HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 09-25-2012, 12:35 PM   #1
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Unhappy Breast Cancer Spread to Uterus

MJs husband:
Greg, My heart goes out to you and your wife. Let he know she is not alone.

To all:
I feel bad that I have not been active with HER2 support group for quite a long time. Although NED for almost 5 years, I was experiencing other problems, including back/hip pain and depression. I tried logging on a at various times but ended up having trouble with my logon ID somehow changed to “JoanneS” instead of “Joanne S” and my emails wouldn't go through. Somehow I got through to PinkGirl a few months ago. Thanks PinkGirl for initiating the fix a while ago. I hope all my HER2 buddies will forgive me for being away for so long.

My last MRI and CT Scans in December 2011, revealed NED. A month ago, I started having abnormal bleeding on and off. I had a pelvic, pap smear and ultrasound---all with normal results. I then had a new PET Scan and then D&C surgery two weeks ago. Last week I got bad news that the D&C pathology and the PET Scan findings revealed cancer in my uterus.

I searched and scoured the internet for any info relating to BC mets to uterus (BCTU), but found nothing. I found info relating to Tamoxifen risk for uterine cancer-- I don’t have uterine cancer and I’m not on Tamoxifen---I have breast cancer to the uterus. I know once you have BC you are at risk for metastasis so I felt blessed for being NED and felt I will be strong and handled getting this news quite well.

I had chemo induced menopause and was only on Tamoxifen a few months. I’ve been on Arimidex for over 4 1/2 years and I have breast cancer metastasis to the uterus; so yes, it’s definitely very uncommon. My BC oncologist referred me to a gynecological oncologist surgeon, which I saw last week, in hopes of scheduling a hysterectomy ASAP, but after having a pelvic by this specialist, I was in big-time shock to find out that I have tumors outside and beyond the uterus; and therefore, I am not a candidate for a hysterectomy. The cancer spread to the uterus, cervix, pelvic ligaments, nodes, and my right greater trochanter (top of femur)-and possibly the glutemus maximus muscle and bladder. I was absolutely shaking inside everywhere. It just made me wonder how so many others here have so much strength. I admire them so.

I'll be going for another MRI next week to get a clearer picture of all involvement. Although my primary breast cancer was ER+/PR+, and HER2+, I found it odd that this metastasis is ER+/PR+ and negative for HER2. My oncologist indicated that the cell characteristics can change when they decide to park and grow in a new location in the body. Evidently the Arimidex did it job for quite a while but isn't anymore. I started Exemestane today. Along with all the new anxiety of the dx ---ugh---I’m not surprised I’m not feeling very well so far. I start Affinitor in two days. Anyone been on either Exemestane and/or Affinitor?

Greg, I am sending huge hugs to both you and your wife and wish her continued improvement. And I just want to say to you: Thank You! You are an absolutely thoughtful, wonderful, caring man, and so appreciate you for posting about your wife and being on this group! Although your wife’s dx aren’t exactly the same as mine, reading your posts has helped me and brought me comfort in knowing I’m not alone. Hope it brings your wife a lol comfort too. Thank you Greg!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.




Last edited by Joanne S; 09-25-2012 at 12:40 PM.. Reason: typo
Joanne S is offline   Reply With Quote
Old 09-25-2012, 01:55 PM   #2
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: Breast Cancer Spread to Uterus

Dear Joanne

I am very sorry about this new and unexpected challenge. I know you will whip the beast back once again. We are all here for you.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 09-25-2012, 06:31 PM   #3
Mary Jo
Senior Member
 
Mary Jo's Avatar
 
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
Re: Breast Cancer Spread to Uterus

Hi Joanne....I, too, am so sorry for your recent news. I can only imagine how you feel. Please accept my cyber hugs and feel my love and prayers said for you. You are strong and like before, you will beat this.

