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Old 06-28-2012, 11:32 PM   #21
michka
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Re: THIS IS MY NOW time...!!!!!!!!!!

Dear Andy BB, I am so happy you posted and that you are well. I remember at the beginning of my journey when I was down and suffering, I would read your posts to give me courage and stop having negative thoughts. Just when I needed sun again your post arrived! take care Andy, we love you Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 06-29-2012, 02:31 AM   #22
Ellie F
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Re: THIS IS MY NOW time...!!!!!!!!!!

Oh Andy it is just so lovely that your hope and inspiration reach across the pond.You epitomise the saying that if one person can beat this disease so can others.
I wish you continued happiness.

Hugs
Ellie
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Old 06-29-2012, 05:15 AM   #23
Pray
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Re: THIS IS MY NOW time...!!!!!!!!!!

Priceless!
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 06-29-2012, 09:10 AM   #24
Joan M
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Re: THIS IS MY NOW time...!!!!!!!!!!

Andi, Great to hear that you continue to do well. You are an inspiration to all of us!! Joan
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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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Old 06-29-2012, 09:34 AM   #25
sarah
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Re: THIS IS MY NOW time...!!!!!!!!!!

Great Andi, what a wonderful post, totally inspiring. so happy for you.
hugs and love
sarah
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Old 06-29-2012, 12:29 PM   #26
suzan w
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Re: THIS IS MY NOW time...!!!!!!!!!!

Andi! Great to hear from you...I am not on the boards much these days as I am traveling a lot without much internet. It was so good to read your post and know that you are still doing well and feisty too!!! Keep it up!!! XOX Suzan
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 06-29-2012, 02:26 PM   #27
lkc Gumby
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Re: THIS IS MY NOW time...!!!!!!!!!!

Hi Andi,
Unbeleivably I was just wandering how you were doing. I have been following your inspiring posts since I received my " poor Prognosis" in 2005. Your posts helped me tremendously in those early days. Its' now 7 plus yrs later. I am well and living large, totally in the present and thankful everysecond of ever day. A much belated thank you dear girl for being the rock of inspiration and strength to me when I needed it the most.
blessings to you!
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 06-29-2012, 02:32 PM   #28
tricia keegan
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Re: THIS IS MY NOW time...!!!!!!!!!!

Andi I too love reading your posts and I'm so happy for you that you're doing so well and delighted to share your joy
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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!
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Old 06-30-2012, 09:31 AM   #29
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Re: THIS IS MY NOW time...!!!!!!!!!!

Andi, I absolutely feel the energy and light pouring out of your words. Its wonderful to both read, but also truly absorb the peace and sense of calm they bring me! Thank you for taking the time to post and encourage us all!

I usually get an odd look when I say I am lucky too- and I mean it in the way you do- I still function well and mostly I feel well and that is not to be taken lightly. Blessings to you!
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3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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Old 06-30-2012, 10:41 AM   #30
Sandra in GA
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Re: THIS IS MY NOW time...!!!!!!!!!!

Many thanks for your inspirational words and thoughts, Andi.
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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 06-30-2012, 05:26 PM   #31
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Re: THIS IS MY NOW time...!!!!!!!!!!

I LOVE LOVE LOVE amazing stories like yours! You are an inspiration to people like me, who have had mets for one year only. It's been a rough road and I can only imagine what you've been through but I want to be like you someday!
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 06-30-2012, 05:59 PM   #32
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Re: THIS IS MY NOW time...!!!!!!!!!!

Thank you so much for your post. It is just what I needed at a very trying time. I have just lost a very dear friend from BCO boards this past week and it has sent me into a spin. Things have a funny way of working. It's been awhile since I've checked with this board and tonight the first thing I saw was your post. Just reading it I could feel myself being uplifted again. I begin my 3rd cycle of cisplatin and gemzar this week and was feeling very down about it and if I would get stable or ned with my scans in 2 weeks. Thank you so much for your post. I think it may have been the boost I needed to become positive again.

dawn
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Dawn

Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.


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Old 06-30-2012, 07:44 PM   #33
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Re: THIS IS MY NOW time...!!!!!!!!!!

Thanks for lifting all our spirits, Andi! What inspiration!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 07-01-2012, 06:59 AM   #34
karen z
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Re: THIS IS MY NOW time...!!!!!!!!!!

thanks for your inspirational post.
you brightened our lives.
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Old 07-01-2012, 11:44 AM   #35
Andrea Barnett Budin
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Exclamation Re: THIS IS MY NOW time...!!!!!!!!!!

