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Old 12-20-2014, 01:13 PM   #1
evlin75
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My daughter, Susan.

Passed Thursday the 18th of December. Diagnosed as invasive ductal her 2+++ in April 2003. Possibly been there 10 years and undiagnosed despite yearly mamograms.
Herceptin was just in clinical trials and not available for immediate access to her.
She did a vaccination trial at Johns Hopkins after it metastasized to her bones a couple years later. Then as many targeted drugs as possible as the cancer continued to advance to her cerebellum. Had surgery to remove a tennis ball sized growth - then WBR.
We researched and used what was available to us keep her as stable as possible. She had excellent doctors and a great oncologist.

She did have a supra clavicle enlarged lymph node that seemed to be a problem. They measured it for a while -then did cyber knife. But that did not work- just made it open and angry looking.
2 1/2 years ago lepto-meningeal was discovered from her MRI. The doctors said 6 weeks.
Again we researched and discovered some success with herceptin per intrathecal and ommaya. It seemed to hold it at bay with added chemo agents for a while. They were just checking the spinal fluid though the last couple years and suddenly it was evident checking the fluid was not sufficient to check the progression.

When the MRI was finally done we then were able to see massive progression that could no longer be controlled or stopped. Radiation was attempted to reduce the swelling in the brain and spinal cord -but to no avail.

So we lost my daughter. We gained two and a half years by the measures we took. Much of the time could not be called quality time however.
I post this information to help others to understand the need for MRIs to find progression in the brain and spinal cord.

I give everyone here my best wishes and I hope research will bring more hope and longevity to you all.

Ev
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Old 12-20-2014, 02:08 PM   #2
Ceesun
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Re: My daughter, Susan.

Hello Ev, my heartfelt sympathy to you on the passing of your daughter. This is such a dreadful disease and I am sure she was a strong young woman in many ways. Cathy
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Old 12-20-2014, 02:14 PM   #3
sassy
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Re: My daughter, Susan.

Ev,

My condolences to you on the loss of your beloved daughter. You have fought long and hard against this disease to find continuous effective treatment for Susan.

My thoughts and prayers are with you and Susan's family and friends.
__________________
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!
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Old 12-20-2014, 03:06 PM   #4
rhondalea
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Re: My daughter, Susan.

I am so very sorry to read this news about Susan.
__________________

2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 12-20-2014, 03:30 PM   #5
jaykay
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Re: My daughter, Susan.

I'm so sorry for your loss
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 12-20-2014, 03:46 PM   #6
forher
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Re: My daughter, Susan.

Thank you for sharing your story. Our hearts break to hear this. We are so sorry for your great loss.
__________________
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 12-20-2014, 05:09 PM   #7
Carol Ann
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Re: My daughter, Susan.

I am so very sorry.

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 12-20-2014, 09:13 PM   #8
Pamelamary
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Re: My daughter, Susan.

Sad news - condolences to you and all Susan's family and friends.
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 12-20-2014, 10:24 PM   #9
Nurse4u2day
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Posts: 439
Re: My daughter, Susan.

It saddens me to hear every time a life is taking from this disease,but what a wonderful inspiration I feel from you . During this grieving process you have taken the time to remind all of us the continued importance of being ones own advocate.
Again my condolences to your family.
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 12-20-2014, 11:26 PM   #10
StephN
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Location: Misty woods of WA State
Posts: 4,128
Re: My daughter, Susan.

Dear Ev -

You have been generous in sharing Susan's story here, and still so even in the final chapter. Thank you for sharing your love and your fight to keep your daughter with you as long as there may be a fighting chance.

The research goes on and each of us who does something a little different gives knowledge for those who follow.

Please find solace in what you have given us here, as one way to take away a little bit of the hurt you feel.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 12-21-2014, 03:51 AM   #11
sarah
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Re: My daughter, Susan.

Dearest Evlin, I am so sorry to hear about the passing of Susan. My heartfelt sympathies go out to you, your family and friends.
I am greatly touched that at this time of such sorrow you have taken the time to explain what treatments Susan undertook and the importance of MRIs. Such a thoughtful and inspiring post. Your caring, generous nature must have comforted and helped your daughter, Susan.
I offer a big cyber hug and love
Sarah
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Old 12-21-2014, 01:05 PM   #12
Dakini52
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Posts: 202
Re: My daughter, Susan.

