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Old 10-20-2007, 05:54 AM   #1
dhealey
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Location: moved to Lancaster, Pa in June, 2010
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Brain MRI today

I am freaking out alittle. Tuesday I had a herceptin treatment and saw my oncologist. Showed her a swelling I have in my neck and complained of dizziness and stumbling problem I have had lately. She sent me for a CT sacn of my neck and head on Thursday. Got the CT results yesterday and I have two 2-3mm enhanced areas on the left and right side of my brain. I was called to get a MRI scan this morning at 6:00am. I was really taken by surprise by all of this and am waiting to hear results sometime today. Very disappointed as I was to walk the marathon in the Avon Walk for Breast Cancer today which also marked my one year survival. My daughters and I raised $7,200 for this event and I have trained all summer. Very disappointing. My husband and I did drive to Charlotte last night to turn in the donations. My question is how do they treat small brain mets? I know several of you on the board have had to deal with this and need advice. Has anyone had mets within a year of diagnosis? I know the chemo and herceptin do not pass the blood barriers of the neck. Please advise me anyway you can.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-20-2007, 06:06 AM   #2
KRISS
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I don't have the answer to your question, sorry. But I just wanted you to know that I will send a prayer or two your way. These things are never easy and the waiting is worse. And what a disapointment abput the walk. But just know that you are there walking in the spirt of all the women there. Let us know as soon as you get your results.
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DX IDC AT 42 12/7/06
2.2CM STAGE I GRADE 2
NODE NEG
PARTIAL 12/18/06
HER2+ /ER+(75%) PR+(5%)
4 DD AC CHEMO STARTING 1/10/07
4 DD Taxol Starting 3/5/07
1year weekly Herceptin starting 3/5/07
finished 2/18/08
changed to every 3 weeks 4/23/07
completed 33 radiation treatments 7/6/07
TAH and BSO 9/24/07
start Femarra 10/8/07
Started Neritinib trial 12/14/09
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Old 10-20-2007, 06:07 AM   #3
Mary Anne in TX
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Debbie, I wish I knew what to tell you, but I don't. I just want you to know I care and will pray for quick NED. mary anne
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 10-20-2007, 07:14 AM   #4
Jean
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Debbie,
I am so very sorry that your MRI showed mets. Please know I will be saying special prayers for you. I know other ladies on the board have
delt with this successfully...Brenda I believe just recently.

As far as your walk for the cure....you are there my dear in your
beautiful spirit. Please keep us updated....

God Bless,
Jean
__________________
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
Started Femara Sept. 2006
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Old 10-20-2007, 07:39 AM   #5
Becky
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Dear Debbie

First, CTs are not reliable on the brain. However, that said, it did show something and the brain MRI will be able to give you a better picture of what is going on (could just be vascularization).

I know it is hard to not worry so I will not even suggest it because I worry regardless. Just know that I am here worrying about you worrying and I am thinking about you and have my arms wrapped around you. We are all here for you. I hope you hear your news as soon as possible.

Love and big hugs
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 10-20-2007, 07:53 AM   #6
dhealey
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Thank you all for you concern and kind words. I will let you know what the next step is.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-20-2007, 08:42 AM   #7
Sandy in Silicon Valley
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brain scan results will determine next step

Hi, Debbie -

Depending on what the brain MRI today shows, if the two spots that showed on the CT scan are indicated on the brain MRI, you'll likely be given the option of SRS (stereotactic radiation surgery: GammaKnife, CyberKnife, XKnife, Novalis).

SRS is very easy and non-invasive - one or two out-patient sessions, maybe an hour each. They involve sending very low-rads beams, computer-guided, aimed at the spots from numerous places around your head, which are too weak to cause any damage to your skin or healthy brain cells on the way in, but when they all meet at the spot, they zap/fry whatever cancer cells are there.

I've had 3 different CyberKnife procedures, and they were all easy. The MRI itself is noisy and enclosed - I don't happen to suffer from claustrophobia, so only the noise & staying still bothers me, and I take an Ativan beforehand. Some of the SRS treatments require a mask that is "bolted" to your head to keep you still during the procedure - and I've heard that the bolts can leave temporary dents and a pressure headache - nothing too serious. CyberKnife involves a foam mesh mask that is custom-made for each patient, and snaps onto a neck pad - no bolts, no headache.

