokes just like any other stuff u use

Good luck and keep me posted

Focktober!!!!Pink stinks!!!!

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Jan 21, 2014 12:10AM mnmbeck wrote:

I bought some castor oil today...I figured why not?!  It is VERY thick and VERY sticky....did you actually leave it on?  I would imagine it would stain clothing, stick to everything, etc.  I  used it for my MLD, and then showered.  No change for me.  But, I may keep trying.  What else am I going to do with a bottle of castor oil?  LOL!

Dx 10/8/2013, DCIS, 2cm, Stage 0, 0/4 nodes, ER+/PR+Surgery 10/24/2013 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)
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Jan 21, 2014 07:45AM Dejaboo wrote:


Mnmbeck I bought some last night ( I am in MN too)...Maybe we got it at the same store!  LOL...I went to the Vitamin Shoppe in CR.

I am some how going to make a 'patch'...They say to make it with Flannel...Which I dont have so I will see what I have.  I am goign to hold it on with Saran wrap.

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Jan 21, 2014 10:40AM FireKracker wrote:

I don't find it sticky

And it does nothing to my clothes

I have a big problem with sticky stuff under that are and been. Using corn starch before the castor oil

Never used deodorant since I got the beast

Just keep rumbling it in lightly

Hey what worked for me maybe will not work for U.

Remember I started using it when I had a bad flair up,

Focktober!!!!Pink stinks!!!!

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Jan 21, 2014 11:21AM Binney4 wrote:

Could it be that the "rubbing" is what helped reduce the flare? Sorta like self-mld? I'm trying to think of a physiologic reason why castor oil applied to the skin would affect the lymph system and can't come up with anything (not that the lymph system makes any logical sense…!), but gentle rubbing would definitely have an effect. The Ayurvedic practitioners in India use assorted oils and herbs, both on the skin and orally, to treat all manner of swelling--a tradition with no particular known effectiveness, but certainly an example of "natural" interventions being tried since ancient times. Some of us have been researching the methods used in other countries in both Asia and Latin America--really interesting.

Do you know what caused your flare? 

At any rate, I'm so glad it has been vanquished--good for you!

Gentle hugs,
Binney

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Jan 21, 2014 01:16PM Dejaboo wrote:


Ok, So I tried making a patch from a wash cloth...securing it with saran wrap & then putting my soft bra over it to keep it in place.  That was rather commical & very hard to do.  ( I was just aiming for my side under the bra line where I have the most pain & swelling ( I seem to have alot more pain then swelling-always)  So I just dabbed some oil on the area...put the wash cloth over...then a piece of saran wrap so protect my bra from the oil...then my bra. (no massage...just dabbed the oil on)

I was not going to post this early on...As I do want to see what I feel like tomorrow & so on...

Next time when I do this I will look for something smoother & softer then the washcloth.

BUT I wore that for 4 hours & I have hardly any pain in the area right now. (I normally have constant pain there)  That has not happened since I was sick in Dec 2012 & didnt move for 4 days- didnt even hold a book.

Here is one link that I read about the Castor Oil:  http://curezone.org/forums/am.asp?i=1057592

I know it is about foot odor...But if you look at the comment # 76749 the person posts about Castor oil & the Lymphatic system...And also mentions a book I will be gettign from the library.

Yep, I am excited- LOL

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Jan 23, 2014 08:07AM FireKracker wrote:

I was waiting for u to show up Binney.

You no I have tried almost everything

Somehow this worked and ur answer made sense.

Yes I do no what caused my flair up

I peeled about 3-4 lbs. of potatoes..duh.

I still use it even tho I don't have any problems

Just a tip...if I'm not going anywhere that I have to get dressed up I put the oil on,then a short sleeve tee shirt,then a bra and then my clothes..

If I have to go out I don't do it in the daytime but I do this tx at nite for sleep

Focktober!!!!Pink stinks!!!!

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