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Old 02-19-2009, 08:12 AM   #1
Ellie F
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Question UPDATE-Axillary lymph gland mets

Hi from England.Visited the site a number of times and found it really helpful. Wonder if anyone can help me with this query.I was diagnosed in Feb 2008 with ibc with 13 axillary nodes Had 4 doses of AC followed by mastectomy and 15 rads. Started on herceptin in August. A couple of weeks ago found an enlarged lymph gland in other axilla which was biopsied and contained malignant cells. Mammogram and ultrasound of breast seemed clear. Onc has stopped herceptin and I will be having axillary nodes removed and 15 more rads.Onc then said we would have to wait and see where it turned up next! Wont consider Tykerb even though I could fund this privately.Anyone had similar experience or info on this. Thanks Ellie
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Old 02-23-2009, 05:55 PM   #2
Mary Anne in TX
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Hi Ellie! Why not add chemo to more herceptin? ma
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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
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Old 02-23-2009, 06:23 PM   #3
Laurel
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Ellie,

I do not see where you had any Taxol. I'd shoot for more Herceptin and Taxol. I am puzzled why your onc would not aggressively treat you with more chemo. Puzzling...
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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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Old 02-24-2009, 05:51 AM   #4
Ellie F
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Axillary lymph node mets

Thanks for your replies.My onc flatly refuses to continue with herceptin as he says it hasn't worked and there is a cost consideration. I tried to persuade him to try an alternative or possibly a combination including taxol as I havent had this before. In fact I would have been pleased if he had suggested anything at all! His view is because I have no signs anywhere else and my scans are clear I should wait and see where it turns up next.This makes me feel like it's hopeless.My breast surgeon is not happy and thinks I should seek a second opinion so I am trying to go to see Prof Smith who was the onc mainly responsible for getting herceptin used in Britain. It seems our treatments and our outcomes here in the UK still are some way behind yours in the states.Am even thinking of going to MD Anderson but think the cost may be too great.
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Old 02-24-2009, 06:41 AM   #5
Mary Anne in TX
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I surely do support your pursuing a 2nd opinion. Keep digging for more information. You have our support! 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 02-24-2009, 07:02 AM   #6
Ellie F
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Axillary lymph gland mets

Thanks for support Mary Anne. I will continue with referral.I was really surprised with the amount of treatment you had received which thank the Lord is working for you. Encouraged me not to throw the towel in just yet!
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Old 02-24-2009, 06:18 PM   #7
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Hi Ellie,

Please do get that second opinion. I am hopeful that you will be given the tx that you need. Hang in there.

Lexi
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Old 02-24-2009, 10:27 PM   #8
Jackie07
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My oncologist brushed off my concern about new mets in my armpit/chest area also. Don't understand the way he thinks. I saw him last week - one month before my scheduled appointment. Then they just moved my upcoming appointment down another month to April.

I have contacted my surgeon who happened to be out this week. Her nurse will talk to her next Monday and if she does not see me, I will try to get another oncologist for second opinion. [Did get the appointment scheduled with the surgeon on 3/10][Got the surgery scheduled on April 2nd - wondered what my medical oncologist has to say when it's chemo time for me again...]
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NICU 4.4 LB
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3 Infertility tmts 99 > 3 u. fibroids > Pills
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6 TCH Cellulitis - Lymphedema - compression sleeve & glove
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hptc hemangioma
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
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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

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Last edited by Jackie07; 03-21-2009 at 11:29 PM..
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Old 02-25-2009, 04:05 AM   #9
Ellie F
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Red face Axillary lymph node mets

Hi again can't tell you how much better it feels to know there are other people who understand and live with the same fears (and hopes) each day. Due to see breast surgeon tomorrow for post surgery follow up and hopefully second op from onc in next couple of weeks
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Old 02-26-2009, 09:59 AM   #10
lkc Gumby
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Ellie, Please do get a second opinion. Research has shown strong evidence in continuing Herceptin despite a progression. I also wondered why not Taxol w H combo?
Good Luck.
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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
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Old 02-26-2009, 10:25 AM   #11
Laurel
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Ellie,

