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Old 06-04-2014, 09:21 AM   #1
Jane's Husband Stephen
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Just Getting Started

Hi, my wife, Jane, was recently diagnosed with Her2+ breast cancer...left side. Her lymph nodes on her left side are also involved. They took 3, and 2 of them were mildly affected and 1 was more than what they like to see. She had her first neoadjuvant chemo treatment yesterday. She is doing TCH-P. The plan is 1 session every 3 weeks for 6 cycles. After that we were told it would be either a lumpectomy or masectomy and removal of the nodes on that side. Then radiation. She is 48 years old and we have no idea what we are in for really. Obviously she is scared. Just got a text that the nausea is starting. Are there any other folks on this protocal?
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Old 06-04-2014, 10:35 AM   #2
BonnieR
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Re: Just Getting Started

Stephen, glad you found us, sorry you had to. Of course she is scared, you too, probably
But we are here to help you We have all been where Jane is now. Getting dumped into cancer land without a road map It will begin to sort itself out and a routine will form, believe it or not! You get into the rhythm of this "new normal"
So far it looks like she is on a standard, proven protocol.
Side effects vary with each person and there are meds to counteract them. She should report these to her team so she can get them under control
I know that others here will be along to offer support
Keep the faith
__________________
Bonnie

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 06-04-2014, 11:27 AM   #3
crb
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Re: Just Getting Started

Hi Stephen~
I just finished my last of 6 TCHP chemo treatments last week. I have to say that each of the 6 times I felt completely different. Nausea and fatigue has been my primary side-effect, but not so much that it incapacitated me (I've not missed a day of work). Water, gatoraid, and naps were what has helped me the most.

Has she done the genetic testing? I would think that would definitely help with the surgery decision down the road. You've found the place to be for support and answers to questions from women who have "been there and are doing that"! Hang in there...it's one heck of a ride
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1/17/14 Day after 44th b-day, Got dx of 2 malignancies Rt breast; ER/PgR- HER2+
1/21/14 Biopsy of spot on left; normal
1/28/14 PET scan - CLEAR!
1/29/14 BRCA normal!
1/31/14 Sentinel node biopsy
2/5/14 Nodes are CLEAR! Stage I/IIa, N0, M0
2/13/14 Start Chemo, 6 rounds for 18 weeks prior to surgery
2/28/14 Port placed
3/6/14 Chemo Round 2
3/27/14 Chemo Round 3 (halfway done!)
4/11/14 u/s shows 2cm tumor about 2x5mm now!
4/17/14 Chemo Round 4
5/8/14 Chemo Round 5 and Daughter's Birthday :)
5/27/14 Last Chemo Party - Round 6
6/17 14 Herceptin only until next Feb.
6/20/14 BMX/Immediate reconstruction DONE
6/30/14 Path report back...NED!
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Old 06-04-2014, 11:33 AM   #4
Jane's Husband Stephen
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Re: Just Getting Started

Thanks for the responses! She has done the genetics test and both were negative.
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Old 06-04-2014, 11:33 AM   #5
crb
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Re: Just Getting Started

Oh...one more thing. If you Google HER2+, be careful - I cried for days on end after doing that. You have to look at dates of research out there. Most of it is outdated, prior to Herceptin, and now Perjetta. A friend of mine who went through this 6 months prior to me, told me "We have the worst cancer with the best treatment"

After my first round of chemo, I could no longer feel the lump, and then at the mid-chemo scan, the lump had almost completely disappeared. For me, the chemo is working to get rid of this bad-boy, so I have always kept that in mind during the icky feeling times of chemo, loosing my hair, etc.
__________________
1/17/14 Day after 44th b-day, Got dx of 2 malignancies Rt breast; ER/PgR- HER2+
1/21/14 Biopsy of spot on left; normal
1/28/14 PET scan - CLEAR!
1/29/14 BRCA normal!
1/31/14 Sentinel node biopsy
2/5/14 Nodes are CLEAR! Stage I/IIa, N0, M0
2/13/14 Start Chemo, 6 rounds for 18 weeks prior to surgery
2/28/14 Port placed
3/6/14 Chemo Round 2
3/27/14 Chemo Round 3 (halfway done!)
4/11/14 u/s shows 2cm tumor about 2x5mm now!
4/17/14 Chemo Round 4
5/8/14 Chemo Round 5 and Daughter's Birthday :)
5/27/14 Last Chemo Party - Round 6
6/17 14 Herceptin only until next Feb.
6/20/14 BMX/Immediate reconstruction DONE
6/30/14 Path report back...NED!
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Old 06-04-2014, 01:12 PM   #6
tricia keegan
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Re: Just Getting Started

Hi Stephen, its no picnic but all doable and there's usually a med to help counteract any side effects she may get, tell her to be sure to take the anti nausea if she feels she doesn't need them as its easier to prevent nausea than stop once it starts. Drinking water during and after the infusion helps too and tell her to report any issue's she's having but hopefully any side effects will be minimal.
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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 06-04-2014, 07:21 PM   #7
CameraKim
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Re: Just Getting Started

Stephen,
We were in your shoes last year. I'm 47 and had an er-/pr- Her2+...2cm tumor and two nodes. I did a similar treatment plan and I did pretty well with it. I'm a teacher and I was able to continue working half days throughout. Took one month off in the beginning just to process everything (and cry...a lot!). We made it through, one day at a time...and you will too! You sound like a great support for your wife, and that's just what she needs!

