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07-29-2011, 04:57 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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doctor update
Lots of things going on,. I start radiation on my left thigh next Monday - don't know yet if it will be 15 or 20 treatments. I've been having pain the past 3 weeks - on and off. Also my left thigh muscle has atrophied in last few weeks - visibly smaller than right. Onc. Rad. Onc. Ortho surgeon or Rheumatologist, or Physical Therapist - none can tell me what caused that & haven't seen it before in just one limb, I had MRI of thoracic spine to see if nerve issues but nothing points to that. Will have MRI of lumbar soon. The MRI did show lots of tumor in all vertebrae.
My tumor marker blood test was way up two times in a row from 2770 - 4900 this week - means more cancer - the chemo I'm on - halaven - is probably not working any longer. The oncologist is keeping me on the same chemo for a few more weeks until I finish radiation. Usually they don't do both at same time but they think I should do it & it will be safe.
Before I see him again in 3 weeks I'll have scans to see what's going on. PET/CT, MRI of brain, lumbar. Doesn't look good right now. The onc. said I've lost ground - he's usually su positive. It's something I've thought but haven't said out loud.
I've been doing physical therapy to try to regain some strength. The rad. doc. said I should be very cautious due to the thoracic MRI and all the mets. The onc. says he wants me to continue to not lose more strength & he says to ask the ortho doc what restrictions & what it safe. The PT doesn't seem to know (?) I think the fact that it's cancer related has her nervous. I'm going to see if there's someone else there who has had more training in this type of therapy.
Trying not to panic. But I'm really scared now. It seems I haven't had a break in over a year now and new things keep going wrong faster and faster. Wondering if this is the end? I still have fight in me but am so discouraged. Thanks. Pam
__________________
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
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07-29-2011, 09:41 AM
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#2
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Senior Member
Join Date: Jul 2010
Posts: 42
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Re: doctor update
Hi Pam,
Sorry to hear all the hurdles you've been through. I am sure the radiation will help and you will feel fine soon. I am sending you positive thoughts and hope you feel better soon. Love, Grace
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07-29-2011, 09:52 AM
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#3
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: doctor update
Count me in your cheering section. I am still here cheering for you and keeping my fingers crossed that things will turn around for you soon. Remember there are several targeted drugs that might be approved very soon. I heard that Genetech is applying for Petuzumab approval soon. So, if you can hang in there and keep putting one foot in front of the other for a while longer good things will be available for you soon. Take good care of yourself.
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07-29-2011, 11:15 AM
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#4
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: doctor update
Pam
So sorry you're having a hard time again.You are such a fighter and will continue to be I just know it. As Elaine said more targeted treatments are coming. Please hang on, you have inspired so many for so long, me included!
Hugs
Ellie
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07-29-2011, 11:47 AM
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#5
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Senior Member
Join Date: Mar 2010
Location: Thornhill Ontario
Canada
Posts: 266
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Re: doctor update
Hi Pam Been following your progress and so sorry this battle seems constant for you. I am hoping you can "regain" that lost ground your oncology spoke about. Pam you are truly inspiring with your fight and you are also letting out your emotions and how you feel about being scared. I will be thinking about you and sending a prayer for you Pam, you keep strong as hard as that probably seems right now and hopefully there can be uplifting news coming your way soon. Best wishes Lois
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara
November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2
January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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07-29-2011, 12:17 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: doctor update
Dear Pam -
As always you have my best wishes, prayers and positive vibes going out for a better result.
I had high hopes for the Halaven having better control of your cancer.
I am thinking that exercise on floor mat or bed would be good type for you. If floor is too difficult in getting up and down, then your bed should be a good safe place. Thinking that you need to avoid a fall so prone position is appropriate.
There are "core exercises" that are good either on your front or back. You can do the bicycle in the air type on your back. This is good for circulation as well.
Do you have some 2 or 3 pound weights for your arms and upper body. The excercises with these can be done seated.
Also, don't forget the Sit and Be Fit lady on TV. That is better than nothing. My mom likes that show and easy workout.
Can't imagine your PT would not be thinking along the above lines.
__________________
"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.
