 |
05-23-2008, 07:53 AM
|
#1
|
|
Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
|
I have just walked 150miles/250km..
In 10 days.. I did the spiritual Pelgrimage (Camino Frances) to Santiago de Compostella (in Spain) and have just walked 250km through the mountain range...carrying a bag pack of about 8k.
I feel fit and healthy ad off course I am soooooooo incredibly grateful to be in a position to be able to do that.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
|
|
|
|
05-23-2008, 08:09 AM
|
#2
|
|
Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
|
Hiking
Hi FOB
Fantastic! Thanks for sending your energy and sharing your horizon with us -- Keep setting new goals, my friend!
A.A.
|
|
|
|
|
05-23-2008, 10:49 AM
|
#3
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
walked 150 miles
Hi,
Congratulations !! That is absolutely fantastic. You have the right stuff.
|
|
|
|
|
05-23-2008, 11:21 AM
|
#4
|
|
Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
|
Amazing! Absolutely amazing, girl!!!!!
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
|
|
|
|
|
05-23-2008, 11:42 AM
|
#5
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
That is quite an incredible journey. I like to travel, and you have given me hope that one day I will be able to do the traveling again.
Amelia
|
|
|
|
|
05-23-2008, 12:58 PM
|
#6
|
|
Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
|
You go girl! That is awesome. I thought I was doing something great walking 39 miles for the avon walk last year, but you top that!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
|
|
|
|
|
05-23-2008, 02:44 PM
|
#7
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Dear Beans -
This makes me SO happy to hear you have accomplished something like this. It was a big deal for me to go to the dentist then stop at the Dutch bakery and farmer's market on the way home! And that is all in a car ...
We are curious. How long did it take you and were you with a group that had scheduled stops and shelter along the way? Did you begin at St. Jean Pied a Port or close by there?
We visited Fatima on our last trip to Portugal. They have some 13,000 to 15,000 people on the first Monday of every month! We got there on Wed after the first Monday and the garbage was still overflowing and not picked up. The camping area was also still a mess.
__________________
"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.
|
|
|
|
|
05-23-2008, 05:10 PM
|
#8
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Wow, that is awesome Beans! Hiking like that really gives you time to reflect and calm your spirit. I've never done that sort of hike, though. You are amazing. Best wishes, Bill
|
|
|
|
|
05-23-2008, 05:49 PM
|
#9
|
|
Senior Member
Join Date: Jun 2007
Posts: 2,210
|
Thanks! How inspiring!
I'll be at the Dutch bakery with Steph! lol
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
|
|
|
|
|
05-23-2008, 07:17 PM
|
#10
|
|
Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
|
Oh my gosh Fullofbeans....THAT is incredible!!! I am SO PROUD of you!! BUt I have a suggestion...after that awesome story, you should change your name from Full of Beans to Powerwoman or something more right-on to the REAL YOU!!
Here is a "high 5" to you sis!!!
__________________
*** 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
|
|
|
|
|
05-24-2008, 10:10 AM
|
#11
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
HARRIECANARIE,
I like "Fullofbeans", whatever it means
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
|
|
|
|
|
05-24-2008, 12:19 PM
|
#12
|
|
Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
|
Isn't "full of beans" a cliche' for "a lot of bs"?
__________________
*** 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
|
|
|
|
|
05-24-2008, 02:20 PM
|
#13
|
|
Senior Member
Join Date: Mar 2006
Posts: 1,843
|
Congratulations Full of Beans
I saw a documentary on the pilgrimage route and walk a while a go.
It looked a wonderful thing to do, and there seemed to be a great spirit of co-operation and friendship between those that were doing the walk.
RB
|
|
|
|
|
05-24-2008, 03:54 PM
|
#14
|
|
Senior Member
Join Date: Oct 2007
Posts: 1,851
|
Hi fullofbeans,
That's fantastic. You must be in fabulous shape. Keep on going. And NED too.
Best, Joan
__________________
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!!
|
|
|
|
|
05-26-2008, 02:26 PM
|
#15
|
|
Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
|
Thank you all so very much for all your kind words. No I went on my own but it is a well known pelgrimage route so there are quite a few people doing it too so it is absolutely not an issue. And yes indeed nice to think& contemplate.
There are what they call "Alberge" which is a kind of refuge where for few Euros you get a bunk bed and there is a shower room and often basic kitchen facilities. These can be found every 10 to 15 km.
Haha I had to laugh about the name saga.. I seems it is a UK only idiom! and I have just checked it says
"be full of beans: to have a lot of energy and enthusiasm. e.g. I've never met anyone so full of beans before breakfast."
lots of love
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
|
|
|
|
|
05-26-2008, 02:44 PM
|
#16
|
|
Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
|
Ok Fullofbeans..now I understand! Oh yes, the UK idiom version matches you very well now! LOL!!!
You GO Fullofbeans!!!
__________________
*** 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
|
|
|
|
|
05-26-2008, 03:16 PM
|
#17
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Good name for you
About the name. That makes much sense.
My grandma used to say we were either "full of beans" or "full of vinegar" when we would not settle down for her when my parents were gone on a trip.
Not that we were being bad kids, just energetic or busy with our own distractions. Unless she baked cookies or something - then she got our attention!
__________________
"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.
|
|
|
|
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 07:42 AM.
|
Linear Mode
