 |
|
04-16-2011, 10:18 AM
|
#21
|
|
Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
|
Re: Started Intrathecal Herceptin Today
Hi Courtney,
You just amaze me. I am sending positive wishes that your new treatment works for you. I wouldn't have had the stamina to do all that you did on that trip even before I had cancer.
Best regards,
Barbara H.
|
|
|
|
04-16-2011, 11:02 AM
|
#22
|
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
Re: Started Intrathecal Herceptin Today
Courtney
Sometimes someone comes along whose courage takes your breath away. YOU are that someone !!
Ellie
|
|
|
|
|
04-16-2011, 12:03 PM
|
#23
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: Started Intrathecal Herceptin Today
Dear Courtney -
SO glad you were able to take that NZ adventure trip and could work around your treatments.
Getting away and having new surroundings to focus on is very freeing and does our spirit a lot of good.
Let us know about the spinal tap result, and I am glad they went ahead and administered the Intrathecal treatment even without the lab result. Heading off the cells before they have a chance to begin new tumors seems so sensible.
Very happy you have a medical center that has this treatment! I know you are paying close attention to any and ALL possibilities to whup this disease.
__________________
"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.
|
|
|
|
|
04-16-2011, 12:52 PM
|
#24
|
|
Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
|
Re: Started Intrathecal Herceptin Today
What an atitude. You go girl. My best wishes and
healing thoughts with you daily. Keep us posted.
I am so glad the trip was wonderful for you.
patb
__________________
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.
|
|
|
|
|
04-16-2011, 01:11 PM
|
#25
|
|
Senior Member
Join Date: Oct 2010
Posts: 229
|
Re: Started Intrathecal Herceptin Today
How inspiring! What a blessing you were able to take this trip. Cancer can NOT take away our joy in living! Thank you for the wonderful message you give us all!
__________________
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
|
|
|
|
|
04-16-2011, 02:24 PM
|
#26
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Started Intrathecal Herceptin Today
Courtney, you brought a smile to my face too as I've always wanted to swim with dolphins!!!!
I wish you every success with this tx and yes, you're just the girl to do it!!!!!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
|
|
|
|
|
04-16-2011, 04:01 PM
|
#27
|
|
Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
|
Re: Started Intrathecal Herceptin Today
Courtney,
I Googled 'Amazing Young Woman', clicked on Images and there you were - backpack and all! Seriously, you are an incredible woman and you inspire so many of us. Keep up the fight - there is no doubt in my mind who is going to win this one.
Love and hugs to you,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
|
|
|
|
|
04-16-2011, 06:26 PM
|
#28
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: Started Intrathecal Herceptin Today
Courtney,
Thanks for the update - especially the wonderful trip part. My 2nd Sister had just e-mailed me to discourage me from going home for our Father's 96th birthday. She did not think I could 'survive' the long flight... I'm going to tell her what wonderful time you've had in New Zealand...
[Though I've also been pondering about getting a webcam instead ...  ]
__________________
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
Last edited by Jackie07; 04-21-2011 at 10:05 PM..
|
|
|
|
|
04-17-2011, 07:04 AM
|
#29
|
|
Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
|
Re: Started Intrathecal Herceptin Today
Courtney, recently checked in to your Caring Bridge page and loved your wonderful piece on how alive your city is and look at you...an inspiration to all...think of you always,
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.
|
|
|
|
|
04-17-2011, 11:18 AM
|
#30
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Re: Started Intrathecal Herceptin Today
All the best to you in your new treatment. I am keeping my fingers crossed for you.
|
|
|
|
|
04-17-2011, 12:44 PM
|
#31
|
|
Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
|
Re: Started Intrathecal Herceptin Today
Courtney,
Great to hear back from you. Sending you hugs and best wishes. You will knock that bad mets out of your body, you are a true fighter. Please keep us posted. Will continue praying for you and all my her2 sisters. Love,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
|
|
|
|
|
04-18-2011, 12:54 PM
|
#32
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Re: Started Intrathecal Herceptin Today
Courtney,
Hope to hear from you soon.
