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01-29-2013, 12:23 PM
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#1
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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An Unexpected Benefit from Treatment
I am getting Herceptin (Trastuzumab) and Tykerb (Lapatanib) to treat my metastatic HER-2 positive breast cancer. It is controlling the cancer very well so far, but I happened to notice something else. I used to get eczema on the palms of my hands, especially in the winter. It would start with little blister-like bumps that would crack open and flake off, leaving sore, raw skin underneath that would sometimes bleed. A month or two ago I realized I haven't had eczema since I began cancer treatment.
There's more, though. The first symptom that caused me to seek a diagnostic mammogram was that exact same thing happening to my left nipple. It was, in fact, diagnosed by a dermatologist as eczema, and it responded brilliantly to the tiny tube of prescription ointment that he gave me.
HER-2 is a skin protein. Our type of breast cancer causes overexpression of this protein.
One of my daughters has a masters degree in biomedical science policy and advocacy. When I told her I seem to have stumbled upon an expensive cure for eczema she told me there's an eczema drug in development with either a "mab" or "nib" suffix. (She told me which one, I just can't remember what she said.)
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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01-29-2013, 01:07 PM
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#2
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: An Unexpected Benefit from Treatment
other cancer patients have noted improvements in their allergies. It may be that cancer (her2+ breast cancer in particular) does a number on their immune systems (or that the immune abnormality allows development of the breast cancer in the first place) so it may have to do with other things besides the fact that her2 is a receptor for epidermal growth factor. (It could be both factors and others besides)
Please add this to the long thread under Herceptin/tykerb on side effects/beneficial effects of herceptin so others can benefit from having all this info in one place!
Thanks!
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01-29-2013, 01:56 PM
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#3
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: An Unexpected Benefit from Treatment
Lani-
I copied this thread to the other forum. I had never done that before. It's easy!
Amy
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01-29-2013, 05:08 PM
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#4
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: An Unexpected Benefit from Treatment
very interesting
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01-29-2013, 06:26 PM
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#5
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Senior Member
Join Date: Oct 2010
Posts: 92
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Re: An Unexpected Benefit from Treatment
This is interesting. I was having a lot of new food allergies before I was diagnosed, they started two years before and disappeared with treatment.
__________________
Dx June 2010
ER- PR+ Her2+++, Stage 3C
A/C x 4
Mastectomy 8/18 nodes+
Taxol/Herceptin x 4
35 rads
Continue Herceptin for 1 year
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01-29-2013, 07:19 PM
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#6
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: An Unexpected Benefit from Treatment
I didn't get or lose allergies or conditions, but I gained Chemo Cravings.
With Tykerb, Xeloda and Herceptin: salmon sushi. Hair grew back brown and barely wavy.
T-DM1: Indian food. The hotter, the better. Hair grew back black and curly.
Mmmmm.
Karen
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01-29-2013, 09:06 PM
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#7
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: An Unexpected Benefit from Treatment
__________________
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
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02-01-2013, 03:48 AM
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#8
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: An Unexpected Benefit from Treatment
Oncol Lett. 2012 Jul;4(1):83-85. Epub 2012 Apr 11.
Synchronous bilateral Paget's disease of the breast: A case report.
Xie B, Zheng H, Lan H, Cui B, Jin K, Cao F.
Source
Department of Surgical Oncology, Taizhou Hospital, Wenzhou Medical College, Linhai, Zhejiang 317000, P.R. China.
Abstract
Synchronous bilateral Paget's disease of the nipple is extremely rare. In the present study, we report a case of synchronous bilateral Paget's disease in a 45-year-old woman who had a medical history of gastric cancer. The patient presented with a 6-month history of eczema and itching in both nipples. Mammography and ultrasonography did not reveal any mass lesions in the bilateral breast, and computed tomography and bone scintigraphy showed no site of distant metastasis. The patient was scheduled for mastectomy and sentinel node biopsy. The histological diagnosis was Paget's disease of the breast with no evidence of underlying invasive ductal carcinoma or ductal carcinoma in situ of the breast tissue. There was no metastasis in either of the sentinel nodes. Immunohistochemical staining showed a negative expression of oestrogen and progesterone receptors. The patient has not received chemotherapy, radiotherapy or hormonal therapy. The patient has been disease-free for 7 months following surgery.
__________________
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
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02-01-2013, 08:13 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: An Unexpected Benefit from Treatment
maybe it's the tykerb because I was on Taxol and Herceptin and had horrible skin problems, rashes that turned into sores and itched and no dermatologist could solve it - cortisone creams were useless, the only think that helped was calamine lotion which stopped the itching a little. nice to hear of a good side effect!!!
good health
__________________
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02-04-2013, 10:52 AM
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#10
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Senior Member
Join Date: Oct 2012
Posts: 45
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Re: An Unexpected Benefit from Treatment
I learned something from this post. I didn't know that HER2 was a skin protien. Hmmm... I wonder if there's a connection between all the skin tags that appeared during my pregnancy and my diagnosis of HER2 breast cancer several months later. I'm on Hercepting too and it seems like my skin tags are getting smaller and disappearing.
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02-04-2013, 06:36 PM
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#11
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Senior Member
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
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Re: An Unexpected Benefit from Treatment
I'm on TCH and feel like I'm 13 again instead of 48 - major rash that looks like acne. Going to my looking good feeling better class 2nite and was going to ask about that so thanks sarah for bringing up the different chemo and different experience.
__________________
Julie
Live in Orange County, CA
Diagnosed with DCIS Oct. 2012
Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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02-04-2013, 06:56 PM
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#12
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Senior Member
Join Date: Jan 2012
Posts: 362
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Re: An Unexpected Benefit from Treatment
IrvineFriend: be careful not to put foundation or a foundation powder on your face if you have a rash. It will make if much worse. I had the same reaction and I would put Neosporin on my face and it really helped. I use to be a make up artist and the one rule we always followed was never put make up on if a someone has a rash on their face. Good news is that it goes away once you stop Taxol.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
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