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Old 01-07-2007, 05:12 PM   #1
Sherryg683
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How do brain met headaches feel?

Just a question for those of you who have brain mets. Exactly what sort of headaches have you experienced? Are they more in the front, around temple, in the back or all over? Do brain met headaches have a common characteristic. I have just had awful, consistant headaches that start from the back of my neck (mostly on left side) and run up to my occipital bone in the back of my head. They just don't seem to go away and it's been over a month. It also hurts on the right side sometimes, just not as bad. Sometimes it feels like a sharp pinch or stabbing and it hurts when I sleep. I had a brain MRI done a little over 3 months ago in the middle of one of these episodes and it all came back clear. I have other brain MRI's earlier when I was having the headache in the front (like sinus) and they were all clear too. I have had neck problems and my hubby and Oncologist seem to think they are because of my neck or stress headaches, someone even suggested migranes but of course I worry about the worst. I just feel stupid to keep asking for MRI's and they all keep coming out clean, don't want to be like the boy who cried wolf. I am just tired of my head hurting and don't like to take pain pills all the time. Can anyone who has had brain mets shed some light on how these headaches feel. I haven't had any vision problems or thrown up or anything...sorry to ramble...it's the headache causing met to do this..lol..sherryg683
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 01-07-2007, 08:04 PM   #2
MichelleMoon
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Don't know if I'm a good example, but...

Hi Sherry,

I was diagnosed a week ago with brain mets (happy new year) after headaches prompted me to have an MRI. My oncologist has been very good to order tests when I freak out and did order the MRI to 'put my mind at ease'. My headaches started in my front/facial area...mostly like a sinus headache. Then it seemed the pain became more random throughout my head. I convinced myself for a few weeks that it was holiday tension, or some pain my fear was creating. My brain mets are very small (all less than 5 mm) so both the oncologist and radiology oncologist really doubt these tumors were causing headaches. I guess we'll never know...just glad I caught it before I started having any more serious neurological symptoms.

Have you had an MRI recently? This was the first I had since become stage 4. I (wrongly) thought PET scans were superior and didn't question using MRI's for the head.

I'm sorry, because I probably didn't make you feel any better! Our minds play horrible tricks on our bodies. Best of luck and do keep us posted.
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Stage 2 '99, triple negative, 5 nodes involved
mastectomy, AC + T, rads, '01 TRAM flap
Stage 4 '06, lung mets, ER/PR-, HER2++
07/06 - 11/06: Taxol + Herceptin to 'strong partial remission'
11/06: Herceptin every 3 weeks indefinitely
01/07: brain mets, finished WBR, NED in head!
04/07: Xeloda and Tykerb for lung met progression
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Old 01-07-2007, 08:38 PM   #3
Sherryg683
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I had an MRI a little over 3 months ago, due to the same sort of headache I am having now...it was clean. Then I had an MRI 3 months previous to that because of the frontal sinus headaches I was having..they were clean. So I hesitate to be the "crazy brain" lady and ask for another MRI so soon. I figured I would wait till March when I get my next set of scans and just have them do it then, I really don't want or think it's necessary to have brain MRI's every 3 months like I am doing, I just wish these dang headaches would go away so I can relax..sherryg683
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 01-08-2007, 04:47 AM   #4
MichelleMoon
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Sounds good!

My doctor left me with the impression these brain mets just don't pop up over night and start causing headaches.

With your recent tests, sounds like you should go back to dancing with NED (I hope to be there after my WBR) until the next set of scans. I know it's easier said than done!

Take care, Sherry.
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Michelle


Stage 2 '99, triple negative, 5 nodes involved
mastectomy, AC + T, rads, '01 TRAM flap
Stage 4 '06, lung mets, ER/PR-, HER2++
07/06 - 11/06: Taxol + Herceptin to 'strong partial remission'
11/06: Herceptin every 3 weeks indefinitely
01/07: brain mets, finished WBR, NED in head!
04/07: Xeloda and Tykerb for lung met progression
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Old 01-08-2007, 06:15 AM   #5
janet/FL
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Michelle, are you not a candidate for gamma knife or cyber knife treatments? Why WBR, first.
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Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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Old 01-08-2007, 07:14 AM   #6
MichelleMoon
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Why WBR?

I have 7 measurable tumors between 2 and 4.5 mm. The radiology oncologist is concerned there are more that can't be measured or seen yet.

Should I be challenging this treatment plan?
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Michelle


Stage 2 '99, triple negative, 5 nodes involved
mastectomy, AC + T, rads, '01 TRAM flap
Stage 4 '06, lung mets, ER/PR-, HER2++
07/06 - 11/06: Taxol + Herceptin to 'strong partial remission'
11/06: Herceptin every 3 weeks indefinitely
01/07: brain mets, finished WBR, NED in head!
04/07: Xeloda and Tykerb for lung met progression
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Old 01-09-2007, 08:56 AM   #7
KathyA
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Sherry good luck in your search for the answer. Get as many scans as you want. You never know. don't feel bad about it. It's your life.
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Old 01-09-2007, 01:48 PM   #8
Lien
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headaches

Dear Sherry,
I don't have brain mets but do have headaches sometimes and they are really bad. Used to have them almost every day because of neck problems & food allergies. If I were you, I'd get myself to a good physiotherapist. See if that helps.

Good luck

Lien
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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