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11-08-2008, 07:42 AM
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#1
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Senior Member
Join Date: Apr 2006
Posts: 148
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Should I be here?
Hi
I am an anomaly so far as Her2 positivity is concerned. My prognostic indicators were good (tiny tumour, grade 2, negative nodes, no vascular invasion, strongly ER/PR positive), the only bad one being IHC2+ which was confirmed as weakly FISH+ (2.71). Therefore, I received neither chemo nor herceptin.
For the third year running, I have been declared NED by mammogram and ultrasound, which is great.
My question is, do I belong here?
Mcgle (UK)
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11-08-2008, 03:49 PM
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#2
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Well, I believe the purpose of this board is for persons affected by HER2+ cancer to seek information and to share with each other. So it seems to me that you belong here. There are alot of "grey areas" in this disease so perhaps your situation can benefit others in the same unique spot. Maybe that is why you are meant to be here. But I guess only you can answer your question. I hope you stay.
__________________
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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11-08-2008, 04:11 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 476
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Of course, you belong here, just as I also belong here although I received neither chemo nor radiation. There are vast number of HER2 patients who are in our sub group and we need to share our experience with people similar to us.
There are myriads of people in various degree of involvement with this dreadful disease. We need to unite with all patients and try to find the best course of action.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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11-08-2008, 05:40 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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You belong here - absolutely - you are our Her2 sister. And you bring a great piece of treatment protocol with you too. There aren't many like you (actually no one is exactly like you).
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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11-08-2008, 10:03 PM
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#5
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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My wife, Nicola, passed away almost a year ago, and I still linger here because I've established friendships and grown to love you all. Do I 'belong' here? I probably don't belong anywhere, except on the "Island of Misfit Toys". Mcgargle, you definitely belong here, as much as I do. (keep in mind, though, lass, these colonials make a terrible meat pie and their toad-in-a-hole will make you want to head for the door, but they seem to be good people.) You belong here, gal.
__________________
For Nicola
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11-08-2008, 10:29 PM
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#6
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Cancer is cancer, no matter how you cut it! If you've been affected by cancer and want information, need support or want to offer support to others then you belong...
Sorry for the reason you're here, but you've found a great to be - welcome!
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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11-09-2008, 12:51 AM
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#7
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Senior Member
Join Date: Apr 2006
Posts: 148
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Thank you for your generous replies.
It's just that my tx was so 'light' compared with many of you (quadrantectomy, rads and tamoxifen), that sometimes I feel a bit of a fraud for frequenting this board.
On the other hand, because my circumstances are so rare, they may benefit those who come after. For example, I was beside myself when I learned I was FISH+, and that I was not to be given chemo or herceptin. Now (three years later), I see that was the right decision - well, so far ...
Bill, I am so sorry for your loss, but am glad you receive comfort from this group.
Mcgle (UK), who is a pretty average cook!
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11-09-2008, 05:04 PM
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#8
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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of course you belong here, you have experience you can share with the new people and i learn new stuff all the time which i like even though i'm 4 yrs ned.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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11-11-2008, 01:49 AM
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#9
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Senior Member
Join Date: Apr 2006
Posts: 148
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Thank you, Juanita.
Guess we never stop learning about this cra**y disease!
Mcgle (UK)
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11-11-2008, 05:36 AM
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#10
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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MCGLE
We are such a vast group of so many treatments...that si exactly why you belong here...you can help others and they can help you should you ever have any questions...this is the ONLY place to come for love, friendship and true understanding, with jokes and laughter mixed in. Welcome to our group....
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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11-11-2008, 11:27 AM
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#11
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Senior Member
Join Date: Apr 2006
Posts: 148
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Well done for getting to six years, Sheila. But you have had to go through so much to reach this milestone, and I haven't. That is what makes me question whether I belong here ...
Mcgle (UK)
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11-11-2008, 11:59 AM
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#12
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Member
Join Date: Jan 2007
Posts: 17
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I understand. I feel guilty not to have been as sick as most on this board.
However, I tend to read more than I post and
I feel sooooo lucky to have found my cancer early.
My husband is now facing Multiple Myeloma.
I have yet to find anything that compares with this board related to his cancer. Again, we are so very lucky it was found early. We are hoping to be at Dana Farber for a stem cell transplant for him soon!
I appreciate the folks who post here, that we all may find a little knowledge and confidence regarding own own situations. K
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11-12-2008, 10:53 AM
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#13
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Senior Member
Join Date: Apr 2006
Posts: 148
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Yes, Karen - we travel unchartered terrain.
I hope your husband makes a full recovery.
Mcgle (UK)
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11-12-2008, 07:56 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Diversity
I have thought about this question too, Mcgle. There are many people who lurk and listen, and that perspectives from all stages are valuable. You also are not in the USA and there are lots of people listening here for whom the choices ARE not the same as those in the USA -- Some better and some not, but having that international information from someone who is dealing with different circumstances and options can mean an awful lot to those who share that situation. I think of it sometimes because some people who are close to cancer centers may give advice to others based on that access to care, whereas from here I know what a cancer patient in many areas of Alaska faces and it is a very different set of circumstances and choices. We all have different pieces of the puzzle that we can use in putting it together.
AlaskaAngel
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11-12-2008, 08:09 PM
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#15
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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I wished I had stayed on this board 5 years ago - I think I had registered and got on the board for a very brief moment. It might not have made any difference. But from reading the stories I might have been able to detect my recurrence much earlier. (Instead of blindly believing my doctor and the scan technicians.)
__________________
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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11-13-2008, 09:39 AM
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#16
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Senior Member
Join Date: Apr 2006
Posts: 148
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Thanks again for your input, ladies.
Cost always seems to be an issue here in the UK (most people receive NHS treatment).
But I did seriously question my dx upon learning I was FISH+, and only now accept that my light tx was probably correct.
This is indeed a grey area.
Mcgle (UK)
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11-15-2008, 05:21 PM
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#17
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Member
Join Date: Jan 2007
Posts: 17
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Thank you. We are praying that they can get him into remission. No cure for myeloma.
Still, we are very lucky to be here searching for answers and cures.
Take care. K
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