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Old 02-19-2013, 09:36 AM   #1
linn65
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Neropathy

I have noticed in the last couple days just on my, "LEFT" side my foot keeps getting tingley and like going partially asleep. Geez, could this be the Herceptin and now I am going to get neropathy??? It is not on my "Right" foot just my left. And my left hand too going back and forth tingly and like it is falling asleep.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-19-2013, 11:51 AM   #2
evlin75
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Re: Neropathy

That is something I would report to my oncologist. I would recommend an MRI of the brain to rule out problems there just to be on the safe side.

Everyone is different but my daughter has had no neuropathy problems with Herceptin. Has used it for many years.
Ev
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Old 02-19-2013, 12:19 PM   #3
linn65
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Re: Neropathy

Wow, a MRI of the Brain??? That sounds like such a big thing to do. I didn't know if neropathy would be in both feet and hands or what. But it feels like when you foot goes to sleep and it is just waking up, so you stomp down on it to try and wake it. I never even tought in my wildest dreams a Brain MRI. I have never been sick in my life until I woke up with cancer in July, and I sure would not want to over react.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-19-2013, 12:35 PM   #4
Jackie07
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Re: Neropathy

Chrystal,

Ev's suggestion is probably based on the fact that only one side of your extremeties are affected - an MRI could rule out the possibility of brain mets. I understand your feeling hearing the frightening words. But it's something worthing checking into.

Below are two recent abstracts about leg cramps - didn't know if you are experiencing it more during the night or not...

Am Fam Physician. 2012 Aug 15;86(4):350-5.
Nocturnal leg cramps.
Allen RE, Kirby KA.
Source
St. Mark's Family Medicine Residency, Salt Lake City, UT, USA. rallen@utahhealthcare.org
Abstract
Up to 60 percent of adults report that they have had nocturnal leg cramps. The recurrent, painful tightening usually occurs in the calf muscles and can cause severe insomnia. The exact mechanism is unknown, but the cramps are probably caused by muscle fatigue and nerve dysfunction rather than electrolyte or other abnormalities. Nocturnal leg cramps are associated with vascular disease, lumbar canal stenosis, cirrhosis, hemodialysis, pregnancy, and other medical conditions. Medications that are strongly associated with leg cramps include intravenous iron sucrose, conjugated estrogens, raloxifene, naproxen, and teriparatide. A history and physical examination are usually sufficient to differentiate nocturnal leg cramps from other conditions, such as restless legs syndrome, claudication, myositis, and peripheral neuropathy. Laboratory evaluation and specialized testing usually are unnecessary to confirm the diagnosis. Limited evidence supports treating nocturnal leg cramps with exercise and stretching, or with medications such as magnesium, calcium channel blockers, carisoprodol, or vitamin B(12). Quinine is no longer recommended to treat leg cramps.
Copyright © 2012 American Academy of Family Physicians.
Summary for patients in
· Am Fam Physician. 2012 Aug 15;86(4):1.

J Physiother. 2012;58(1):17-22. doi: 10.1016/S1836-9553(12)70068-1.
Stretching before sleep reduces the frequency and severity of nocturnal leg cramps in older adults: a randomised trial.
Hallegraeff JM, van der Schans CP, de Ruiter R, de Greef MH.
Source
Hanze University of Applied Sciences, Groningen. jmhallegraeff@online.nl
Abstract
QUESTION:
In adults who experience nocturnal leg cramps, does stretching of the calf and hamstring muscles each day just before sleep reduce the frequency and severity of the cramps?
DESIGN:
A randomised trial with concealed allocation and intention-to-treat analysis.
PARTICIPANTS:
Eighty adults aged over 55 years with nocturnal leg cramps who were not being treated with quinine.
INTERVENTION:
The experimental group performed stretches of the calf and hamstring muscles nightly, immediately before going to sleep, for six weeks. The control group performed no specific stretching exercises. Both groups continued other usual activities.
OUTCOME MEASURES:
Participants recorded the frequency of nocturnal leg cramps in a daily diary. Participants also recorded the severity of the pain associated with nocturnal leg cramps on a 10-cm visual analogue scale. Adverse events were also recorded.
RESULTS:
All participants completed the study. At six weeks, the frequency of nocturnal leg cramps decreased significantly more in the experimental group, mean difference 1.2 cramps per night (95% CI 0.6 to 1.8). The severity of the nocturnal leg cramps had also decreased significantly more in the experimental group than in the control group, mean difference 1.3 cm (95% CI 0.9 to 1.7) on the 10-cm visual analogue scale.
CONCLUSION:
Nightly stretching before going to sleep reduces the frequency and severity of nocturnal leg cramps in older adults.
TRIAL REGISTRATION:
NCT01421628.
Copyright © 2012 Australian Physiotherapy Association. Published by .. All rights reserved.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 02-19-2013 at 12:39 PM..
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Old 02-19-2013, 12:48 PM   #5
linn65
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Posts: 371
Re: Neropathy

I never have leg cramps just the tingly feeling that isn't awful. Really, in my mind I thought I am going to have neuropathy now. Yuck. I never, ever thought of brain bets.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-19-2013, 12:56 PM   #6
Jackie07
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Re: Neropathy

Looks like it's been going on for a while.
http://her2support.org/vbulletin/sho...ght=neuropathy

Do mention it to your oncologist/oncology nurse and let them know how long you've been experiencing it and whether or not it's been progressing. Let them know the exact reaction you've had to the suggestion of an MRI, and see what their advice is.

