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Old 01-13-2008, 05:03 PM   #1
caya
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Tamara -
I have had 11 out of 17 Herceptin infusions - the edema was worse in the beginning for me - mainly my left leg, ankle and foot. They sent me for an ultrasound on 3 different occasions to make sure it was not a blood clot (it wasn't). My onc. put me on a mild diuretic that I take most days and it has improved immensely.

But as the others have stated - this is not whining - you are on serious medication and these things must be in your records and brought to your onc.'s attention.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 01-13-2008, 07:28 PM   #2
Chelee
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Tamara, You really should mention this to your onc so they can note it in your chart. I know what you mean about feeling like its whining but its not. Just tell your onc you've noticed quite a bit of edema lately & you would like their thoughts/opinion on it. Its important that they know about these changes. That being said I really feel its due to herceptin.

My lower legs, ankles and feet were full of edema while I was on herceptin. It stayed that way until about a month after I finished herceptin then it went back to normal. My oncologist didn't pay much attention to my edema but DID note it in my chart. Then I mentioned it to my pulmonary doctor and he DID care and put me on a low dose of "Lasix" (diurectic) (Actually before that he was so concerned about HOW swollen my lower legs and ankles were he sent me straight out of his office to the hospital for a doppler to see if I had blood clots.) Which I didn't...but it pays to check these things out. But I have a feeling it IS the herceptin causing it...but you really should mention it to your onc so you won't worry about it. Hang in there.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
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.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
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 01-14-2008, 07:19 AM   #3
suzan w
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Hi tdonnely...I just bumped up a thread that I started while I was on Herceptin. It reassured me to know that others were having the same weird symptons that I was having. For me, the swelling was just an unpleasant side effect and did not mean that anything terrible was happening!!! Hope it is the same for you!!!
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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