Good luck to you!

Kim
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Old 06-04-2014, 07:35 PM   #8
Jane's Husband Stephen
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Re: Just Getting Started

Thanks everybody!
Kim, Jane is in education also. She is an asst prinicipal at a primary school. Since it was so close to the end of the year she just took the rest of the year off. Are you still treating?
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Old 06-04-2014, 08:42 PM   #9
CameraKim
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Re: Just Getting Started

Stephen, I'm glad she'll be able to take some time this summer to regroup. For me, the beginning was the hardest. I did much better as I went through treatment and literally felt the tumor getting smaller. By the time chemo was finished my tumor had almost completely disappeared and there was no cancer left. You will get through this! I opted for a lumpectomy and then six weeks of radiation. I finished Herceptin this past December.

There have been great advances in medicines and treatments for us Her2 ladies. In fact Jane's treatment of TCH-P is the newest drug combo for our diagnosis. I had AC/TH just a year ago and wish I had been offered TCH-P instead. Our prognosis is much better than it used to be!
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Old 06-05-2014, 01:36 AM   #10
Adriana Mangus
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Re: Just Getting Started

Hi Stephen, First of all let me welcome you to our wonderful site where you will find a lot of information regarding the latest treatments for us ladies Her2+, an aggressive type of cancer with the best drugs available, in fact, most of us, especially my sisters who like myself are a true warriors and have battle this disease for a long, very long time and continue enjoying normal life just everyone else.

Glad to hear you are a health advocate for your wife, she will do just fine and with your help, her ride through chemo and all will be a much easier than for a lot of women who have no family, or family support during these trying times.

Cancer is a gift-- it changes you for the better, that's what cancer did to me, and for that I'm grateful, I never would have been able to discover and or experience the real love my fiends and family have for me and the complete happiness I have found in the smallest, tiniest things in life. I had never experienced such joy and peace in my life. I won't change/trade it for anything. I'm a walking miracle.

Please keep us posted on your wife's progress.

Adriana
__________________
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

Last edited by Adriana Mangus; 06-05-2014 at 01:50 AM..
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Old 06-05-2014, 02:43 AM   #11
Lien
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Re: Just Getting Started

Hi Stephen,

All the others have said valuable things. There's one thing I'd like to add: if the nausea continues or gets worse, please contact her medical team asap. There are different types of nausea meds, and some work, while some don't for individual patients. They can stop working too, so keep asking. Some of these meds are quite expensive, so most doctors try the cheaper ones first. This leads to unnecessary suffering.

And perhaps it is good to know that I was diagnosed in 2004 and am still cancer free.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 06-05-2014, 05:44 PM   #12
Coux92
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Re: Just Getting Started

Adriana has said so well what I have tried to convey to many over the past year....true words.
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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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Old 06-08-2014, 07:22 AM   #13
Jane's Husband Stephen
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Re: Just Getting Started

Thank you for all the comments and advice!!!! Jane is handling the nausea pretty well. However, the indigestion is getting to her bad. And she can't find anything that suits her thirst. Any suggestions?

Also, her doctor told her that she would probably have either a lumpectomy or masectomy after chemo and that he would more than likely do a total disection of the lymph nodes under her arm and then radiation. Are there any studies about NOT doing the lymph node removal at the time of surgery and just doing radiation? She really doesn't want that done if at all possible.
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Old 06-08-2014, 09:39 PM   #14
thinkpositive
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Re: Just Getting Started

I drank cranberry grape juice. for some reason, it was the only thing that appealed to me during treatment.

I had sentinal node biopsy (SNB)done at the time of my mastectomy. They came back negative so no nodes under my arms were removed. I had radiation after I healed from the surgery. With the SNB, I only had 4 nodes removed from my breast.
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Old 06-10-2014, 01:30 PM   #15
tricia keegan
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Re: Just Getting Started

She needs to ask for Nexium or something similar to take daily for the heartburn as the toxic meds can damage the oesophagus, I only found out afterwards and have a hiatal hernia and need to take Nexium every day since, sorry I can't help with your other question.
__________________
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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Old 06-10-2014, 07:31 PM   #16
sassy
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Re: Just Getting Started

Definitely get the Nexium. It should do the trick. Probably take daily through treatment.

Green tea seemed good to me. I couldn't drink anything carbonated-the carbonation burned my mouth.

Best to you both.
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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 07-15-2014, 07:39 AM   #17
Lisalou
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Re: Just Getting Started

Hi Jane's Husband
Doing full axillary node dissection after postive sentinel nodes is becoming controversial because outcomes are similar with or without. The following 2 articles are available on pubmed. There are a few others as well. Hope this is helpful.
Lisa
Orv Hetil. 2013 Dec 8;154(49):1934-42. doi: 10.1556/OH.2013.29765.
[Optimal treatment of the axilla after positive sentinel lymph node biopsy in early invasive breast cancer. Early results of the OTOASOR trial].

