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Old 08-25-2011, 01:36 PM   #1
kiwigirl
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Location: Matakana which is one hour north of Auckland, New Zealand.
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MRI results and now lack of sleep due to headaches

Hi all

I finally got my MRI results.... No new tumors in fact one has gone all together. All have had a large reduction but still there.
Any way i don't know what to do Thursday night last week was a really bad night headaches all over the place. Phoned onc said may be sinus or virus. Anyway this has gone on for a week I had another bad night last night and am getting my sister in law to help with children.

I asked about Gamma knife and my onc said it would not be suitable for me?????

I'm am planning to to go Honolulu 7th Sep and have requested the gamma knife center there look at my notes and see if they will take me.

I don't know whats going on not sure if i have new mets or my old mets are growing or maybe the pain is from shrinking. Whatever it is I don't like it.

We don't have gamma here and it took 6 weeks to finally get my results there are not enough doctors or money in our budget so they try an leave us alone for as long as they can.... And then its to late.

Lets just hope my night time pain in my head is just that a pain and nothing else.

Luv to all
Jacqui
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Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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Old 08-25-2011, 01:42 PM   #2
Pam P
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Re: MRI results and now lack of sleep due to headaches

Jacqui - Good news on the MRI results. But why the pain. Glad you can get a 2nd opinion soon and pray it's still good news. Does anything help the headache? Pain meds? Keeping you in my thoughts for some relief and rest. Pam
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
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6/03 herceptin, aredia & faslodex
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2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
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Old 08-25-2011, 03:43 PM   #3
ElaineM
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Wink Re: MRI results and now lack of sleep due to headaches

I hope the headaches can be reduced. Ask one of your docs to prescribe something temporarily until you can get some answers and a new treatment plan if you need it.
Where are you going in Honolulu? I think both Queen's Medical Center and Hawaii Medical Center have gamma knife. Dr. John Lederer would be a good radiologist to talk to. He works at both hospitals. If you do a regular internet search for Queen's Medical Center in Honolulu you will find the link. After that go to "Find a Physician" and search for Dr. Lederer's contact information. I have never had gamma knife, but I have talked to Dr. Lederer about other things. He is knowledgeable.
I live in Hawaii, but I will be busy when you arrive. How long will you be here?
Take good care of yourself.
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Old 08-25-2011, 09:48 PM   #4
Trish
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Re: MRI results and now lack of sleep due to headaches

Hope the headaches ease, Jacqui and I hope there is a good explanation for them. I sympathise re problems getting brain mets diagnosed early-we have a similar situation in Australia but there are at least there is a a couple of places in Sydney that do Gamma treatment.
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
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Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
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10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 08-25-2011, 10:19 PM   #5
JennyB
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Re: MRI results and now lack of sleep due to headaches

Jacqui,
I know this is different as I don't have the mets but I have had headaches for about 5-6 weeks now. Went and got my eyes tested - got new glasses (didn't previously wear them) helped a little not a lot. Then my darling husband reminded me about my sinus issues in Sydney when AUS was in drought - I got some nasel spray anti histamines and sudafed - 4 days later nearly headache free just a little stress headache over the top of my skull!
For ages I had been saying it was the Herceptin but apparently it wasn't!! Try the sinus approach it can't hurt?
Hope it gets better soon and congrats on the MRI results great results.
Jenny x
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Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
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Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
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Praying the Herceptin is as good as its hype!!
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Old 08-26-2011, 01:13 AM   #6
Blondie
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Re: MRI results and now lack of sleep due to headaches

I live in Auckland too. I have had sinus problems over recent weeks. Thought it was just the herceptin. However, my husband, other family members and people at work have been complaining of sinus problems. There are few strange virus things going around at the moment. ( Chicken pox and measles are doing the rounds).
Hope the headaches disappear soon.

Blondie
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First Primary Right side:
2cm tumor, Grade2, ER+/PR+
1/11 nodes +
Lumptectomy, radiotherapy
CMF chemo and 6 yrs Tamoxifen
Retesting in 2010 revealed tumor to be HER2+++

2009
Microcalifications on mammogram
12 biospies- all clear
MRI-all clear

July 2010
Elected mastectomy right side,
10cm IDCS
1cm Tumor, Grade 3
Triple positive

3 Taxotere, 3 FEC
1 yr Herceptin- finish in October 2011
Tamoxifen
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