I am glad your surgeon is behind you. Let us know what your new onc says. I have spoken of your case to a number of folks over here across the pond and they are universally appalled! You are far from hopeless! I'd like to punch your onc. in the nose, the heartless, vile man who doesn't belong in a profession where you require a soul to be effective!
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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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Old 02-26-2009, 02:41 PM   #12
pmm10414
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It is so sad I know my treatment got delayed and scared the daylights out of me. You have to be your own advocate I have learned that early on. Good luck and God Bless. PS I am done with AC and start Taxol in two weeks I will let you know how it goes. Herceptin will start two week later because I am allergic to many drugs they want to ease me in slowly. That too is scary.
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FOUND MY TUMOR IN 11/08 AFTER CLEAR MAMMOGRAM ON 5/31/08
DX 12/09/2008 STAGE II
CHANGED TO STAGE IIIA AFTER MRI
SURGURY FOR TWO PET SCAN NODES IN CHEST NEGATIVE (DEC08)
AC (4 COMPLETE MAR09)
TAXOL HERCEPTIN (12 TREATMENTS COMPLETE IN JUN09 )
SURGERY IN JUN09 - COMPLETE RESPONSE (BOTH BREASTS NEG AND 9/9 LYMPH NODES NEG) NED
HERCEPTIN RESTARTED IN JUL09 WEEKLY UNTIL JUL10
PET SCAN - NEGATIVE DEC11 AND AUG09
BRAC - NEGATIVE SEP09
28 RADS COMPLETE SEP09
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PET SCAN - NEGATIVE DEC11
PET SCAN - SARCOIDOSIS OCT11 thought cancer was back thank The Lord it is not they think!!!!!!
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Old 02-26-2009, 03:04 PM   #13
ElaineM
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Wink Axillary lymph glad mets

I would either follow my doc around the office with various suggestions or get a second opinion. I am can be a pest when I need to be. I have done both of those things.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
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Old 02-26-2009, 03:05 PM   #14
Ellie F
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Axillary lymph node mets

Hi Everyone, thanks for all your support. Just a quick update. Saw surgeon today. Onc on hols but surgeon continued to push my case with his junior.What has emerged is that it seems that they have had very little (if any) experience of recurrence just in the opposite axilla.I asked if it was possible that I had another primary in my remaining breast and was told that though the mammogram and ultrasound hadnt shown anything obvious they couldn't exclude it! So will be trying to get my second opinion arranged as soon as possible to hopefully get some answers.
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Old 02-26-2009, 03:17 PM   #15
ElaineM
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Wink Axillary lymph glad mets

Good for you !! Keep trying to get some answers and some help.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 02-27-2009, 01:57 AM   #16
Jackie07
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Ellie,

Please keep us posted. Thanks.
__________________
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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Old 02-27-2009, 06:08 AM   #17
Ellie F
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Axillary lymph node mets

Certainly will. I'm now going to also read the research on continuing with herceptin plus an additional drug so I will be armed with the info for my second opinion.I suspect that his sole reason for stopping it was cost based as there is considerable rationing going on in the NHS.You are probably aware that herceptin has only been nationally available here for early stage breast cancer since Nov 2006. We probably wouldn't have it yet but for some brave women challenging the Government in the High Court.
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Old 02-27-2009, 09:43 AM   #18
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Hi Ellie,
I'm In England too.

After running out of options my onc sent me to Dr Steve Johnston at the London Marsden for a second opinion. He has a special interest in IBC and is very pro herceptin.

I'd ask for a second opinion with him,
Good Luck,
Jackie
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Old 02-27-2009, 11:06 AM   #19
Ellie F
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Ax lymph node mets

Thanks for that info Jackie.I had been struggling to decide who to see and had opted for Prof Smith at the Marsden because of his championing of herceptin here.Grateful for info will now make more enquiries. Ellie
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Old 02-28-2009, 06:00 PM   #20
Laurel
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Ellie,

I am still quite steamed at your onc, but having said that I am also relieved to hear you are able to seek another opinion at Marsden (whatever that is). I hope London isn't too great a journey for you. Best wishes and prayers. Please let us know what transpires with your surgeon regarding the unaffected breast. I did think it odd to read that it was your opposite axilla. I thought perhaps you had mis-typed. Let's hope your other breast is not diseased. Never a dull moment with B.C., huh? Sending prayers across the seas.
__________________

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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