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Old 07-15-2008, 01:16 PM   #1
hutchibk
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Brenda in the Cote d' Azur

I will post more pics in a couple of days, but I unexpectedly came across this amazing tree in the Jardin Exotique in Monte Carlo... cool, huh?
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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."
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Old 07-15-2008, 01:17 PM   #2
hutchibk
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Yes, I brought a small branch of the tree home with me!
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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."
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Old 07-15-2008, 04:09 PM   #3
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That is so cool, Hucklebuck! Thanks for sharing with us. Ah yes, another one of those amazing "coincidences", huh? Glad you are having such a great time.
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Old 07-15-2008, 04:53 PM   #4
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BRENDA...save a bite for me...maybe that will be the golden apple....you taxol diva!!!!!
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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
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Old 07-15-2008, 09:24 PM   #5
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Maybe you can graft some of it onto bill's cupcake tree and we can get taxol cupcakes for the cure!
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 07-16-2008, 07:23 AM   #6
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Wink

Chrisy

I love the way your mind works!!! What a great idea -
a chocolate taxol cupcake ... easy on the veins, no ports needed.
I think I would have mine warmed up with some ice cream on top ....

I have a friend who grafted an apple tree for me. If Bill can just
get that cupcake tree going, I think this is "doable".......
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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
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Old 07-16-2008, 02:49 PM   #7
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I just saved the pictures in my computer file. Thanks for sharing. You look great!
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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

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Old 07-17-2008, 07:55 AM   #8
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I lived another lifetime in one week and it was spectacular!

Wow, where to begin...

Flew into Paris to meet Mark and then flew together to Nice to board the Seabourne Legend. We were both apprehensive whether we would enjoy a cruise (a hotel on the sea as it were), but we actually fell in LOVE with the entire experience. We were in each port from 8am-12mid everyday, and only sailed at night, so we were able to fully experience every port and surrounding areas. What an amazing experience. It was a chartered cruise and everyone on the 'yacht' was connected in some way, so essentially there were no strangers on the boat. And only 250 people. Our crew were precious. Most of them were South Africans and a few other favs were from Poland, Switzerland, Brittany, Romania, and Denmark... We fell in love with the crew. We wanted to bring them all home. It was probably the best trip I have ever been on and I wish I could live on that boat forever (with the cats of course)... Ports of call were in the French and Italian Riviera part of the Mediterranean: Nice, Cannes, St Tropez (love it!), Monte Carlo (love it too!), Portofino/Santa Margherita (love it too!), Livorno/Pisa, Islola d'Elba. We disembarked in Civitavecchia, ITA (Rome) and flew home from there.

We rented scooters (35-55 euros per day) in Cannes, St. Tropez (Vespa, we love you) and Portofino. It was a blast. M. did all the driving and I just rode 'bitch' on the back (can you really be "bitch" on a moped or scooter? Ha ha). I was really proud of his mad skills driving alongside/avoiding the crazy French drivers... and even more-so the INSANE Italian drivers. Actually, the Italian drivers did him in and we gave up scooter rental after Portofino....chose bikes in Elba instead. We went to the beach in almost every port and I got a great (and careful) tan. First one in years and it feels good, however, the sunburned bottom lip didn't feel good, and I woke the 3rd morning looking like I had an overnight Botox treatment of the lower lip, which was hilarious. Days and eves were spent on land, and late nights were spent on board - usually at the Sky Bar. There was a certain group of bar-flies who held court every night there until at least sun up every morning and we only tried to hang with the partiers one night until about 3am, but just couldn't do it. The on-board entertainment were 2 different bands, one from San Antonio (Texas homies!) called CCMaxx who were a talented duo and great fun, and the other a band of all Filipinos (great musicians) called Oasis... haha - we imagined Noel and Liam and the lads as an on-board cover band - what a hoot that would be! One of our friends was such a kook that he did not leave the boat the entire trip, and we are not entirely sure that he has even left the boat yet at this point, LOL.

