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Old 07-21-2013, 03:28 PM   #1
bejuce
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Heavy head?

Hi Her-2ers,

I've feeling a little heavy headed for the past couple of weeks and was wondering if this is a symptom or sign of something I should check. I don't have a headache or feel dizzy, just a sense that my head is a little heavy. Sounds strange, but I figured I should ask the group.

Some background: I've had to work very hard the past couple of weeks due to a stolen laptop and lack of a recent back-up. I was going to bed after 1am and waking up at 6-7. Could this be from lack of sleep? Am I just imagining things?

What is the stats on likelihood of brain mets for stage 3? I'll be 5 years out from diagnosis Feb '14.

Thanks!!!
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 07-21-2013, 03:56 PM   #2
'lizbeth
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Re: Heavy head?

It could be stress and fatigue. I also envision you head down working over a computer for long hours without enough time for the muscles that attach to your occipital ridge to recover. If you lean the head forward of its axis you are putting great strain on your neck muscles.

Take more breaks and imagine you have a skyhook at the top of your head pulling it up into alignment. Find some gentle stretches.

Also sink your fingers firmly into the scalp and move them in circles to release tension in the muscles of the scalp. Scratching feels great too.

Try to get more rest, and put a call into your doctor for an assessment.

Sorry about your laptop. I hate to do backups myself.
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Old 07-21-2013, 11:11 PM   #3
karen z
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Re: Heavy head?

I am guessing it may be a combo of stress and fatigue but, whenever you have symptoms for awhile, it is best to check out with your doctor. You will feel better if you do.
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Old 07-22-2013, 04:30 AM   #4
Jackie07
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Re: Heavy head?

It is stress and fatigue unless your heaviness switches sides when you tilt your head - then it might be the cerebral-spinal fluid being squeezed into different places inside the ventricle.

I had the 'heavy head' most of my formative years because of 'hydrocephalus' ('water in the head') due to the huge tumor inside of the right lateral ventricle.
While sitting in the classroom, I would often experiment holding my head with one hand/arm on the desk. Once it got too heavy, I'd switch to the other side.

Be sure to let your doctor know about the situation.
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Last edited by Jackie07; 07-22-2013 at 07:17 AM..
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Old 07-22-2013, 06:14 AM   #5
europa
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Re: Heavy head?

Sounds like fatigue. I get the same feeling when I'm exhausted mentally...couple that with humidity and a change in air pressure...forget it, I'm useless.

Like anything though, if it persists for more than two weeks, I would let your doc know.
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PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
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every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
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Old 07-22-2013, 06:45 AM   #6
Hopeful
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Re: Heavy head?

Do you have any kind of sinus condition, or allergies? It is not unusual for me to have the symptoms come on so subtly, that I am yawning and almost falling asleep at work (the "heavy head") when I realize I have congestion, and take an antihistamine.

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Old 07-22-2013, 07:50 AM   #7
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Re: Heavy head?

I know exactly what you're talking about. It's a very odd feeling. Made an appointment tomorrow with my doctor and hoping for a MRI. I had one about 8 months ago, but really think I need another. Been feeling this way about 3 weeks, it comes and goes. I've just finished Herceptin
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Old 07-22-2013, 11:17 PM   #8
SoCalGal
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Re: Heavy head?

I'm sure that any brain mets are not heavy enough to weigh your head down - the skull and brain are heavier than any met would be :-)

More common symptoms of brain mets are headaches, or blurry vision, or slurred speech, or dizziness, or bumping into walls when you walk, or falling, etc.
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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.
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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 :((
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2/24/16 HAP plus X - markers are down
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FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
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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.
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Old 07-23-2013, 10:14 AM   #9
bejuce
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Re: Heavy head?

Lol, I like that description - no brain met heavier than the head. Thank you all for chiming in. I seem to have found the culprit for my head heaviness. I'm definitely coming down with something, as I feel very tired and just want to sleep. I seem to be catching a major cold. My co-worker that sits in the cube behind me was dealing with it last week and my body may have been trying to fight it off. God, when will I stop thinking that every little thing is a sign of mets???
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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