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Old 08-16-2007, 02:53 PM   #1
Grace
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Right foot very swollen--Herceptin?

Hi All,

Some advice. I just finished my last herceptin ten days ago. From the beginning, my feet/ankles would swell afterwards. After the last infusion, my right foot is swollen (very) most of the time, even when I wake in the morning, although it's somewhat better in morning than at night. The left is also swollen, but as before. Has this happened to anyone on the board. My last echo, about a month ago was good--LVEF was still 60%.
Thanks.
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Old 08-16-2007, 05:23 PM   #2
Chelee
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Grace, I did experience swelling in my feet, ankles & lower legs. It was really bad but all my EHCO's were great. So I was put on lasix for a while and that was a temporary fix but it got me through it. The swelling finally went away about 2 or 3 months after I was done with herceptin. It may improve in another month or so. But do mention it to your onc. Give you body time to recover.

Chelee
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Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
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11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 08-16-2007, 08:19 PM   #3
Jean
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Final....treatment...

Hi Grace,
So happy for you that you completed herceptin. I did not experience swollen feet but I do think it wise to continue to drink fluids and flush
your system. Keep a pillow under your legs to raise your legs during
sleep. Are you getting enough rest? Sometimes your body will retain
water when tired.

Congratulations once again!

Kind Regards,
Jean
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Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
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Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
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Old 08-17-2007, 05:14 AM   #4
tousled1
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Grace,

I had swelling of the feet/ankles while on Herceptin and now again that I'm back on it. I try and keep my feet elevated as much as I can. Glad that you finished your year of Herceptin! Good luck with your move.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 08-17-2007, 08:09 AM   #5
Erin
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Hi Grace,

I am having the same problem with both ankles - moderate swelling in both. No other symptoms of CHF - no shortness of breath, etc so they did not do another echo.

When the swelling began, right after my 6th Herceptin and right after TCH was over, the swelling was worse in the left but now it has evened out. I did lasix for a while and that helped, but now my onc has me on lisinopril which is a blood pressure med that I needed anyway since my bp had been rising. I think he did not want the lasix to mask any heart problem. The lisinopril did help the bp but isn't really doing anything about the swelling. Just in case the onc had skip one herceptin but I am due to go back for another infusion next week. I go back the the onc in three weeks to re-asses, and I am going to insist on a echo then. Please keep us informed about your progress and what your onc says.
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Lumpectomy 1/4/07 1.1cm tumor
SNB 3 nodes clear
Stage 1, Grade 2, HER2+++ (FISH 6.8)
ER + / PR +
TCH, 6 rounds, finished 6/1/07!!!
Herceptin to continue for 1 year
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Port out 8/27/07
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Old 08-17-2007, 02:12 PM   #6
Grace
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I've been on BP for years now, with HCT included for water retention. The swelling is mainly left foot and today I went out briefly, walked two city blocks and was completely out of breadth, could barely walk. Because my LVEF was good six weeks ago, doctors just shrug their shoulders, but I can barely walk, even in house, so completely out of breath. It never stops raining, does it?
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Old 08-17-2007, 03:03 PM   #7
StephN
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Unhappy Cardiologist?

Oh, Grace -
That shortness of breath is not what you need right now. It happened to me, but during and after my chemos. You seem to be over a year off chemos by now.
Have you had a stress test for your heart? Also breathing tests? Is it ragweed season? I had my pulmonary functions tested out last year after having to take decadron and I was on the low end of normal range. But even this much can knock a person back quite a bit.
What they decided was that I had some loss of lung function due to having had radiation.

I sure hope someone can help you get it figured out and resolved. All your shoes are probably tight as well and that is another horrer.
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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 08-17-2007, 03:21 PM   #8
Sheila
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Grace
The Shortness of breath and Left foot swelling can indicate cardiac or pulmonary embolism, especially since it has come on suddenly..go to the Emergency Room and have them do a doppler of the leg, and an echocardiogram or angiogram to make sure everything is OK....is the foot just swollen or is it cold and discolored? I don't want to scare you, but if it is something, the sooner treated the better. Hoping this is all behind you soon..... as if we don't have enough to deal with, all these other little things happen to scare us!
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 08-18-2007, 01:22 PM   #9
Andrea Barnett Budin
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Exclamation Grace, Dear One...

Grace honey,

I also don't want to alarm you, but when the swelling is in 1 foot, not both, and when there is shortness of breath, like Sheila said -- you need to get yourself to the emergency room or a good cardiologist. It is great that your recent ECHO was good, but these symptoms need to be addressed right away. I'm sorry to *echo* this news, pardon the pun, but something is going on. Rule out embolism. I bet if you were a man they'd do a stress test. If necessary you can do the RESTING kind, where they chemically speed your heart rate up and monitor you. I pray neither of these options are applicable for you, Grace, but I urge you to please follow up right away.

My heart and prayers are with you, sweetie. Sending love...
Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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