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12-11-2008, 07:25 AM
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#1
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Senior Member
Join Date: Oct 2006
Location: Fredericksburg, VA
Posts: 93
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Herceptin & AI questions
Hi! Question: How long is "long enough" to see if a treatment approach is working? I am trying Femara and Herceptin (every 3 weeks) and have been on this since end of August. My 2nd opinion doc at Johns Hopkins recommended this, but said it's an approach that takes a while to work. I just had a pet/ct scan last week which showed some progression, and am meeting w/ my onc this week to discuss what to do next. Also, I've noticed that about 7-9 days after my Herceptin treatment, more times than not, I'll wake up with a migraine, vomiting, etc. which lasts a few to several hours, then disappears. I don't have a history of migraines. I was thinking migraines were sometimes caused by estrogen levels dropping, but I didn't think I would still cycle at all (ovaries out two years ago and loving that!). My onc said this wasn't a typical side effect of the herceptin/femara. I had been on herceptin & tamoxifen a couple years ago (significant progression then!) and didn't have these symptoms. Anyone have any ideas or similar experience? Thanks! (PS I need to update my signature - obviously no longer NED)
__________________
Liz
3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
7/10 - start taxotere/carboplatin/herceptin
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12-11-2008, 11:42 AM
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#2
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Liz: Wasn't your onc troubled by these symptoms? Have you had a brain MRI? Maybe you should re-address with him and see if he will arrange for one especially since it is not a typical se and you are HER2+ with mets to the vertebrae.
Wishing you well and holiday cheer!!
Darlene in Virginia Beach
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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12-12-2008, 09:05 AM
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#3
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Senior Member
Join Date: Oct 2006
Location: Fredericksburg, VA
Posts: 93
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Hi Darlene, thanks for your response. I met w/ onc yesterday and with everything we talked about I forgot to tell him about the migraines still happening. I haven't had a brain scan in 2 - 2 1/2 years since orginal metastasis was dx. Onc has said in past that unless I'm having headaches that don't go away we can hold off on brain scan, but I guess I didn't think of my migraines as fitting that category, assumed it was hormonal. Now I will definitely follow up with him. I'm sorry to see you have been dealing with brain mets, did you have headaches/symptoms or was it found during initial/staging tests?
__________________
Liz
3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
7/10 - start taxotere/carboplatin/herceptin
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12-12-2008, 04:08 PM
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#4
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Liz: I am glad that you are doing the brave thing and checking with your onc. I know it is a way scary thing to even be concerned about it, but, the best treatment options are only there if you catch them small in number and small in size. And better yet, NOT AT ALL, which is what I hope is the case for you.
My onc is a scan-a-holic, luckily for me. He says he can't battle what he can't see, so he never hesitates to order scans. He orders regularly for HER2+ mets gals since the stats suggest a higher chance of CNS involvement. I am also hormone negative, which was also a flag to watch closely.
I was dx in Dec 07 with staging scans and had scans with a Brain MRI end of March and he wanted to do CT, Bone, Muga scan in 4 months with another brain scan in 6 months so I had another 08/21/08 that revealed the effing brain mets. I did not have any symptoms and my liver was clear and my tumor markers were at 11.
This is one sneaky, mean disease. Tough trying to stay ahead of it!
I will be hoping it is, as you suspect, hormone related migranes and will be looking for a response from you that all is well. Hope you get some relief soon.
Have some happy holiday times......
LOL Darlene in Virginia Beach
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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12-12-2008, 06:41 PM
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#5
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Liz,
Good thing that your oncologist is aggressive. My oncologist has been very calm and I ended up having recurrence after recurrence.
Didn't mean to scare you. But when I was having brain tumor symptoms (congenital; unrelated to BC), one of my doctors (switched a couple of family doctors because they just thought I was 'crazy') thought I might be having migrain. And vomiting, though common side effect of chemo and/or Herceptin, is one of the neurological signs doctors look at. In 1990, while I was waiting for my brain surgery, that was one of the things my doctor had told me to watch for - go to emergency room at the first sign so he could operate right away.
Can you request for an MRI? That will give you a definitive answer (at least for a while) and peace of mind.
__________________
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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