[Article in Hungarian]
Sávolt A1, Musonda P, Mátrai Z, Polgár C, Rényi-Vámos F, Rubovszky G, Kovács E, Sinkovics I, Udvarhelyi N, Török K, Kásler M, Péley G.
Author information


Abstract

in English, Hungarian
INTRODUCTION:

Sentinel lymph node biopsy alone has become an acceptable alternative to elective axillary lymph node dissection in patients with clinically node-negative early-stage breast cancer. Approximately 70 percent of the patients undergoing breast surgery develop side effects caused by the axillary lymph node dissection (axillary pain, shoulder stiffness, lymphedema and paresthesias).
AIM:

The current standard treatment is to perform completion axillary lymph node dissection in patients with positive sentinel lymph node biopsy. However, randomized clinical trials of axillary dissection versus axillary irradiation failed to show survival differences between the two types of axillary treatment. The National Institute of Oncology, Budapest conducted a single centre randomized clinical study. The OTOASOR (Optimal Treatment of the Axilla - Surgery or Radiotherapy) trial compares completion axillary lymph node dissection to axillary nodal irradiation in patients with sentinel lymph node-positive primary invasive breast cancer.
METHOD:

Patients with primary invasive breast cancer (clinically lymph node negative and less than or equal to 3 cm in size) were randomized before surgery for completion axillary lymph node dissection (arm A-standard treatment) or axillary nodal irradiation (arm B-investigational treatment). Sentinel lymph node biopsy was performed by the radio-guided method. The use of blue-dye was optional. Sentinel lymph nodes were investigated with serial sectioning at 0.5 mm levels by haematoxylin and eosin staining. In the investigational treatment arm patients received 50Gy axillary nodal irradiation instead of completion axillary lymph node dissection. Adjuvant treatment was recommended and patients were followed up according to the actual institutional guidelines.
RESULTS:

Between August 2002 and June 2009, 2106 patients were randomized for completion axillary lymph node dissection (1054 patients) or axillary nodal irradiation (1052 patients). The two arms were well balanced according to the majority of main prognostic factors. Sentinel lymph node was identified in 2073 patients (98.4%) and was positive in 526 patients (25.4%). Fifty-two sentinel lymph node-positive patients were excluded from the study (protocol violation, patient's preference). Out of the remaining 474 patients, 244 underwent completion axillary lymph node dissection and 230 received axillary nodal irradiation according to randomization. The mean length of follow-up to the first event and the mean total length of follow-up were 41.9 and 43.3 months, respectively, and there were no significant differences between the two arms. There was no significant difference in axillary recurrence between the two arms (0.82% in arm A and 1.3% in arm B). There was also no significant difference in terms of overall survival between the arms at the early stage follow-up.
CONCLUSIONS:

The authors conclude that after a mean follow-up of more than 40 months axillary nodal irradiation may control the disease in the axilla as effectively as completion axillary lymph node dissection and there was also no difference in terms of overall survival.


KEYWORDS:

completion axillary lymph node dissection; early breast cancer; komplettáló axillaris blokkdisszekció; korai emlőrák; loko-regionális besugárzás; positive sentinel lymph node; pozitÃ*v őrszemnyirokcsomó; regional nodal irradiation

PMID:24292111 [PubMed - indexed for MEDLINE]



Am Soc Clin Oncol Educ Book. 2013:61-5. doi: 10.1200/EdBook_AM.2013.33.61.
Which patients with sentinel node-positive breast cancer can avoid axillary dissection?

Ho AY1, Cody HS.
Author information


Abstract

Sentinel lymph node (SLN) biopsy is standard care for patients with cN0 breast cancer. An extensive literature, including seven randomized trials, has established that patients with negative SLN do not require axillary dissection (ALND), that axillary local recurrence after a negative SLN biopsy is rare, that disease-free and overall survival are unaffected by the addition of ALND to SLN biopsy, and that the morbidity of SLN biopsy is substantially less than that of ALND. It is now clear that many patients with positive SLN do not require ALND. In ACOSOG Z0011, 6-year locoregional control and survival were equivalent with versus without the performance of ALND in cT1-2N0 patients with ≤2 positive SLN treated by breast conservation with whole breast radiation therapy. A small but growing body of data now suggests that ALND may not be required for selected patients outside the Z0011 eligibility criteria, specifically those treated by mastectomy (without post-mastectomy radiation therapy), by partial breast irradiation, and by neoadjuvant chemotherapy. Looking ahead, the principal goals of axillary staging, prognostication, and local control will be accomplished by SLN biopsy for a substantial majority of patients, and the role of ALND will continue to diminish.
__________________
[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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Old 07-15-2014, 09:18 AM   #18
suzan w
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Re: Just Getting Started

for my constant thirst I drank soda water, the kind with natural flavor...no added sugar, color. La Croix is the brand I like (still!!!) can get it at Costco.
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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'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
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.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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