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Old 02-15-2008, 12:56 PM   #1
Donna
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lymphedema leading to hand edema?

Hi Amazing Group,

I have had such pain in my right hand - couldn't figure out what the heck was wrong - until my husband noticed it appeared swollen - then I noticed when I put my work gloves on the right hand was stretched taut and the left was almost too big. So, now I am suspecting edema. I get shooting pains that bring tears to my eyes and even pain killers are not putting much of a dent in it.

Anyone else have this? Do I need to wear a full arm sleeve and gloves to make this work? Who the heck do I talk to about it my oncologist?

Didn't notice my arm having problems, but it is still pretty numb from the lymph node removal.

Any ideas will be appreciated - I work with my hands, not to mention my computer stuff and this is really unbearable. I know, what a whiner, but, this really hurts alot!

Have a great day!

Donna
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Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
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Old 02-15-2008, 01:10 PM   #2
PinkGirl
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Hi Donna
I have mild lymphedema in my arm and hand. It started
a few months after my mastectomy. It can be very
painful.

I was lucky because my cancer centre has a physiotherapist
who specializes in lymphedema and she was a big help to me.

I was shown how to do very, very gentle massage on the
skin to help the fluid move up my arm. I also have an elastic
sleeve and glove. I started out with just the sleeve, but my
hand ended up swelling more. Now I use the sleeve and glove
when I am going to be using my arm strenuously. Luckily this
is not my dominant arm. My arm and hand will also swell when
I am traveling in a car.

It is hard to find someone who knows anything about this. I
saw a local physiotherapist and she admitted to me that she
had very little training in this - other than how to wrap a limb.

I hope you can find someone to help you. I was told that this
is something that will flare up at times and I will have to deal
with it. Right now I am doing well. It was worse in the summer
with the heat and with me doing a lot of gardening. Look luck
with this.
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Old 02-15-2008, 04:05 PM   #3
Colleens_Husband
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Dear Donna:

Colleen has the same problem with the swelling of the hand. Sometimes her hand looks like Mickey Mouses except that Mickey only has four fingers.

Your surgeon should be able to provide you with a compression sleeve and refer you to a physical therapist who can teach you how to deal with the lymphedema with massage and exercises. They also have a one hour course on lymphedema at our HMO.

Lymphedema can create some pretty serious infection if it isn't dealt with, so you need to take it a bit seriously.
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Old 02-15-2008, 05:29 PM   #4
goops
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I have mild lymphedema in my arm - I showed my oncologist and he sent me to a physical therapist who is lymphedema certified. The threarpist helped me a lot - he would massage it and put a dema pump on it. He would also bandage it overnight. He showed me excersices and self message and prescribed a sleeve for me.

You should show it to your oncologist and if she feels it is lymphedema she will refer you to someone. I am lucky in that mine doesn't hurt, but I know a couple of people who have a painful case.
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Old 02-15-2008, 05:48 PM   #5
hutchibk
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I was DXed a year ago with stage 0-1 mild lymphedema... the way I discovered it was mostly due to wrist and hand aches. I went to a wound care specialist who also works specialized in lymphedema. She sent me to a lymph massage specialist and prescribed a compression sleeve. We got it under control in about 5 weeks, and though I have had mild flare-ups over the year, I have had very little problem from it. But you need to learn about it and learn the tricks and fixes, so that you can treat mild occurences on your own. Don't let it get out of hand... it is hard to reverse if it becomes severe lymphedema.
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

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Old 02-15-2008, 07:48 PM   #6
LAURIE
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Honestly it the the DAMN(excuse me, but I hate it that much) that causes me the most problems. I have to wear a glove and sleeve in order to be able to even use my hand. I have tried everything. Manual Lymphatic massage, night wrapping, reid sleeve, and a lymphatic pump. If it was not for this lymphedema I would think about BC that much. My advice to you, is to get treatment right away. I don't want anyone to get it as bad as me.
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Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
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