IMPORTANT THOUGHTS TO SHARE. I so want to offer inspiration to those struggling. I always felt during my toughest years on chemo, dealing with the angst that comes with the journey, that I was on a path. That I saw the end result -- my living and surviving it all -- and I just had to do what I had to do to get there.

I used the power of my thoughts. They are energy. They are sensed, and responded to, by others, by our bodies and by the Universe!!!

That is about the hugest Life Lesson I discovered.

Our bodies hear EVERYTHING we think, say or whisper. And they respond accordingly. They have no sense of humor, so thoughts like -- This is killing me -- are verboten. We need to troll our thoughts consistently, as we sometimes mindlessly mentally babble, you know? So we must take charge and consciously realize what we are focusing our minds on. It's so important.

WHAT WE THINK E X P A N D S. The power of the energy of thoughts is mighty. Once we fully realize that, we become unbelievably EMPOWERED. Able to control our destiny. Blessed to become the Captain of our Soul, the Master of our Fate!

It is hard, once diagnosed with cancer, not to think all day, Oh, my God! I have cancer. I could die. To be realistic, I have to face that. BUT -- WE NEED TO GET A HOLD OF OURSELVES. SHAKE OURSELVES. Understand that those kind of thoughts are -- dangerous to our healthy and well-being.

I learned, almost immediately, to live AS IF. I K N E W that I would live! My Spirit told me this on the day before my mastectomy. After a week of mammogram, sonogram, breast surgeon, oncologists, tests of every previously unknown kind checking my body from my toes to the tip of my head, pre-op tests (including stress tests, EKG, MUGA, blood blood and more blood) and my head racing in every direction -- I K N E W not to call the funeral home just yet. I had a smile on my face, blood pressure 120 over 80. I felt joyful and serene. KNOWING I would have to navigate rough waters but in the end -- the heroine lives...

I K N E W I wanted to live. And I K N E W THAT I FULLY INTENDED to live. I didn't know yet that our clear Intentions and our EXPECTATIONS are key to success. Now I include them in my thoughts, and mantras, daily. HEALTHY AND WELL. When I have an issue -- I instruct my body to HEAL. We have the power to heal ourselves. Honest, we do.

If you listen to Olympic stars or anyone who has just accomplished something astounding there is a common thread. They all say -- I K N E W I was going to... And if you listen to those who fail, they too commonly say -- I just K N E W that I wouldn't...

So when I say -- KNOW that you are going to achieve your goals, Own it and make it real -- there's a whole lot of positive passionate energy in KNOWING a thing!!! Don't ever forget that... Hold on to it. Tight.

I envision myself far, far, far into the future. At graduations and such. Specifically. In vivid detail. That too sends a message, to my body, and to the Universe. Both respond -- in kind.

So make absolutely certain that your thoughts, what you concentrate on all day, isn't merely reasonable (reflecting statistics, past experience, seeing others lose their battles and feeling crushed by that). The thinking of others can doom you once you take it on as your own. YOU have the power to compose the dialogue that will play out in your head!! KNOW it is being heard by your body and by the Universe itself. And, that it will be responded to IN KIND. Claim your chosen dream!


Stop being reasonable.


Reach for the previously thought unimaginable.


Yes, you will falter. Get back up anyway.



Yes, you can do it! See it, feel it, own it.


Make it real!


Listen to your Inner Voice.


It is your Spirit, your sacred Soul, guiding you.



Remember -- when you are passionate,


life is electrifying.


So adamantly refuse to renounce


your battle for your dreams.


Stay in The Now, full of love, giving and gratitude.



You must vow not to let


the noise of others’ thinking doom you.


KNOW a thing with all your heart and let it be.


Burst forward with focused fire;


Create impossibilities…

With Grace and Love and thoughts of so many
of you on this site, as always, Andi

__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...

Last edited by Andrea Barnett Budin; 07-01-2012 at 12:20 PM.. Reason: Change title to IMPORTANT THOUGHTS TO SHARE
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Old 07-01-2012, 12:26 PM   #36
StephN
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Re: THIS IS MY NOW time...!!!!!!!!!!

Dear Andi of Rarified Womanhood -

Yes, I have also heard the oncologists start to use the "other C word" for us long time remission types. Two years ago at the San Antonio Breast Cancer Symposium, those words were said out loud and the doctors who know the likes of us are in the process of gleaning info to share with each other as to our paths to this point. (Up to the point HIPA allows.)

I had a very interesting chat with a Senior Staff Scientist at Genentech who wants to know more about those of us who had many years of Herceptin, went off it and have remained NED. I told him there are several of us who share this previously unbelieved path.

