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06-17-2014, 09:53 AM
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#1
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Member
Join Date: Jun 2014
Location: Hazleton, Pa
Posts: 8
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Newly diagnosed
Hi, I was diagnosed May 9, 2014. I am not sure how to enter all my information into my profile. Please help.I am brca2+. My mother had breast cancer when she was 53, she is now 86. She had a single mastectomy beck then. My daughter was diagnosed in 2010 at 32 yrs old, stage 4(her2-er+). That is when we were tested. My two daughters and I are positive, my son negative. Since the testing my other daughter and I are monitored with mammo sand MRI every six months. In sept. 2013 my mammo was clear. In April 2014 my MRI showed a small something. Ultrasound was inconclusive, so they did an MRI core biopsy. It was cancer, so on May 29th I had a double mastectomy with expanders For reconstruction. Pathology reports comes back her2+, progesterone+, the Nottingham histolgic score grade is 3, stage 1 and tumor size is 7mm. I meet with the oncologist on Monday. I'm assuming I will need chemo and herceptin a from what I have read. Will this delay my reconstruction. Also , will I need a port and can they place it in my chest since I have had a mastectomy. Sorry for all the questions, my head is just spinning. Thanks for your help.
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06-17-2014, 12:11 PM
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#2
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Senior Member
Join Date: Jan 2014
Location: South Florida
Posts: 97
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Re: Newly diagnosed
Hi there...sorry you have to join the club, but you found an amazing place to ask questions, vent, etc! The women here have been so helpful to me over the last 6 months. I believe there are a few others here that had cancer found after a prophylactic mastectomy, so they should be able to help with a few questions.
I found my cancer, and after biopsies, it was Her2+, so I did chemo before my surgery (which will be Friday). I did 6 rounds of TCHP and start today on the Herceptin only every 3 weeks until next February. I don't know if the chemo will delay your reconstruction, and I am assuming they can still do a port because I have one and will be having the bmx (port is about 2 inches below my collar bone).
You can edit your signature/profile by going under "Quick Links" up on the right. I would take a deep breath, and do NOT Google Her2+.....most of what you read is outdated research, prior to Herceptin and Perjetta! I cried for days when I did that, until I looked at the research dates and realized how old most of it was...
__________________
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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06-17-2014, 12:16 PM
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#3
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Member
Join Date: May 2014
Posts: 5
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Re: Newly diagnosed
You actually only asked one question! ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif) But yes, you typically receive a port when you have undergo chemotherapy. It’s not too bad of a procedure, about a 30-45 minute surgery under full anesthesia, and you’ll probably have it in you for a year (for the full duration of Herceptin). My wife has not been bothered by it for the last six months, sometimes it may itch. Regarding the surgery, it will probably seem like cake to you after finishing your major primary surgery. Based on your presented pathology, it does sounds like you will receive chemotherapy – which is good and very effective for Her2+ breast cancers! Also, way to catch it early and opting for mastectomy -- considering your strong family history of breast cancer (it sounds like a good idea to me!).
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06-17-2014, 03:53 PM
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#4
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Senior Member
Join Date: Jun 2014
Posts: 113
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Re: Newly diagnosed
I was dx'd the week after you. I agree that it's no fun to be "welcomed" to this club, but I've found the information and encouragement from this group to be invaluable.
I don't know whether you will *have* to get a port but I can share that I had one placed a week ago today and it wasn't a bad experience at all. I have never had a surgical procedure and was scared. It didn't hurt, and has healed nicely. I agree that it feels a bit different, and it's a bit itchy but otherwise fine. I did ask how many of these procedures my hospital did and they said 10-15 a day - so I felt like it would be done with expert hands and it was.
Good luck to you! I'm going for my second taxol tomorrow... long road ahead, but thankful there's a hopeful solution of sorts ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif)
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06-17-2014, 06:06 PM
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#5
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Newly diagnosed
I had chemo before bmx so my port was placed before surgery and reconstruction. My guess is reconstruction may wait for chemo due to decreased immune system thus increased chance of infection but don't bank on that since it all depends on the individual and response to chemo and their Dr. It will probably feel like forever but it will be for the best regardless and you want the best long term results.
I'm sure it's been said but my surgeon told me this isn't a sprint it's a marathon.
Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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06-17-2014, 06:12 PM
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#6
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Newly diagnosed
I've never had a port and never am going to have a port because I just do not want one. Everyone has their own opinions on the subject, just wanted to pop by and share...it's possible to "have it your way" Burger King or not, and cancer notwithstanding.
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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06-18-2014, 02:35 AM
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#7
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Newly diagnosed
I'm sorry you need to be here, but glad you found us. It seems you caught it early and should have an excellent shot at long term survival. Your mother seems to be doing well too. That's good news. You probably will get chemo and Herceptin and a port, which may well lead to postponement of reconstruction. But things may go more smoothly, and it seems like a good idea to share your thoughts about these things with your medical team. If reconstruction is very important to you, they may be able to find a way to do it sooner.
Your path report is very similar to mine, minus the BRCA status. Mine was never tested. When I was diagnosed, Herceptin was not available yet. I was one of the lucky ones; I'm ten years out from diagnosis.
