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Old 01-24-2008, 08:20 PM   #1
fauxgypsy
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Question Great News and lymphedema question

My pet scan last week came back clear again. And an MRI I had because of pain in my hip showed nothing. Which is good even though I continue to hurt.

About six weeks ago I was getting out of the back seat of a pickup and felt like I pulled a muscle or something in my right arm. I didn't think anything about it but later that afternoon my index finger and my middle finger were swollen as was the area around those knuckles. The swelling gets worse occasionally but it has not gone away nor has it spread. At first my oncologist and my family doctor both said that it was not lymphedema and now they say it is. I didn't think that sudden swelling was a chracteristic of lymphedema but I am afraid that it will develop into it if I don't discover what is causing it. Any suggestions?

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 01-25-2008, 12:56 AM   #2
StephN
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Yes to sudden swelling -

- as a symptom of lymphedema. I had an infusion nurse once who told me that after 10 years she was on a day hike with a little backpack that brought hers on! I have also heard of things like insect bites starting it.

So, keep your arm raised as much as possible. Keep it OUT of the sun. There is a proper massage technique called Manual Lymph Drainage to learn for each area we are trying to clear. We need a GOOD and knowledgable physical therapist for this. Otherwise we can DAMAGE the lymph channels we are trying to help.

Getting early control is KEY to not having to do the nightly wraps and all that. Lymphedema can be a HUGE interruption in your life.

So you are right to mention it now and get it on your doc's radar screens.
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-25-2008, 02:57 AM   #3
jones7676
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I would suggest massage of lymph node system to ensure they assist in alleviating the pressure. I have had sudden problems from time to time because of "events" and my physical therapist at the time said to work hard to alleviate it so that it does not become "woody". Even a brisk walk lifting your legs high can get your leg lymph nodes to help out. Good luck!
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 01-25-2008, 07:32 AM   #4
PinkGirl
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Hi Faux

I have mild lymphedema and something called cording.
It can definitely come on quickly from over-use of the
affected arm.

If I forget and carry my groceries with my right hand,
within hours, my hand starts to swell.

Like everyone else said, it is best to get on this right
away before it gets worse. When it starts I do a very
gentle massage of the skin on my hand to help the fluid
move up my arm and towards my arm pit.
Hope this helps.


Congrats on the clear scans!!!
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Dx Aug/05 at age 51
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Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
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