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Old 12-17-2013, 08:35 AM   #1
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Location: Gloucester City, NJ
Posts: 73
Lymphedema Issues

Just wondering how many people are dealing with Lymphedema and what you are doing to control it? I recently did PT and now have a new compression sleeve. My problem is the sleeve is very uncomfortable and my arm is still so swollen that the sleeve cuts off my circulation. Can't keep it wrapped as I am sure you all know can't go through life one armed.

Any help would be wonderful

Baseline Mammogram November 2010, found 2 suspicious calcifications (right side).
Second Mammogram April 2011, found 2 masses in the right breast, 1 in the lymph node and 1 in the left breast.
3 Biopsies May 11, 2011
Diagnosed right Invasive Ductal Breast Cancer which spread to my lymph node 5-13-2011.
Between Stage 2 and 3 with tumors grade III. ER/PR- but Her2neu+++
PET Scan clear
Breast MRI showed 2 masses in left, 5 in the right and 2 in the lymph node.
Biopsy of left mass benign
Joined clinical trial which required second biopsy of one of the right masses
Port placed May 27, 2011
Began Chemo (Taxol, Herceptin and Tykerb) on June 1, 2011 - September 12, 2011
Bi-lateral Mastectomy with reconstruction (expanders) October 3, 2011
FEC 12 weeks
Radiation 6 weeks
Herceptin 8 months finish September 2012
Exchange surgery August 3, 2012
Been NED since October 2011
Lymphedema right arm since Nov 2013
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Old 12-17-2013, 10:28 AM   #2
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Location: Sunny San Diego
Posts: 2,214
Re: Lymphedema Issues

Oh 2senuf - that sucks. It sounds uncomfortable.

I wonder if the pressure is too tight, after all the lymph vessels can only process so much fluid and yours in the right arm are already compromised.

I have heard of surgical intervention for lymphedema that is just being introduced. I'll post some articles for you.

I had an amazing team of physical therapy doctors that specialized in lymphedema. I had axillary web syndrome - the arm doesn't swell - just the lymph vessels. They popped up in the front side of the elbow like guitar strings. It hurt like the dickens and I could not straighten my arm. They got me straightened out fast - lucky me!

Have you talked to your medical team about the feeling of your circulation being cut off?

Perhaps your insurance covers a massage therapist who is experienced in lymph drainage? This is a very light, extremely slow technique. The therapist can help direct the lymph fluid to other areas where the lymph system can process it.

I'm so sorry you are stuck being a one-armed bandit. Ah, the joys of cancer treatment - I hope you get relief quickly.
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 12-17-2013, 10:30 AM   #3
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Re: Lymphedema Issues

Doctors perform revolutionary lymph node transplant for first time in D.C. area

Doctors have developed a revolutionary procedure – a lymph node transplant - that could help the long-term health of cancer survivors.

Inova Cancer Center

Only on 7, ABC7’s Gail Huff reports on the procedure a local woman received and how it could change her life.

Viola Kargbo is a breast cancer survivor. But since her cancer had already spread to her underarm lymph nodes, those had to be removed as well.
Then, like thousands of survivors, she developed lymphedema.

In a first-time transplant operation in the D.C. area, doctors harvested healthy lymph nodes from her groin and transplanted them to her underarm, where her cancerous lymph nodes had already been removed.
Two years ago, Kargbo, 72, survived breast cancer, surgery, chemotherapy, and radiation. But then she developed lymphedema, a very painful condition where the body fluid doesn't drain, causing the arm and hand to swell to as much as twice its size.

Three weeks ago, Kargbo had the seven-hour surgery at Inova Fairfax Hospital.
“It's your own body, so its safer than other types of transplants,” says Dr. Alex Mesbahi, a microsurgeon.

The fluid is draining in Kargbo’s arm and there's hardly any swelling. She has resumed her favorite hobby, quilting and sewing scarves for her daughters.
It will take about nine months before doctors know how successful the transplant is.
Doctors are hoping to use this groundbreaking procedure to treat additional breast cancer survivors in the D.C. area.

