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02-01-2010, 11:23 AM
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#1
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Dawn and Joan M - How are you?
Just wondering how you are doing? Please check in when you can.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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02-01-2010, 01:14 PM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Dawn and Joan M - How are you?
Thanks Tonya for asking about them...I am wondering too.
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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02-01-2010, 07:57 PM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Dawn and Joan M - How are you?
and good luck on your tests tomorrow, Tonya!!!
__________________
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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02-01-2010, 11:43 PM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Dawn and Joan M - How are you?
Tonya,
Good luck on your test. [Thanks, MA]
I just sent Dawn and Joan an e-mail about this thread. Hopefully we'll hear from them soon.
__________________
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
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02-02-2010, 07:31 AM
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#5
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: Dawn and Joan M - How are you?
I know that Joan M is healthy and busy. I expect she will post soon.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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02-02-2010, 08:44 AM
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#6
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Dawn and Joan M - How are you?
Hi everyone,
Tonya, thanks for asking, and yes I have been very busy.
Things have been both good and bad. I'll get the bad stuff out of the way first, which is related to my stage iv cancer.
There's no sign of cancer lately, which is a good thing. The bad stuff relates to the thoracic surgery, and I'm very upset about it because I feel like I'm literally unraveling at the seams and the thoracic surgeon is very evasive on questioning.
I've never felt physically the same since the surgery, and I have constant pain and discomfort in the rib cage and back, a pulling sensation. And my rib cage on the surgery side sticks out much further than on the opposite side. I've just gotten used to it. It's now become part of life.
But besides that, about two weeks ago I noticed a bump about the size of half a hard ball in the middle of my shoulder blade, which turned out to be fluid accumulation. The thoracic surgeon who did the "emergency" surgery in July (who I do not trust, along with his staff) withdrew 50 cc of fluid, which tested negative for cancer, bacteria and fungus. And I'm grateful for that. As far as he's concerned, the issue is resolved unless it happens again, and I don't like his attitude.
The CT scan report said that fluid accumulation between the posterior chest wall and pleural space had deeply penetrated to the latissimus dorsi mucle. It also suggested a possible "communication" between those two spaces, which is basically a hole (even though there was no actual sign of that), and that attention should be given to follow-up. Since I'm due for regular scans in early March that will be the follow-up.
I've had a lot more discomfort since the bump, and I'm feeling more out of breathe going up stairs and doing tasks, probably due to the fluid accumulation putting pressure in the area. The surgeon said the body will absorb the extra water.
The area of the lung where the surgery was done looks fine, and the fluid accumulation is on the other side of the chest wall, so not in the lung cavity.
The surgeon was very evasive on questioning. I've yet to find out the bigger implications of this, other than the fact that he'd have to go in there again to fix it if it happens again.
I've been watching the reduced bump, which may have gotten a little bigger, but it's hard to tell just yet.
I had a brain MRI in October which showed increased enhancement over the June scan in the area of the surgery and radiation. The report said it was probably due to postradiation changes (that is, necrosis), but regrowth could not be ruled out. I've spoken to both the radiation oncologist and neuro-oncologist, which both say we'll just have to wait it out. And I'm not good at that.
But the good news is that there's no confirmation of any cancer anywhere, even though that's always a waiting game, anyway.
Also, I've been volunteering one day a week answering the SHARE hotline and happy to be helping out.
Since photography is my hobby I've been taking classes lately. It's good because it keeps my mind occupied and helps me to stop worrying.
I'm adjusting to not working any more. I was due to return to work in early September after recuperating from the thoracic surgery in July, but along with my oncologist, decided to call it a day. My job was very stressful and demanding, and several of my co-workers have been let go since then. It's been an adjustment emotionally. I went through a very hard time with that and I think I'm finally starting to emerge.
xoxo
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 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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02-02-2010, 09:19 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Dawn and Joan M - How are you?
Joan, what a lot of crap to be dealing with.
I think tho that once you complete your transition to lady of leisure (albeit filling a lot of that extra time with medical stuff) it will be a positive thing to be free of the work stress. That way you can focus on (relieving) the other stress.