Many on this board have successfully battled brain mets. There's a 'calling all stage IV Sisters' thread http://her2support.org/vbulletin/sho...+stage+sisters where many have shared their stories battling/beating all sorts of mets. It's just part of our reality...
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 02-19-2013 at 01:00 PM..
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Old 02-19-2013, 01:06 PM   #7
linn65
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Re: Neropathy

No, I have not mentioned it too them, and my legs are not tired anymore like they were after chemo that did go away. I am still working on 7 more Rads....I can not imgaine doing something else already. It just started this tingly thing.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-19-2013, 03:28 PM   #8
NEDenise
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Re: Neropathy

Linn,
Sorry you're so worried. You've already been given a lot of good advice but I feel like I want to join in anyway.
If you'll notice in my signature...I HAVE brain mets.
I had no symptoms at all.
A brain MRI is easier than either chemo or radiation...and ruling things out is ALWAYS a good idea.
And, an MRI doesn't expose you to any radiation at all.
In fact, with your positive nodes and the size of your tumor...
my counsel to you at the end of radiation would have been to fake some kind of symptoms in order to GET a brain MRI.
If I hadn't insisted on a brain MRI...I might be in pretty bad shape by now...maybe even dead...remember I had ABSOLUTELY no symptoms.

I guess what I'm saying is this...
1) I don't think you have brain mets
2) The tingling is probably just what you think...neuropathy from the T...mine didn't show up till later either
3) Wouldn't it be safer to know for sure? That's a big chance to take!
4) If you don't get the brain MRI now...think about getting one at the end of Herceptin, even if you have to lie to get it

Best to you,
Denise
__________________
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2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
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1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
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1/14/13 herniate disk in back - surgery to repair
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5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
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Old 02-19-2013, 03:53 PM   #9
evlin75
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Re: Neropathy

My daughter had no symptoms either until the tumor on her brain stem was as large as a tennis ball. She began persistant vomiting and at first thought it was the flu. An MRI revealed the tumor
That was a couple years ago. She received excellant surgery and whole brain radiation. Soon felt very well and could return to her usual activities. Prior to the diagnoses she was out riding her bike and had no evident deficits.
I don't like scaring people or delivering bad news but doing the MRI is a safety measure. It is usually better to find a problem early rather than later.
Ev
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Old 02-19-2013, 05:46 PM   #10
chekmark
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Re: Neropathy

I agree with all the others, better safe than sorry but I do want to add that I had similar tingling while on herceptin. Mostly hands and feet somewhat. Like bad circulation. It went away and never returned and my oncologist was not too concerned since it went away. I would tell your doc about it. Denise is a good example of being diligent. She is such an amazing person. Keep us posted and I pray it is nothing. Take care.
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Old 02-19-2013, 07:03 PM   #11
linn65
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Re: Neropathy

Thank you I appreciate all your support.... I will tell the Dr. About it. I don't want to be a hypocondriac either. I did get nauseated Saturday and threw up a bunch on the way home it felt like I was car sick. Again, I have racked it all up to the herceptin. I haven't been sick again and the tingly thing just started today. All my radiation is being done on the left side ands its radiating all the way from my thorax, to where my breast was removed then under my arms.

So people have brain mets And no symptoms??? How do they even think to ask for one? I just know he said no a scan for six months after surgery in December. I did find a random bump on my upper thigh and they said it felt like a lympoma like a fatty tumor that was not related to cancer but it scared me at first when I felt it. I hasn't changed but still there 3 or 4 weeks later.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-19-2013, 07:08 PM   #12
linn65
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Re: Neropathy

I know they said good response to chemo too just because my tumor didn't grow, but it had spilled out of my lymph nodes. They are hoping that the radiation will kill that. It is so strange to not know if something they are giving you is working or not working... Just wait and in 6 months will know. I just had no idea how complex BC is.....
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-20-2013, 02:17 AM   #13
Neanar
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Posts: 4
Re: Neropathy

Hi,
Sounds just like me....I was on herceptin for a year until June 2011 and my right food tingled just like it was asleep or it felt as though there wasn't any blood going to it, very strange feeling. Once I stopped herceptin it went :-) I'm now on TDM1 which has herceptin in it and it's back again! Funny as it's my right foot again but worse and I feel it more when I'm lying down and sometimes to the point when I'm on the sofa I have to eleveate it which helps. Is yours when you are lying down? This feeling is common when on herceptin so try not to worry but as we all know cancer can present itself again and you must get everything ruled out for peace of mind... Although it was never discussed that my tingling could be brain mets but I know why other people are saying rule this one out. Hope it turns out to be just herceptin side effects.
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