Short URL: http://wj.la/YF8m1H

Last edited by 'lizbeth; 12-17-2013 at 10:32 AM.. Reason: easier reading
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Old 12-17-2013, 10:35 AM   #4
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Re: Lymphedema Issues

Surgical Treatments for Lymphedema (@Stanford)

Surgery is a treatment option for a very small, selected percentage of the patients who have lymphedema.
The two categories of surgical intervention that are currently available in the United States are lymphatic reconstruction and excisional surgeries
Lymphatic Reconstruction

  • Lymph node transplant is surgery in which lymph nodes are moved from one part of the body (usually the abdomen) to the lymphedema affected area. The transplanted lymph node theoretically stimulates the growth of new lymph channels into and out of the transplanted node.
  • Anastamotic reconstruction attempts to restore lymph flow through a surgical re-joining of the damaged lymph channel either to another lymphatic vessel or to a vein.
  • Debulking is surgery that involves the surgical removal of excess tissue that hangs in folds.
  • Liposuction is an excisional operation during which a tube is inserted under the skin. Through this tube, a high-pressure vacuum is applied to break up and "suck out" excess fat cells. This procedure often leaves excess skin hanging loose.
Because most of the observations of outcomes from lymphatic reconstruction for lymphedema are limited in scope and duration of follow-up, these procedures are not actively practiced in our institution. A significant potential for risk exists, including unexpected worsening of the lymphedema, failure to improve the original condition, and scarring complications of the surgical intervention. In lymph node transplantation, there is a finite risk that lymphedema could also develop in the region of the body from which the transplanted lymph node is harvested.
Excisional Surgeries

  • Debulking is a surgical intervention that removes large excesses of skin and soft tissue overgrowth; which occurs as a complication of longstanding lymphedema
  • Liposuction is a specialized adaptation of the procedure that permits the surgeon to remove overgrown fatty tissue that resides under the skin. This can become necessary in lymphedema because of the tendency for fatty overgrowth to commonly occur when lymphedema is chronic. In properly selected patients, the lymphedema limb can be restored to normal size through surgery. The operation is performed under general anesthesia, but is minimally invasive. The surgical technique has been perfected in Europe over the past two decades and now has an extensive documentation of efficacy without complications or untoward outcomes.
Both forms of excisional surgery are performed, for properly selected patients, in our center.


The link above has more information available
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Old 12-17-2013, 10:58 AM   #5
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Location: Lakeville, Minnesota
Posts: 199
Re: Lymphedema Issues

I have had lymphadema for over 8 years and have it pretty well under control. I try to eat a very low sodium diet, don't lift anything over 10 lbs or do repetitive motions with that arm.
I would wrap your arm as much as you can, definitly when you are sleeping and anytime you are at home. I assumed they showed you exercises to do at home. It is imp to do these everyday. If they didn't give you exercises, you need to find a different therapist.
If your sleeve is still too tight (you have red marks left on the top of your arm or in the crease of your elbow) you need to be refitted.

diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
U of Wa vaccine trial-oct 2011-Feb 2012
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 12-17-2013, 01:08 PM   #6
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Posts: 436
Re: Lymphedema Issues

Hopefully your PT was Lymphadema certified. There are massage techniques specific to lymphadema. Did they do the multi-layered wraping first before the sleeve to decrease the fluid. The sleeves are very tight so if they didn't do the wraping first it may not be fitting correctly.
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 12-17-2013, 10:24 PM   #7
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Re: Lymphedema Issues

I developed lymphedema during radiation in 2009. It's been a long and frustrating journey for me but I am able to keep it under control. I use compression sleeves, gauntlets and gloves consistently. I started having what felt like nerve pain in the affected arm. I spoke to my doctor about seeing an acupuncturist at the intergrative health center that is part of the hospital. She said although it goes against everything we know about lymphedema she fully trusts the doctor so right now I'm going weekly.

