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Old 06-21-2007, 06:36 AM   #1
Shahyan
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Join Date: Apr 2006
Posts: 19
Tykerb - Headaches?

Hello,

My mother was diagnosed with extensive brain mets about a year and two months ago. She underwent WBR + Temodar, 3 months from the the WBR it showed almost all lesions had disappeared. 6 months on Temodar and a scan revealed that the brain mets had return all though not quite as many on initial diagnosis. She was them put on Carboplatin+Gemzar+ (Herceptin as always) and in January 2007 a 50% regression of all lesions in the brain was noticed.This May a scan revelead very little progression and our oncolodgist actually termed this as stable disease (although I felt it was just to put us at ease) and suggested that we get Tykerb asap. She has been on Tykerb+ Xeloda since then.

In the last one year, my mother has shown the following symptoms:

1. Headaches - which went away after WBR, but in the last 4 months have been intermittant. She gets its somtimes (and we as well oncologist felt it had to do with her eye operations (mentioned below))
2. Her eyesight detoriated appreciably from -2.5 to -8.0 in both eyes before the first brain scan was done. She has since then consulted an eye specialist and the specialist said that she has cataract and accordingly my mother went through a laser surgery to remove the cataract. Her eyesight is now better than it used to be, but not yet perfect. In fact one of her eyes gets blurry, but the blurryness goes away when she puts eye drops for about 30 minutes. It is because of this I feel comfortable that her blurriness is not caused by brain mets, but is infact her new lense.

Remember she has had headaches on and off in the past four months but the intensity, duration and even frequency had reduced sine January which is why we felt the drugs are working.

However, in the past two days she has had a constant headache which starts off strong in the morning, she has painkillers which greatly reduces the headaches but do not eliminate them. My mom feels it is migrane, but I am so scared....she is so strong...what do i do....I know maybe a brain scan again, but what if its bad...we dont have anymore options left....my mom in fact has also been on Boswella for 6 months now........what do I do? Any suggestions even drastic and not conventional would help

Please I'd appreciate any advice I can get...I am just very scared and worried...

Also just wondering...am I the only person who thinks almost every 30 minutes of the waking day and prays to God in that 30 minutes...My family thinks I may be stressing myself out.

Shahyan
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Old 06-23-2007, 04:59 AM   #2
Shahyan
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Join Date: Apr 2006
Posts: 19
Anyone?

Hi ,

Just an updated. She is still having headaches in the morning, but they are minor. Not sure if the pain killers are bringing down the intensity. Any advice would highly appreciated.

Thanks

Shahyan
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Old 06-23-2007, 08:49 AM   #3
rentrac
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Join Date: May 2007
Location: Eastern NC
Posts: 65
Dear Shahyan,
Have you called her oncologist and told him/her about the increase in headaches? If a scan is ordered, it may be scary, but the anxiety of not knowing and imagining all the awful things our brains can conjure up is usually much worse than knowing what is really there and figuring out how to manage it. Good luck, and prayers go with you and your mother.
Rentrac
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Old 06-25-2007, 04:14 PM   #4
hutchibk
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Posts: 3,519
Headaches can be a somewhat common side effect of Xeloda. Many find that it can trigger their migranes. Lowering the dose a little can help make them go away. Tell the doctor! They can help.
__________________
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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