Prayers and love.......
__________________
"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
Mary Jo is offline   Reply With Quote
Old 09-25-2012, 06:42 PM   #4
Ceesun
Senior Member
 
Ceesun's Avatar
 
Join Date: Jul 2006
Posts: 869
Re: Breast Cancer Spread to Uterus

Joanne, I am sorry to hear of this setback. My thoughts are with you. Where in the Detroit metro area do you live....message me, if you would like. I bet we are close, I live in Novi now. Ceesun
Ceesun is offline   Reply With Quote
Old 09-25-2012, 06:43 PM   #5
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Breast Cancer Spread to Uterus

Joanne,
I am really sorry this chapter opened in your book. May you feel well and be well.
Hugs
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.
KDR is offline   Reply With Quote
Old 09-25-2012, 07:25 PM   #6
caya
Senior Member
 
caya's Avatar
 
Join Date: Jan 2007
Location: Thornhill, Ontario Canada
Posts: 2,320
Re: Breast Cancer Spread to Uterus

Hi Joanne,

Add me to the list of those who are very sorry to hear of this unexpected develpment. I'm sure you are in expert care and they will have a plan for you soon.

Sending big hugs and prayers.

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!!
caya is offline   Reply With Quote
Old 09-25-2012, 07:36 PM   #7
MJsHusband
Senior Member
 
MJsHusband's Avatar
 
Join Date: Apr 2012
Posts: 87
Re: Breast Cancer Spread to Uterus

Joanne,
Thanks for your kind words. MJ does not like to visit these sites so I'm kind of on here for her to find out more information. When we first found out her breast cancer had spread to her endometrial region, I couldn't find anyone who had that happen. The research I did showed that it is very rare. It was kind of frustrating. The even wrongly diagnosed her with endometrial cancer in the beginning because it doesn't happen that often. After testing, they proved it to be mets from the original her2. She has inflammatory bc so it spreads very fast. When they thought it was endometrial cancer, they staged it at III2c, despite clear scans 3 months prior to that.
I'm sorry to read about what you are going through. It's all very scary. In fact, MJ had her 3-month PET/CT scans on Monday, Sept. 17. They called and left a voice mail on her cell the next day. She couldn't find the courage to listen to the message all week or weekend. She had surgery to have her right breast lifted to match her mastectomy breast yesterday. Somehow, between her grogginess from the general anesthesia and the Oxycontin, she was finally in a state of mind to listen to her voicemail. It was great news that she is NED. Believe me, I have so much anxiety in all of this as well. It's rough. Hang in there and keep positive thoughts.

~Greg
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

MJsHusband is offline   Reply With Quote
Old 09-25-2012, 08:12 PM   #8
'lizbeth
Senior Member
 
'lizbeth's Avatar
 
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
Re: Breast Cancer Spread to Uterus

JoanneS,

So sorry to hear your news. I just had an endometrial biopsy (negative) and a pelvic ultrasound (waiting to hear). Reading your story was rather alarming. Oh, I hate that about tests - they don't always reveal the cancer.

Such shocking news. I wish you NED with your treatment.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
'lizbeth is offline   Reply With Quote
Old 09-25-2012, 08:15 PM   #9
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: Breast Cancer Spread to Uterus

Hi Joanne, My Heart goes out to you also. Please know that you are in my prayers. I also live in MI and if there is anything at all I can do for you I would be more than willing to. Gods blessings to you and your family.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
Pray is offline   Reply With Quote
Old 09-25-2012, 09:15 PM   #10
sassy
Senior Member
 
sassy's Avatar
 
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
Images: 4
Re: Breast Cancer Spread to Uterus

Joanne,

I'm so sorry you are having to deal with this set back. My thoughts and prayers are with you and I know you will face this with strength. Please know we are here for you.
__________________
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.......
14YEARS NED!
sassy is offline   Reply With Quote
Old 09-25-2012, 10:35 PM   #11
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Breast Cancer Spread to Uterus

Dear Joanne S. Of course I recall you.

Just feel bad for you at this latest turn of events. Since Afinitor is so new, there are only a few here who have taken it. I think HER2NEWBIE's wife had it in trial.

Looks like they want to give you the latest, and too bad Herceptin won't be on your drug possibility list.

