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Old 01-23-2011, 02:30 PM   #21
krisvell
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Re: Need your Help/Advice - Got Dx with Brain Met

I just want to thank all of you again. I can't tell you how much this has helped me on so many levels. I feel that when my husband and I go to the Oncologist tomorrow that all of you will be with me too in support, encouragment and advice.
From the Bottom of my Heart, I am truly touched by your generousity. I will keep you all posted.
Sending my love to everyone.
Kris...
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 01-23-2011, 02:58 PM   #22
LoisLane
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris Thinking of you and your family. Glad this was all checked out so quickley and now it is time to rid of the pesky bugger!! You will continue to be well and be there for oh so many more of your son's birthdays. Take care kris, very impressed about your marathan success. Stay strong and positive. Best wishes Lois.
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August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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Old 01-23-2011, 06:30 PM   #23
Bill
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris, for what it's worth, my thoughts and prayers are with you. You are one tough girl/gal/Lady/woman/cookie/female/warrior-woman/lass/fine-specimen/whatever is appropriate here in the Northeast. You hang in there and please keep us posted. You're a fighter.....not a quitter....and that's what you have to keep in mind. Fight the good fight. Love, Bill
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Old 01-23-2011, 06:55 PM   #24
Rich66
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Re: Need your Help/Advice - Got Dx with Brain Met

Some info HERE
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Mom's treatment history (link)
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Old 01-23-2011, 08:15 PM   #25
Jackie07
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris,

We'll be thinking of you tomorrow.
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Old 01-23-2011, 09:15 PM   #26
Jean
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris,
I am sorry to read your post...I am glad that you are on top of the situation early. My prayers will be with you
tomorrow. Please update us on your visit. My prayers are that you will run past this.

Hugs,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
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Old 01-23-2011, 09:18 PM   #27
chrisy
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris,
Sorry, I know that was not news you really wanted to get, but I applaud your quick action to find out what was going on, because now you can formulate a plan. As you know, there are options.

I had to smile at your observation of the number of "no'' and "unremarkables". In this context it's so good to be unremarkable - but the way they word that is so odd, isn't it? Because of course, you ARE remarkable!

Take care, and keep us posted on your plan
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-24-2011, 02:01 AM   #28
Kavy
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Re: Need your Help/Advice - Got Dx with Brain Met

Hi, Kris,
I'm so very sorry for your news, I 'm going through the same the same thing right now. Hang in there.
I decided against WBR, and tried to do just gamma knife, but the radiation oncologist said the tumor was too big, and could cause problems, inflammation with the Gamma, so he sent me to a neurosurgeon, then I saw another neurosurgeon, and I also send my CD Scan to Stanford, because I wanted to do the Cyberknife instead, and they said I should have it removed before doing Cyberknife. I have 2 tumors, cerebellum 2.8cm, and occiptal lobe 1.9cm, and the neurosurgeon will remove both this week, then gamma knife the 3r one 4mm, and the tumors bed in 2 weeks.
I hope you can get just the Gamma knife, but I suggest you to send your cd scan to different places that does different SRS, before making the final decision.
Hugs and prayers,
KarlaV.
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Old 01-24-2011, 02:45 AM   #29
michka
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Re: Need your Help/Advice - Got Dx with Brain Met

Dear Kris. Just a few words to say I am thinking of you. I hope the appointment with the oncologist went well and you have a good plan. Hugs. Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 01-24-2011, 08:14 AM   #30
Mary L
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris, I too am praying for you and I wish you the best. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 01-24-2011, 08:53 AM   #31
schoolteacher
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris,

You are in my prayers. I have been away from the board taking care of my mom. Let us know what is happening.

