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06-23-2009, 12:45 PM
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#1
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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How many times can u regamma the same pesky spot
Thank you all for always being here for support at the wee hours of the morning or whenever!!!! I have spent many nights lurking and following and praying for all of you since I found this site in 2006, Crying and rejoicing with the loses and vivtories. I have always come here first then go to my appointments with a game plan. My brain and my perserverence are tired. My body pet/ct is clear, but my brain lesion that was done 2 times last year is larger, and one that had WBR rads to it is growing as well. So what is next, I get my herceptin weekly, and have put off Tykerb /xeldoda because of side effects!!!!! So now I turn to you guys for some input, cause I'm not feeling to much hope today
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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06-23-2009, 02:29 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Darita
I am sure you will get some replies from the brain mets gals....they have the experience...just wanted to let you know you ar in my thoughts and prayers that this stubborn area can be taken care of so you can cotinue to enjoy life!
__________________
"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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06-23-2009, 05:19 PM
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#3
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Thinking of you and praying for you, Darita.
My two cents - have you tried Tykerb/Xeloda? Was it intolerable? If you haven't tried it, I would suggest you consider it. I am on both and have been able to manage the side effects pretty well. I found my proper dose that I could tolerate and don't feel that my QOL has been affected much. I am hoping and praying that the T/X combo is reaching my brain and doing its goodness. As you can see from my stats below, so far, so good. Praying the same for you. Definitely talk to your doctor about this possibility if you haven't already. You can manage this! And you can get rid of those brain mets! I KNOW IT!
__________________
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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06-23-2009, 07:59 PM
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#4
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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I have not been on Tykerb yet
Thank you for the prayers, I have not had tykerb/xeloda. I am going to see my onc tommorow, and then See the Neuro/gammaknife Thursday.
So for now it's all about the hurry up and wait! God is awesome and I know he has a plan for me . I just need to get my options so I feel like I have some control.
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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06-23-2009, 08:47 PM
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#5
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Yes Darita, I know that although things are dire for Ed, I am going into Dana Farber tomorrow and I am bringing hope there too, I expect to bring back even more. Having a legal pad with 6 full pages of organized options helps me to have that hope and feeling empowered. There is something, somewhere that will help my Mighty Oak, it is a race against time and we have a head start. This pad does not have articles or abstracts, just drugs and procedures.
As for you Dear, I have followed your journey and I stand right besides you. I have felt those same feelings. Let me speak outloud, okay??
First of all, like you Ed had a spot reradiated with the Gamma, it was in a difficult spot so the original amount of radiation was lesser than the other spots. The surgeon did this because it was so close to vital areas and knew he could re-Gamma if needed there. I am not sure the amount of radiation you received there and realize you have had WBR. That being said, my question to ask him is the obvious, "can we do this again here?" He will let you know. For your records I would ask and record the amount of radiation to those stubborn mets.
As for the T/X combination, this was tried by Ed and it failed for him. But it has worked magic for others, many others. This is a wonderful combination!! Please read some of the posts, especially from Brenda concerning how she manages those side effects. Please, please do not let the fear of them prevent you from your possible 'magic bullet'. Do not rob yourself of a potential answer to your brain problems. I beg you to keep this on the list of options for yourself, you well know about the BBB and the difficulties of attaching and delivering other meds past it. I beg you to keep your mind and your dreams in focus with the considerations of this combo.
For the newest of strategies and some being unconventional, I could send you a summary I have. You could also read the latest of posts from Ed which I know you have since you replied. Honey, I know what you are stuggling with concerning your brain. You feel tired, well of course you do. Not feeling too hopeful, well thus the point of my post. I feel hope Sweetheart, hope when I know what is happening to him. He is in a bad place but still I feel hope. I did not the day I found out about it, I felt despair.
Please Darita, let me tell you that Dana Farber tomorrow is not just to save my husband's life. It is to save the lives of the people I love. I will be bringing back hope for us all and you shall be the first person I will contact upon my return. Let me know if you want my list, it will take me a day or two to get it to you since I thought I saved it and need to redo it tonight. I will not send it until we return.
If I could I would look into your eyes. I would tell you that I know you are tired...that you can do this. I would smile as I told you that there is hope, that I have even more to share. I am counting on you to trust me and the words I say from my heart. Hang in there because I know that you too have a wonderful team. Stay strong Darita as I bring back home my husband's life and enough scientic hope to stretch the world. I hope in some small way I could help. You know our journey and that these words all come from my heart. PM me girlie if you cannot sleep tonight, guess you can figure out I will get very little sleep.>>Believe51
PS: While we are sitting in Dana Farber tomorrow, Please know that you will be sitting right besides us. You will fill my thoughts.