I would say that St Tropez and Monte Carlo were my favs, but I loved Portofino and Santa Margherita Ligure, too.

St. Tropez-
For all of it's perceived glitz and glamour, St T is really just a very charming little fishing village. You can see the underpinnings of the wealthy side of it a little when the evening hours arrive and the glamorous start driving into town in their Porches, Ferrarris and Bentleys to hit the cool dinner spots, but during the day, you don't really notice... We scootered (this one was the Vespa, ciao baby!) all around St Tropez (my new home away from home... I COULD live in St. T/Provence) through the countyside north of town, past acres and acres of vineyards and olive tree farms, to and from different beaches (Tahiti Beach is where we chose to dip into the Med - saw some big old ugly jelly fish and decided to think again), and up to a beautiful chapel above town which was the an operational center for American 7th Army and Paratroopers in the liberation of Provencal on Aug 15 1944. Sadly, I forget the name of it, but it was beautiful.

Monte Carlo, Monaco-

Next day, I went into Monte Carlo for the day by myself (M. needed down time) and wandered. Missed out on the famous casino because I didn't have proper ID on me (which is needed to get into the main casino -driver's license or passport- and our passports were held by the Purser's ofc on the boat. On a side note, our friends went in last week when they were in M.C. and ran into Bono on his way out...) Oh well, there was more to do and I decided to go looking for Prince Albert. Walked up to the Jardin Exotique. OMG. It is one of the most beautiful places I have ever been. I have to give the French (and Monacans) some major props here... they do flowers and gardens like no-one else. It was breath-taking. I could live in that garden with my Seabourne Legend yacht parked in the harbor below. By the by, the 19th Annual Showboats International Rendezvous was just starting when were were there, so we got to see some of the biggest and richest yachts in the world docking in the harbor at Monte Carlo. Saw a few with Helicopter pads on them, including Ralph Lauren's. I can only imagine who some of the others belonged to. It was impressive to say the least. Anyway, back to my walk... in the garden was a tree called the Yew Tree which yields the bark that is the source for taxanes, which are chemotherapy drugs Taxotere and Taxol (which have been a life-saver for me for about 18 total months of all my treatments) as well as Abraxane, which may be an option in my future. It was donated to the Principality of Monaco the Tartikoff Foundation (Lilly/Brandon Tartikoff) in 2001 in honor of the Prinicpality's commitment to finding a cure for women's cancers. That made for a beautiful and emotional day, I gotta tell you. I wandered from there through the streets around the palace (Monaco-ville) and decided it was time to go back to the boat and get M. It was evening and almost dinner time, so I took him up the hill to Monaco-ville where we happened upon a celebration of St Jean Baptiste in the square in front of the Palace. It was attended by only about 60 locals and included a bonfire and traditional dancers and musicians putting on a performance in the square for the Prince. We positioned ourselves closer to the palace for the festivities and just as the bonfire was lit, I turned and looked up at the balcony just above me and saw the Prince come out to view the performance... I turned to M. and said "hey, look, there he is!" and Prince Albert heard me and smiled and waved at me. Mark just cracked up - and right about that time everyone else saw him and turned and waved to him. Yeah, Prince Albert waved at me. I'm cool. From there, the dancers and musicians then took off in a street parade through the tiny little streets of Monaco-ville with the revelers in tow, clapping and marching along, and we joined in until we got to our chosen dinner restaurant on one of the tiny streets called Pinocchio's (which looked like a little hobbit hole) where we had a really wonderful Italian dinner. All in all, a truly spectacularly lovely day in Monte Carlo...