Sending you thoughts for a strong reponse and the strength and will to boot it back once again.
__________________
"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.
StephN is offline   Reply With Quote
Old 09-26-2012, 02:49 AM   #12
michka
Senior Member
 
michka's Avatar
 
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Re: Breast Cancer Spread to Uterus

Dear Joanne this is sad news. I understand it is a shock for you. And for us also. So unexpected after 5 years and so unusual. Your oncs are trying a good treatment. Stay strong. I am sending Hugs. 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
michka is offline   Reply With Quote
Old 09-26-2012, 02:59 AM   #13
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: Breast Cancer Spread to Uterus

Joanne! I am so bummed to read your newest and down right rotten news! How dare that cancer #*%@ invade your life again! Please keep us posted over the next few weeks on how things are going. This is a tough blow for you and for those of us who love you here on Her2Support. I will be praying for the miraculous!
__________________

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....

Laurel is offline   Reply With Quote
Old 09-26-2012, 04:05 AM   #14
Paula O
Senior Member
 
Paula O's Avatar
 
Join Date: Jul 2011
Posts: 954
Re: Breast Cancer Spread to Uterus

I'm so sorry about the mets and wishing you the very best.

((Hugs))
Paula
Paula O is offline   Reply With Quote
Old 09-26-2012, 05:51 AM   #15
Mandamoo
Senior Member
 
Mandamoo's Avatar
 
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: Breast Cancer Spread to Uterus

Joanne I am so sorry to hear your news - you must feel completely shocked!
I was on a Bolero trial and we think I had the everolimus/affinitor - blind trial so not certain.
I also took it with vinorelbine but I believe the most significant se's are mouth ulcers - more than 50% and quite severe - this was also my experience. I am happy to share by experience with the drug if you want more information. It seems to be very effective in hormone positive women.
Sending you love.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
Mandamoo is offline   Reply With Quote
Old 09-26-2012, 11:55 AM   #16
lkc Gumby
Senior Member
 
lkc Gumby's Avatar
 
Join Date: Feb 2006
Posts: 437
Re: Breast Cancer Spread to Uterus

Hi Joanne. I remember you as well, and am so sorry to hear the beast is back. I will keep you in my prayers that with your new tx, you will again be back to NED soon.
gentle hugs...
__________________
Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
lkc Gumby is offline   Reply With Quote
Old 09-26-2012, 08:08 PM   #17
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Re: Breast Cancer Spread to Uterus

Ceesun and Pray,
I am on the East side of the state, in Macomb Township.
Perhaps we will meet in person some day.
Pray, Where are you in Michigan?
Huge Hugs!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



Joanne S is offline   Reply With Quote
Old 09-26-2012, 08:16 PM   #18
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Re: Breast Cancer Spread to Uterus

Thank you ALL !!!!
I've been on the Exemestane for a couple of days now and doing much better on it than I was the first day. The Affinitor is being shipped to me and I should received it tomorrow. I am so soooo very fortunate and grateful that my RX coverage pays for most of it. When the pharmacy called to schedule the delivery, they told me it costs over $7,000 for a month supply. Yikes! Keeping my figures crossed and praying that these drugs work miracles for me.

I can't tell you how much your kind words and support means to me---I have an idea that you probably already know.

All of you close to my heart, thoughts and prayers. I am sooo lucky to have YOU! Huge hugs xxxxxxxxxxxx Jo
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



Joanne S is offline   Reply With Quote
Old 09-26-2012, 08:23 PM   #19
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Re: Breast Cancer Spread to Uterus

Greg, Thank you. So glad the phone call was great news!!!
Prayers for continued NED for MJ !!! Congrats and Bless You MJ!!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



Joanne S is offline   Reply With Quote
Old 09-26-2012, 10:03 PM   #20
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: Breast Cancer Spread to Uterus

Hi Joanne, First let me say what a wonderful, thoughtful, caring and loving woman you are!!!!! The way you carry yourself on this site you just jumped right back into supporting everyone here when you yourself has just taken a huge hit. I would consider it a great honor to meet you some day.

I live on the west side in Farmington I am about 50 min. from you. I also have a lot of family on the east side in Chesterfield, Sterling Hieghts, Macomb, and Roseville. Name the time and date! If there is anything at all I can do for you please don't hesitate to ask!

Maybe Ceesun if you are up to it we could all meet up together. Just let me know. I believe the last time we chatted you were in Dearborn? Novi is right next store to me. Gods blessings to you also. You are also always in my prayers.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
Pray is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 10:32 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter