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Old 11-13-2007, 01:33 PM   #1
nitewind
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Just a little worried

About a month ago, I started having headaches. They are in the back of my head and it's a very "heavy" feeling. Sometimes when I get them my eyes go "funny" on me, not really dizzy just hard to get things in focus. My onc acuses me of always having something new going on so I decided to give it a month before I told him about the headaches. When I did tell him, he didn't make much of it, just said well we will watch and see. That was last Friday.
I made an appointment with my primary care doc for tomorrow. He has always been very very thorough and I'm sure he will check this out too.
I also have an appointment with my eye specialist next Monday, I've developed macular degeneration and thinking maybe this is causing the headaches (I hope).
I'm nearly finished with my year of herceptin so naturally I'm thinking, uh oh, maybe it's brain mets. Trying real hard to keep that thought in the back of my mind but not doing so well with that. I know that Herceptin can't cross the blood/brain barrier. Anyway, I'm just a little on edge and would appreciate any good thoughts from you lovey girls. Also, anyone with mets to the brain, did you have symptoms of any kind?
I appreciate your input and prayers.
Hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 11-13-2007, 02:05 PM   #2
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
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Talking Hey Girl

Wanted to write to let you know I am sending a big hug your way. My husband did not have any symptoms before our discovery of brain mets. He had a medication headache because instead of taking pain meds on schedule he used to try to tough it out, not anymore. He is very in-tune with his body and even knew he was direly ill before diagnosis and the brain mets. I do know of the thoughts that plague us all whenever there is pain or a twitch, etc. These thoughts come to you in the middle of the night, they scream outloud. I cannot tell you not to worry I can only tell you to try to just think of the "WHAT IS" and not the "WHAT IF". And as a Fine Warrior once said to me....."BREATHE". Take a deep breath and try to do something nice for yourself.

I know it is tough but what is not with cancer?? I have you tucked neatly into my thoughts protected from whatever evil I can save you from. I shall keep you in my prayers which is where you always are anyway!! And when I pray for you I will speak a bit louder from now on. Always in my positive thoughts and prayers>>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,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
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 11-13-2007, 03:39 PM   #3
KellyA
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Hi there,

First let me say that it is ALWAYS a good idea to check out any symptom that has been going on for a few weeks or more. It is better to be safe than sorry and if nothing else, the peace of mind is worth everything.

Now let me try to make you feel a little better. After my last Herceptin (within a day or two), I began having headaches. They were located behind my eyes, and in the back of my head. My vision would get worse with the headaches, and on 2 or 3 occasions, my face even went numb in the area around my eyes. Very scary. I had them for 5 or 6 weeks- they would start shortly after I got up in the am and I would go to bed with them. Anyways, I had not had any issues with headaches before and to be honest, this scared me half to death. I was so frightened, that I even went into denial mode and did not tell my doc about it (very strange for me to do since I always seem to have new issues also). I played dumb and asked for an antibiotic (trying to rationalize a sinus infection, even though I had never had one before) and I also went for an eye exam to check my vision. I started taking an old muscle relaxer in the hopes that it was muscular.

Here's what I found out. After several special eye tests and pics, everything was normal, except that my vision prescription had DOUBLED since chemo. My doc explained that the tearing mechanisms can really get messed up and cause all kinds of vision difficulties with chemo. The muscle relaxers did help with the pain in the back of my head, so those were probably muscular. The "frontal pain" behind my eyes stayed constant and eased up after several weeks. I eventually told my onc about it all and he explained taht the Herceptin can cause all kinds of sinus issues, and he scolded me for not telling him. So, long story short, I had many different contributors with the headaches. Everything is so complicated with chemo and Herceptin, and we have to remember that these are big time drugs with big time side effects. I explained that I feel silly sometimes having all these problems ( especially since I was very healthy before all of this mess) and that I am afraid that I will look like a hypochondriac. My onc, who is wonderful, made me feel much better. My body is not the same anymore, at least for now, and all kinds of weird things may happen, so it is very important to let him know EVERYTHING and let him decifer whats what. Never feel funny about being cautious. We need to be cautious, and have every right to be. I mean its not like you just broke a toe or something. There is real reason to be very vigilent and careful. And I for one can't tell whats what anymore. This is a whole new body that I'm not familiar with.

So try not to worry, there are so many things it could be, but please do share with your docs and look out for yourself. Never feel funny about "fessing up". :-)

Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 11-13-2007, 07:37 PM   #4
Barbara2
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This is a recent comment I made about headaches that I had off and on (but more on than off) for a couple of months:

"My head also hurt in the back, but usually on just one side. My neck is quite stiff and sore, and the muscles across the top of the back get really sore. For a while I wondered if my fibromyalgia, which after the arrival of cancer was put on the back burner, was wanting more attention. The sticky pads that can be applied to muscles usually help quite a bit."

After getting brain mets cleared with an MRI, I went to my family physician with questions about these headaches/muscle pain/blood pressure.

Regarding the headaaches, he said often the back of the head can ache due to muscles spasms in the neck. He also suggested that I may want to look into some deep muscle rubs from a professionnal.

After my visit with him I became more agressive with the neck and shoulder muscles by putting on "Biofreeze" a liquid gel which actually seemed to help quite a bit with both muscle soreness and the headaches too.

I also have some vision problems which are the most noticable after driving on a sunny day. Things are quite blurry after the strain on my eyes.

Hope I've helped some.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 11-13-2007, 07:44 PM   #5
tousled1
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Susan,

I had a small brain met and had absolutely no symptoms at all. It was only 5mm so I was fortuante that it was caught early. I had the CyberKnife procedure done and my last MRI of the brain showed that everythng was clear. I had the brain MRI just as a routine since it had been a year since my last brain MRI. If you would feel better getting a brain MRI then insist with your onclogist that you get one.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 11-13-2007, 08:57 PM   #6
hutchibk
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My brain mets had no symptoms. We found them on a screening MRI, which I asked for since we had done the last one 20 months prior. My onc was fairly confident that we wouldn't see anything, but my tumor markers had slowly started to climb over 3 - 4 labs, so he agreed that it would be a good idea to rule out anything in the brain. He was a little surprised to see them, but since we found them very small and early, we had a few different treatment options to consider. I am a proponent of ruling things out rather than taking the chance.

That said, it seems many of us have recently learned that we have arthritis in our neck. I wonder if that can contribute to headaches. Also, it is allergy season and I often get seemingly consistent headaches due to allergies. This summer, I had 3 weeks of headaches with dizziness and focus issues which scared me tremendously, but turned out to be inflammation in my middle ear caused by pollen allergies. It went away when I started a disciplined morning regimen of Allegra, Motrin, Nasalcrom spray and Sudafed. By day 3 my ears were popping and I had no more headaches or dizziness.

So it truly can be anything...
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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 11-13-2007, 10:13 PM   #7
BonnieR
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what a shame your onc causes you to feel that you can't tell him everything. I am glad you have other doctors to report this to. You deserve the peace of mind...
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 11-14-2007, 06:03 AM   #8
nitewind
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Thanks everyone, my appointment with my PC is at ten this morning, I'll post an update when I get home. Thanks for all your encouragement.
Hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 11-14-2007, 11:42 AM   #9
nitewind
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Just got back from seeing my primary doctor. I just love this guy, he is so thorough. He was putting me thru the paces, checking all my reflexes and the strength in my hands and arms. I did fine till I had to follow his little flashlite with my eyes. Seems that when I move my eyes back and forth, everything kind of goes off focus and I have to stop and close my eyes for a minute or two. He said he'd like to have an MRI done but knowing that I am very claustrophobic, we will start with a scan. I'm scheduled for this Friday at 8 am. If he sees anything unusual, we will go from there. This is what I had expected from my oncologist but no luck there. So, anyway, Friday is the scan, Monday I see the eye specialist and Monday afternoon I see the urologist for a scope (sounds like fun, huh?). Don't you just love doctors and tests?
Please keep me in your thoughts and prayers, I'll let you know how it goes.
Hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 11-14-2007, 12:02 PM   #10
Vi Schorpp
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Susan

I'm glad you saw your PCP. He does sound thorough and although I'm sure you're not looking forward to more testing, he's doing the right thing. Of course you are in my thoughts and prayers. Overall I think you'r efortunate to have a PCP who "hears" you. Please take care and keep us all posted.
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Old 11-20-2007, 08:21 AM   #11
nitewind
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Another quick update, good news.....The cat scan on my brain showed normal (imagine that, me normal!!) Thanks to God and to all of you for your prayers.
Hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 11-20-2007, 08:22 AM   #12
tousled1
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Thank God everything turned out ok. We always knew you were completely normal!
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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