Portofino/Santa Margherita Ligure-
Woke up the following morning anchored off the coast of Portofino, ITA, again deciding to scooter around the areas surrounding this truly charming little fishing village. This time we talked our friends Tim and Noey, and Christian and Nikki into renting scooters and riding with us. We rode across the hills to Camogli (again thru vineyards and olive tree farms for miles and miles) and then around the coastal road to Santa Margherita Ligure. It was stunning. Stopped for lunch in Santa Margherita and I have never tasted more delicious pasta. Oh my. Fresh made pasta with the most gorgeous pesto sauce I have ever eaten, and the salad tasted like the lettuce and vegs were picked only moments after we ordered. Wow. We also rode up to the Abby at San Girolamo Cervara for an afternoon reception, and it was absolutely breathtaking. Everything about that part of the Italian Riviera was so charming, clean and perfect, it was almost like being on the Universal backlot... simply amazing.

Livorno/Pisa/Siena-
The following day we traveled inland from Livorno by train to 'hold up' the Leaning Tower of Pisa and ride the train through Tuscany to Siena. (Many on the cruise chose the bus tour to Florence, but we decided that Florence deserves more than a 6 hour day trip and we wanted to experience the Tuscan countryside a little... Sadly, we didn't hop off the train in San Gimignano on the way to Siena, but hindsight is 20/20, oh well...) We walked (more like climbed) through the streets of medieval Siena to the beautiful Duomo di Siena. I didn't love Siena as much as I thought I would, and we wished we had taken the train to Lucca or Volterra instead. It turned out that we preferred the coastal villages much more than the inland towns of Tuscany that we chose to visit...

Isola di Elba
Our final day was spent riding bikes to the beaches on the Islola d'Elba which reminded me a lot of Mexico. (Napoleon was exiled to Elba after his forced abdication in 1814. Although he was nominally sovereign of Elba, the island was watched (more or less) by British naval patrols. He stayed on Elba for 300 days before he escaped.) It is a beautiful island and the largest one in the Tuscan Archipelagos. (the Isle of Montechristo is only 40 km south of Elba and we sailed past it as we left, which was pretty cool, I love the Count of Montechristo!...) We sailed past Corsica in the distance, too. Wish we could have stopped there as well...

One of the best parts of the trip was that the sunset wasn't until about 10pm every night. I love that. Wish the whole year could be that way. When I got to Paris, sunset wasn't until about 11pm, which even I have to admit was too late. 10 is good, 11 too late.

So, we are home now, and sad. Besides Texas and Heidelberg, GER (where I grew up as an Army brat) I have now found another home away from home where I could easily live. The French Riviera. I really liked the Provencal people, more than I thought I would and definitely more than the Italians. And I thought it would be the other way around. The French cities were also cleaner than most of the Italian cities. It was a trip that M. and I will never forget. And I am thrilled that I got to experience it with my sweetheart. He needed a break from work and from all my crap. We had a blast and I would rather have experienced it with no-one else! Thanks Mark for the best vacation EVER!


More pics to come soon, stay tuned...
__________________
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."

Last edited by hutchibk; 07-17-2008 at 08:23 AM..
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Old 07-17-2008, 04:36 PM   #9
Bill
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Brenda, I'm simply thrilled for you and Mark that you had such a great time! I loved reading your travel account. I'm going to have to read it again. (Next time can I come, too, if I promise not eat or drink too much, or talk too loud? Also, I could possibly "help out" in Italy, I've passed myself off as Italian a time or two, and I'm a good swimmer if the need should arise, and my personal best at holding my breath under water is 2 minutes and 45 seconds, and I'm very flexible, so I could maybe just sleep sideways in your closet, if that's ok?)
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Old 07-19-2008, 09:14 AM   #10
hutchibk
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Sure Billy - we could've used a resident Italian... our closet was about 4ftx3ft, so if you can sleep in there, you are a great (and very tiny) man!

love, hucklebuck
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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."
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Old 07-19-2008, 10:27 PM   #11
SoCalGal
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Hi Brenda - wow - thanks for sharing your trip - what a GREAT post and the tree story is powerful. (I am heading to Cabo soon. Will post a detailed account of my journey - possibly in Spanish).

xxoo Good to hear from you and see you looking so happy and beautiful!
Love-Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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