I've had many many sessions with lymphedema therapists and even pay myself to have a certified therapist work on me on a regular basis. I am not wearing compression all the time anymore. I measure my arm frequently. Since I've backed off compressin the nerve pain has greatly improved. I'm not saying the acupuncture is curing it, but I've had some pretty amazing results with pain relief related to surgery.

I would recommend seeing a certified therapist and discussing the problems with your sleeve. They are no fun but you will get used to them but maybe you don't have the right size. I've had problems with getting the wrong size and if I had not checked I would not have known. I've even had the box say one thing but the tag on the sleeve didn't match the box.

I also have a Flexitouch machine that I use pretty much every day. I watch and have learned to read my body better but it's taken a lot of time and energy.

I feel I could go on and on. Feel free or send me a message if you would like to talk sometime. I would be happy to share my experiences. I think the treatment for lymphedema could benefit from some personalization as well. Over time you should get a better feel for what works for you and what doesn't.

Were you given a night sleeve? These can be very helpful as well.

Best wishes to you and hang in there.
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 12-17-2013, 11:15 PM   #8
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Re: Lymphedema Issues

I developed lymphedema in the right arm during chemo in fall, 2007 due to a tiny (invisible) bug bite to the finger (which developed into cellullitis - was put on IV for it) while picking figs in the back yard. At first the physical therapist wrapped my arm (and showed me how) with three different fabrics (the middle layer was soft cotton). After several weeks, I was fitted with a set of compression sleeve and glove.

I had obtained the third set of sleeve and glove earlier this year (was charged the full price even though it was supposed to be a replacement set because the previous one was a terrible fit) But I'm happy to report that I have not had the need to use them for many months now.

(Altogether I've had 11 lymph nodes out and cancer cells were found in two of them.)

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
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.

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Old 12-18-2013, 05:47 AM   #9
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Posts: 1,648
Re: Lymphedema Issues

I was told that Sloan Kettering has a terrific DVD showing exercises for lymphedema maybe you could check if you could get it. I would love to see this myself since I have now had lymphedema for over 2 months due to a knat bite and medicine and physical therapy are barely making a dent.
Hoping we all have a less swollen new year
love sarah
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Old 12-18-2013, 07:03 AM   #10
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Posts: 67
Re: Lymphedema Issues

I'm sorry you are having to deal with lymphedema. I developed it almost immediately following surgery in August 2011. I have been to a lymphedema specialist numerous time, wear a sleeve and gauntlet/glove in the day time and have a special night time garment I have to wear at night. I do manual massage and exercises and have to be on a compression pump 2 hours every day. I have tried the wrapping which is impossible especially to find any clothes to fit over an already fat arm. I've been told that everything that can be done is being done so am trying to learn to live with it. I absolutely hate it. I have heard about the surgery. Anyway I wanted you to know you are not alone and if I can do anything to help you to please let me know. Sometimes just knowing others are going through the same things help me. Also I have come to feel undressed if I forget to put my sleeve on and like you at the beginning I thought I wouldn't be able to stand wearing the very tight sleeve. Let me know if you find any other answers to help reduce your arm.

Routine mammogram 6-29-11
Ultrasound 7-5-11
Biopsy 7-11-11
Right modified radical mastectomy 7-18-11 with 7 out of 24 lymph nodes positive
Stage IIIC, Grade 3, Estrogen + 100%, HER2 +
Had 5 tumors in right breast, none of which showed up on the mammogram (What showed up on mamm was a lymph node)
Lymphatic vascular invasion
Lymphedema right arm (started shortly after surgery)
TCH started August 15, 2011
Finished Taxotore and Carboplatin 11-28-11
Radiation x 36 - finished Feb. 3, 2012
Herceptin weekly for 1 year - finished 8-13-12
Arimidex started Feb. 2012 for 5 years
Left prophylactic total mastectomy March of 2012

Arimidex stopped August 2014 due to side effects
Aromasin started Sept. 2014
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