 |
10-21-2011, 11:46 AM
|
#1
|
|
Senior Member
Join Date: May 2011
Posts: 137
|
Re: Finding Little Comfort in the Statistics of Survival
Andi, thanks for the enlightening and uplifting message! I refuse to look at stats anymore and fortunately I have a doctor who says "prove me wrong." I would love to hear of some of the books you would recommend regarding both spirituality and psychology! I too feel it is up to me to figure out how to best help my mind, body, spirit heal in conjunction with traditional treatment. I am completely open to suggestions if you wouldn't mind! Thank you!
__________________
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.
|
|
|
|
10-21-2011, 12:01 PM
|
#2
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: Finding Little Comfort in the Statistics of Survival
That article has some interest as a personal story, but since there is no mention of the NAME of the book referred to, I have to believe that it is not a serious textbook and any stats on breast cancer have not been updated in years!
Wad up that information and throw it over you shoulder. Do not look back.
__________________
"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.
|
|
|
|
|
10-21-2011, 12:52 PM
|
#3
|
|
Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
|
Books i've read and loved
Great advice Steph! As always. Vicky, I'm often asked what books I would recommend. So I have a list. And it is my honor to share them with you and all who may be interested.
BTW, I've proved the oncs wrong. I have become their miracle patient. And the nurses' as well. EVERY THOUGHT IS A PRAYER. EVERY PRAYER IS A POTENTIAL MIRACLE.
YOU ARE FAR BRAVER AND MORE COURAGEOUS THAN YOU EVER THOUGHT. YOU ARE AN EMPOWERED SPIRIT, I SWEAR...!
I started with Dr. Mitchell Gaynor's (Integrative Oncologist in Manhattan) HEALING ESSENCE, but I believe you have to call his office to order it, if it is even still available. 212 - 472 - 2828
From the moment I read the first page -- I KNEW I would live!
Then I fell in love w/Dr. Wayne Dyer...
Your Sacred Self
You'll Believe It When You See It
Wisdom of the Ages
The Power of Intention
There's a Spiritual Solution to Every Problem
Manifest Your Destiny
The Nine Principles of Getting Everything You Want
Secrets of Your Own Healing Power
Eckhart Tolle:
A New Earth
The Power of Now
The Travelers Gift -- Andy Andrews
Seat of the Soul -- Gary Zucav
Healing Words -- Caryn Goldman
Kitchen Table Wisdom -- Rachel Naomi Remen
Dr. Larry Dossy:
Healing Words
Healing Beyond the Body
Reinventing Medicine
Recovering the Soul
May these authors words inspire you as they have me. I read with a red pen in hand, underlining, starring. I see them s tomes of wisdom...
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...
|
|
|
|
|
10-21-2011, 02:00 PM
|
#4
|
|
Senior Member
Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
|
Re: Finding Little Comfort in the Statistics of Survival
Andi -
I absolutely *LOVE* your attitude!
__________________
10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
|
|
|
|
|
10-27-2011, 09:18 AM
|
#5
|
|
Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
|
Re: Finding Little Comfort in the Statistics of Survival
My oncologist, your oncologist, Dennis Slamon, Santa Claus, FauxGypsy - no one can tell us if we are going to recur. No one. Stats like 50/50 or 80/20 do not tell us which side we will be in.
I do not make light of anyone's fears. I've been there. I still think that mosquito bites are skin mets. But I've given cancer the finger ... told it to screw off. I will not let fear take over my life. If I recur in 5 years or if I don't recur in 5 years, it doesn't change right NOW.
Every day I see this streetperson guy stumbling down the sidewalk, drunk.
He didn't get cancer, I did. And I don't think this guy is drinking green tea.
I have stopped trying to figure everything out ... I will not drive myself crazy looking for answers that no one has.
Bejuce, if you want to watch your kids grow up, they are growing up right NOW ... we are all doing different things for ourselves ... just do your best.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
|
|
|
|
|
10-28-2011, 08:51 AM
|
#6
|
|
Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
|
Re: Finding Little Comfort in the Statistics of Survival
pink girl: re
My oncologist, your oncologist, Dennis Slamon, Santa Claus, FauxGypsy - no one can tell us if we are going to recur. No one. Stats like 50/50 or 80/20 do not tell us which side we will be in.
I do not make light of anyone's fears. I've been there. I still think that mosquito bites are skin mets. But I've given cancer the finger ... told it to screw off. I will not let fear take over my life. If I recur in 5 years or if I don't recur in 5 years, it doesn't change right NOW.
Every day I see this streetperson guy stumbling down the sidewalk, drunk.
He didn't get cancer, I did. And I don't think this guy is drinking green tea.
I have stopped trying to figure everything out ... I will not drive myself crazy looking for answers that no one has.
Bejuce, if you want to watch your kids grow up, they are growing up right NOW ... we are all doing different things for ourselves ... just do your best.
you are inside my head!!
omg. i just can't believe reading your message how
another person could possibly, without having read my latest blog,
captured so exquisitely, exactly the feelings i have. it is positively
other worldly to read this note of yours. it is exactly the type of language i used on a recent blog post of mine (dont read it cos i am embarrassed of myself in there) about how no guru, no statistical research, no certainty-clinging of any kind is, first of all, correct (every corpse defies the pollyannas; every woman alive and well with HER2 defies the pessimists like me) and secondly, how lonely is our struggle.
i feel lonely when a woman with HER2 or just a nice friend or nice person, corrects my pessimism. I feel lonely when I am 'forced' to be optimistic cos a friend can't bear to lose me so she makes me consider myself 'normal' in lifespan despite the stats; I feel lonely when the opposite situation comes up too.
Hmmmm...maybe i will start a thread called "I feel lonely, as an HER2 woman when..." I get comfort from reading a brief, succinct post such as the one u just posted, and all the posts in this thread, actually, cos they say what I feel.
How wonderful is the invention of the internet. I do not feel alone when I read things like this.
You have hit the nail on the head.
We are forced into a weird, unwilling kind of heroism, in a way, ...considering we have these grim prognoses, yet are still alive.
what was it Van Morrison sang...No guru, no buddha, no teacher..?
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
|
|
|
|
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 04:47 AM.
|
Hybrid Mode