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02-25-2012, 08:33 PM
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#41
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Senior Member
Join Date: Aug 2006
Location: Pennsylvania
Posts: 1,080
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Re: Bad Pet. I need you.
Development
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02-25-2012, 09:19 PM
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#42
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Bad Pet. I need you.
Michka,
I am sorry I didn't see this until now. I have - many times - seen women with mets even larger than yours end up NED on chemo. So, please don't give up yet. There is still hope.
I can't advise you on treatment in France but surely you can try other chemos. Navelbine, Halavan, Xyloda? Is tykerb available where you are?
If your doctor doesn't give you options, find another who will, for there are options. If the French system doesn't let you switch, well, break the system and do it anyway.
Big hugs to you. You have lots left to do. And, congratulations to your son coming out of addiction - I hope he continues. I agree with Bonnie. I have parents who have been substance abusers all my life and my mother is dead from it and my father not doing well. The thing is, they have to face reality and learn a different way to cope. So, please don't protect him from any news but tell him that he can cope without drugs.
Many hugs from me.
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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02-25-2012, 09:31 PM
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#43
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Bad Pet. I need you.
Hugs and prayers for you Michka. Hoping a right treatment is found soon for you. Keep up the faith.
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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02-26-2012, 01:02 AM
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#44
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Bad Pet. I need you.
Michka,
You do not seem to have a good support group at present. Please be in touch with me. I am part of a support group here in Mougins at the Tzanck group, Centre Aszureen du Cancerologie and we have two wonderful psychologists in our team and the head nurse for chemo. We have a lovely French woman who is a very active and caring member - I mention this assuming you are French and of course I am always available also.
While I can't give you any medical advice, I can help you research things or at least listen to your worries and let you speak about things that you seem to prefer not to talk or worry your companion or son with.
also of course you have people on this website there to help you also with support and medical experiences and knowledge.
I believe that your son may take this as an opportunity to help someone and that might just be what he needs to get out of his troubles. People can surprise you positively sometimes.
Don't try to solve all of this by yourself. You are not alone and shouldn't be.
call me, skype me or email me
hugs and love
Sarah
ps which hospital are you at in Paris? who's your oncologist?
__________________
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02-26-2012, 04:45 PM
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#45
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Bad Pet. I need you.
Michka, J'en suis desolee mais vous allez trouver une solution avec votre medecin.
C'est tres difficile, je sais, et moi, J'ai peur mais il faut continuer, nest-ce pas?! Sincerement, Ceesun
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02-26-2012, 06:57 PM
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#46
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Bad Pet. I need you.
Consider yourself hugged from me too. I'm so sorry Michka. Although I have no advice or suggestions, there are many here who do! Prayers for you Michka.
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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02-29-2012, 05:09 AM
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#47
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Bad Pet. I need you.
Thinking of you michka, lots of love.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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04-04-2012, 05:35 AM
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#49
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Bad Pet. I need you.
Bumping this up , hoping from an update from our dear Michka.
Michka, comment ca va?
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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04-04-2012, 01:16 PM
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#50
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Bad Pet. I need you.
Michka is o.k., I've heard from her. I'm sure she'll be posting soon. Come out, come out, wherever you are!
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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04-04-2012, 02:06 PM
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#51
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Bad Pet. I need you.
Thanks Karen.
yes Michka, come out, come out!!
xoxo
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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04-04-2012, 02:11 PM
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#52
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Bad Pet. I need you.
yes I too heard from Michka a little while go she is going to the trial TDM1 teresa and yet does not know what she will be randomised to until the 11th Ap.. and get treatment then if things have not changed since then..
We are a bit on the same boat randomisation is such a hard thing to go through.
My thoughts are with her and us all..
__________________
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
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04-04-2012, 10:53 PM
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#53
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Bad Pet. I need you.
Oh thank you for thinking of me!
I am waiting waiting waiting and I am fighting to get in the TDM1 Teresa trial in the south of France. I will know on the 11th if I am in the right arm. I had to do a scan, a brain mri, a bone scan, a heart echo all over again and they asked for slides from my last liver operation so they could check the HER2 status. They have to send the slides to Germany although I have all the pathology reports from Institut Gustave Roussy, one of the biggest cancer center in France. All this is very long. Too long.
I am not very well and my liver is letting me down little by little. I have pain, I cannot eat very well and now I have itching all over. I don't know what to do about the itching. I hope I will be in the TDM1 arm because I believe in it and also because I think my liver will not take a harder chemo. I felt so bad for Kelly who was not accepted in the TDM1 arm. There is no crossover in this trial. This is not right. I am not giving up but all this process is crazy for women who need a treatment. I figure they think we are already lost but we know here that we can hold out a long time with a sequence of different treatments. At least I hope....
Love to all. I will post next week to tell you if I am in the TDM1 arm.
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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04-04-2012, 11:52 PM
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#54
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Bad Pet. I need you.
Hello Michelle,
Thanks for updating us as others have stated there are other chemos as well but I know we will all be hoping with all our hearts that you are accepted in the TDM-1 side.
hope all is going well with your family.
Have you mentioned the itching to your doctor? I had terrible itching skin from the chemo and Herceptin, the best thing seemed to be calamine lotion for me but it does dry out the skin. None of the dermatologists I saw gave me anything (cortisone cream) that helped and eventually it got so bad I had an exzema like condition and sores. Can you take Benadryl or something like that? ask your doctor and maybe try the calamine lotion.
hugs and love
sarah
__________________
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04-05-2012, 04:46 AM
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#55
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Bad Pet. I need you.
Michka, Please know I am always hoping and praying for you. I do hope you don't have to wait much longer.
Peace,
Nancy
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04-05-2012, 07:20 AM
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#56
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Senior Member
Join Date: Jan 2010
Location: Wisconsin
Posts: 80
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Re: Bad Pet. I need you.
I'm so sorry about these results Michka...my heart goes out to you. I'm sure there are plenty of options available to you, this is the best place for support and I'm sure there are many, many people here who can offer you ideas and suggestions as to the next steps you could try to conquer this beast. I'm in tears for you, I'm so sorry. Stay strong as best you can and lean on your family and friends for support and encouragement. Hugs to you.
__________________
Sandra from WI
Stage 1, Tumor 1.4 cm, Grade 3, ER-/PR-/HER2+++
Poorly Differentiated IDC with comedo type necrosis with DCIS/ALH :(
Mammogram: 11/12/09
Call Back Mammo: 11/17/09
Biopsy: 11/25/09
Diagnosis Call: 12/2/09
Partial MX: 12/16/09. 3 LN clean.
6 Cycles Chemo (TCH) Jan-April/10; Herceptin all of 2010; 33 Rads complete 7/10. Herceptin done 12/10.
FOLLOW UPS:
Bil mammo, and Breast MRI 12/10 - CLEAN! (after a second lump was biopsied and BENIGN - showed giant cell reaction?).
Bil mammo 6/11 - CLEAN!
Left mammo 12/11 - CLEAN!
PET/CT scan 4/6/12 - CLEAN!
Bil mammo 8/12 - CLEAN!
November 2012 - Gallbladder Removed.
Bil MRI 2/13 - CLEAN!
http://www.caringbridge.org/visit/sandragreen
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