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Old 11-15-2008, 11:52 PM   #1
rinaina
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checking out my vertigo and need prayers

I do not normally worry or get nervous until I have to or have a definitive reason to, however, I will admit I am very frightened over this vertigo I have been experiencing for several weeks now. I have an appointment with my ENT doctor on Monday and will also call my oncologist on Monday to discuss this with him. I know I probably should have called him first but tried not to panic. My internist first tried treating me with bonine which didn't do too much and then referred me to my ENT. I know the nature of Her2 and it's high rate of recurrence and metastasis but I didn't want to jump to the worst conclusion right away, but the more I think about it and experience it, (subtle as it is), the more I worry that it could be a sign of the worst, brain mets. I keep telling myself not to panic because I was stage 1, no node involvement and I had my year of herceptin but I am still very worried. Please say prayers for me. I promise, I will call the onc on Monday and will report back as soon as I know anything. Thank you sisters for your support.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 11-16-2008, 01:11 AM   #2
Chelee
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Rina, I totally understand your fear...we've all been there. My upper back has been hurting and my breathing feels affected and I'm freaking out. So I totally understand. It's pretty normal for that panic to set in.

But seriously...there are so many causes for vertigo. I've had vertigo off and on for years. It happens when I lay on my left side or bend my head the wrong way, then everything spins. My ENT & primary both say it's just positional veritgo. But when we have this cancer cloud hanging over our head we natually think the worse.

I think you did the right thing by seeing an ENT first. I'm sure he will find the cause of your vertigo. Something is probably going on in your "inner ear". That has always been the case when I've had vertigo...even long before bc. I know its hard...but try not to worry...I will almost guarantee you that your ENT will get to the bottom of this. All you might need is an antibiotic. I was falling into the walls once...it was awful. I thought something was really wrong with me!!! But I just had a nasty infection and with a shot in the back side...and a "Z-Pack", I was good as gold. So take a deep breath and try to relax till Monday. (Even thought I know its easier said then done.) Hang in there.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 11-16-2008, 01:41 AM   #3
Lien
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I know of someone who had the same symptoms. Her ENT did a procedure in which the fluids in her inner ear were manipulated. Problem solved. She was as scared as you are and is a BC survivor too.

Both my children and I suffer from various allergies. We get vertigo every now and then.

There are lots of other reasons for vertigo. You did all you could to prevent a recurrence and with your path stats it's highly unlikely to be brain mets.

Still, we worry. So I'm sending you calming, healing vibes.

Hang in there girl!

Hugs

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 11-16-2008, 05:41 AM   #4
Sheila
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Rina
I know exactly how you feel, and I know the worry. I also had the same thing a few months ago, along with severe nausea and headaches...after a brain MRI, which is what they need to do to get a definative answer, I was diagnosed with benign positional vertigo...they did tell me that this is more prominent the older we get (gee thanks). You are in my prayers that this will be nothing...but get the brain MRI first, then after mets are ruled out, they can look for the cause.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 11-16-2008, 07:24 AM   #5
rinaina
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Once again, thank you all for your encouragement and support. I feel a little better after reading all of your replies and am more hopeful that perhaps it is just positional vertigo. Years ago I had many problems with ear infections and had to have tubes put in several times but once I started taking an allergy pill on a regular basis my ear infections stopped. Tomorrow can't come fast enough! Hugs to all for making me feel a bit more at ease. Thanks for your understanding as well....only another her2 bc survivor knows why we would worry about this.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 11-16-2008, 08:43 AM   #6
Gerri
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Rina,

For peace of mind make sure you get that brain MRI Shelia was talking about. I was having headaches (more than usual), felling a little woozy, and walking a little lopsided at times. I played it up a bit with my onc because I was concerned. She immediately ordered an MRI and it came back just fine. I'm really glad I had it done, just to rule out anything bc related.

Good luck and let us know what you find out.
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
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Old 11-16-2008, 09:05 AM   #7
caya
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Rina,

I'm sorry you have to deal with this vertigo problem - but as others have said it could be many things. Have you been taking any new medications lately? Even something that would seem relatively inocuous - my oldest DD was on a drug for mild acne a few years ago, and about 4 - 6 weeks after starting to take it developed vertigo - really dizzy. We had her at neurologists, the dermatologist etc. - Finally our GP diagnosed her - a very rare side effect of that particular drug -but she had seen it in her practice a few times over the years with teenagers/young adults. As soon as my DD stopped taking that pill, the vertigo subsided (although it took awhile).
Could also just be a virus, like labrynthitis (inner ear virus that causes vertigo - my DH had this a few times, there is basically nothing you can do for it, it just has to pass).
Obviously you have to get this checked out, but I am just trying to give you other possible reasons why you could be experiencing this, other than brain mets.
Try to be positive, as others have said, with your path stats etc. it is so unlikely to be brain mets. But of course this is always our fear as BC, especially HER2+, survivors.
I am praying for you today -
xo Caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
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Old 11-16-2008, 10:44 AM   #8
rinaina
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I just have to say thank you very much to all you great women. If one of us ever is unsure, worried or upset there are always so many who are there to help in anyway they can. I am so appreciative and thankful for this forum and so fortunate to have it to turn too. I wish I had more time to devote to it but everyone is always in my prayers and I feel honored to be a part of this great support group. You have all made me feel more at ease with your replies and I will definitely be consulting with my onc about an MRI as well as see my ENT doc tomorrow. Will post again once I know anything definite. Thanks again.
xoxo,
Rina
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 11-16-2008, 04:55 PM   #9
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Best of luck when you go to your Dr. I will be thinking
of you this week.
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 11-16-2008, 06:51 PM   #10
Mary Jo
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Hi Rina,

