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Old 07-24-2012, 07:43 PM   #41
caya
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Re: Brain Mets &%$#$!! :(

Denise, I was sick when I saw the post about Brain Mets with your name - out out damned spot(s), that's all I can pray for!

Please heed the advice from Steph and the other brain mets survivors, there are so many excellent treatments now.

Delaney I am thrilled that your scan came back clean.

Wishing much success to you both in your treatments.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 07-24-2012, 08:34 PM   #42
BonnieR
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Re: Brain Mets &%$#$!! :(

Jeez, I go away for a few days and come home to find THIS! Stupid cancer.
But look at the outpouring of love and support you have received. If good wishes are medicine, you will be better in no time!
I know you will bring your spirit and positive outlook to this latest round. More than ever, keep the faith.
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 07-25-2012, 03:51 AM   #43
KsGal
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Re: Brain Mets &%$#$!! :(

Im so sorry, Denise. I remember the feeling when I found out my cancer spread into my liver, and I wasn't a stage II anymore. I cried for days and days...Im so sad that you have to go through this. I wish I had more adequate words...just sending lots of love and positive energy and prayers.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 07-25-2012, 04:10 AM   #44
Julie D
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Re: Brain Mets &%$#$!! :(

Dear Denise, I am thinking of you and praying for you, another bump to get over but you will xx
__________________
Diagnosed Sept 2011 with IDC whilst 31 weeks pregnant with 2nd child, age 37.
Her 2 +, ER/PR + but weak requiring no further treatment.
Left lumpectomy October 2011, 2.2cm tumour, full axillary clearance, 1/20 lymph nodes. Clear margins but lymphovascular invasion.
2nd bub born 10 days later.
FEC 100 x 3 Nov - Jan 2012
Taxotere x 3 from Jan - March 2012
February 2012 Left arm and hand lymphoedema
38 treatments of radiotherapy completed 29th May 2012.
Herceptin 1 yr until Feb 2013
Tamoxifen for 5 years.
July 2012 Breast lymphoedema
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Old 07-25-2012, 08:10 AM   #45
Shobha
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Re: Brain Mets &%$#$!! :(

Denise - praying for you! Feel so helpless sometimes but have always felt that prayers work!
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 07-25-2012, 11:02 AM   #46
Sandra in GA
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Re: Brain Mets &%$#$!! :(

Denise,
I am so sorry you are having to go through this, but go through it, you will! Just remember, don't stop!

Sending up lots of prayers.

Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 07-25-2012, 03:23 PM   #47
KDR
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Re: Brain Mets &%$#$!! :(

Denise,
How are you today...we are thinking of you...
XOXO
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 07-25-2012, 04:35 PM   #48
dawny
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Re: Brain Mets &%$#$!! :(

Yes, we are all thinking of you Denise
Dawn
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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Old 07-25-2012, 04:57 PM   #49
AliciaB
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Re: Brain Mets &%$#$!! :(

Am thinking of you. DAMN cancer! I am at a loss for any words that would make a difference, but please know we are all pulling for you and you are not alone.
__________________
-----------
Dx Feb.2012
38 yro Married with 2 yro son
Stage 2B
Tumor left breast 2.2 cm
IDC
1/4 nodes positive
ER+ ( 98%) PR+ (95%)
HER2 (FISH 2.5:1)
BRCA I & BRCA II negative
March 2012 bilateral mastectomy ( Family hx)
April 2012 chemo- TCH
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Old 07-25-2012, 05:00 PM   #50
candlegranny
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Re: Brain Mets &%$#$!! :(

Dense, how are you feeling today? I'm guessing about the same....so am I ,still sad over your news. But remember when you are rested, have all your options, and make your choices, you have SO MANY OF US that make up the "fighting team" we will be right here full of support, positive words, endless prayers and will remain in place with you during the battle until the end, then we will all rejoice the victory with you! love you Denise
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
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Old 07-25-2012, 05:20 PM   #51
carlatte7
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Re: Brain Mets &%$#$!! :(

Oh denise...i too am sad for you...i'm only 4 months into my cancer journey, so have nothing to add besides what others have said...one dear friend of mine told me when i was diagnosed that cursing was allowed, so heres a big #%^£*\}#%! from me.
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Old 07-25-2012, 05:34 PM   #52
LeahM
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Re: Brain Mets &%$#$!! :(

I am thinking of you too Denise. Sending you positive vibes and lifting you up in prayer.
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 07-25-2012, 05:43 PM   #53
Vicki revised
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Posts: 121
Re: Brain Mets &%$#$!! :(

Denise:

I'm so sorry you are going thru this! It's ok to be sad; you did all you were supposed to, and then some and this enemy of ours does not fight fair. It's time to reload and fight. You can do it!
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 07-25-2012, 05:56 PM   #54
hutchibk
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Re: Brain Mets &%$#$!! :(

Denise... I feel for you. I remember how I felt the moment I first found out.

Don't rush into WBR... with two lesions, it would be too soon. You can take Tykerb/Xeloda and be very closely monitored with MRIs, talk to your rads onc and your onc. If the Tykerb is not their preferred answer, then ask about the whack-a-mole method. It has done me well! (as well as Steph.) Tykerb was my first choice for almost 2 years, before we needed to do the whack-a-mole method when we saw them light up on scans. We did IMRT, with great results on all 6 of them, and stayed on Tykerb/Herceptin another 18 months. Gamma and Cyber are other decisions that have been chosen, too.

Just FYI, I am going on 6 years after brain mets and still doing really good. 7 years as stage IV. I hope this is helpful to you.

Let us know what you choose to do!
__________________
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."

