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11-28-2012, 08:11 AM
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#1
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Just sharing......
Good Morning my special her2 friends.......
I check in on my her2 friends often but don't post much anymore. Although, that being said, my not posting much surely doesn't mean I don't want to encourage or care about you all. You are all a very special part of my life and always will be.
I was diagnosed in June of 2005 but didn't become a part of the board until 2006. So many of you ....Becky...Chrisy....Flori....Sheila......Andi... ..Lisa......Bill.....and I could go on and on and on are often in my heart and I wonder how you are. I check.
I am doing fine as are many of my sisters. Lots of you are struggling and many of my her2 friends have passed on. This morning as I think on our sister, Sheila, I just wanted to share that although so many of us are doing great, many of us are struggling and WAY too many are losing their battle with breast cancer. In all honesty, I hate using the phrase "losing the battle" because in my most humble opinion, the battle is the Lord's. With Him by your side you lose nothing and this life will end for all of us. Of one thing or another. However, with faith in your Savior, it never really ends. Eternity awaits. BUT, that being said, it doesn't mean that those of us here on earth don't have heavy hearts and cry over the sadness of many and their struggles.
I'm not sure why I posted....maybe I'm speaking what many of our hearts are thinking today. Over the years, many of my "friends" have passed and it's always a reminder to me that life is precious and we should never forget to let those in our lives know how special they are to us......
You are all special to me.
Peace to my sisters and brothers......
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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11-28-2012, 08:27 AM
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#2
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Just sharing......
Beautifully stated Mary Jo. I admire the faith in God that you often express. Glad you are doing well! (I took a trip to Lourdes a couple of years ago and it gave me a sense of joy and peace I hold onto.) Ceesun
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11-28-2012, 09:30 AM
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#3
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Senior Member
Join Date: May 2007
Posts: 236
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Re: Just sharing......
Thank you for "Just sharing" these beautiful sentiments Mary Jo for all of us here on Her2 support.
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11-28-2012, 05:43 PM
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#4
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Just sharing......
Nicely said, Mary Jo, and I think it is important to all of us and especially to the newly diagnosed that there ARE many more members of Her2Support who are living and thriving post treatment with no recurrences even among our Stage IIIc gals.
We have lost too many members lately it seems, but this disease does not win all the "battles." To our newcomers I say, "please try to see that we win more than we lose here." Stay and know you will grow to love those who post and become "real" to you and dear to your heart. The pain is bittersweet and the potential for heartache is part and parcel with being a member here on Her2Support. I think you will discover it is worth every tear you may shed to laugh, rejoice, cheer on, and pray fervently with the members here.
I count myself blessed to have known Sheila Rawlings as well as every member who posts here.
__________________
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....
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11-28-2012, 06:22 PM
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#5
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: Just sharing......
Hi Mary Jo. This is the other Mary Jo. I don't post much either but, like you, I check in regularly. I was diagnosed in 2005 so it's been 6 years since my treatment ended. Sometimes the painful time I went through feels so distant that I barely think about it. Other times I remember that life is fragile. (I don't even want to crush an ant any more.) As a survivor, I know I have to make the most of every second. I have been privileged to help my friend through her pancreatic cancer fight. She's finishing an immunotherapy clinical trial and has been NED for more than a year. I pray that Her2, pancreatic, ovarian and every other cancer will be eliminated SOON!
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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11-28-2012, 06:36 PM
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#6
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Senior Member
Join Date: Mar 2010
Location: Thornhill Ontario
Canada
Posts: 266
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Re: Just sharing......
Mary Jo thanks for your post today. I think we are all in a very reflective mood right now with all that has been going on. Thinking of all our friends here on the board and sending love and support. Laurel you are correct there will be laughter, tears, and rejoicing on this thread. Love to all.
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara
November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2
January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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11-28-2012, 07:24 PM
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#7
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Just sharing......
MaryJo, thank you for your beautiful words, many times I feel the same.