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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06-24-2009, 10:01 AM
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#6
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Dear Darita,
You are in my prayers. May god guide you to the right combination of drugs to destroy the brain mets and get you back to NED status.
hugs,
shobha
__________________
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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06-24-2009, 11:05 AM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Darita, hope gives us strength. What if you were one of the ones who did not have the bad side effects with the Tykerb/Zeloda? What if it zapped those pesky critters and got you NED. Hope is so powerful. I know the side effects can be awful. I cried for 6 straight weeks on Taxotere & Adriamycin. My mouth hurt so bad I lived minute to minute.....BUT I had hope! I'd cry a while and then get really mad and determine to fight on and on. It was hope that kept me going even when the side effects cried out for me to stop.
Take a deep breath and be open to knowing what you might do. I'll be prayin' for ya girl! ma
__________________
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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06-24-2009, 04:54 PM
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#8
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Darita,
In mid October I had stereotatic radtion therapy to one nodule in my brain after surgery. It's similar to GammaKnife, but I wore a nylon mesh mask to hold my head steady on the table and there were five treatments to the area. I did not require any chemo because I have no other spots and so far the area seems clear of cancer. The nodule was a little to large for just radiation alone, and the docs recommended both surgery and radiation.
I'm praying that you get a course of treatment that clears up the mets.
Joan
__________________
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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06-25-2009, 08:44 AM
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#9
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Thank you
Thank you for your prayers and encouragement!! I meet with the Neuro/gamma doc in a few hours. So will update later after i meet with him and then go back to onc!!!
Thanks again
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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06-25-2009, 10:02 AM
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#10
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Just letting you know how I am praying and sending positive energy right now. Please let us know how you made out at your appointment today. HOPE, it is what I wish you have taken with you and HOPE is what I wish the doctor provides more of. Love>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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06-27-2009, 12:50 PM
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#11
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Senior Member
Join Date: Apr 2008
Location: Indianapolis
Posts: 46
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Hi Darita,
I just had Gamma Knife Radiation on my brain mets (4 lesions) two weeks ago.
I tried Xeloda/Tykerb but the side effects were too much for me. But don't let my problem keep you from trying it.
My onc. has me on herceptin/navelbine. The navelbine has kept the disease from my neck down in check. The brain--not so much. So I'd try the X/T option.
I pray for encouragement for you and strength.
D.W.
__________________
4/06 diagnosed metastatic breast cancer stage III her2nu
4/06-7/06 taxol, carboplatin, herceptin 4/06-4/08 herceptin
8/06 mastectomy, lymph nodes removed
08/06-12/06 taxotere
28 radiation treatments
4/08 mets in brain, spine & hip
4/08 whole brain radiation 10 times
5/08-6/08 spinal radiation 12 times
4/08-9/08 tykerb, xeloda
9/08-present navelbine, herceptin
10/08 MRI shows brain mets just about gone!
4/09-blah more brain mets
6/09-Gamma Knife Radiation to the brain
9/09-three small brain tumors gone, big one shrunk almost in half
3/10 NED (nice)
8/11-more brain mets; shrunken are growing; new one found
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07-01-2009, 09:43 AM
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#12
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Anxiously awaiting your news and letting you know just how much you have been in my thoughts. Continued prayers for you and healing energy coming all the way from Little Rhody. Stay tough>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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07-14-2009, 11:40 PM
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#13
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Follow up with Neuro Onc man
Sorry for not getting back sooner, My husband stole me away and we went up to Northern Arizona in the forest for two weeks. Wow!! God is awsome in all he creates!!! It was perfect, very relaxing hanging out for the fourth of July in "WINSLOW, AZ" with his very caring family. The doctors put me on hold for 6 weeks then rescan my brain. One area was thought to be scarring, and the enlarged area he said had a lot of edema, and since it was the third time being radiated, it was thought to be latent effects of the 12/08 gamma. They did not want to change to tykerb/xeloda/herceptin till the follow up scan at the end of July. I was able to not take steroids yet, I have the bottle sitting on my desk and have to take them if I strt having any Neuro symptoms. Thank You for all being there for Me and others who are on this journey
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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07-15-2009, 01:52 PM
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#14
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Darita -
I am so glad your doctors have held off on any further treatment for now. My suspicion from your description of the brain spots was that you have some reactions ongoing from the gamma knife. The same thing has happened to several of us here.
The only way for the docs to be absolutely certain the spots are actually tumor activity is to do open surgery and remove the area for biopsy.
I allowed them to go into my cerebellum to check the suspicious area that had been gamma knifed. Everything they removed was radiation necrosis with NO tumor cells to be found.
This scenerio is my hope for you. I feel it is a very likely one. Enjoy your summer and you know enough now to sit it out a while.
__________________
"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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07-20-2009, 06:29 AM
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#15
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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How did the surgery go for the biopsy go?
I am afraid of having them open my head up!!! I gues I am afraid of side effects from it. I go on 7/29/09 for another MRI. Thanks for the post.
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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07-20-2009, 08:29 AM
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#16
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Darita,
I am so glad that you were able to enjoy God's creation. Also, I just wanted to let you know that I too was afraid of the se of Xeloda/Tykerb. I am on it for some skin issues but I have found it not to be too bad. So if you ever need it, you might want to give it a try.
Blessings,
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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