Evlin, thank you for sharing your daughter's passing. It is always a little frustrating for me to hear of a person progressing so much before diagnosis. My thoughts are with you and your family. I hope the happy memories you have of your daughter will help you through your grief.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 12-21-2014, 02:21 PM   #13
lkc Gumby
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Re: My daughter, Susan.

I am sorry on the loss on your daughter, Ev. My mom died of BC on the 18 of Dec , 1. 5 yrs before I was dxed. It was a sad Christmas.
So very sorry.
__________________
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!!!
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Old 12-21-2014, 05:45 PM   #14
karina14
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Posts: 23
Re: My daughter, Susan.

Evelyn, my sincere condolences for loosing Susan. I am very sorry. She was a fighter. And thank you for sharing her story. She fought the disease for more than 10 years and more, the brain mets, that are so tricky and there is so little one can do for them. That shows courage.

I do hope doctors will do brain MRIs when you are diagnosed with mets (especially if you are her2+) and also to follow up progression. In Canada finding brain mets is not done proactively, only wen you have symptoms. That is how I discovered mine. The shock was huge when the MRI showed between 50-100. After wbr, they came back and did a second wbr. I know they will come back in few months and wbr will not be a solution again. Looking into trials for a systemic treatment that might help. I was lucky that I had every 3 months brain MRIs to verify if they grow again. Other oncologists might not do it.
__________________
2011/03 - dx IDC (15 weeks pregnant), Rx mastectomy, 1.5 cm, stage 1B, grade 3, ER-/PR-/HER2+, 1/20
2011/04 - started 3xFEC while pregnant (2 sessions)
2011/06 - daughter born healthy @36 weeks
2011/08 - 3xTaxotere & Herceptin, followed by 1 year of Herceptin, no rads
2013/09 - mets to liver, bones & lungs, started weekly Taxotere + Herceptin
2013/10 - stopped Taxotere after 4 weeks due to severe side effects, stay on weekly Herceptin, pleurodesis to right lung (previously 2 x thoracentesis)
2014/01 - Dec CT scan shows good liver response but progression to bones, Pamidronate plus Herceptin only
2014/01 - brain & spine MRI (symptomatic) shows very large number of mets in the brain, do urgent WBR (20Gy/5 fractions)

2014/02 - Herceptin, Perjeta, Abraxane, XGeva
2014/08 - stopped Abraxane, stayed on Herceptin, Perjeta, XGeva
2014/12 - brain mets progression, second round of WBR (25Gy/10 fractions), lungs stable, light activity in liver
2015/02 - progression in lungs (lymphangitic carcinomatosis), stop Herceptin / Perjeta, start TDM1
2015/07 - stable on the extra cranial disease (lungs, abdomen)
2015/07- brain MRI show tumors went to the leptomeningeal area and also new one started to grow deep brain, still on TDM1, not sure of next step ....
2015/08 - looking for help to get IT Herceptin in Canada






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Old 12-21-2014, 08:09 PM   #15
Lucy
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Re: My daughter, Susan.

I'm so sorry to hear of your loss. You'll be in my thoughts and prayers.
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Old 12-21-2014, 09:22 PM   #16
Pray
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Posts: 1,173
Re: My daughter, Susan.

I also am so sorry for the loss of your daughter. Please know you and your family are in my prayers. His Peace.
__________________
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
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Old 12-22-2014, 04:42 AM   #17
linzer
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Re: My daughter, Susan.

I am so sorry. My thoughts are with you and your family during this time. Linda
__________________
---------------
5/15/14 Dx IDC, right breast, 2 cm with 3 cm lymph node ER/PR- Her2+

6/11/14 Taxol / Herceptin / Perjeta

9/17/14 Lumpectomy, axillary lymph node dissection 3/9 nodes showed previous involvement but all clear due to THP!!

9/24/14 NED

10/8/14 AC x 4

12/16/14 rads x 20 WBRT only
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Old 12-22-2014, 09:27 PM   #18
KirisMum
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Re: My daughter, Susan.

Ev, I am so sorry. As a mother, my heart breaks for you.
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Old 12-22-2014, 11:13 PM   #19
Saygoon
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Posts: 158
Re: My daughter, Susan.

My heart and thoughts go out to you
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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Old 12-27-2014, 11:31 AM   #20
Coux92
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Location: Katonah,New York
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Re: My daughter, Susan.

I'm so sorry for your loss.
__________________
3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
06/09/14-Steriotactic BX left breast calcification-Benign
06/18/2014-completed one year of Herceptin!
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