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Old 07-23-2014, 06:33 PM   #1
Mary Jo
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Wanting to encourage the new her2 sisters.

Hello to all my her2 "sisters!" It has been a long time since I visited the her2 site and I remember when I couldn't stay away. I remember back when I was so very scared. The initial diagnosis...(June 2005) - Mastectomy number 1 (July 2005) - chemo begins (August 2005) - Herceptin starts (Oct. 2005) - Chemo ends (Nov. 2005) - Radiation begins (Dec. 2005) - Radiation ends (Feb. 2006) - Prophylactic mastectomy other breast (March 2006) - Herceptin ends - (October 2006) - Delayed Bilateral DIEP - (June 2008). Ey yi yi - FEAR?......will it ever end?......will I ever be "normal" again?.......will it come back?.......will I ever not think of cancer?........will I ever trust my body again?..........and on and on and on with the questions and fears.
Now......today.......July 23, 2014......It will be 9 years since my first mastectomy on July 28, 2014. Here are the answers to my questions above.....Fear? - Yes, I had much fear. It took time but the fear leaves as you one day realize God gave you today to live. I decided to live in the "today." I didn't know my tomorrow any more than anyone else did and I surely didn't want to waste "today" on worrying about tomorrow. It took a few years to get to that place, but I did. WILL IT EVER END? Oh how I remember those feelings of everyday being something with cancer....whether it was chemo - radiation - side effects - appointments - whatever, you live it day in and day out and wonder if it will ever end. It does for some of us and in all honesty those days are a vague memory for me. The positives that I took away are what is with me still today. WILL I EVER BE 'NORMAL' AGAIN? - My answer in a nut shell.....oh Lord, I hope I never return to the "normal" before cancer. I have learned so much....God has taught me so much. He has taught me the truly important things in life. I can honestly say that breast cancer was a blessing in my life. That very, very, very tough trial.......helped me get to that place I needed to be. WILL IT COME BACK? I think I thought about recurrence the most in the first 3 years. It was a tough time for me. Each ache and pain scared me into thinking "what if." I never was that kind of person before breast cancer. I was healthy and never sick. I trusted my body completely. Breast cancer showed me that yes, it can happen to you. So recurrence seemed very real to me and I use to think....'well it happened to you once....why not again?' I'm over that thinking now and realize that yes, I may get cancer again....but I also may get a lot of things. No one gets out of this life alive (as it were) - so worrying about recurrence I left by the roadside. :-) WILL I EVER NOT THINK OF CANCER? Well, I think about it.....how can you not. It seems everyone has it. But I don't think about it for me personally anymore. I know it's always a possibility but I'd rather spend my energy trying to encourage and help others and let that go. WILL I EVER TRUST MY BODY AGAIN? - It took a while but I do. I try to take care of myself but realize that I really have no control over my body. I couldn't control the first breast cancer and can't control whatever else will happen. One day at a time.
I was diagnosed at 45 with stage 2B her2/neu positive breast cancer. I now am 54....have 4 grandkids and feel incredibly blessed and changed. All because of breast cancer.
I pray I encouraged and helped someone here.
"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

15Years NED

<>< Romans 8:28
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Old 07-23-2014, 07:14 PM   #2
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Re: Wanting to encourage the new her2 sisters.

Mary Jo,
I'm glad you have come back to this site with these wonderful words. I don't know you nor you me but these words ring true for so many.
I'm still going through this journey and as you can see from my Signature despite I'm still in the mist of this crap my Doctor has declared me Cancer Free ,she did not say NED she said cancer free and that is how I will live my life. I don't know if my cancer will ever return but I also don't know what tomorrow will bring so for today I live cancer free. I still have rads and infusions and more surgeries but no more cancer.
Thank you so much for this post.
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
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.
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Old 07-23-2014, 07:28 PM   #3
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Re: Wanting to encourage the new her2 sisters.

Mary Jo thanks for that wonderful post. Not only are you encouraging the new ladies here but giving all of us a reminder of where we have been, what we have been through, how we did it, and how we move forward. Your words ring very true. Lois
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
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
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Old 07-23-2014, 10:42 PM   #4
suzan w
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Re: Wanting to encourage the new her2 sisters.