At five years out, they were mildly interested and now some of us are at 10 years, off our precious Vitamin H, and this has them really curious.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-01-2012, 01:47 PM   #37
Andrea Barnett Budin
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Smile More important thoughts to share

Takes a lot to get their attention it seems. Even when I was on Vit H and NED I thought they should be studying the likes of us "rarified Women"! And now...

I also believe that those who benefited from being in a position to get Herceptin (and respond well to it) from the getgo are doing outstandingly well.

Others must find their personal magic bullet, and that is to me the hardest of roads. I applaud those Warrior Women who I have been from this site, and in chemo rooms from NY to Fl, who forge on with astounding Grace and Courage!

Please read my IMPORTANT THOUGHTS TO SHARE post (above, post #35 in this thread) , my Sisters, if you haven't already. I honestly believe there's some hard-found pith in there. I had to really dig to discover some of that insight.

Wisdom and answers aren't always a mathematical formula based on logic. Einstein said something about the most amazing truths being unproveable and unseen. (I know I botched your quote, Albert, but I believe I got to the heart of the matter to make the point...)
Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-01-2012, 03:42 PM   #38
ElaineM
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Wink Re: THIS IS MY NOW time...!!!!!!!!!!

You are absolutely right Andrea !!
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 07-02-2012, 01:32 PM   #39
tricia keegan
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Re: THIS IS MY NOW time...!!!!!!!!!!

Andi I wish your posts or some of them could be here as a sticky to refer to when ever I feel I need a little uplifting, which you always manage to do!
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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!
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Old 07-02-2012, 02:17 PM   #40
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Exclamation Lucky # 13 indeed...

ELAINE -- SAW YOU'RE LUCKY 13 NOTE AND CLICKED AND FOUND THIS --FROM 2010! Your post is below...

I AM LUCKY #13...! When I recurred in '98 throughout my liver, my positive attitude faltered. Big time. I read that less than 15% survived what I had. They (my oncs) didn't expect me to live the year.

Then my friend said, Come on, you've done this before, you'll do it again. I told her about the less than 15%. I was horrified. She said, FINE, MY LUCKY # IS 13. AND I'M GIVING IT TO YOU! YOU'RE #13!! That's it, she insisted. Done. 15 will survive. You're #13. She had a rhinestone pin made up for me that says --#13.

I have it by my sink. In my face. From the moment she spoke those words the #13 kept popping up in my life. The very next morning my injection materials for a really really low white blood cell count arrived at my door. The driver said, Just sign here. I'd forgotten my glasses. I looked at the blur before me and asked, Where do I sign. RIGHT HERE HE SAID. YOU'RE #13.

At the bakery, I got my ticket as I stood on line. I was #13. And on and on, to this day. My husband put it on his license plate. His initials followed by 13.

It's official, I thought. Every time I saw a 13, I K N E W that the Universe had my back!

And here we both are, Elaine! God bless.

The next August (after re dx) my 2nd grandchild was born. ON THE 13th of Aug! (My dghtr called upset, she was in labor, I was going to witness the birth as I had with the 1st. I'm on my way, I said. NO, she squealed, I can't give birth today! It's Friday the 13th. YES, I told her, 13 is lucky -- remember. Oh right! And soon I saw my first grandson somersault out into this world with his flaming red hair! Awesome...

MUCH LOVE,
ANDI

ElaineM
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Join Date: May 2006
Posts: 2,951


12 years and still counting
Happy New Year !! Hauoli Makahiki Hou !!
I couldn't let this occassion pass without wishing all of you peace, good health and joy in 2011 and beyond.
I was diagnosed in early January, 1999. A doctor told me I had 6 months to live at the beginning of 2000. I remember that day. I did not say anything. I just laid on his exam table quietly, but in my heart and mind I decided that was not going to happen to me !!!!!!!!
I didn't know how I was going to accomplish that task that day, but I figured it out as I went along. I learned as much as I could, was not afraid to challenge doctors when it was appropriate to do so and found ways to get the things I needed. This journey has not always been easy, but I kept going even though I changed the route a couple of times.
I changed doctors when I needed to do that. On the other side of the coin I am still working with one or two doctors I first saw in 1999. Thankfully they are willing to travel with me through this journey.
I am still learning and putting one foot in front of the other. I promised my doctors I will be showing up for check ups when I am 90. That is my goal.
Never give up !!!!!!! Determination, believing in the possibility of success, learning as much as we can, refusing to give up, and being proactive and aggressive are the keys to long term survival.
All the best to each and everyone of you !!!!!!!!!! Never give up !!!!!!!!!!!
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...

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