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04-24-2012, 01:22 PM
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#1
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Last chance to talk me out of it (?)
Ladies,
I just wanted to give you all a chance to talk me out of having my ovaries removed on Thursday. I've gone back and forth for months on what to do. My cancer (bone mets) tucked tail and has run off from the lack of estrogen. Tumor markers are still high, but they've gone into a steady (but slow) decline ever since I started femara and zoladex. Both I, my husband, my father and my oncologist think that having my ovaries removed is the right choice. It will simplify treatment and treatment decisions in the future.
I did not get a chance to harvest eggs- it would have been too risky, and I have one beautiful son- which I am very grateful for. I also have two sisters who have both offered to help with surrogacy/egg donation if it comes to that.
Any last minute considerations out there? Any advice as far as lifting, driving, activity level, etc after the surgery? It will be laproscopic and robotic- taking the tubes and ovaries only. Anyone out there regret having the elective surgery? Thanks for all your wisdom in advance.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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04-24-2012, 01:38 PM
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#2
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Senior Member
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
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Re: Last chance to talk me out of it (?)
Typically recovery time is around 6 weeks for lifting activities. But walking is always recommended once you feel up for it. Even though it is a simple proceedure you are still having a major organ removed so there will be some discomfort and fatique from the surgery. I think you decision is a smart one, anything you can do to prevent the spread of the cancer is the safest route. The fact that you have your families support and your Dr's also speaks to you doing the right thing. I hope all goes well 
Suzanne
__________________
 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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04-24-2012, 02:48 PM
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#3
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Re: Last chance to talk me out of it (?)
Suzanne,
I just realized that you also had your implant infected and ultimately had to have it removed. Like you I had a mastectomy, reconstruction followed by radiation and then after all that- the darn thing got infected and we tried and tried to save it, but bad cellulitis forced me to have it removed.
How was recon the second time around? I think the radiation and scar tissue from everything has made my chest hard and tender. Its been almost a year since the infection. Was it hard to get a pocket for the implant established after all you've been through. Thanks for your words of wisdom on the surgery.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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04-24-2012, 05:00 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Last chance to talk me out of it (?)
I had the surgery you are contemplating - having the ovaries and tubes removed. I had it laproscopically too. It felt like I had done 1000 sit ups for a day or two but I heard that it is not as bad as that. I hurt a bit more than usual because I had my second child c-section (but had my third vaginally) and I had alot of scar tissue from that c section and the gynocologist removed that scar tissue - hence, more pain. But it was still a super easy recovery and I don't remember "no heavy lifting" although that might be the case. Your doctor will know.
Since your ovaries are already shutdown because of the Zoladex, and you are taking Femara, you won't feel any different hormonally.
Of course the decision is up to you cuz you can't put the ovaries back again. However, if pain and inconvenience is on your mind, that isn't an issue with this procedure. You will feel funky for a week and then its back to business again.
__________________
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"
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04-25-2012, 12:20 PM
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#5
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Senior Member
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
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Re: Last chance to talk me out of it (?)
Reconstruction has gone well, I did have some fluid accumulation and had to have a drain put in for about 5 weeks then it fell out by itself and I freaked out started to cry. We waited to see what happened and the darn thing healed on its own! I have had to have physical therapy to my shoulder. Being a physical therapist assistant it was hard to accept that I needed help to get through this but my shoulder is responding well and the boobies look great. Get my nipples done on the 18th of May.
__________________
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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04-25-2012, 08:28 PM
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#6
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Guest
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Re: Last chance to talk me out of it (?)
Kristin. I had my ovaries out 2 weeks ago and I am today just finishing off packing to move house! My husband had to most of the lifting of children for about 3 - 4 days and then all good. Just a little discomfort and pain but not long lived. I didn't want the risk of having my ovaries still for the rest of my life - which will be long!!
As we areoving my comp is packed and I can't remember either log in or password!!
It's jennyB from Australia.
Good luck with your decision xx
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04-26-2012, 11:02 AM
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#7
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Last chance to talk me out of it (?)
Hi Kristen. I guess you are going in for surgery today. I hope everything goes well ! I had one ovary taken out due to chocolate cyst 4 years ago and recovery was easy. Sending you prayers for a fast recovery !
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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04-26-2012, 01:10 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Last chance to talk me out of it (?)
Hi Kristen and I'm only seeing this now but wanted to tell you I had the same surgery in '06 and have not regretted it, recovery was super fast and it was the easiest op I ever had!
__________________
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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04-26-2012, 10:28 PM
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#9
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Senior Member
Join Date: Oct 2008
Posts: 41
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Re: Last chance to talk me out of it (?)
I also had it and am very, very happy I did. Little pain, big gain.
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04-27-2012, 01:21 PM
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#10
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Senior Member
Join Date: Aug 2011
Location: Virginia
Posts: 34
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Re: Last chance to talk me out of it (?)
Hi Kirsten,My doctor wants me to have the same surgery,but I keep putting it off.I am currently getting that awful zoladex shot, so painful.Let me know if you decide to do the surgery and how it goes.Pia
__________________
2003 age 34 pregnant with 2nd child Dx stage II
Er-/pr+ her2+++ grade 3 tumor 2.1cm 4 AC/4Taxol.No Herceptin .
2010 age 41 stage IV lung mets er+/pr+ her2+++ grade 3.On Herceptin only.
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04-27-2012, 05:58 PM
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#11
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Re: Last chance to talk me out of it (?)
Thanks everyone for all your encouragement and warm wishes. Surgery was a piece of cake! Pain is super minimal, I took the narcotics for a day, but now am on only high dose ibuprofen. I did go home the same day- so glad I had the surgery. They let me eat within a few hours of surgery, no nausea this time, and the incisions are tiny! Turns out it was not robotic, only laproscopic- the surgeon looked around inside and said everything looked normal and healthy. Did have some weird shoulder pain which resulted from the diaphragm nerve getting irritated by the air they used to inflate my abdomen- but they said that will go away.
So much easier than the mastectomy and reconstruction surgery.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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04-28-2012, 12:42 PM
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#12
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Last chance to talk me out of it (?)
Glad you found it so able Kristen and glad its all over for you!
__________________
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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04-28-2012, 06:26 PM
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#13
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Last chance to talk me out of it (?)
Kristin--
I'm so happy that they figured out your cancer is ER+ and that endocrine therapy is helping. That's wonderful for you.
I'm also glad your surgery went well.
Keep up the good work.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-30-2012, 08:05 AM
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#14
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Last chance to talk me out of it (?)
Kristen,
So glad to hear things went well! Just another bump in that long, long road you're traveling to old age, right!
Take good care of yourself as you heal.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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