Amelia
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Old 01-24-2011, 12:41 PM   #32
krisvell
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Re: Need your Help/Advice - Got Dx with Brain Met

I wanted post an update and thank everyone for being there for me. Sorry to be dragging you thru my drama.
The oncologist called me this morning and told me "not so fast" to be jumping that it's brain mets. She told me mets typically presents differently:
- more than one
- in brain parts other than the stem where mine is (know this is sucky location)
- accompanied by swelling and there is none so far
Something has to be done, 'cause I see two of my husband when I lay down. Trying to have fun with that and pretend I'm hugging the invisible husband that I see.

They are presenting it to the Tumor Board which meets on Wed. So I'll have to cool my jets until then and they are ready with something as far as a diagnosis/procedure. She told me to hang in there.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 01-24-2011, 12:57 PM   #33
Ellie F
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Re: Need your Help/Advice - Got Dx with Brain Met

Gosh Kris,I will be praying that it's something else that's b9! I have checked the board all day waiting to hear the outcome. I will keep all my fingers (and toes) crossed till WednesdayPlease let us know.

Hugs Ellie
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Old 01-24-2011, 01:50 PM   #34
Joan M
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris,

I had only one brain tumor in the left frontal lobe. It was 2.6 cm and there were no others. And even at that size I had no swelling.

Glad to know that your oncologist seems to be on top of everything and that they're checking very carefully.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 01-24-2011, 01:56 PM   #35
krisvell
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Re: Need your Help/Advice - Got Dx with Brain Met

Joan,
Thanks for letting me know that. It will keep me from getting too hopeful and more realistic. I am just hoping to get the same outcome that you have. You're inspiration to me.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 01-24-2011, 03:22 PM   #36
Trish
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Re: Need your Help/Advice - Got Dx with Brain Met

Whatever it is it is great news that it is so focal. My sister had an acoustic neuroma (a benign brain tumour on the brainstem) nearly 30 years ago and about 10 years ago there were signs of regrowth. This was treated stereotactically-which was quite controversial at the time. I find that interesting since it still is controversial here for brain mets. It sounds like you are in good hands and I'm glad your sense of humour is intact. Hoping for things to go well,
Trish
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Old 01-24-2011, 07:57 PM   #37
Pam P
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris - I've been reading your posts and updates and want you to know I admire the composure you seem to have through all this waiting. I pray you get clear answers soon on how to treat this. You are in my thoughts. There are so many here with experience and good advice and good outcomes for hope. Pam
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
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'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 01-25-2011, 05:27 PM   #38
CourtneyL
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Re: Need your Help/Advice - Got Dx with Brain Met

Adding my voice to the chorus of support for you, dear Kris. I too have been battling brain mets. I hope that yours turn out to be nothing. I just wanted to add that I have had tumors in my brain stem and they were not accompanied by any swelling or inflammation. So it is possible. If yours turn out to be brain mets, know that they absolutely can be treated successfully with Gamma Knife. I've been experiencing double vision as a result of another tumor found this past December. I had it Gamma Knifed two weeks ago and my vision is already improving. I hope yours does the same. Know that we are here to offer support and to help however we can.
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Send me a PM if you'd like to follow my journey on Caringbridge.
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Old 01-25-2011, 07:39 PM   #39
StephN
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Re: Need your Help/Advice - Got Dx with Brain Met

Hi Kris -

Hope they will offer you a brain PET, which would show the activity level of that spot which they are unsure of.

We had other members here with a met on the brain stem area that were treated.

I know you will get news tomorrow and it will be the opinions of several minds. But, remember, not all clinics have seen EVERYTHING. Sometimes you have to listen to your "innerds" and keep asking questions.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-25-2011, 09:39 PM   #40
Catherine
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Re: Need your Help/Advice - Got Dx with Brain Met

Kris, Thinking of you and thinking of all the wise people who have posted such great information. I got a smile out of you having fun with the invisible 2nd husband. Hang in there and as Bill says, "fight the good fight." I hope the weather back East calms down and you guys can all warm up. Hoping for good news for you.

Hugs from rainy Oregon,
__________________
Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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