Love to you,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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11-28-2012, 07:44 PM
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#8
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Just sharing......
Mary Jo,
Thank you for post. It came at an important time. It has been difficult on the site but Laurel is certainly right about the tears and laughter. We are a bit of a unique group of folks- tough, fierce, funny, sarcastic........so many wonderful adjectives come to mind when I am in the company of our members or simply think of them- which I do all the time.
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11-28-2012, 07:57 PM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Just sharing......
Karen, I couldn't agree with you more. We are a unique "breed" as it were. Haha! We are "sisters" and "brothers," who share a common bond. Breast cancer. Breast cancer has taught me much......much of it good. In all honesty, I wouldn't change a thing about my life. It's all been for a reason and I am a better woman because of it. However, even though I wouldn't change a day of it, I would change the fact that many struggle, suffer and die because of the horrific disease. That makes me sad. Missing those we love and cherish...that makes me sad! So, we hang onto one another and cherish each day we are given. We support one another....encourage one another....build each other up......cry together.....laugh together and never forget what brought us here. Never forget that our lives are a gift and a gift we should use to bring hope to a hurting world.
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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11-28-2012, 08:15 PM
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#10
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Just sharing......
yes, Mary Jo.......perfectly said.
i had a "moment' last night that was tough. i started crying thinking about individuals I had met at SABCS who I could not/would not see again and other individuals and their families who are suffering so much right now........and at the same time how I feel so at home and free when I go to the conference and how much I laugh (and how much I want to slip into Macy's one ore time). I remember last year with one of the members (and i told her this)........"my God- you could be a comedy writer". And all of her sarcasm and jokes were in the midst of much pain. She was so damn funny. And it is a strange thing to be crying and laughing at the same time and feel so close. And, yes, this is not your average group of individuals. So much pain and so much joy.......at the same time. I thought again about this today as I sat in a faculty meeting. The outright pettiness and "point making' were difficult for me and I came close to leaning over to someone to say "once you have had cancer treatment......... all of this seems particularly ridiculous". But, alas, I quietly graded papers (on the sly) and realized that the majority of folks in the room did not yet understand. I am forever changed.
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11-28-2012, 08:43 PM
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#11
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Senior Member
Join Date: Oct 2005
Posts: 215
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Re: Just sharing......
As always MaryJo you speak from the heart, as most of us do. I have never had a meltdown, but today I came very close to it. Just thinking of all the sisters and brothers who have passed on. Have my own issues right now, but try not to think about them. My heart is sore right now. Blessings to each and everyone of us, Jeanette
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11-28-2012, 09:40 PM
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#12
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Just sharing......
Mary Jo, Your post is just what this site needed right now. Thank you. Sheila taught me how not to be mad about this cancer stuff. I clung to that phase way to long. I have been forever blessed by Sheila she has literally changed my life for the better along with this site. Here is where my hope began. Thank you everyone and I do thank everyone. Each and every one of us matters and has a purpose here.
__________________
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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11-29-2012, 01:11 AM
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#13
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Just sharing......
Great post -Thanks much.
__________________
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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11-29-2012, 02:01 AM
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#14
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Just sharing......
Indeed this is a very special group with very special people... Thanks, y'al.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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11-29-2012, 04:15 PM
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#15
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Just sharing......
Love your post and I echo your thoughts too MaryJo and feel sad we've lost so many here in this our own her2 family, I've lost other friends with BC who had a better prognosis than I too which makes me sad but I've forever grateful to all here who made me realise her2+ was not a death sentence as was stated on every other site I visited when diagnosed. I've met so many wonderful intelligent people on this site and Sheila is one I'm especially close to and is in my thoughts and prayers daily. xx
__________________
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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11-29-2012, 06:35 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Just sharing......
Mary Jo,
Thank you for checking in and sharing, just because. Words from the heart are awe inspiring and yours just gave me goose bumps. An old pastor friend of mine once advised, "Never resist an impulse to be generous". You were generous with your heartfelt words and how grateful I am.
Love and Hugs,
Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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