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Old 05-14-2008, 06:22 AM   #1
kcherub
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Angry Ringing in Ears--anyone, anyone?

Okay, this has been going on since last summer, and most of the time I can just deal with it...

When I am trying to go to sleep, I hear a ringing in my right ear (actually it is more of a varying "tone", and I can't explain it better than that). It started the middle of last summer, so after chemo #3. Some nights, it is something I can deal with, and fall asleep (Ativan-induced, of course). Last night, I literally thought I was going to run off into the woods screaming.

I thought it was only in our bedroom, as I didn't notice it in other parts of the house, outside, at work, etc. However, it was so bad last night that I went up to my son's room and stood in his closet. I could hear it!!! It might just be me zeroing in on it this morning, but I can hear it everywhere! If there is any other noise, I don't. I am so sorry that this is coming out so confusing!!!

You know how you hear of those people who just can't handle the hiccups, or ringing? I can totally relate to them! I just want it to stop, or at least be able to tolerate it. My grandmother and mother have been diagnosed with Miniere's Disease (I know I didn't spell that correctly), but I have not. Tinnitus (another spelling error, I am sure) can be caused by MD, but there isn't any real treatment and I have no idea how to get this diagnosed! My husband said one of the neurologists at his office would be the one to do it, but I just had an MRI in December.

So, last night was the worst. I honestly can't remember if I mentioned this to my ONC. (when it started, or at any point). I think I had too much other stuff to worry about. I thought it was stress, as the Ativan used to make it stop.

I hope none of you are having this, but I do hope that someone can offer me something!!!

Have a lovely day,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 05-14-2008, 06:33 AM   #2
Hopeful
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Krista,

I developed ringing in the ears (tinnitus) about a month after I had started Femara and following my third every-three-week Herceptin infusion. It is hard to say, for me, which is the culprit, but I have always believed it to be the Femara because the ears have ER receptors and there were anecdotal cases of people taking birth control pills who temporarily lost their hearing or had other hearing problems that stopped when the pills stopped. I actually got the drug manufacturer of Femara to write up my symptom as part of their after market study for the drug. I went on Arimidex for a while, and the intensity lessened, but I could not tolerate the arthalgia, so I went back on Femara. I completed my year of Herceptin last July.

At the moment, it seems to get better and worse from day to day or time of day to time of day, with no rhyme or reason I can discern. It is not so bad as when it first appeared; I don't know if my overall hearing is getting worse or the symptom is improving. I have been using Estrace in small amounts for VA since last July, so maybe that is having some effect.

Anyway, there has been nothing I have found that makes it improve - it just goes as it goes. Someone from the board sent me a link last week to a study of Cialis for tinnitus in men. I am not sure anyone knows what truly causes it - it is something that apparently happens in the brain and not in the ears. It can be caused by hypertension, so, if you have not had your blood pressure checked, you can do that. Otherwise, I am as interested in treatments as you are. I find it is loudest when there is absolute silence in the room. Have you tried sleeping with one of those "white noise" machines? I tend to set the timer on the tv, and doze off to that.

Best of luck to us both,

Hopeful
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Old 05-14-2008, 07:28 AM   #3
Terri B
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I haven't been diagnosed with anything like that, but I know that I cannot sleep without the "drone" of my box fan. It has been like that for years and years. I cannot sleep in a quiet room as it sounds like a choir of voices singing to me. UGH!!!

You should get a fan and let it hum you to sleep.
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46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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Old 05-14-2008, 10:14 AM   #4
StephN
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Wink

Make an appointment with a good AUDIOLOGIST. Even my daughter had a problem with this and they did an adjustment (something to do with crystals in the inner ear) and she no longer has this.

Good luck. I have the "tones" myself at times. Especially when my head is plugged up due to allergies. I will wake up in the middle of the night thinking that someone is mowing their lawn a couple of yards away!
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 05-14-2008, 11:00 AM   #5
swimangel72
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Krista my ears started ringing a couple of years ago, before I was dx'd. I didn't pay any particular attention to it, until I started getting spells of vertigo. My PCP sent me to an ENT doctor who diagnosed a problem with my inner ear "crystal"......he said sometimes it gets out-of-place, due to aging, or whiplash. I believe mine was caused by riding too many roller-coasters that summer! My ENT performed a procedure called an "Epli Maneuver" which totally cured the vertigo. He said ringing in the ears is very common with aging and with this condition - I also had an audiologist check my ears - and I also had an MRI of the brain to check for any abnormalities - but everything was fine. I still get the ringing in the ears - most notably on my right side - and most noticeable at night. Why night? Because everything bothers me at night when there's nothing else to distract me from aches, pains or noises in my ears. It's something I've just learned to live with. But I hope you'll get yours checked out soon - if your ringing is a side-effect to your chemo, then hopefully it'll stop when you stop treatment. Good luck Krista!
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Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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Old 05-14-2008, 02:15 PM   #6
hutchibk
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I have had on and off ringing in my ears since starting my treatments... it has only really gotten better since I stopped Taxol/Herceptin a year ago. I do notice it gets worse when I don't drink enough H2O and when my spring mold and pollen allergies kick in.
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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 05-14-2008, 04:07 PM   #7
SoCalGal
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I know that clenching your jaw at night can also cause ringing in the ears. I also know that stress is one of the most common causes. I thankfully have not had ringing but my sister is dealing with it and a best friend was driven nuts for several weeks and then it abruptly stopped.

If I were you - I would see about a night guard from my dentist if appropriate. I would also rule out thyroid-or any blood related problems (high pressure; anemia) and any western medicine problems - including calling and telling your oncologist. If nothing is discovered I'd then try acupuncture and seeing a chiropractor and all the alternative things that can help balance your system. I think this is a very common problem yet I imagine it is very hard to cope with it. That's all I can suggest.
Best-
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-14-2008, 05:38 PM   #8
Debra
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Yes - The best way to describe mine is a boat-motor sound from a distance. I too thought it was just in my bedroom. I even crawled in the attic thinking it was the attic fan. No one else in my house hears it. If there is noise around me I don't notice it. When it is silent (such as night-time in bed) it is there and won't go away. I am hoping to see the ENT in the next month as my last appt. with him got canceled. As I type this, it is there!!! You are not alone. I would guess it is associated with either chemo or herceptin.
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Debra

Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 05-16-2008, 02:50 PM   #9
kcherub
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Thanks, ya'll! We turned the bathroom fan on and that seemed to help! I hope it eventually goes away, though.

I am going to call my ONC. on Monday, and also see about getting in to see an ENT. It could very well be some inner ear thing...

Thank you!
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 05-18-2008, 02:29 AM   #10
Bill
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Krista, I'm so glad the advice of your Sisters helped. I have a ceiling fan in my room, and I can't sleep well without it on. I'm glad your fan helps.
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Old 11-10-2010, 03:48 PM   #11
Delaney
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Re: Ringing in Ears--anyone, anyone?

I had tinnitus (probably spelling it wrong) years ago when I perforated my eardrum. Two weeks taking Gingko Biloba (from healthfood shop) and it went away. Dont know if this would work if its chemo induced but it worked for me.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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