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Old 08-14-2009, 11:04 PM   #21
naturaleigh
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Re: lymphadema!

Micheleu,

There is a moon shaped, styrafoam filled pillow that fits under your arm. I was told to wear it at night, but with a bra on, you get more pressur. Since I don't wear a bra at night, I try to wear it some at night while relaxing.

I would think something would be pretty easy to make. Something circular with stryafoam chips in it that will fit in your bra under your arm.

It really is amazing how well it works. I find this works better than the garments I was told to wear.

There is also something call a reed sleeve that is like a big sleeping bag you wear at night. This does not help ME as much, but everyone is different.
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er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 08-15-2009, 04:15 AM   #22
yankeebikachic
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Re: lymphadema!

can you sleep with your arm elevated?
I sleep with my arm elevated over my head, on my pillow. Helps keep my arm from getting 'frozen' and immobile.
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4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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Old 08-15-2009, 12:56 PM   #23
Sandra in GA
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Re: lymphadema!

Naturaleigh,
Could you please tell me the name of that pillow or the maker?
Thanks,
Sandra
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Old 08-16-2009, 06:32 PM   #24
Soccermom
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Re: lymphadema!

http://www.noblemed.com/optishape.htm

FYI,This company also will send you a FREE lymphadema alert bracelet (which I have utilized many times) just click on the link on the left side of the screen

Last edited by Soccermom; 08-16-2009 at 06:36 PM..
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Old 08-17-2009, 02:44 PM   #25
fauxgypsy
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Re: lymphadema!

My husband went with me to a LANA certified therapist and learned to do the massage. I had some trouble with my arm but my side and back were involved as well. For me, it has to be done on an almost daily basis. If I wear the sleeve my hand swells. I also bought a couple of stretchy camisoles and I wear them for a while if it appears to be getting worse. So far it is staying under control. Best of luck. Leslie
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Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 08-17-2009, 06:13 PM   #26
chicagoetc
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Re: lymphadema!

This probably doesn't apply to most of you, but the New York Times today published an article that applies to Lymphodema in general. It runs counter to what many of us are told (but wisely suggests that anything like this be done under the care of a doctor). Also if you look up the reference to the study in www.uphs.upenn.edu/news indicates that personal trainers, constant monitoring, and compression sleeves were used.

Melanie

----------------------------------------------------------

Weight Lifting May Help to Avert Lymph Problem
By TARA PARKER-POPE

Published: August 17, 2009

After a woman has surgery for breast cancer, she is typically given a long list of don’ts. Don’t lift anything heavier than 15 pounds, including your child. Don’t carry a heavy purse or grocery bags. Don’t scrub, push, pull or hammer.

The goal is to prevent lymphedema, a painful and unsightly swelling of an arm or leg that can occur near the site where lymph nodes have been removed or damaged by radiation. But new research suggests that much of that advice may be too restrictive. To prevent lymphedema after breast cancer, the best strategy may be more exercise, not less.

Last week, The New England Journal of Medicine reported on a study of 141 breast cancer patients who had lymphedema. Half adhered to the traditional restrictions, while the other half embarked on a slow, progressive program of weight lifting. To the researchers’ surprise, the weight lifters actually had significantly fewer flare-ups than the women who restricted their activity.

“Lymphedema is a very feared complication, and many women have made major alterations to their lifestyle in an effort to avoid it,” said Dr. Monica Morrow, chief of breast surgery at Memorial Sloan-Kettering Cancer Center in Manhattan.

“This is a very welcome study that very clearly shows controlled weight lifting does not make it worse and, in fact, improves symptoms. That should be a reason to re-evaluate a whole lot of things we tell people about lymphedema.”

The findings don’t mean that patients should disregard everything their doctors tell them about lymphedema, which can also occur with other cancers. Once lymph nodes have been damaged or removed, the lymphatic system is less able to cope with trauma or infection, and the painful swelling, tightness and heaviness of lymphedema can result. While physical therapy can ease the symptoms, some patients never fully recover.

Doctors say some of the standard guidelines are reasonable. Intravenous lines, for example, pose a risk of infection, and they should not be used on an arm affected by lymphedema. But other restrictions, like not carrying children or using a blood pressure cuff on the affected arm, may be too extreme.

An editorial accompanying the weight-lifting study in The New England Journal notes that the current “policy of avoidance” should be replaced by recommendations for rehabilitation, particularly because many women have to ignore the restrictions anyway — they are caring for young children, or their jobs require manual labor.

“Rather than saying, ‘Don’t ever lift more than 15 pounds, don’t carry a suitcase,’ instead we should empower women,” said Wendy Demark-Wahnefried, a professor of behavioral science at the University of Texas M. D. Anderson Cancer Center, who wrote the editorial. “Give them the rehab and the exercise training they need after their treatment.”

Kathryn H. Schmitz, an associate professor at the University of Pennsylvania School of Medicine and the study’s lead author, notes that in the past, patients were wrongly advised to avoid activity after a heart attack or a back injury.

“It’s the same principle as back rehab and cardiac rehab,” she said. “You’re slowly and progressively increasing the stress that your system can handle. We’re applying that to lymphedema.”

Corrie Roberts of Philadelphia developed lymphedema in her left arm in June 2004, about 18 months after a mastectomy. She had taken the usual precautions, but during back surgery the anesthesiologist mistakenly used her left arm to insert the intravenous line.

After taking part in the weight-lifting study, she said the swelling and discomfort were finally under control. She uses an exercise room in her apartment building and lifts weights three to five days a week.

“It sure was an improvement,” said Ms. Roberts, 75. “As long as I keep the weight lifting up, I don’t have swelling in my arm.”

Dr. Schmitz is conducting a separate study to determine whether weight lifting can prevent symptoms in women who have never had lymphedema. Another study will focus on exercise programs for people with lower-limb lymphedema.

Experts warn that women should not embark on an exercise program on their own, but should ask their doctor about finding a rehabilitation center or exercise program for patients at risk for lymphedema. The women in the study began with very light weights and were regularly monitored for swelling or pain. Dr. Schmitz noted that not every woman is a candidate, and that a few women in the study developed swelling almost immediately after exerting the arm.

Centers that offer the weight-lifting program used in the New England Journal study can be found at www.uphs.upenn.edu/news. Patients can look for a personal trainer who has a cancer exercise certification from the American College of Sports Medicine. In addition, many Y’s now have exercise programs for cancer patients through a partnership with the Lance Armstrong Foundation.

Women can also order the DVD “Strength and Courage: Exercises for Breast Cancer Survivors,” which was developed by Dr. Sharon Cowden, a Pittsburgh pediatrician and golfer who had breast cancer, and Janette Poppenberg, a health fitness specialist certified by the American College of Sports Medicine.
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Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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Old 12-08-2009, 06:09 AM   #27
Jackie07
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Re: lymphadema!

Just received this link from 'Lymphedema People':

http://www.lymphedemapeople.com
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Old 01-17-2010, 05:13 PM   #28
Jackie07
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Re: lymphadema!

Another link about lymphedema in my mailbox today:

http://www.lighthouselymphedema.org/
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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