 |
|
02-22-2009, 11:48 AM
|
#1
|
|
Senior Member
Join Date: Feb 2009
Location: Canada
Posts: 128
|
Bon Voyage
Thank you all for the postings I have received. I am so fortunate to have found this site and to have gained enough courage to join. I lurked for some time before taking the plunge but am so glad to be here. I have met many wonderful women (and a few men), gained much insight and knowledge as a result, and will have found friends I did not know I had. Thank you for your encouragement for tomorrow. I am scared but will endure. As a friend told me, "Chemo will be like running in the rain; put your head down, one foot in front of the other and wait until it is over." I think that may be the case. I have decided to get well and not worry about reconstruction for the time being. I did talk to my ps and he said he would not begin reconstruction until the portacath is out so that will be some time, a long time from now and what will be, will be. I feel like I am about to embark on a long journey and have been seeing friends this weekend with the idea that this will be the last semblance of "normal" I know for some time. Tonight I will have my hair shorn. Thank you for all the helpful hints for enduring chemo and please wish me a bon voyage. Carolyn
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced
I have heard there are troubles of more than one kind
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
|
|
|
|
02-22-2009, 11:55 AM
|
#2
|
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
Carolyn
You will do fine tomorrow...we have all been there with the fear factor...it is the unknown that is so fearful...then afterwards, I know I felt so silly for all the worry. You will be in my thoughts tomorrow as you begin the next phase of this journey, and one phase closer to insuring a long happy future.
__________________
"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
|
|
|
|
|
02-22-2009, 01:01 PM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
|
We're all with you. I think you'll be surprised at how much better you'll feel than you think you will. The fear of being on chemo will lessen once you see you're actually managing it. I'll be starting a new chemo treatment tomorrow so I'll think of you as we both take our first steps.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
|
|
|
|
|
02-22-2009, 01:11 PM
|
#4
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Bon Voyage
You are not going anywhere. You are just adding something called cancer treatment to your life.
Chemo has a bad rap, but docs can do alot to help with the side effects etc. Hang in there, hold your head high, stay positive and keep putting one foot in front of the other.
|
|
|
|
|
02-22-2009, 02:11 PM
|
#5
|
|
Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
|
The fear of something has usually been worse than the actuality for me, and I think you will find the same for you with chemo.
It will pass one day at a time.
I'll keep you in my thoughts and prayers. Chemo isn't fun, but it is doable!
__________________
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!
|
|
|
|
|
02-22-2009, 02:33 PM
|
#6
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Carolyn,
We all felt the same way the day before chemo.
I can only share that our imagination is unkind to us.
Sending you positive energy and best wishes.
Kindest Regards,
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
|
|
|
|
|
02-22-2009, 02:46 PM
|
#7
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Hi Carolyn,
Good luck tomorrow, you will do fine. Chemo is not as bad as its reputation for most people. Listen to your body, rest, and you will get through it.
Let us know how you are doing when you can.
Cheers from a fellow Canuck.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
|
|
|
|
|
02-22-2009, 03:10 PM
|
#8
|
|
Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
|
I agree with everyone else. The thought of chemo is actually worse than the chemo. It is not the dreaded thing of days past. Just remember to follow all instructions and you should be fine.
__________________
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
|
|
|
|
|
02-22-2009, 05:09 PM
|
#9
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Good luck, Carolyn. Let us know how you're doing and how we can help.
__________________
For Nicola
|
|
|
|
|
02-22-2009, 05:13 PM
|
#10
|
|
Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
|
Good luck to you....I can understand how hard the change is. Look forward to a good future and try to focus on that!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
|
|
|
|
|
02-22-2009, 05:56 PM
|
#11
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Bon voyage!
__________________
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
|
|
|
|
|
02-22-2009, 06:53 PM
|
#12
|
|
Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
|
I'm betting that you will do just fine! It is scary to begin something new that is so important to our very life. But it is also exciting too. You'll meet new friends, kill off some very bad critters called BC cells, and prove to yourself how very brave and wonderful you are. We'll be waiting to hear all about it. Luv, ma
__________________
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!
|
|
|
|
|
02-22-2009, 08:01 PM
|
#13
|
|
Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
|
We've got your back, girlfriend! Prayers for peace and protection coming your way.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
|
|
|
|
|
02-22-2009, 11:44 PM
|
#14
|
|
Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
|
Bon Voyage, I like it. Okay so the chemo might make you a little sea sick. Just remember to get all the right antinausea medicine. Also, make sure you have the chemo nurses phone numbers. I remember that it was helpful to call them when I got home and had questions about how I was doing. I believe in drugs....I took ativan before chemo and took and antidepressent for the 4-5 months I was on chemo...maybe I took it longer. Can't remember. I was scared too. We are hear for you. If you are up in the middle of the night and can not sleep, post a little note. It can be a tough march with your head down, but just remember one day at a time. Try to walk a little every day, if it is even just around the inside of your house. We are behind you and want to help support you.
All the best, Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
|
|
|
|
|
02-23-2009, 05:43 AM
|
#15
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Let us know how things are going.
Amelia
|
|
|
|
|
02-23-2009, 06:30 AM
|
#16
|
|
Senior Member
Join Date: Apr 2008
Posts: 1,477
|
I am thinking of you today and sending good thoughts. Remember that YOU CAN DO THIS and each day that you do brings you closer to the end of treatment. Follow the nurses' advice.
Warm wishes,
Karen
|
|
|
|
|
02-23-2009, 09:41 AM
|
#17
|
|
Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
|
Praying for you and wishing you speedy recovery. Like everyone has assured, chemo will be ok. Just drink lots and lots of water and you will be able to minimize most of the side effects.
love,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
|
|
|
|
|
02-23-2009, 09:48 AM
|
#18
|
|
Senior Member
Join Date: Apr 2008
Posts: 69
|
Embrace the journey
I began my treatment journey on March 17 2008. I intend to complete it on May 18 2009. I have received a great deal of support from family, friends and this people on this site. It is imperative for you to be able to lean on somebody when times "get tough" Speaking as one who has travelled the treatment you are about to embark on, I can assure you, it will end and you will be cured. As I reflect on my course of treatment, I know how daunting it can seem. I now look back on it as an epiphany for my husband and me. Believe me, if I could turn back the clock and never have had this diagnosis I would! But as one of those who have walked in your shoes, I can offer you the assurance that your treatment will have a beginning, middle and an end. The end of your treatment and your cure will be here soon! Arm yourself with information and a plan. Do not be afraid to be your own advocate. If you do not understand something your doctor is telling you, ask him/her to explain it again. Never be afraid to seek second and third opinions. Focus on the end product—your cure!! I wish you the very best and a peaceful “journey.” Be very sure that you will, very soon, be rid of this disease. My prayers and most sincere best wishes are with you.
YOU WILL PREVAIL!
Brenda
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)
Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
|
|
|
|
|
02-23-2009, 04:52 PM
|
#19
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Hi Carolyn-
We need a report on chemo day #1!
--Another West-coast Warrior Woman
__________________
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.
|
|
|
|
|
02-23-2009, 10:55 PM
|
#20
|
|
Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
|
Go get em Carolyn! Sending you positive thoughts on your journey.
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
|
|
|
|
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 11:46 AM.
|
Linear Mode