Last edited by hutchibk; 07-25-2012 at 05:59 PM..
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Old 07-25-2012, 06:50 PM   #55
JillaryJill
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Posts: 271
Re: Brain Mets &%$#$!! :(

Denise,
I will add you to my prayer list everyday. There are so many "warrior" women on this site...and you are one too. My thoughts and prayers are with you.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 07-25-2012, 07:24 PM   #56
gqmom
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Posts: 37
Re: Brain Mets &%$#$!! :(

Denise,
You are in my prayers.
__________________
Dx at 33 in May 2011
IDC and DCIS in left breast
ER-/PR-Her2+
Stage 2A (T1aN1miM0)
Left Mastectomy
A/C x 4
Taxol and Herceptin x 12
Herceptin every three weeks
Prophylactic Right Mastectomy and expanders on both sides June 28, 2012
May 2012 Bone scan, CT, breast MRI all normal
September 2012 Finished Herceptin
February 25, 2013 exchange surgery and port out
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Old 07-25-2012, 07:25 PM   #57
NEDenise
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Re: Brain Mets &%$#$!! :(

My friends,
I am totally blown away by the outporing of love and support from all my HER2 sisters! Thank you! Thank you! Thank you! Once again I have to say that I don't know how I would ever get through this nightmare without this community!

Here's an update...
Because of the size (3cm) and the location (very close to my brain stem) the wonderful Penn Medicine "machine", and my beloved oncologist, got me in to see the head of neurosurgery less than 12 hours after my MRI. And thank God for that, because he was so wonderful. In the time I spent with him, I went from very, very sad...to thinking...Okay, I can do this.

His plan is to do a Gamma knife procedure (he's done 1000s, literally...such a comfort that only one of us is new to this!) Possibly followed by stereotactic radiation to the 2 sites if needed.

No shaved head (silly to even think about that, I know, but my hair just this past week got long enough that I look like myself again), and

no damage that will change my personality (I realize that "pride goeth before the fall" and all that jazz...but I really like me, the way I am...I suspect much of my sadness stemmed from fear of not being the same wife and mom my family needs and loves...and of course...of leaving them much too soon)

And, much less important but still of concern... I was very worried that I wouldn't be able to return to work...and would then lose the insurance that pays for this joy ride of mine!

He assured me that, barring anything tragic, and unforeseen (in which case I'll be in a deep, and permanent coma, and really won't be in any shape to worry), I should be back in my classroom in September. He said that I'll probably still be suffering from post surgical fatigue...but I'll be there...doing my best, until the fatigue fades.

After the procedure, the plan is to do an MRI every 3 months and zap anything new that has the nerve to pop up. I'm also scheduled for a bone scan, a dexa scan, and a full body CT in the next week, to make sure it's only in my brain. (listen to me! ONLY! talk about a paradigm shift!)

And Steph, you were right, they did the clinical neuro eval... twice...touch your nose, walk a straight line, remember these 3 words, follow my finger with your eyes...etc And they agreed, I have absolutely no symptoms. Even the migraines that made me ask for the MRI seem to be just migraines...completely unrelated.

And for those of you who were sharp enough to sniff out the cerebellum/balance connection...and my fall/freak accident. No way, sorry. I saw the insurance video. I was in perfect form, balanced, graceful...then the gunk on the floor, combined with the laws of physics just tossed me around like a rag doll.

So, I guess the lesson to be learned is...every single one of us should INSIST on a brain MRI before we think we're NED and try to go on with our lives. If I had waited for symptoms, it might very well have been too late to do anything about it, without damaging my brain very, very badly. Herceptin, and even the harsh chemos like Taxol and Adriamycin don't cross the blood/brain barrier. The surgeon said the brain is a "pharmacoligical sanctuary"...basically, we chase the cells out of the rest of our bodies, then hope they don't head off to cause trouble in our brains. Our brains seem to be like Aruba for HER2 cancer cells...the climate there is perfect every day of the year! Cases like mine are not nearly as unusual as I always thought.

Please friends...learn from my situation...if you have to fake symptoms to get somebody to order a brain MRI...DO IT! Migraines, and blurry vision will do nicely, I believe. I'm even authorized to offer general absolution to those of you who feel lying about such things is wrong.

I should have a more definite timeline for how all of this will unfold by the end of the week. And it seems like the actual gamma knife will be next week. So I'll keep you posted. All the prayers, hugs, positive energy and notes of support are very much appreciated. You are so wonderful to me....and are giving me exactly what I need...to stay strong, and keep fighting. Attitude is so important!

Hugs to all of you!
Denise- who is ready to get back in the fight!

PS-Those of you who PMed me......please be patient with me...as I try to get caught up with my replies.
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 07-25-2012, 08:25 PM   #58
Vicki revised
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Location: Alabama
Posts: 121
Re: Brain Mets &%$#$!! :(

Those mets don't know who they are messing with!
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Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 07-25-2012, 08:35 PM   #59
roz123
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Posts: 199
Re: Brain Mets &%$#$!! :(

denise
i log in often but don't post much...but i feel like i know the "regulars" on this board from reading hours and hours of posts and threads
i have read so many of your replys and posts, especially to newcomers, your warmth practically jumps off the pages

when i opened this thread today my heart just sank, stupid f'in disease. Sorry, not very lady-like but i just needed to get that out.

i am glad to read your last post, it sounds like you have a plan of attack that you are comfortable with

i also believe in the power of prayer and will be adding you to my "list"
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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Old 07-26-2012, 04:33 AM   #60
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: Brain Mets &%$#$!! :(

Denise - I m so pleased to read your update with a plan. Will you be doing any tykerb?
I have never had an MRI - mainly because I have a magnet in the skin expander in my breast and can't. Do PET's pick up areas of concern in the brain?
You have been so much in my thoughts and I know you can do this.
Much love to you.
Amanda xx
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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