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Old 11-22-2007, 10:38 PM   #1
Faith in Him
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Anyone with Vertigo

Has anyone experienced vertigo while on herceptin?

Just wondering.

Thanks
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 11-23-2007, 12:28 AM   #2
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Call your onc ASAP, vertigo may indicate brain mets and he may wish to order a brain MRI.

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Old 11-23-2007, 06:42 AM   #3
dhealey
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I agree with Joe vertigo may be a sign of brain mets. You may need a MRI.
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Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 11-23-2007, 11:09 PM   #4
hutchibk
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Yes, Joe and Debbie are right. Very sage advice.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-29-2009, 12:48 AM   #5
Jackie07
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Re: Anyone with Vertigo

Got very bad vertigo during sleeping hours Sunday night. I was reading while lying in bed on my right side. When I finally was ready to sleep, I turned off the light and turned to the left side to hold my husband's hand. Suddently, the whole room started to spin around me and I cried out to hubby. I buried my head (facing down) for a while before opening my eyes looking to the left side - and that side of the wall was also spinning. A while later (can't remember the exact time - around 2:30 am), the same thing happened all over again. Eventually I went to the living room and slept in the couch around 4:30 am (so hubby could get some sleep since he will have to drive me to the hospital the next day) The wall in the living room spinned a little bit slower...

Hubby was able to get an appointment for me with our family doctor at 1 pm. (Around 11 am I threw up 3 times very tiny bubbled liquid) The doctor thought it was vertigo after the nurse had conducted two blood pressure test - one while I was lying on the examing bed, the other while I was standing on the floor. The doctor explained it to hubby outside of the room (while I was hooked on IV because the doctor thought I was dehydrated) and asked him some more details about what had happened.

He ordered chest x-ray and a C-scan. He's going to schecule an MRI also. Even though I had just had an MRI in February.

After I got home, I remembered that everything could have been related to the visit to the Physical Therapist Monday. She had given me some exercise to work on besides the walking 10 minutes 3 times a day. I did not feel like to walk at all and only did a little bit shoulder and arm rotations. Wait, the reason why I had requested for PT was because I had suddently felt my 'left-side weakness' about 3 weeks ago (after feeling left-side weakness following 'Vital Care' counselor's suggestion to 'walk every day'.) So there might have been some kind of problem existing already.

Just have to listen to our body...

ps. After family doctor saw my very scary MRI, he decided to give me a referral to the neurosurgeon... (10/22)
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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; 02-09-2010 at 09:10 AM..
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Old 11-29-2009, 07:16 PM   #6
Carrielynn
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Lightbulb Re: Anyone with Vertigo

Oh yes, vertigo was a big factor with herceptin treatments, we went to weekly treatments instead of every 3 weeks, the reduced amount at one time helped a lot. I would be spinning so bad that I would have projectile vomiting everywhere. It definitely lessened with weekly. Brain mets can be a factor but remember our new metabolic structure is grasping for stability once again, so actually vertigo is related to imbalances in our systems. Chemo completely rearranges our structure so we need to rebuild it all back up again and we will be positively different from then on. I am assuming that you did chemo before herceptin. Tykerb?
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Old 01-23-2010, 10:17 PM   #7
Jackie07
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Re: Anyone with Vertigo - my new theory

Looks like I might be able to figure out about the cause of my vertigo pretty soon.

The irritation on my right neck (same side of my bc) is now 'prominent' - validated by my being able to pinpoint it within just a couple of seconds.

Have been waiting for the referral/appointment with my neurosurgeon for several days and now started to panic a little bit - is he the right person to talk to about bc mets to neck?

My insurance is now strictly Blue Cross Blue Shield and everything has to go through their channel - BCBS had ended their special arrangement with my hospital, so now I have to use Blue Texas and wait for the paperwork. Wondered how long it's going to take before I can have a surgery or something done to take care of my neck and shoulder.

I've been very pleased with the result of my hysterectomy and oophorectomy procedure. My lips are now completely normal - skin no longer peeling - signalling normal body temperature, no more low-grade fever. My bowel movement has also returned to normal. My appetite is good and I now have energy to do some cooking - gained a couple of pounds already. The only thing that keeps on bothering me right now is the 'painful' knot on my right neck and shoulder. Based on my experience with the aftermath my brain tumor surgery - when I had the temporary left-side paralysis due to the cranial nerves being compressed by my swollen brain - there must be something pressing on the cranial nerve on my right neck right now to cause the shoulder problem. Plus now there's something truly 'palpable'...

So thankful to Joe and Christine and everyone else here that I have a place to come to and release some stress. This Board is very important to me also in another aspect - maintaining my cognitive fuction. I'd had experienced cognitive decline several times in the past after my brain surgeries and breast cancer surgery+chemo procedures. This is the first time that I have been able to maintain my normal level. The typing, the thought process, the interaction with others, the 'search' and the camaraderie...

Thank you all so much.
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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; 01-24-2010 at 01:14 PM..
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Old 02-08-2010, 09:34 PM   #8
weety
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Re: Anyone with Vertigo

I'm wondering about the herceptin and dizziness as well. Mine is not a full vertigo--just a vague dizziness. I had it while on chemo as well, but of course chalked it up to the toxic drugs. Now that I am just on herceptin, I am wondering if it is the herceptin or if it is more from the lack of estrogen that the chemically-induced menopause has done to me. Isn't slight dizziness also a complaint of normal women undergoing menopause?
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Diagnosed 7/09 with 7mm IDC ER weakly +, PR -, Her2+

TCH chemo 8/09-12/09

Ooph/hysterectomy 4/10

Started Femara 6/10

Completed year of herceptin 10/11

Zometa 1/11 (2X/yr for 2yrs)

Hopefully nothing else!!!!
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Old 02-08-2010, 11:26 PM   #9
Jackie07
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Re: Anyone with Vertigo

Weety,

Have you ever mentioned it to your oncologist? If you've had it while on chemo, there could be still some lingering effect even though you are now only on Herceptin.

I think there's a thread called 'Herceptin side effect - real or perceived'. You can use the 'Search' field to look for it. When I was undergoing chemopause, I was so tired from the chemo/Herceptin treatment plus teaching full-time, I couldn't tell what's what.

Dizziness can be caused by a dozen of things. I think the best way is to check with your doctor - did he know about your 'vague' dizziness during chemo? Has it been worse? Is it the same? Does it get worse when you bend over or change position?...
__________________
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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Old 02-09-2010, 08:56 AM   #10
Cal-Gal
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Re: Anyone with Vertigo

YES----I have had vertigo since being on Herceptin--the ONC says it is NOT the Herceptin--

I just had PET-CT and MRI---and I am ALL CLEAR so not mets going on----
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

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Old 02-09-2010, 11:49 PM   #11
weety
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Re: Anyone with Vertigo

No, the dizziness doesn't get worse when I bend over or change positions. It's just a vague sense of dizziness that comes and goes. The room doesn't spin and I don't feel like I'm moving. I just feel a little "off."
__________________
Diagnosed 7/09 with 7mm IDC ER weakly +, PR -, Her2+

TCH chemo 8/09-12/09

Ooph/hysterectomy 4/10

Started Femara 6/10

Completed year of herceptin 10/11

Zometa 1/11 (2X/yr for 2yrs)

Hopefully nothing else!!!!
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