So you have a really good shot at surviving this. Perhaps waiting a bit longer for the reconstruction is not so bad if you realize that having chemo and Herceptin will improve your chances of enjoying that perky look for much longer. You will find that there are more treatment options now, and that there are good meds for nausea etc. You do have to work with your docs, though, because they don't always find the optimal meds for you straight away. As soon as you have problems, mention them. There's a lot they can do to alleviate side effects. Keep asking questions!
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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06-18-2014, 02:10 PM
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#8
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Senior Member
Join Date: Feb 2014
Location: Minnesota
Posts: 184
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Re: Newly diagnosed
A port can be placed after BMX, mine was. I was advised to wait for reconstruction til out of chemo for 1 month, which will be in August and so looking forward to getting rid of theTEs. Good luck with treatment. Wishing you the best.
__________________
[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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06-18-2014, 06:40 PM
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#9
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Senior Member
Join Date: Nov 2010
Location: Doylestown, ohio
Posts: 334
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Re: Newly diagnosed
I could be wrong but I was told that anything under 1.5 cm doesn't always require chemo, u may not need it although with her 2 I would try for the herceptin if that is still the case..I'm sure someone will correct me if I am wrong. I did not have a port, it was never really discussed with me, I had no problems with the IV's but since they had to use the same arm I do have a lot of scar tissue, I also was told to wait for recon so that NOTHNG interfered with treatment. Good luck to you and your family.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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06-18-2014, 07:48 PM
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#10
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Senior Member
Join Date: Mar 2012
Posts: 199
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Re: Newly diagnosed
Anything over 5mm gets chemo. Ive seen women get chemo for smaller than this. Biology trumps stage with her 2
__________________
diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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06-23-2014, 10:44 PM
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#11
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Newly diagnosed
Think of Her2 this way when considering chemo/herceptin....
It's like being a "little bit pregnant. Size is not the issue with Her2 this has been established for many years now.
Her2 is aggressive and likes to travel, not my words,
"Dr. Salmon"
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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07-09-2014, 01:34 PM
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#12
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Member
Join Date: Jun 2014
Location: Hazleton, Pa
Posts: 8
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Re: Newly diagnosed
Well I got my port put in today. It really wasn't bad at all. Tomorrow I have my first treatment, I'm a little anxious...ok a lot anxious. But I'm not taking any chances with this her2+ thing. On another note, can anyone tell me if these tissue expanders are uncomfortable for them. Also they look so odd shaped. I hope the implants look and feel,a lot better.
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07-09-2014, 02:29 PM
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#13
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Senior Member
Join Date: Feb 2014
Location: California
Posts: 439
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Re: Newly diagnosed
I had my Bmx on June 11th with tissue expanders and it has taken me a month to get somewhat comfortable with them . During the Bmx they did put 100 cc in each one. Well yesterday was my first expansion and doc put 100 cc in each one again , which from what I hear isn't to common. I must say although not necessarily painful it is super duper uncomfortable! Hoping it gets better. But I still have 300 more cc to go. Nov/ dec can't come soon enough to get these things out . Best of luck with chemo. You got this and one day soon chemo will be just a memory for you as it is for me. Finished chemo in May of this year .
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]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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07-09-2014, 05:00 PM
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#14
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Senior Member
Join Date: Oct 2012
Posts: 646
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Re: Newly diagnosed
Tissue expanders were uncomfortable - like bowling balls on your chest. That being said, I had mine for a year before my exchange surgery (after chemo and radiation). They will look better once they start being filled. And yes, implants are more comfortable!
You'll be fine tomorrow - anticipation is worse than reality
Best
Janis
__________________
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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07-12-2014, 11:46 AM
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#15
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Member
Join Date: Jun 2014
Location: Hazleton, Pa
Posts: 8
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Re: Newly diagnosed
Well I had my first chemo treatment on Thursday and felt great. Felt really good the day after and then realized that I had no achy knees...realized it must be the steroids. Today, however, I felt ok and then got hit with some diarrhea. Feeling somewhat washed out right now. I hope that is the worst of it. I realize everyone is different but with each weekly treatment will the drugs build up and will the symptoms get worse?
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07-12-2014, 01:12 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Newly diagnosed
I opted for no port. Even though the chemo was very hard on my poor little veins I never wished that I had gone the port route. I also had no reconstruction and have always been happy with that choice as well. I felt that the less surgery was best for me. You did not mention what kind of chemo you are getting. I had Adriamycin/cytoxin and it was rough!!!
__________________
![](signaturepics/sigpic159_1.gif) 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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07-12-2014, 01:33 PM
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#17
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Member
Join Date: Jun 2014
Location: Hazleton, Pa
Posts: 8
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Re: Newly diagnosed
I am getting tazxel and herceptin weekly. First treatment was Thursday , felt really good first two days. Today a little sluggish and some diarrhea but still ok. I hope I continue to feel good.
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07-12-2014, 07:33 PM
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#18
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Senior Member
Join Date: Jun 2012
Posts: 129
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Re: Newly diagnosed
I asked my chemo nurse the exact same question. You can read my stats, and i can say I wasnt sorry to not do those last 2 TCH. Each treatment got just a little "worse"- diarrhea show up earlier, and the slight tiredness i felt at first became soul-crushing fatigue. Those few days were so worth it though because I'm here and healthy!! You will be too!
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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