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06-18-2006, 02:22 AM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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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
__________________
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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06-18-2006, 07:26 AM
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#2
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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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.
__________________
~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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06-18-2006, 02:27 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 62
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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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06-18-2006, 05:25 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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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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06-18-2006, 05:39 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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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?
__________________
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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06-18-2006, 06:24 PM
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#6
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Member
Join Date: Oct 2005
Posts: 23
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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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06-18-2006, 06:32 PM
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#7
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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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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06-19-2006, 05:43 AM
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#8
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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Good morning.
I had a partial mast. & lymph dissection 1/06 the muscles were sore and their was alot of tenderness but at about the year point all that has dissappeared. So keep up the good fight it does get better.
Mary
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06-19-2006, 05:44 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Several months ago I posted (as well as others) that I was having pain /discomfort in the surgical site/tumor bed of my lumpectomy. Several other women were too. Our conclusion was that the Herceptin was doing its thing. My pain was mild, yet focused in one area and sometimes in the port area too. I know it sounds to easy to blame the Herceptin, but I believe that is what did it.
It finally went away after about 6 months of treatment. Now I just have really itchy skin on my arms and back.
Hang in there!
maria
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06-20-2006, 12:04 AM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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After reading all your replies...I feel much better. Sounds like its pretty normal to still have some tenderness/soreness.
Maria, That was my orignally thought that the herceptin was causing it. Because the FIRST time I really noticed it and it got bad was after my first loading dose of herceptin. Then it would get worse with each weekly dose of herceptin. Plus I would notice anything else in my body that was injured or cut. In fact...you used a good example. My port always is sore too and it shouldn't be in my opinion.
But regardless of what is causing it for sure...I do have to go in and see my surgeon. I want to make sure there is nothing else going on in there I should know about. But I did see one women here said its been TWO years since her surgery and she is still tender. So I am not going to get to worried...I just get tired of it ALWAYS feeling tight and sore. After six months I thought it would be almost 100%. (I can dream can't I.) lol
Maria...I am going to see if I can FIND that thread you mentioned? Some how I missed that one. Sounds interesting. Thanks for bringing it to my attention.
Thanks EVERYONE. I really appreciate.
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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06-20-2006, 12:56 PM
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#11
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Member
Join Date: Oct 2005
Posts: 10
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Mastectomy pain
I had a bi-lateral mastectomy in Feb. 2005. I feel discomfort only on the right side which was where the tumors were and lymph nodes taken. It feels like my whole side there is solid and slides up and down, especially when I lay down. Anyway, as the nerves have been healing and reconnecting, I have felt varing degrees of discomfort. Not bad enough to call it pain, except occasionally.
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