Photography is such a wonderful hobby - I've recently gotten into it and even though I'm not very good, I find it really makes me take a better, and slower, look at the world around me. So many wondrous things, including people. Maybe you can make that a second, more enjoyable career.
In the meantime, focus on getting yourself healthy. I might be confused about the thoracic surgeon - is there one or two? It is so important to trust our medical partners...and if you can dump the untrustworthy one with the attitude problem you might be better off!
Take care,
Chris
__________________
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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02-02-2010, 01:54 PM
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#8
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Dawn and Joan M - How are you?
Joan,
Glad to hear from you.
Amelia
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02-02-2010, 02:14 PM
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#9
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Dawn and Joan M - How are you?
Joan, Been wondering how you are doing...welcome to the world of retirement. It is an adjustment, but I think you will be pleased. xo Ceesun
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02-03-2010, 01:40 PM
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#10
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Dawn and Joan M - How are you?
Joan,
I relieved to learn that you are busy. I hope you can get some relief from the pain you are experiencing.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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02-03-2010, 02:29 PM
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#11
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Re: Dawn and Joan M - How are you?
Hey Joan; Good to hear from you. You have always been so kind to check in on me from time to time when you noticed my absence. I was hoping you were so busy not working and enjoying your reduced stress days, that there was little time to check in.
My Jan brain scan has an issue that I have to wait and see too. I scan again in March. Please pm me and let me know how things go for you and I'll do the same.
Sending my best well wishes...Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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02-03-2010, 02:47 PM
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#12
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Dawn and Joan M - How are you?
Just got an e-mail from Dawn. She has an infusion today and will post on the Board later.
"...please let Faith in Him know Im doing fine and have been lurking in the background. Also I hope everything went well with Saint on Monday."
__________________
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
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02-03-2010, 04:04 PM
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#13
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Dawn and Joan M - How are you?
Hi Guys,
Thank you so much for checking in. I've been really busy also. School is back on after Christmas and activities have started up also with my kids. So, Thank God, that keeps me really busy.
I've finally come to terms I think with my Stage iv dx and I'm dealing with it quite well, I think. I take a few ativan with me everywhere just in case a "feeling" comes over me. My onc, has been a "Godsend". Returning my frantic calls, in the beginning and trying to give me some consolation. He even stopped his appts, one day when I popped in, just to assure me "this is not the end, only the beginning of hopefully putting this in it's place for good". How can you not love a doctor like that? My son has "Aspergers Syndrome" when he was in for his appt last week, my 5 year old daughter(who loves my onc) wanted to see him. So we called down to his office(in the same hospital) to say hi and he wanted her to come down to see him. She was so very excited and he was genuinely happy to see her and also to see I was doing so much better. I'm very lucky, between my doctors, my husband, kids, brother and 3 sisters and now the wonderful friends I've found here and on the BCO site. Im starting to realize I should be thankful and not mope and drip but take advantage of not being sick(fingers crossed) and enjoy what I have. Hey, I think the optomistic Dawn is coming back again. Today I had my 3rd ARedia infusion. SE aren't bad I find Im achy for a couple of days, a little tired today, the night of the infusion I get cold chills but then that is just about it. Thankful again!!! No real SE with Aromasin, or none that I find. Next Thursday, I have my CT Scan to check on things, then I go see my onc on the 22nd. Hopefully an NED result, or Stable would be good too. But if there's other news, well Im going to have to deal with that, when the time comes, but I've come to the conclusion that Im not going to waste precious time with people I love and care for, in a state of panic and depression. Things will be as they are meant to be. There's other news also. Im considering going back to college to do a course in Early Childhood Education. Tomorrow morning I have to do an Entrance Exam. I read somewhere that you need to start living for today. So yup, I m looking to change careers from Accounting to Student Assistant. Not only because it's something different, it will give me the opportunity to spend more time with my children and also learn some valuable skills to help me with my son. So why not.
Anyway, I'll keep you updated on whats going on and thank you so much for checking in.
Faith-In-Him I check in daily on Prayers for Saint to see how things are going. Hope all is well
Dawn
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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02-03-2010, 07:18 PM
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#14
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Dawn and Joan M - How are you?
So glad to hear things are looking up. You have a wonderful onc.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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