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02-07-2011, 05:59 PM
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#21
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: I don't know what to say other than HELP !!!
Hi Jacqui - I am so sorry to read about your latest battle with brain mets. And I am also sorry that we never got to meet while I was also up in Seattle for the vaccine trial.
It seems that we have a lot in common - I too was on the vaccine trial and developed brain mets while on the trial. I have had two rounds of Gamma Knife since starting the trial. I am not entirely convinced that the vaccine is not working on the brain but I do think it takes some time to really start ramping up our immune systems. I'm still hoping for a miracle.
I hope you are able to find someplace to treat your brain mets with targeted radiation, such as Gamma Knife. It has been 100% effective for my brain mets. I have now had a total of 21 brain mets and all of them have been successfully treated with Gamma Knife. I am praying I don't get any additional brain mets but if I do, I am confident that we can blast them all with Gamma Knife.
If you would like to chat, let me know if you are on Skype. Holding you to the light and praying for a smoother ride ahead for you, my dear.
With love,
Courtney
__________________
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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02-08-2011, 03:53 AM
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#22
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Senior Member
Join Date: May 2006
Posts: 157
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Re: I don't know what to say other than HELP !!!
Hi, Jaqui,
I am so sorry to hear about your brain mets, your brother's and dad's health problems as well. You have too much on your plate. Hang in there.
I was also diagnosed last month with 3 brain mets. I wanted to have the tumors removed, and I went for surgery, but it was cancelled at last minute because of the tumors in my lungs, and I was so disappointed, I still am. I ended up having Xknife to zap the 3 tumors but one of them was 3 cm, and the best way to do it is to have removed first by surgery, then zap it with a SRS like Gamma Knife, Cyberknife, Xknife, Novalis, etc. I agree with Jackie that with a tumor that size, your neurosurgeon might want to remove it first before any radiation. I hope you find the best treatment to get rid of the these mets, so that you can go on with your life.
I will be praying for you and your family.
A big hug,
KarlaV.
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02-08-2011, 01:35 PM
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#23
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Re: I don't know what to say other than HELP !!!
Hi all had my reports and the rest of my body is clear!!!!!!!
Unfortunately the one large tumor i have is poorly defined and it can't be removed. They want to start WBR on Thursday for 15 sessions and then hit the large one at the back for 5 sessions.
No gamma,cyber,xnife or novalis here. I'm getting a second opion on Thursday moring. Can I start wbr then go overseas to get gamma or cyber.
We have a machine just put in here for this but not set up for gamma yet. My bad luck again.
Or may be i can reduce the tumors through meds and hope the gamma is set up in time.
Any way home now for a day told my dad it was really hard but i softened the blow so he does not know it all. My brothers radiation is going well so thats good. I don't know if i mentioned but like the other Jackie my mum had non-hodkins lymphoma for 12 years and she passed in 2009. To much cancer in our gene pool!!!
Thank you for your messages and help. It really really does make a difference. And all the advice is fantastic. I'm really going to try and get this treatment right.
Joan, Courtny,Kris and Kavey and Trish thank you so much you guys have been a great help to ground me and for the first time in a week my stomach is not in knots.
Hugs an kisses to all
xxxxx
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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02-08-2011, 04:24 PM
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#24
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: I don't know what to say other than HELP !!!
Just want you to know you are in my thoughts and prayers too. New Zealand is very special to my family and it has been my dream to go there. In the '70's I had a chance to go there to teach but it didn't work out, then my oldest son was able to spend two years there. It was our plan to go with him and his wife this summer but because the BC came back we went to Hawaii instead. You are such a lovely family and I pray things will get much better for all. Please let us know. Hugs, TriciaK
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02-09-2011, 11:38 PM
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#25
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Senior Member
Join Date: Jun 2010
Location: TN
Posts: 83
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Re: I don't know what to say other than HELP !!!
Sending healing thoughts your way and praying for you and your beautiful family.
__________________
DX 5/17/10 IDC & DCIS
BMX 6/3/10-Stage 1, 0/2 nodes
ER+/PR-, Her2+
Chemo 7/8/10-10/21/10
FEC X 3, T X 3, Herceptin weekly for 9wks
Start Arimidex for 5 yrs-11/22/10
12/16/10 NED!!!!!
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02-13-2011, 09:25 PM
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#26
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Re: I don't know what to say other than HELP !!!
Hi all home for the week and feeling so much better. I'm now taking less dexamethasone.
Anyway big week last week i sacked my radiologist onc and have a new one he's great. Straight away I had a full brain MRI from this they found 10 mets which sounds bad but the one large one I had is made of three, may Brain CT was very poor quality. All mets are in a similar area with only one that is front left Brain. So this means they are all small. Thats good right?
Anyway after getting over this shock I have been booked in for VMAT (new machine and new to NZ) radiation not WBR. this takes some planning and it looks like I will start on 23 FEB .
On Wed we meet with my onc and they are still talking T-DM1 + pertzumab as it cross the blood brain barrier I think.
My CT of the rest of me was CLEAR.......Yeah!!!!
Time to rest and research.
Luv Jacqui
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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02-13-2011, 09:28 PM
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#27
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Re: I don't know what to say other than HELP !!!
Tricia i like Hawaii to. Its so hot and humid here at the moment. I nice time to visit Nz is Feb-March for warm not to hot weather.
Have to jump this next hurdle then Hawai here i come
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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02-13-2011, 09:30 PM
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#28
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: I don't know what to say other than HELP !!!
Sounds like you are on a new path that will bring you healing. Get lots of rest to be ready for your radiation. Glad to hear you sound positive and upbeat. The 23rd is the start of becoming NED again! I will be sending up prayers for you and your family.
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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02-13-2011, 11:02 PM
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#29
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: I don't know what to say other than HELP !!!
That is great news Kiwigirl. It is so hard to assert yourself in those situations but you did it and I think the path sounds really promising. So glad you didn't do WBR. I know it is considered necessary in some circumstances but your's certainly don't qualify now you have a more accurate picture of what is going on. Well done.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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02-14-2011, 01:10 PM
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#30
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: I don't know what to say other than HELP !!!
The following review on VMAT looks very good:
http://www.ncbi.nlm.nih.gov/pubmed/20879575
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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02-14-2011, 01:58 PM
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#31
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Re: I don't know what to say other than HELP !!!
Just read your link. Thanks Jackie
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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02-14-2011, 05:18 PM
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#32
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: I don't know what to say other than HELP !!!
Jacqui,
Great scan results!
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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