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11-13-2012, 06:48 PM
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#1
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Brain Mets--what do they feel like?
Would like to know what brain mets feel like. What did you notice before being diagnosed with brain mets? If headaches, what did they feel like and were they constant, intermittent?.
I have never had headaches in life until about three months ago when a number of things happened to me at the same time. I started to have a headache that was centered from my left ear down my neck-kind of like a severe stiff neck. I also have pain/soreness in my left sinus down the leftside of my throat. Figuring out the root cause is complicated by the trach I had to get during radiation and two teeth that broke off during recent radiation. I am the poster child for BC collateral damage.
I have had a brain scan and two MRIs of my neck in the past three months and nothing found in brain or left neck. Another scan is sceduled ths Friday. i do have a tumor in the right supraclavical and am on T-DM1. I think the BC is causing my headaches but they just can't find it on the scans. Onc is saying referred pain--I find that hard to believe. Wondering if anyone else has had a similar experience. I just want to get rid of the pain.
Thanks for your help. Nancy
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11-13-2012, 07:10 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Brain Mets--what do they feel like?
Dear Nancy -
Sorry to hear all that
Referred pain is VERY real. I have been dealing with it for months now. From my Lumbar 3-4 all the way to my left knee and shin.
Good they do keep looking to find the source.
In my case there were NO symptoms or headaches at all when my brain mets were discovered.
When I have something sort of close to what you describe, I had a sinus infection. You may have a hard to diagnose ear infection. Have you been to see an ENT specialist?
Just does not sound like brain mets to me, but let them keep looking for the cause.
__________________
"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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11-13-2012, 07:32 PM
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#3
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Brain Mets--what do they feel like?
Me too...no symptoms at all.
Hope you find the answer to your headache pain...sooner, rather than later.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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11-14-2012, 01:34 AM
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#4
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Brain Mets--what do they feel like?
Dear Nancy. I understand your worrying. You are doing the right thing by being well followed with MRIs and scans.
I just wanted to share that since I am on TDM1 I have headaches. Or rather pains in my head that come and go. Not during the 3 weeks but mostly the second week. I never had headaches except while on Faslodex.
Please tell us how your scan goes and how you feel on TDM1.
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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11-14-2012, 10:04 AM
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#5
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Brain Mets--what do they feel like?
Nancy,
I'm no doctor, but you might want to try a massage therapist who is experienced in Neuro Muscular therapy. It sounds like you are having problems with the left SCM from the attachment posterior to the left ear down into the belly causing the stiff neck. I'm sure it is not the only muscle causing you discomfort from your description. Referred muscle pain can be caused when some muscle fibers remain in a contraction, and tightly contracted muscles in the neck and facial areas can cause severe headaches. It sounds like you have radiation damage and high levels of stress.
You might have to convince the massage therapist to work with you, as many are not experienced with cancer issues. Coordinating with your doctor and getting a release should be sufficient.
What does the doctor tell you to help in relieving the cause of the pain?
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
Last edited by 'lizbeth; 11-14-2012 at 10:34 AM..
Reason: added more
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11-14-2012, 10:48 AM
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#6
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Brain Mets--what do they feel like?
Self care tips:
1)Try hot packs or cold packs for short periods of time to see if it gives you relief. Typically cold helps acute conditions, warm helps chronic.
2) You can also feel behind the left ear for the lower edge of the mastoid process and put gentle pressure to encourage a release.
2) Grasp the belly of the muscles between your fingers and apply pressure. It is a long muscle belly from the ear to the collarbone and sternum. If you have referred pain you will be able to tell when you put pressure on the muscle - you feel things happening elsewhere. If you have trouble grasping it bend your head forward or lean your head to the left.
Here is information on the SCM:
http://en.wikipedia.org/wiki/Sternocleidomastoid_muscle
I hope this helps you to find some relief, and I sincerely hope you don't have any brain mets!!!!!!!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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11-14-2012, 10:55 AM
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#7
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Brain Mets--what do they feel like?
Nina had pain in her neck and pretty severe headaches. The markers and protein were way up on the Spinal Fluid, and the glucose was low (which can cause headaches). If the MRI was fine a few months ago, it is unlikely that there is brain or spine involvement, but I think doing MRIs of both areas and pulling a Spinal Fluid sample would be something to investigate if the headaches are longer thn 30 days in occurence. I repeat that it is good to be sure there is not a problem.
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11-14-2012, 08:19 PM
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#8
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Brain Mets--what do they feel like?
Thank you everyone. Very helpful suggestions. I should know more in a week or so but I am definitely going to try Elizabeth's self care tips tomorrow. I know I am tense about upcoming scans but the headaches have been going on for over two months. They relly wear me out.
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11-28-2012, 02:42 PM
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#9
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Member
Join Date: Nov 2012
Posts: 16
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Re: Brain Mets--what do they feel like?
Hi Nancy
You mentioned two broken teeth. Are they on the same side as your headache? Is one on the same side of your headache?
I've got a headache on the left side (non-breast cancer side) and am waiting to have Part Two of root canal treatment or extraction.
A nurse said that if I could get the tooth sorted out, the headache and sinus pain would go.
Just a thought - but worth exploring?
Best wishes
Catkins
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11-29-2012, 01:10 AM
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#10
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Brain Mets--what do they feel like?
No symptoms from my old brain met. But I am the queen of headaches.
As a non- doctor but very good hypochondriac, I woll go on record and say i don't think you have brain mets. I think you are having headaches from tdm1--Herceptin and possibly made worse by dehydration if you are slightly dehydrated (low in your sodium and potassium--blood chem panel). It took me a year of suffering before I correlated dehydration w migraine type headaches from herceptin on its own, including getting a headache when they started the drip too fast. Now its super slow and it helped. Also monitor chem panel for actual dehydration. Raspy voice another sign of dehydration for me...the tooth sinus sitch can also give headaches. Has anyone given you any migraine meds to see if you get relief? One test is worth a thousand expert opinions :-)
I hope they figure it out. Headaches are debilitating. Hang in there!
__________________
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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11-29-2012, 02:26 AM
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#11
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Brain Mets--what do they feel like?
Can you take pain medicine? I've found the 250 mg Ibuprofen works quite well for me. I can double the dose if necessary - but I very rarely need to do that.
Unless the tumor (if there's one - like the Central Neurocytoma(s) I've had all my life) is big enough to cause increased cranial pressure and/or affects one of the 12 cranial nerves, I've read that we basically can not feel there's foreign objects inside the brain.
With the tooth problems and other things you've mentioned, I suspect what you've been experiencing is probably tension headaches caused by the change of your 'bite' ...
It's natural, though, that we want to rule out the BC possibility.
Sending you good vibes.
__________________
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
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3 Infertility tmts 99 > 3 u. fibroids > Pills
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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
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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; 11-29-2012 at 02:32 AM..
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