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07-29-2011, 12:36 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 215
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Re: doctor update
Sorry to hear you are going thru this again Pam as you are one of my hero's on this site, you are such a fighter. May God's Blessings be upon you. I know things will get better, they just have to, enough is enough, Jeanette
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07-29-2011, 12:52 PM
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#8
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Senior Member
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
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Re: doctor update
Pam-
Sorry to hear about your additional problems. I'm a physical therapist assistant. Your PT may be concerned with any bone mets, it puts you at more risk for fractures, so any type of weight bearing exercise could put more strain on the bones. Vertebrae are particularly prone to compression fractures when they get weakened. Pool exercises take that strain off if your PT clinic has one. Don't get too worried about your PT being worried. Cancer is one of those precautions that is diven into our heads as students that we have to be so careful about. We don't want to cause any harm to our patients so when cancer is involved it just makes us more cautious. There are PT's that do specialize in cancer treatment mostly with lymphadema but tend to be more up to date with types and precautions if your PT is uncertain as how to progress you through this stage.
Hope you start to take a turn for the better soon.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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07-29-2011, 01:11 PM
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#9
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: doctor update
Dearest Pam;
I was hoping to see a better post from you. I hope things will get better. Keep fighting; you are inspirinig me to do the same. Sending prayers and hugs your way.
Love,
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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07-29-2011, 02:40 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: doctor update
Hi Pam,
My thoughts are with you and I feel your concern. You have already received some good suggestions here. I notice that you have not had TDM-1. It was the drug that put my bone mets into remission. I wish there were a way for you to receive it. In spite of your frustration with all these treatments, my hope for you is that the therapies your oncologist suggests will keep you stable enough until more of the targeted therapies become available to you. You courage is also an inspiration to me. I always look forward to your posts.
Kind regards,
Barbara
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07-29-2011, 02:55 PM
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#11
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: doctor update
Reaching my hand across the wide space between you and me here in TX, but sending much love, encouragement and comfort your way. You are so amazing and continue to inspire me with your battle-wise decisions and efforts. I'm pulling for you to have some good news and some good loving hands to guide you and love you as you make each decision. Much love to you, girl! 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!
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07-29-2011, 03:06 PM
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#12
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: doctor update
My heart goes out to you, Pam. I'm sorry you are going through this. I just lifted you in prayer.
((Hugs)),
Paula
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07-29-2011, 03:48 PM
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#13
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: doctor update
Sadly no advice Pam but holding you close in my thoughts, stay as strong as you always are!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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07-29-2011, 03:59 PM
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#14
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: doctor update
I was just swimming and wonder if that might be available to you? Water therapy is thought to be a gentle way to get exerecise. I, too, always look forward to your posts because you maintain a good attitude despite set backs. You are an inspiration. Keep the faith.
__________________
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
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07-29-2011, 04:02 PM
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#15
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: doctor update
Pam, Sending prayers out to you as well. Ceesun
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07-29-2011, 08:08 PM
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#16
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: doctor update
Pam I am sending big hugs and prayers from Canada. Try to keep your spirits up, hopefully a new plan of attack will start soon for you.
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!!
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07-29-2011, 08:21 PM
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#17
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: doctor update
Pam,
I am so glad you posted. I know it was with heavy heart you shared what is happening. As I read your signature I can not believe all the years you have been fighting! You are an amazing woman, blazing the trail through for all of us. Right now I am praying for peace, clarity, and joy. Know that we are with you every step of the way. Hugs from Texas!
Elizabeth
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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07-29-2011, 08:37 PM
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#18
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: doctor update
Hi Pam - you are such a special "warrior" and I admire your determination and you do it all with such grace. Although it made me feel sad for you, it was good you shared your deepest thoughts and fears with us. We would all feel what you expressed to us. For now, we will just say ~ one day at a time! That is more than enough.
I, too, just lifted you upnin prayer.
God's peace I pray for you tonight,
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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07-30-2011, 03:07 AM
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#19
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: doctor update
Pam,
Keep strong keep taking care of yourself whichever way is best and don't lose the faith - always more drugs on the horizon which isn't as far away as it seems at times.
Sending best wishes from far away
Jenny x
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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07-30-2011, 05:28 AM
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#20
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: doctor update
Sorry to hear things are so difficult at present Pam. I am thinking of you and hoping for an easier time for you ahead,
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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