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03-27-2007, 01:50 PM
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#1
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Talk me down off of the ledge please.
Hi All,
I have been cruising along since diagnosed with stage 4 last March 06.
The stage 4 portion of the journey started with C-6 spinal replacement surgery and Femara for treatment (Lapatinib trial 50/50 chance still uncertain as to if I got Lapatinib with Femara). Had progression to liver and switched to Gemzar and Herceptin for 6 months with one month off for radiation to spinal area where I had surgery. I had good results with Gemzar and Herceptin and switched to Faslodex and Herceptin in late December.
Well it is scan time next week and last week I started with a slight headache. I saw my doctor today and asked to add a brain scan (last one was June06) to the MRIs, CT, and Bone scan and she said fine. She also said that my markers have begun to rise and she wants to get a look at those scans...all scheduled for next week. She said that it was the first time that the markers started climbing but not to worry too much.
Okay, since my appointment I have not been able to quit crying / screaming / praying / begging / repeat cycle. I don't know how I can do this. I am so scared. I am having a huge pitty party for myself. I was able to fake my little boy out. He is 8 and he came home and I held it together until he went out again. I work with a yoga / visualization person and she comes tonight for my session.
Sorry to dump here but I thought that if I started typing I could quit crying. Do tears ruin key boards?
Thanks for listening.
Carolyn
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03-27-2007, 02:02 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: NYC
Posts: 250
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Carolyn--
I wish I could do something to make you feel better. I don't know what it is like to walk in your shoes and face the challenges that you do, but I wanted you to know that I read your post. I hope your yoga guide helps you find some peace tonight. Please don't focus on your headache-- there are many reasons for it, including the stress of scans and lack of sleep.
Good luck tonight.
Jen
__________________
dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com
"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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03-27-2007, 02:05 PM
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#3
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Carolyn - deep breathing, remember that markers can go up and down for no reason, you'll have the results soon enough. Will be thinking of you in the meantime. Bx
__________________
Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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03-27-2007, 02:46 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Carolyn, I don't know if the markers are just jumping on their own or mean something. But I do know that your little boy has a very honest mom who just needs a massive dose of hugs right now. I'd be totally crazy also. And while my boys are grown (28 and 30), my little granddaughter that lives here is 8. When I have those unknown times, I just load up on tons of hugs and pop corn! Every time your mind tries to travel too far down the road into the future, draw it back to right now. Today is all you can deal with now. Get those hugs and believe that you can do this one day at a time! Lots of love,
mary anne
__________________
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!
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03-27-2007, 02:47 PM
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#5
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Member
Join Date: Aug 2006
Location: Central NJ
Posts: 16
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Carolyn
I was dx stage IV last March too; I know how hard it is too keep it from your son. There's times I just want to burst into tears in front of him and sob away, but I too, hold it together until he won't know.
I'll be praying for your scans. I had a 3 week headache in January and thankfully, an MRI came back clear. My markers are normal, so my onc wants to wait until May for more scans; the last set was Dec 26th. I'd like to have them weekly at this point!
I know you're petrified and you have a right to be. But don't forget, the scans may be clear. There's just as much a chance of them being clear as not. And if they're not, you caught it and can begin treating it. But you know as cancer patients we'll never stop imaging that it's coursing thru our bodies and we could even have things like ankle cancer; that's just the way we are! So, fists up and be sure and let us know how it goes next week. Have a good cry now and then; I think it helps to clear us out!
(((hugs)))
Julie
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03-27-2007, 02:53 PM
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#6
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Carolyn,
Not much I can offer that these others haven't said but I can offer a cyber hug and I will do just that. I'm sorry you have to go through this. I'm sorry anyone has too.
Hugs, love and heartfelt care I send,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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03-27-2007, 03:47 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Carolyns,
I don't know very much about the tumor markers as my onc doesn't do them. I am hopeful that you will receive good news on your scans. There are good txs out there to get you back to NED if something shows up.
I have kids also and the thought of not seeing them grow up makes me sick. Cry all you want. This is serious stuff. But, do not feel hopeless. There is always hope. Please know that you are in my prayers.
Hugs,
Lexi
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03-27-2007, 03:49 PM
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#8
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Senior Member
Join Date: Jan 2007
Posts: 72
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A very, very heartfelt hug to you.
Kathy
__________________
12/01/2006 Initial Dx via stereotactic biopsy - DCIS, grade 3
12/27/2006 Lumpectomy w/ SNB: 2 foci of IDC (largest .3 cm, Grade 2, Notthingham score 6) amid large area of DCIS: No clear margins on the DCIS; re-excision recommended
ER+(55%)/PR+(60+)/HER2+ (2.8+ via IHC?)
01/23/2007 Re-excision Lumpectomy: No clear margins on the DCIS; mastectomy recommended
03/02/2007 Bilateral mastectomy w/ expander implant insertion
03/19/2007 Emergency surgery to fix broken blood vessel in left breast
03/30/2007 Met w/ oncologist; oncologist checking on HER2 status with pathologist and doing some consulting on my case - no treatments for now!
05/02/2007 Next appointment w/ oncologist
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03-27-2007, 04:04 PM
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#9
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Hi Carolyn, I am Stage IV also with lung mets..been NED for the last year. Believe me, I know how you feel. I have an 18 year old son and 8 year old daughter that I have to be here for. Even being in remission, I still have terrible crying spells. I usually try to go somewhere where I can't be seen or do it while I bathe. The fear of this is numbing and I dont know what to tell you to make you feel better, just take deep breaths and pray. I usually will cry so hard that I wear myself out and then I feel better. My brother is going through the last stages of melanoma that has returned to his liver so I am having to watch what this is doing to him, it's so hard. I don't know much about tumor markers, my Oncologist does scans on me every 3 months. As far as the headaches, I went through spells of terrible headaches that would last for a month and longer, they were awful. All my brain MRI's have been clean. I just figure they were from the Herceptin or stress. Please try to stay calm (easier said than done) until you finish your scans and get your results. It always helps me to remind myself that this is totally out of our hands, it's in Gods hands. All my worrying, crying and fear isn't going to make a bit of difference. Lay it at his feet and pray that he will take care of it. Other than that, you may want to get on some sort of anxiety pill such as Xanax, it works wonders for me when I have anxiety attacks. Well, I went from the Lord to nerve pills..lol. sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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03-27-2007, 04:19 PM
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#10
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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WE ARE ALL HERE FOR YOU, we can all be scared together, share news together, laugh together and always be here together.
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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03-27-2007, 04:25 PM
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#11
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Oh Sherry............Hahahahahahaha! I just had to post back to you to tell you how your post brought a smile to my face. The part where you said "I went from the Lord to nerve pills" Hahahaha! I'm still smiling.
Hugs -
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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03-27-2007, 05:11 PM
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#12
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Carolyn,
I am so sorry you have to go through this waiting. It is so hard. Many will be praying for you. Enjoy your delightful 8 year old son. I wish I could give you a hug.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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03-27-2007, 05:24 PM
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#13
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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just adding
to everyone's thoughts for you. I know this disease is hard on anyone who has it and their loved ones-it is. I kinda think, though, for those of us with these babes it is a little extra torturous. We have our children to raise them-period. And the thought of anything threatening that is sickening. You have my empathy.
You also have my thoughts and prayers that you will get all the tests necessary, that all will be good and there will be sighs of relief. Love to you.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-27-2007, 05:59 PM
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#14
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Carolyn, no need to apologize for venting, we all know this place is our safety valve. You are not alone, and I just want you to know that. Give your boy a big hug for me.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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