| Keeping Your Mind Off of BC Fun things and posts that do not apply to BC |
 |
|
03-09-2008, 09:19 PM
|
#1
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Taking a Survey
Hello, Ladies and Gentlemen. I hope and pray that your weekend has gone well. you all have been in my thoughts and prayers. I've been really busy at work this weekend, and have a bunch of stories to tell, swirling around in my head, thinking of starting a new thread, maybe something like "outdoor excursions gone bad", "bad camping trips", you know what I mean. I want to start this thread, so if anyone jumps the gun on me, there might be an angry angel thumpin' on your door tonight. The survey, and please post your vote, and after a few days, I will pick the winner, and then I will tell the tale and reward the winners with a port-call on my cupcake cruise. The choices are as follows, "Billy in the Snake Pit", "Bill and the Mountain Bear", "Bill Lost Spelunking", "Bill, Canoe-flipped", "Bill, and the Shape-shifter", "Bill following a 'will-o'the-wisp' in the mountains", "Bill and Nikki seeing 'the shape'". Vote as you wish, and please know these are all true stories, and then you can add your own tales of misadventure. Sorry, I'm tired or I'd post one now. Love y'all, Bill
|
|
|
|
03-09-2008, 09:25 PM
|
#2
|
|
Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
|
I think this one : "Bill and Nikki seeing 'the shape'".
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
|
|
|
|
|
03-09-2008, 09:57 PM
|
#3
|
|
Senior Member
Join Date: Oct 2005
Posts: 3,519
|
"Bill, and the Shape-shifter"
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
|
|
|
|
|
03-10-2008, 11:48 AM
|
#4
|
|
Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
|
"Bill and the shape shifter" caught my eye....but I'd love to read them all at one point or another!!!
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
|
|
|
|
|
03-10-2008, 06:55 PM
|
#5
|
|
Senior Member
Join Date: Aug 2006
Posts: 492
|
I vote for Bill: canoe-flipped.
Did you say cupcakes???
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
|
|
|
|
|
03-10-2008, 07:14 PM
|
#6
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
yes, Darlin', I said cupcakes. Thanks for all of your responses. I'm keeping a tally of votes for a few days. Love ya!
|
|
|
|
|
03-10-2008, 07:57 PM
|
#7
|
|
Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
|
"Bill and the Mountain Bear" sounds the most exciting/terrifying. Obviously it turned out okay since you are here to tell the tale.
Do tell!
__________________
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
|
|
|
|
|
03-11-2008, 04:43 AM
|
#8
|
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
I like Bill Lost Spelunking....spelunking is another word for delivering cupcakes on the cupcake cruise isn't it? If I close my eyes I can almost smell them!...Hope they have chocolate frosting!
__________________
"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
|
|
|
|
|
03-11-2008, 07:38 AM
|
#9
|
|
Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
|
I like Bill and the shape shifter also.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
|
|
|
|
|
03-12-2008, 07:36 PM
|
#10
|
|
Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
|
As a canoeist I have to vote for canoe flipped.
Have you canoed the New? (river that is)
__________________
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.......
14 YEARS NED!
|
|
|
|
|
03-12-2008, 08:04 PM
|
#11
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Ladies, I'm here keeping a tally. Sheila, chocolate cupcakes are the only kind I carry on board. (I can smell them, too) No, Sassy, I haven't done the New yet, but I want to. Done Class IV's on the James River, though, in an open canoe, loaded to the 'gunnels', lol, and made it through. Wow, this might be turning into a horse-race finish. Please keep posting your votes and the winner will be declared on Friday, and the post will be made over the weekend. Love ya's, Bill
|
|
|
|
|
03-13-2008, 05:24 AM
|
#12
|
|
Senior Member
Join Date: Mar 2007
Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
|
I'd love to hear "Bill, Canoe-flipped" and hope you managed to miss the tree that had fallen over the creek ("Duck!" "Where?" BONK!) and also to catch your paddles before the current swept them away.
__________________
Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
|
|
|
|
|
03-14-2008, 01:04 PM
|
#13
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Bill,
My heart says to go and vote with the cloud....
Hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
|
|
|
|
|
03-14-2008, 04:19 PM
|
#14
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Bill,
Just forget my vote, as I thought you had posted the heart cloud that Brenda posted on her name....don't know I thought that? Guess I am
just confused ....after alll let's remember I do have chemo brain.
lol,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
|
|
|
|
|
03-15-2008, 08:02 PM
|
#15
|
|
Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
|
Anything but the snakes! I can't read that one, I'd have nightmares.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
|
|
|
|
|
03-15-2008, 08:31 PM
|
#16
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Juanita!!!!!! It's so good to hear from you. I was getting ready to start looking for you. I hope you're okay. Alright, no snakes on this one. It is a rather amazing story, though, well maybe someday....
|
|
|
|
|
03-16-2008, 06:20 PM
|
#17
|
|
Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
|
OK, so I'm a little late to the party on this one, but I vote for Bill and the Mountain Bear.
I don't know why I like to hear about scary wildlife encounters, cause It makes me get the hebe jebes when I'm getting ready to ride out in the forrest, but enquiring minds want to know!
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
|
|
|
|
|
03-16-2008, 11:59 PM
|
#18
|
|
Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
|
I vote for the shape....
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
|
|
|
|
|
03-17-2008, 04:54 AM
|
#19
|
|
Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
|
I am a bit late to read this one Bill
but I am a little curious about the following the
WILL-OF-THE-WISP in the mountains myself.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
|
|
|
|
|
03-17-2008, 05:42 PM
|
#20
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Well, Ladies, if I've tallied the results correctly, it's a tie betwixt the tale of the shape-shifter and Bill-canoe-flipped, with votes thrown in all akilter for me other tales, so I've no choice but to keep the polls open for a few more days. Best wishes to you all, Love, Bill
|
|
|
|
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 On
|
|
|
All times are GMT -7. The time now is 06:41 AM.
|
Linear Mode