I wanted to chime in too. Just wanting you to know that I pray that Monday comes quickly for you and that brain mets are ruled out PRONTO. I, too, suffer from occasional dizzy spells (as I call them). They have been going on for over a year now with no rhyme or reason for them. They will be gone for months and then reappear. Mine seem to be sinus related. I have never been to my onc. because of it or any other doctor HOWEVER, have thought of it on occasion. Everytime I think I should call the symptoms disappear for a while. So, I haven't.

I'm sure your dizziness too is related to something other than brain mets BUT I do understand the worry. Boy, do I. As I always say to people (just to be funny) I've had cancer in every part of my body in the past 3 years and so far I'm still doing well. Haha!

Love to you "sister" and prayers too.

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 11-17-2008, 01:18 PM   #11
suzan w
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I too had a bout with vertigo...and was so sure that it was something fatal, I suffered with it for 2 months before finally going to the ER. I insisted on an MRI (and got one!). It turned out to be vertigo, plain and simple...and eventually cleared up. It is so true that we worry about every little pain...let us know how your appointment goes!
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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 11-17-2008, 01:54 PM   #12
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Rina,

I hope your doctor's appointment goes well.

Amelia
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Old 11-17-2008, 02:33 PM   #13
Chelee
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Rina, Just wanted you to know I am thinking about you. Let us know how your appt at the ENT went today. Hope you got some answers.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 11-18-2008, 11:38 AM   #14
Leslie's sister
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Prayers

Rina:

I just wanted to post that my thoughts and prayers are definitely with you. I will pray that this is nothing. Please keep us posted!

Lisa
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Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 11-18-2008, 11:53 AM   #15
runtolive
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my sister recently had something very similar.. it was a virus which attacked her 8th cranial nerve.. causing hearling loss, vertigo, tinnitus, bad tinnitus.. the acute phase lasted about a month.. and after 3 different ENT specialists, she got a diagnosis she believed.. she did the meclizine, voltaren , stimuli exercises to reteach her brain to recalibrate her balance.. etc etc she missed a few weeks of work, could not drive, etc..

she is better now.. but has some permanent hearing loss.

run to live
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Old 11-18-2008, 12:38 PM   #16
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Talking Hey Girl

Still saying my prayers and awaiting your update.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
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12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 11-18-2008, 01:12 PM   #17
Jean
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Hi Rina,
I had the same thing...I wonder if it is not somehow connected to the drain of Estrogen since we are taking AI's. I had a MRI of my brain and all was clear.
I think it is good to have just for a base line anyhow.
My dr. did say the following, that certain foods will interact...MSG being a big contributor (found in salad dressings) and even on fresh salads to maintian their fresh appeal....even some chemicals found in wine.
This could set off the vertigo...while I was at the BCS last Dec. I know it was from the salad! It was all I had eaten...a large plate of fresh salad with dressing.
Try to determine when you have the attacks, is after a dinner out, a glass of wine?...keep track.


I have been vertigo free for about 9 months now. It is important if you feel it coming on to take the medication
ASAP...much like our nauesa meds, once it gets control,
it is difficult to get out of the spiral.

All good wishes...to you.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 11-19-2008, 07:13 AM   #18
rinaina
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Update on vertigo and Happy Thanksgiving to all....

Thank you for all your input, concern and suggestions. I saw the ENT dr on Monday and they did a hearing test and exam. In my left ear, which is the one I have a history of ear infections with many years ago, I have a very minimal loss of hearing. The doctor examined me and found some scar tissue in this ear due to the years of tubes I had placed. He believes I am most likely dealing with an inner ear problem but ordered an ENG test that will be done next week. If the findings are inconclusive after those tests, he said he would order an MRI. My onc is in agreement with this game plan for now. Last night I had my most severe bout with vertigo along with a killer headache, (almost felt like sinus headache), and some nausea as well, but this morning I feel fine.
Jean, just wanted to mention that I was er/pr negative so I am not on any aromatise inhibitors but thanks for thinking of that.
Will be out of town day after Thanksgiving for a week. Heading south for some much needed r & r and warmth, (we hope). Will check back as soon as I know anything more. Thanks again for your help and support. Wishing everyone a wonderful and warm Thanksgiving.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 11-19-2008, 07:32 AM   #19
yankeebikachic
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I get terrible vertigo with my allergies. Try not to worry, it may just be fluid in your ears. Mine got so bad once that just turning my head quickly made the room turn upside down. A little fluid in the ears/sinus passages can do crazy things.
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Old 11-19-2008, 07:36 AM   #20
rinaina
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Unfortunately there was no fluid in my ears according to my ENT doc, but you raised good points. Thank you.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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