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06-19-2010, 07:23 AM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Another Twist in the cancer
Still trying to regain my strength...seems it is at a much slower pace than I expected...my incisions are healing, but I am still having a few breathing problems...left lower lobe of my lung is partially collapsed and i have a hemidiaphragm...which may have occured from the surgery.....both make breathing a little struggle at times, and sleeping a pain in the a**....
I also have been having a problem with the left side of my neck swelling.....then after I am up, the swelling lessens but does not go away totally....saw the throat surgeon this week and seems I have developed lymphadema in the neck...rare but not unusual with all the lymph node involvement i have in the area. Now I am sleeping propped up on my back and the swelling is almost nill...just an FYI as i had never heard of this.
Wont know until scans if the Cytoxan and Methotroxate are helping...odd that I get nausea from the Cytoxan...i have never had nausea from any chemo before, so this is a new game.
Time to go strengthen the lungs with my spirometry toy....you are all in my thoughts and prayers even though i have been lax in posting...My son recently lost his home to a tornado here...the house that I raised my own children in, and had been in his Dad's family since 1897...he and his wife and children are safe but devastated....funny how fast our lives change!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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06-19-2010, 07:32 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Another Twist in the cancer
Oh so sorry to hear this. Thank goodness everyone is ok.
hugs and love
sarah
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06-19-2010, 07:53 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Another Twist in the cancer
Hi Sheila. So many twists, over time, in cancer and in life. The neck lymphadenopathy is something I've never heard of either. Thanks for attaching the photos. I still am caring for my parents' place and feel the connections to it, and am glad you have the memories even though I'm sorry to see what happened to it. I can imagine what it must have looked like in the area there at the time it was built originally, and what it would have been like for the first bride who lived there.
The Cytoxan gave me nausea with the 5-FU of CAF, and of course the nausea doesn't help a lot with making sure to drink enough fluid to avoid bladder difficulties. I suspect the difference in strength and slower feeling of recovery might be due to lower blood counts with Cytoxan too, but I don't know?
Hugs,
AlaskaAngel
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06-19-2010, 08:22 AM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Another Twist in the cancer
Sheila, thank you for lettings us know what is happening. I hope your SEs get back in line with feeling good. You are amazing.
The house pictures are unreal. Hard to believe it stood strong for so long and finally met it's match. Change is so hard.
Much love to you, 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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06-19-2010, 09:12 AM
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#5
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Re: Another Twist in the cancer
Dear Sheila,
I read your post and just kept saying "oh my" - I haven't been here an awhile and came back to check up on my friends and I find you with such devastation in your life and yet I don't detect (still) any bitterness or defeat at all - just some annoyance - and that with humor! You are still so "YOU" and that's why you are still here, still the amazing woman who was one of the first to jump in and help me here when I showed up 5 years ago!
My prayers are with you and your family - keep on moving forward with your usual lovely, amazing self!
Love to you, Donna
__________________
Donna in the Sierra Foothills of California
Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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06-19-2010, 09:53 AM
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#6
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Another Twist in the cancer
Sheila, I hope you regain your breathing strength real soon. Wow! those pictures remind me of the Wizard of Oz. Glad your family is ok and hope they can fix your family home back to its original beauty.
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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06-19-2010, 10:48 AM
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#7
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Another Twist in the cancer
Damn. When you get a minute, please update your treatment list. I can't remember what surgery you had. Any chance that time of day or proximity to food might influence Cytoxan nausea?
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06-19-2010, 10:51 AM
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#8
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Senior Member
Join Date: Jul 2007
Location: BridgeView IL
Posts: 116
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Re: Another Twist in the cancer
Sheila,
You are in my thoughts and prayers. Since joining HER2 you have continued to be a strength and inspiration to me.........Take Care and Keep the Faith.
Tami
__________________
Tamara Donnelly
Invasive Ductal Carcinoma 10/2006 HER2+
Lumpectomy
Adriamycin x 4/Cytoxin x 4/Taxol x 4
Herceptin x 17
Radiation: 5 1/2 weeks
Second Reoccurrance: August 2010
Right Breast Masectomy
12 doses of Taxol
1 yr of Herceptin
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06-19-2010, 10:57 AM
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#9
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Another Twist in the cancer
You and your family certainly have had your ups and downs. It never rains, but it pours------all at once.
