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Old 09-16-2012, 09:21 AM   #1
Emelie B
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So thoughtful,

But of course it comes as no surprise that Sheila is once again, thinking of others. You blow me away. It is strange too, because you have been on my mind lately. I have read of your setbacks and I am so sorry all these road blocks keep recurring.

On the other side I am so happy for those of you who have found a treatment that is working and looking forward to more coming down the pipeline. Just hurry up, already!!

I am doing really well, considering I have just about made it thru that famous 6th month mark and am looking at #7. See, they’re just numbers and you can’t pin anything on them.

I have to say that other than the chipmunk cheeks and chin, most people have not a clue that I am ill. Fine with me, except when I get those looks from people when I get out of my car with the handicap sticker. “Well, she doesn’t look handicapped to me.” Know what I mean?

I have such a great support group; they are really, really nice people. They come once a week and we check all my meds, my pain levels at different times of the day/night, my appetite, (I can always eat) and anything else I need help with.
I take 100 milligrams of morphine 3 times a day and the liquid kind for fast acting any time the pain is really bad and it is not time for my 100 mg. I also take dexamethasone and lorazepam to complete my med cocktail. Oh, and Ibuprofen helps too. Who knew? I chart each day what and when because that is the only way I can stay on schedule. I never said I could remember anything anymore. There are Post-it’s all over my house!

So, combined with lovely lunches and dinners with Lori R., who is my hero for going into the trial at the University of Colo. re-decorating the guest bedroom and my husband’s office, keeping my garden in shape and starting to put it to bed for winter, I am a busy lady.

If I make this sound like a walk in the park, it is not. It is however; a lot easier to manage than I first thought, and I now have a new number on my pain scale. It is right up there with giving birth to my son who weighed 9lbs 12oz. It hurt a lot; this is just a different kind of hurt.

I still am so grateful that I gave myself, my family and my friends some quality time to share. No regrets ladies, no regrets.

Enjoy the beautiful fall weather everyone and thank you again for thinking of me Sheila, you are a remarkable women.

Best regards to all,
Emelie

__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 09-16-2012, 10:29 AM   #2
sarah
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Re: So thoughtful,

Sweet Emelie, we are all thinking of you. So sorry the pain is so bad and that they haven't found something stronger to help that.
Your attitude is amazing and I hope I have your grace when my time comes.
It's nice that you can enjoy eating and seeing your friends and family.
A cyber hug from afar
hugs and love
Sarah
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Old 09-16-2012, 11:07 AM   #3
Andrea Barnett Budin
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Re: So thoughtful,

Dearest Emelie, I am so glad I came upon your post. Your grace and the obvious beauty of your Spirit is -- breathtaking! You are a shero to be sure! You are truly awesome.

I wrote my Eulogy many yrs ago. It wasn't looking good for me. I wanted those left behind to know that I didn't want them to grieve. I wanted them to LIVE, with joy and gratitude. To marvel at the blueness of the sky and be kind to family, friends and strangers. I was okay with their celebrating my life if they chose, but I didn't want them to dwell on the sadness of my parting. Because -- I love them. Yet, I am still here!

I was (as it turns out) a gestinal diabetic. Maybe you were too. I gave birth to 9 lb 10 oz kids. Oh Lord. The only saving grace was, I was told, that the size of their heads and shoulders were normal. Grateful for the details. So I see we are bonded on multiple levels...

I am so deeply sorry, Emelie, that you are where you are. I can't quite grasp the details as I read your story below your name. The stopping and re-starting of Herceptin confuses me as I stuck with it for 10 yrs. What state or country are you in?

Gardening and nurturing are such generous acts. I am glad you are following these activities along with nice lunches and dinners and the love of family and friends. Sharing lovely meals takes us back to our roots, to the roots of our ancestors, in my view. Breaking bread as it were. A grand way to acknowledge our Oneness with All That Is and to offer our thanks for our bounty...

Perhaps you could defy the odds, as my beloved friend Sue did. She went in to hospice, and she returned home eventually. She kept asking, Why am I still here?! I don't understand. And I just rejoiced at having the extra time to talk with her and be a part of her life and have her embedded even more deeply in mine!

Miraculous things can occur. With all the loving energy you are generating, I can only imagine that the Universe is speeding like energy to you. I see you surrounded by a radiant white Light.

Back in the day, midst treatment and pain and too many pills to remember I too kept a strict log, somewhat as you describe. When I took a pill I made a check mark, and noted when I next was due (listed to the right). Lists and post-its are the ticket as I see it. Like the charts in hospitals, there are simply too many details to commit to memory. I was my own nurse. It seems I nursed myself back to health. Maybe you can. Stranger things have occurred. Spontaneous remissions do happen. You sound like an excellent candidate to me... I'm just saying. Rambling. As I am wont to do.

When I made my check mark I would also (as a back-up plan cause that's how neurotic and OCD I am) turn the pill bottle upside down. So if I reached for it for some inexplicable reason, I'd see and note, What is wrong with this picture? That was my "system"...