If SRS is in the cards for you, you might want to ask your onc about going on Tykerb (Lapatinib) - a dual kinase inhibitor that patients on Herceptin are eligible to take - its advantage is that it is a small molecule, and considered to be able to pass through the BBB (blood-brain barrier). It also goes to the CENTER of the cancer cells, rather than the outside membrane, as Herceptin does. I've been taking Tykerb, along with Herceptin, since July 1 of this year. I have experienced some side effects - diarrhea and an acne-like rash and itching, but if it works to prevent further brain mets from developing, I consider it well-worth the side effects.

Hoping that the brain MRI does not indicate bc brain mets, but if it does - about 25-30% of HER2neu+++ patients develop brain mets, and they are quite treatable.

(((hugs)))
Sandy in Silicon Valley
__________________
1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...


"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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Old 10-20-2007, 09:01 AM   #8
tousled1
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Debbie,

I developed a 5mm brain met only 3 months after my last Herceptin treatment. At first they thought it might just be somethng vascualr but sent me for an MRI to make sure - sure enough it was a brain met. I had CyberKnife procedure done and everything turned out fine. Try not to worry until you have the results of the MRI. You are in my prayers.
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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 10-20-2007, 10:57 AM   #9
dhealey
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Sandy and Kate, Thank you for the info. Sandy you explained the procedures very well. It helps to know someone who has been there. Kate one of the places they saw on CT they think is vascular, my thinking is it is a met. Still haven't heard any results yet, but if these are mets I am ready to fight with all I've got. Thank you all again for your quick responses you have put me at ease even if this is the nasty cancer coming back. Bless you all!!!
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-20-2007, 11:41 AM   #10
Sheila
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Debbie
Are you on any meds now? Brenda is on Tykerb/Xeloda (both oral ) for brain mets and is having great response so far , with nor surgery....I am hoping the MRI shows it is just vascular....and nothing to worry about, but if it is mets, you are very lucky to have caught it early, and many on this board have been in the same spot and will walk with you on this joourney....you are in my prayers and sending a hug and healing thoughts your way.
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 10-20-2007, 11:48 AM   #11
StephN
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Smile My brain MRI was clear this week!

You will have checkups in the future where you get the same good news.
Wow, Debbie, I am REALLY impressed with the amount you and daughters raised for the Avon Walk. Great going!

Over the years we have had a few members of this board report getting small brain mets before or just after they were finished with adjuvent treatment. Not very many, but they were all treated and seem to be fine as far as we know. If you do have a small met or two, the prognosis is excellent for 3 and under with a radio surgery procedure (like 92% success rate).

I am almost three years post Gamma Knife for two mets. One was quite large in my cerebellum, but still within the limit to have Gamma Knife on it.
In the time since treatment there have been no more spots show up in my brain, and I have not taken anything for that which can cross the blood/brain barrier. These were isolated mets that sneaked in during my outbreak in my liver.

Most major metropolitan areas will have Gamma Knife and more are getting Cyberknife. You may have to check into what the various hospitals/universities near you have to offer and consult with more than one place. (I did that, but since the procedures were similar, I opted to stay in my main hospital group.)

My rad onc gave me good news yesterday that my MRI scan this week showed improvement in my previously treated areas and nothing new. He had been giving some bad news before he saw me and I could see his relief and pleasure in my continued good results. He said I should have hubby take me out to celebrate!

P.S. If you do a search for Gamma Knife and my name, you will find a detailed account of my experience. Patty Z also posted her details.
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"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 10-20-2007, 01:17 PM   #12
Lolly
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Debbie, just want you to know I'm thinking of you as you wait for the results.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 10-20-2007, 02:20 PM   #13
Patb
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Debbie

I also posted about my bone scan which showed an activity at base of
scull and will have an MRI of the brain Monday night. Must be an open
one for me. I had the same questions you did. I hate the waiting for
the results. Best of luck with your test and praying you results will be
ok. I am also taking herceptin until the end of November.
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 10-20-2007, 02:51 PM   #14
dhealey
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Posts: 576
The only meds I am currently on are Herceptin every three weeks (only had 3 more to go) and aromasin. The hospital where my oncologist group is from does offer gamma knife. I live in Lexington, NC. We have many hospitals here with cutting edge treatment much to my relief (Duke, Chapel Hill, Wake Forrest. Steph I pray you have continued success with your treatment. Thank you all for your input.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-21-2007, 07:33 AM   #15
lilyecuadorian
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Dear Debbie I was treat it with NOVALIS procedure and so far GOOD ..on carolina medical center ..that have the best Doctors ...I hear the Chapel hill have a good Doctors also ,,I think if you have some on your brain you are going to be Ok because you cath eary ....and like sister Kate (tousled1) said "the procedure is like walk on the park" that is very true ...
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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