I hope the storms of life calm down, so that all of you will have a more peaceful life someday.
I hope that your body will heal and that all the problems it is dealing with are temporary.
Take good care of yourself. I have my fingers crossed for your improvement.
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06-19-2010, 12:47 PM
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#10
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Another Twist in the cancer
Sheila, I had read of your son losing his home through your FB page and was just so relieved they were all okay but what a terrible thing to happen.
I also just wanted to send good thoughts and wishes for a big improvement soon, you're long overdue some better times 
__________________
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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06-19-2010, 12:51 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Another Twist in the cancer
I'm stomping my feet in frustration for all you are going through. You are way overdue for a break from health set backs and other life problems. I hope things improve for you soon. Can you arrange for some manual lymph drainage from a therapist for the lymphedema? I think that would be very helpful as well as relaxing massage like experience for you. Take good care of yourself. 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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06-19-2010, 06:09 PM
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#12
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Senior Member
Join Date: May 2009
Posts: 510
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Re: Another Twist in the cancer
I'm sorry to hear about your son's home but happy that everyone came out ok. Hoping and praying for better days ahead for you and your family.
Marcia
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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06-19-2010, 07:26 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Another Twist in the cancer
Hi Shelia, If you hear alot of noise it's because I'm stomping my feet along with Pam. It seems it's one thing after another for you...talk about Murphy's Law! My heart really goes out to you. It's time some good things start coming your way as it's long over do.
So sorry to hear about your breathing problems...I hope they get can get to the bottom of that and give you some relief. When its time for you scans I will be sending positive thoughts for good a report. I will be keeping you in my thoughts and prayers always for better days to come. Hang in there.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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06-19-2010, 11:18 PM
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#14
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Another Twist in the cancer
Sheila,
Thinking of you and sending lots of hugs and love your way. I am sorry you have to deal with so much.
How very frightful for your son and family, thank God they were not harmed. The house is beautiful and I hope they plan to restore it and continue the family
legacy.
Wishing you a speedy recovery!
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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06-20-2010, 11:53 AM
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#15
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Another Twist in the cancer
So sorry to hear of your son’s loss but glad everyone is OK. It seems god has put some natural disaster in every part of the world to shake up our lives.
I too have elevation of my right hemidiaphragm and scarring in the lower lobe caused by the sacrifice of my right phrenic nerve during the open biopsy of my neck. This is when my breathing problems started and there is nothing they can do to permanently fix this issue. The only thing that seems to help is when my pulmonologist puts me on a round of prednisone to reduce inflammation in my lungs. I don’t know if this would help you, but I thought I would mention it.
I think about you, my neck node sister, often and do hope the new cocktail works. Thanks for the information about neck lymphadema. I read recently, maybe even on this site, that they have a new laser treatment for lymphadema. I wonder if this would help you too????
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06-20-2010, 12:22 PM
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#16
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Another Twist in the cancer
Sheila,
It sounds like you have been very uncomfortable and going through a lot. Please know that we are thinking of you and wishing for a speed up on feeling better again. I was so sorry to hear the news about the house and grateful that your family is o.k.. Yes, life changes quickly and it doesn't seem to know or care that such changes (even when in the right direction) are stressful for us humans!
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06-20-2010, 01:13 PM
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#17
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: Another Twist in the cancer
Thanks for the update Shiela, it just seems unfair
but you are a trooper. I hope this mix works because
you deserve time off for good behavior. Hang in there
and take care.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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06-20-2010, 03:31 PM
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#18
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Another Twist in the cancer
Oh Sheila...Oy on the house and the twister. Double Oy on the lung and swelling. I'm sending some extra fortitude from my personal and special supply, direct from my heart to yours. Hang in there!!!!
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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06-21-2010, 06:50 AM
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#19
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Another Twist in the cancer
Sheila, I'm sending along my wishes for easier times too. Hugs.
Barb A.
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06-21-2010, 08:41 AM
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#20
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Another Twist in the cancer
Wow Sheila
sometimes I think you are trying to work your way cover to cover through the medical dictionary! Don't they get it? You are just too ALIVE!
Keep pushing on Sheila and as you know my best advice is always to BREATHE...so do that-ahow that spirometer who's boss!
Much much love my friend
chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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