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Old 06-18-2006, 02:22 AM   #1
Chelee
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Herceptin & soreness on the mastectomy side?

I had a Modified radical mastectomy on the right side and SNB. I noticed from my very FIRST loading dose or herceptin that the right side of my chest hurt pretty bad from the inside. Like the tissue was being eaten up. Or raw..whatever?

But now its been five months of chemo along with weekly infusions of herceptin and I STILL to this day find that right side so SORE inside. Its like its never healed. Its hard to explain how it feels. But I just wonder if since that is where they removed the tumor...do you suppose the herceptin attacks that spot more so then other parts of the body? I can push down on my incision from the surgery which was done back on 1-3-06 and it hurts...very sensitive and sore. I wouldn't think it should still be like that after all this time.

Does anyone else that has had a mastectomy, or lumpectomy and is on herceptin experienced such a thing? (With my luck..it will only be me...I always have to be different.) lol

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 06-18-2006, 07:26 AM   #2
rinaina
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could it be from rads and not herceptin? I have heard b.c. patients being sore for quite a long time in their breast from rads. just a thought.
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Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 06-18-2006, 05:25 PM   #3
Chelee
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Hi rinaina, No it can't be from Rads yet...I don't start those till mid July or so? All I have had is chemo...and it just seems it shouldn't still bother me like this? Its time to have a follow-up with my surgeon that did that surgery...maybe he will have an idea of why? Thanks for the idea though...that would be my first thought if I had done Rads.

Hi Laurie, Maybe its just normal for it to stay a little sore then? My first thought was the herceptin causing it because I noticed it hurt so much more after my very first infusion of herceptin. I thought to myself...its attacking the good cells along with the bad. So I just ignored it. But now...its went on too long and hurts too much. I recently had my PET/CT scan...and my doctor didn't say anything...so I hope and pray its fine?

You said your not doing herceptin anymore and yours is still tender. That is a better choice of words...meaning TENDER. There is one area of the incision which has healed nicely...but it is TENDER to touch. Maybe it takes longer to heal after such a serious surgery. Unless I am going to end up with that lymphadema you mentioned? That CAN show up at any time. I noticed just recently also that if I touch under the arm that had the SNB...its really painful...it was never that way. So maybe I am getting some lymphadema in that side?

At least its a thought...something to run by my surgeon when I see him. Which will be soon.

Thanks you guys.

Chelee
__________________
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 06-18-2006, 05:39 PM   #4
tousled1
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I just had a bilateral mastectomy 1 1/2 weeks ago and my oncologist told me that some women experience "phantom pain" long after the healing process is complete. Could that be what you are experiencing?
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Kate
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 06-18-2006, 06:24 PM   #5
dskdrive
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Tender

I am still very tender at my lumpectomy site and I will be 2 years post surgery in sept. 06. I am still on herceptin as I did not start until Sept. 05.
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Old 06-18-2006, 06:32 PM   #6
rinaina
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Great idea to follow up with surgeon anytime something doesn't feel quite right or any doctor for that matter to what the problem seems to be related to. Good luck and hope you find your answer as to why you have this pain.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 06-18-2006, 02:27 PM   #7
Lauriemn
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I have areas along my masectomy incision that are tender. I had my mast on 3/24/05 and I have had areas of pain and tenderness ever since. the Herceptin did not seem to make it worse. I have been off Herceptin for a month now and I still have pain. I did have an ultrasound, ct and pet to rule out recurrence. I do have lymphadema and I think that contributes to the pain and tenderness.

Laurie
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