Hi Mary Jo! How nice to hear from you!!! I, too, am a member of the 9 year club. We have navigated this site, together across cyber-space!! Cancer has also thought me to live in "today". You put it very well, thanks!!! Congrats on 9 years. XOX Suzan
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
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Old 07-23-2014, 10:55 PM   #5
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Re: Wanting to encourage the new her2 sisters.

I just passed my 2 year mark and apparently needed to hear your words, very encouraging. Fear still grips me from time to time but I don't stay in it. Often times when I hear myself say "I have cancer" (usually to someone else besides myself) it just doesn't seem real. As if I still can't believe that I am living with this disease. I am encouraged by the ladies here with many years behind them and I know that I too will reach a time that fear, doubt, etc will fade and total acceptance will be my new normal. Yes I agree cancer has taught me a lot! A lot of powerful and wonderful things. A new appreciation for even the smallest of moments and things they were soooo important in the past well, they just aren't anymore. In short - loving life and I hoping it will be a long one! You long timers are my heroes!
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 07-24-2014, 08:11 AM   #6
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Re: Wanting to encourage the new her2 sisters.

Offering experience, strength and hope is what a support group is all about. Thank you, Mary Jo.
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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Old 07-24-2014, 05:16 PM   #7
tricia keegan
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Re: Wanting to encourage the new her2 sisters.

MaryJo, I've just celebrated nine years cancer free and still appreciate every day I get and like to offer support to all new members here and also on the susangkomen forums, so glad to still be here to spread the word that her2+ is not always bad news!
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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Old 07-25-2014, 08:30 AM   #8
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Re: Wanting to encourage the new her2 sisters.

Mary Jo, a great post. I know we all wish we could speed up the time for newbies to realize they might just live and live a long happy life but everyone gets there in their own time.
A really great post for newbies and even oldies to read
congrats on the grandchildren
hugs and love
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Old 07-25-2014, 12:07 PM   #9
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Re: Wanting to encourage the new her2 sisters.

Hi thank you for this encouraging message : ) I was diagnosed one year ago this month. I am about complete w/ treatments. Herceptin goes through Sept. and I am just beginning w/ Arimidex. Right now the most bothersome things for me are the taste buds still out of whack ...not able to enjoy eating...and neuropathy in my fingers, toes/feet...fatigue...well I am managing : ) I wonder if food will ever be enjoyable and I will have feeling return to my extremites? Thank you for any thoughts : )
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Old 07-25-2014, 01:39 PM   #10
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Posts: 49
Re: Wanting to encourage the new her2 sisters.

Thanks for coming back and sharing with us. I am a newbie, The insight from those of you that have been through this is so valuable!
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 07-25-2014, 04:01 PM   #11
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Re: Wanting to encourage the new her2 sisters.

Good seeing you MaryJo! And thanks so much for posting that. You certainly spoke for me
It's a shared experience, this cancer trip. And we take it together from various vantage points
Keep the faith

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 07-28-2014, 02:23 PM   #12
lkc Gumby
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Posts: 435
Re: Wanting to encourage the new her2 sisters.

Hi There Mary Jo, Great post! I Remember you well as my Dx was one mo. befrore you! I am so so happy you are well and enjoying your family.
Life is so wonderful beyond BC!! Enjoy .

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
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
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Old 07-28-2014, 03:32 PM   #13
Adriana Mangus
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Join Date: May 2006
Location: California
Posts: 668
Re: Wanting to encourage the new her2 sisters.

Mary Jo!!!!!!!!!

Glad to hear from you!

Don't be a stranger, even if you are cured we need you on the site, you have been through this before and we need breast cancer survivors like you, to encourage and provide their own input during the chemo treatments, medical appointments, diet, side effects from chemo and all that jazz to our new sisters.

A lot of us continue visiting and helping others with our own experiences during this ordeal. There is no cure for some of us, but treatments for stage IV cancer is better with new drugs and the continued studies for better treatments for breast cancer.

Hope you are enjoying the weather in Wisconsin, is beautiful this time of the year, my husband and I visited this area a few years ago and stayed at Lake Geneva at the original Playboy mansion. We had a great time.

So happy for you Mary Jo. May God provide you with the energy you need to take care of yourself and now enjoy your grandchildren, you are truly blessed. I totally agree with you - the diagnosis of breast cancer has made me a better and happier person, couldn't be more grateful to God for it, it has made appreciate Life in all of its splendor and that's something not too many people will ever be able to enjoy!!!

Grateful for everyday!

Sending you a BIG cyber HUG.

1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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