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Old 06-15-2012, 06:38 PM   #1
twosenuf99
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Location: Gloucester City, NJ
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Questions
Hi everyone,

Hope everyone is doing well. I have 2 questions for the ladies who have been there done that already.. I am only doing Herceptin every 3 weeks right now and nothing else. Preparing for the next surgery in my recon adventure in August.

I woke up yesterday with severe pain in my right thigh to the point I can not walk. I was wondering if this could be from the chemos or neulasta?
Taxol, Tykerb, Herceptin, Adriamycin, Cytoxin and 5FU.

My other question is last night I woke up with a "phantom" itch in my left "breast" (expander in ) kept me up for hours and wouldn't go away.. Do these ever go away or does the pain or numbness go away under my arm and in my scars from bilateral mx????

Hope someone can help..
Thanks. Tracy
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Baseline Mammogram November 2010, found 2 suspicious calcifications (right side).
Second Mammogram April 2011, found 2 masses in the right breast, 1 in the lymph node and 1 in the left breast.
3 Biopsies May 11, 2011
Diagnosed right Invasive Ductal Breast Cancer which spread to my lymph node 5-13-2011.
Between Stage 2 and 3 with tumors grade III. ER/PR- but Her2neu+++
PET Scan clear
Breast MRI showed 2 masses in left, 5 in the right and 2 in the lymph node.
Biopsy of left mass benign
Joined clinical trial which required second biopsy of one of the right masses
Port placed May 27, 2011
Began Chemo (Taxol, Herceptin and Tykerb) on June 1, 2011 - September 12, 2011
Bi-lateral Mastectomy with reconstruction (expanders) October 3, 2011
FEC 12 weeks
Radiation 6 weeks
Herceptin 8 months finish September 2012
Exchange surgery August 3, 2012
Been NED since October 2011
Lymphedema right arm since Nov 2013
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Old 06-15-2012, 10:39 PM   #2
Vicki revised
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Re: Questions
My surgeon told me the phantom itching, occasional mild pain, and nerve spasms go away after about a year but I am not doing recon. so it may be different. You should check with your dr about the thigh pain since you haven't received chemo or Neulasta in months.
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Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 06-16-2012, 02:16 AM   #3
Ellie F
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Re: Questions
Hi
I had a mastectomy in 2008 and still get occasional itching and some mild pain.The bc nurse told me that it takes up to two years post surgery for a mastectomy to fully heal and the muscle and nerves to settle down.
Hope this helps
Ellie
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Old 06-19-2012, 05:58 AM   #4
twosenuf99
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Location: Gloucester City, NJ
Posts: 73
Re: Questions
Thanks Vicki and Ellie,
I did talk to the infusion nurse about the pain in my leg since I am still doing Herceptin until October. She agrees pain in my leg probably not from chemos. It has finally gone away so I will see my regular doctor if it happens again.
Thanks for the info about the itching and numbness too.
__________________
Baseline Mammogram November 2010, found 2 suspicious calcifications (right side).
Second Mammogram April 2011, found 2 masses in the right breast, 1 in the lymph node and 1 in the left breast.
3 Biopsies May 11, 2011
Diagnosed right Invasive Ductal Breast Cancer which spread to my lymph node 5-13-2011.
Between Stage 2 and 3 with tumors grade III. ER/PR- but Her2neu+++
PET Scan clear
Breast MRI showed 2 masses in left, 5 in the right and 2 in the lymph node.
Biopsy of left mass benign
Joined clinical trial which required second biopsy of one of the right masses
Port placed May 27, 2011
Began Chemo (Taxol, Herceptin and Tykerb) on June 1, 2011 - September 12, 2011
Bi-lateral Mastectomy with reconstruction (expanders) October 3, 2011
FEC 12 weeks
Radiation 6 weeks
Herceptin 8 months finish September 2012
Exchange surgery August 3, 2012
Been NED since October 2011
Lymphedema right arm since Nov 2013
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Old 06-19-2012, 12:46 PM   #5
tricia keegan
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Posts: 3,463
Re: Questions
The thigh pain could be Sciatica which I get now and then and it used to wake me up and is a burning type of pain, PT helps a lot with this if you get it again!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 06-26-2012, 11:24 AM   #6
suzan w
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Posts: 1,744
Re: Questions
I still have some areas of numbness...sorry to say, mostly in my underarm areas which I think are a result of the sentinel node biopsy.
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Suzan W.
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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Old 06-26-2012, 12:44 PM   #7
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: Questions
Neupogen will cause bone pain. Nina is going through that right now. Ibuprophen to start, but now on steroids for seven days.
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