Amelia
|
|
|
|
|
04-18-2011, 07:31 PM
|
#33
|
|
Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
|
Re: Started Intrathecal Herceptin Today
Woot, wootin' here in Hershey for ya, Courtney! Cancer be damned! Life is meant to be lived. Love the attitude. Sure hope the new regime works wonders on those pesky brain mets buggers!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
|
|
|
|
|
04-19-2011, 12:59 AM
|
#34
|
|
Senior Member
Join Date: May 2006
Posts: 157
|
Re: Started Intrathecal Herceptin Today
Courtney,
You are an amazing young woman who is an inspiration to all of us.
I'm sending prayers that the intrathecal herceptin treatment will get rid of all brain mets for good, and that Gemzar will bring your body to NED as well.
Thanks for paving new options for us brain mets sisters, and for keeping us updated.
Hugs and love,
KarlaV.
|
|
|
|
|
04-20-2011, 12:38 PM
|
#35
|
|
Senior Member
Join Date: Mar 2010
Location: Thornhill Ontario
Canada
Posts: 266
|
Re: Started Intrathecal Herceptin Today
Thanks Courtney for your update. You are such an inspiration, "cancer be damned". You are full of life and obviously will push forward, strive to enjoy all that our lives have to give us. You really have made us feel so strong today. Best wishes and continued wonderful life experiences for you and your family..
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara
November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2
January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
|
|
|
|
|
04-20-2011, 06:10 PM
|
#36
|
|
Senior Member
Join Date: Apr 2010
Posts: 129
|
Re: Started Intrathecal Herceptin Today
Hi Courtney,
You really are such an inspiration!! Your positive attitude is what I remember when I get down. I am so glad the injections aren't painful and you don't have side effects.
How exciting that the Gemzar is working on the lungs again! It must be so encouraging to be able to watch it work on the skin lesion too.
I just know this new Herceptin administration is going to work for the brain mets.
I am so glad you had a wonderful time in NZ. What a dream to be able to go on a trip like that (cancer or no).
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
|
|
|
|
|
04-20-2011, 06:25 PM
|
#37
|
|
Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
|
Re: Started Intrathecal Herceptin Today
How ya feeling today, Courtney?
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
|
|
|
|
|
04-20-2011, 09:17 PM
|
#38
|
|
Senior Member
Join Date: Jan 2008
Location: Virginia
Posts: 116
|
Re: Started Intrathecal Herceptin Today
Courtney,
I have faith that this treatment will work!
__________________
Melissa
04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin
04/2022 - 16 year survivor!
|
|
|
|
|
04-21-2011, 01:26 PM
|
#39
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Re: Started Intrathecal Herceptin Today
Courtney,
Just checking to see have you have been.
Amelia
|
|
|
|
|
04-21-2011, 09:54 PM
|
#40
|
|
Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
|
Re: Started Intrathecal Herceptin Today
I have great news to share so I'll get right to the point. The results from the spinal tap were negative! They did not find any cancer cells in the cerebral spinal fluid. As you know, this is very good news for my prognosis and treatment. While it may still mean that there could be some small number of rogue cancer cells in there, they couldn't find any.
Since I still have the brain tumors, some of which appear outside the brain tissue, we will continue with the intrathecal Herceptin injections to see if that can keep the existing tumors under control. The plan is to do one injection a month. We'll scan again in a few weeks to see where we're at and we may add the chemo Temodar to the mix if the Herceptin is not enough. I'm not sure if Gamma Knife is on the table yet. I'm trying desperately to avoid WBR but that is an option should I need it.
In the meantime, Jay and I, and my entire family for that matter, are breathing a little easier knowing that the worst case scenario has not arrived.
Words can not express my gratitude to you all for your thoughts, prayers, messages, private messages, emails, notes on my caringbridge page, etc. Its been a rough week or so but the clouds are lifting and there is cause to celebrate. God is listening to our prayers. The universe is sending out those good vibes.
Wishing you all a Happy Easter, Passover, or whatever your springtime celebration may be. I know we will be giving extra thanks this Easter Sunday.
With love and healing light and prayers to you all!
__________________
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.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 12:53 PM.
|
Linear Mode