I hope you are laughing a lot. I taped a lot of silly shows I had never watched before that just made me smile and giggle. I went on PBS and found old Jackie Mason bits and was hysterical. So soothing... So I taped those epidsodes to return to, to laugh out loud once again.

Redecorating is a passionate activity! The creative juices flow and you literally create an environment others will enjoy! You channel divine energy in that way I believe! Seriously! (Just did my ugly hideous old old kitchen, so it's fresh in my head.) Now I delight as I stand -- never cook -- in my kitchen, and hang out there, as it is the very heart of the house, don't you think?

Thank you so very much, Emelie, for checking in with us. You are a fabulous role model for all of us to read about. My arms are around you. And I am holding you close and tight. I can't let go. I love your Spirit. You are all of us, and we are you. I am so touched my you.

And, so proud of you, dear Sister!

Much love,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-16-2012, 11:09 AM   #4
Ellie F
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Re: So thoughtful,

Dear Emelie
So happy to hear from you. Glad you are living life to the full and enjoying family and friends. Like Sarah it upsets me to think you are in pain and I hope they soon get this under control, I know we now have many, many options for pain control.
Love and hugs
Ellie
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Old 09-16-2012, 11:25 AM   #5
StephN
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Re: So thoughtful,

Dear Emilie -

You often come to mind as I come to this site and look for updates on everyone who is posting their ups and downs.

You took charge and the result has been very good (other than the pain level increasing at times). Your breathing was not mentioned this time, but must be stable if you can get things done and go out.

Sounds as though you go through your days in as normal a fashion as possible, which is the same as all of us whether in treatment or finished and recovering. Good for you to keep it up as long as possible. I am sure this attitude is contributing to blasting the "6 month" estimate all to heck! Thanksgiving - here she comes.

Rising above the situation is a wonderful attribute, and you have done that so very admirably.

Cyberhug coming your way.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-16-2012, 03:56 PM   #6
Mary Anne in TX
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Re: So thoughtful,

Emelie, your sharing of the most difficult time of your journey with BC has blessed me so. Your courage and "organizing" of your day to day activities and med taking, helps ease my fears. I pray that God continues to bless your days and nights with sweet dreams and sweet friends. Lots of love, ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 09-16-2012, 08:02 PM   #7
suzan w
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Re: So thoughtful,

Your courage and honesty is inspiring. Your family is lucky indeed to have you. We, here, are lucky to know you.
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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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Old 09-16-2012, 08:18 PM   #8
evergreen
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Re: So thoughtful,

You are a wonderful role model. My heart goes out to you....
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Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 09-16-2012, 08:49 PM   #9
Pray
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Re: So thoughtful,

Thank you Emelie for sharing once again! We appreciat you so!

God bless you sweet woman.
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-16-2012, 10:21 PM   #10
JennyB
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Re: So thoughtful,

Thank you Emelie for checking in I think of you often as my Aunt made similar decisions to you and her last year, yes year was beautiful for all of us too. The pain was a constant battle also.

I wish you all the best on your journey

Jenny
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 09-17-2012, 04:42 AM   #11
sarah
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Re: So thoughtful,

Dearest Emelie,
I cannot tell you what courage you inspire in me and I think all of us, I feel better knowing you and I am hopefully braver.
Andi, you expressed so eloquently what we all feel in our hearts.
What an amazing site this is. To know we are not alone and that we have this wonderful, caring family that is always with us in our difficult journey. I cannot express my gratitude and awe for knowing all of you and Emelie you are amazing. Thank you.
hugs and love
sarah
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Old 09-17-2012, 05:36 AM   #12
NEDenise
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Re: So thoughtful,

God Bless, Emilie...you're right, they're all just numbers. Praying that you continue to enjoy your days with family and friends on your terms. Your time in your garden sounds like it brings you great joy.
Sending a hug, and my thanks for sharing this journey with all of us...
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 09-17-2012, 12:35 PM   #13
chrisy
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Re: So thoughtful,

You've been on my mind a lot. Thank you for sharing.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 09-21-2012, 06:45 PM   #14
alicem
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Re: So thoughtful,

Emilie,

I can't say it any better than everyone else has already stated. Thank you for checking in and allowing your Her2 family to share in this personal time for you and your family. I wish you peace and control of your pain.

I agree with Steph, here's looking at a blessed Thanksgiving for you and and all your love.

~Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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Old 09-22-2012, 05:30 AM   #15
KsGal
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Re: So thoughtful,

Thank you for continuing to share your journey with us. I wish there was something more they could do for your pain, and I will pray that you will get relief from it. The fact that you are comparing to childbirth tells me it is just about unbearable. I hope that when the time comes that I need to make the same decision you have, I will have even half the strength you have shown. God bless you...
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 09-22-2012, 07:00 PM   #16
Laurel
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Re: So thoughtful,

Emelie,

I was so glad to read your post tonight. You have been on my mind so much and it is good to hear you are embracing your journey. I am also trying to put my gardens to bed and ready myself for the winter months. I feel a bit like a squirrel every autumn. I bet you know what I mean by that if you are a gardener.

Please pop in again when you are able and thank you for sharing your journey with us.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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