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02-03-2010, 09:55 AM
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#1
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Advice please-possible bone marrow mets
I would really appreciate any advice as am feeling very down and frightened AGAIN. I have been on 3 weekly herceptin alone since August 2009 after completion of 6 rounds of taxotere and herceptin for mets in the contra lateral lymph nodes. Initially my platelets, white cell and red cell count was low but gradually showed an upward trend. Before Christmas my platelets dropped and are now around 110-120. My haemoglobin and white cell count continue to improve which feels very odd.
My onc has now scheduled me for a bone marrow aspirate next week as he thinks I have mets in my bone marrow.
Has anyone had this happen to them??
If mets are confirmed he is planning to give me xeloda and herceptin or xeloda and tykerb if they are still her 2 positive.
I have also just started to get very sore eyes and wondered if this was connected to anything?
Thanks
Ellie
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02-03-2010, 11:13 AM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Advice please-possible bone marrow mets
Hi Ellie -
Did you post someplace that you were having a bone or CT scan?? Is that where the info for the aspirate is coming from?
Are you having any pain? Just wondered what has led up to this screening.
You know we will all hope and pray for the best outcome and your fears to be put down.
__________________
"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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02-03-2010, 11:40 AM
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#3
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Advice please-possible bone marrow mets
Hi Steph
Thanks for replying,i'm having a bit of a melt down day today.The only reason I am having an aspirate is due to my platelets staying around 110 and not picking up. I have no bone pain.My onc thinks that cancer cells in my bone marrow may be destroying the platelets. I asked why they only destroyed them and not my white or red cells which are picking up nicely. he said that platelets are more vulnerable.
Ellie
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02-03-2010, 01:22 PM
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#4
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Advice please-possible bone marrow mets
Ellie,
Thinking of you. Hope you find out something soon.
Amelia
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02-03-2010, 02:53 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Advice please-possible bone marrow mets
Ellie, I had sore eyes right through chemo and herceptin also.
I don't have advice but wanted to send good wishes for benign results 
__________________
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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02-03-2010, 03:03 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Advice please-possible bone marrow mets
Ellie,
I'm praying for a good test result.
__________________
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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02-03-2010, 03:09 PM
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#7
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Advice please-possible bone marrow mets
Ellie, I am thinking about you and shall also be praying that you have good news after your bone test.
Barb A.
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02-04-2010, 06:14 AM
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#8
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Advice please-possible bone marrow mets
Ellie,
I am so sorry to hear that you must bear the burden of more tests.
Take heart.....I doubt that the sore eyes are a major concern. After multiple years on Herceptin, I continue to get the red eyes, drippy nose syndrome.
I don't have first hand experience with bone mets that I can share. Please keep us posted. I am certain you will post with an all clear!!!
Lots of Love....Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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02-04-2010, 09:10 AM
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#9
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: Advice please-possible bone marrow mets
Ellie,
Adding my prayers and good wishes for clean results for the bone test!
hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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02-04-2010, 11:46 AM
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#10
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Advice please-possible bone marrow mets
I have my fingers crossed for you.
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02-04-2010, 04:04 PM
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#11
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Advice please-possible bone marrow mets
Oh, Ellie, this just sucks! Seriously! I will pray there is another explanation for the anemic platelets. Be careful with Fish oil and vit E as you do not want to get a bleed going. Any nosebleeds? I found a good b-complex helpful with my slow to recover platelets post chemo.
When is your aspiration scheduled? We want to cover you with prayer that day. Come to think of it, my counts did not fully rebound until after I completed Herceptin.
You hang in there, Ellie Girl!
__________________
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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02-04-2010, 05:20 PM
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#12
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Advice please-possible bone marrow mets
Ellie,
Praying that the results are B9.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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02-05-2010, 05:33 AM
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#13
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Advice please-possible bone marrow mets
Thank you for your replies. I am due to have the procedure on Tuesday at 2pm so prayers from my sisters would be gratefully received.
Laurel- have not had any nosebleeds but will take your advice on a good B complex as hadn't realised that this may have affected my platelets.
Also just found out that due to a mistake I have been having a much higher dose of herceptin than recommended for my body weight!! Don't mind if it sorts out the cancer cells but hope it hasn't messed my blood up.
Love Ellie
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02-05-2010, 07:18 AM
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#14
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Advice please-possible bone marrow mets
Hi Ellie,
Indeed, this sucks! But perhaps your onc is of the testing, testing, testing kind? Some oncs see risks everywhere, and some give your body a bit more time to sort itself out. I think that perhaps the high Herceptin dose could explain some of your symptoms. Or perhaps you are just a slow platelet builder.
I hope you get results asap and I bet they are good: no cancer.
Love
Jacqueline
__________________
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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02-05-2010, 10:12 PM
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#15
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Advice please-possible bone marrow mets
Hi Ellie, Of course since we have to deal with this darned disease we always think the worse. That's where the mind goes imediately & with good reason! But there are many reasons for low platelets as I'm sure you know. I wish I had an answer for you but I don't. I just hate that you have to go thur all this. But I will be praying there is some benign reason for your low platelets.
How much higher dose of Herceptin were you getting? I wish I could be of more help. But please know I will be keeping you in my thoughts and prayers. Hang in there...I know how stressful these things can be.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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02-09-2010, 07:56 PM
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#16
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Advice please-possible bone marrow mets
Hi Ellie, Just wanted to let you know, I am praying for good news!
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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02-11-2010, 08:49 AM
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#17
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Advice please-possible bone marrow mets
Ellie,
Of course will be saying those prayers for you.
Best Wishes,
Jean
__________________
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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02-21-2010, 02:59 PM
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#18
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Advice please-possible bone marrow mets
Unfortunately I cannot comment but I am sending a lot of love and be well wishes and I hope for the best.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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02-22-2010, 05:01 AM
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#19
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Re: Advice please-possible bone marrow mets
Hi Ellie
I will be saying a prayer for you tomorrow to our new Aussie saint Sister Mary McKillop. The church over the road from us has a stained glass window dedicated to her and she worked in this area.
You know I have done a lot of worrying over the past 9 years and I know how hard it is to wait for those tests. Try and put it out of your mind and keep busy.
I also found it helpful to think "OK what is the worst thing that could happen?" Eg: if scan shows something then there will be a treatment that can help".
Anyway I am much better at not worrying now than I was before.
Take care and know we are thinking of you "down under".
Jackie
Hamilton, Australia
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02-22-2010, 09:43 AM
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#20
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: Advice please-possible bone marrow mets
Hoping for the best....Let us know.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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