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11-15-2011, 06:47 PM
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#21
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Senior Member
Join Date: May 2009
Posts: 510
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Re: Its all going wrong
So happy for your good news!!! I was thinking about you and I'm very glad your scan is stable!
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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11-15-2011, 09:20 PM
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#22
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: Its all going wrong
Delaney,
Your post brought out the wise women on our site. They all have such wonderful vision and strength. Wishing you some extra strength as you talk to your doctor. Glad you were feeling a little better. We will be anxious to hear from you.
Sending you love,
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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11-16-2011, 09:24 PM
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#23
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Its all going wrong
Delaney, on my brain MRIs, a tumor on the infindiblum has shown up twice. That is above the sella turcica that protects the pituitary. It is 'outside the brain' in the boney skull, and it is uncomfortably close to the optic nerves... my rads onc had to give me the 'we will be mapping and IMRT radiating in the area of the optic nerves and although I have never had it happen in 28 years, there is a risk of blindness' talk (which luckily went well in my favor). As well, a tumor in that region can compromise the optic area and affect vision a bit. Not that this is happening to you at all, but just more info that I have learned and experienced that you might want to have in your back pocket.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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11-19-2011, 05:44 PM
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#24
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Its all going wrong
Like NanaJoni, I have recently been diagnosed with cataracts that my doc is attributing to my chemo of twenty eight years ago. Glad your scans were good, and hope to hear that your vision problem is something fixable. I am also planning cataract surgery, and was happy to see that NanaJoni has had a good result!
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11-19-2011, 06:40 PM
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#25
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Its all going wrong
I'm so glad you got this positive news!
Wishing you the very best,
Paula
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11-20-2011, 02:08 PM
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#26
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Its all going wrong
I logged in to check on you this evening Helen and delighted to see your good news!!
__________________
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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11-29-2011, 02:16 PM
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#27
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Its all going wrong
I met with the Oncologist today and the latest mri shows a small tumour in the brain, left side. I am being scheduled for SRS. I know this is targeted radiation but can someone explain what to expect? Tried doing a search here but cant find the procedure described anywhere. Am really hoping this treatment zaps this single lesion as I am stable everywhere else.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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11-29-2011, 03:59 PM
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#28
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Its all going wrong
Oh Helen thats not what you needed to hear, I don't know about this found this link http://cancergrace.org/radiation/200...or-brain-mets/
I'm sure other's here will advise more and sending you good wishes for a sucessful treatment!
__________________
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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11-29-2011, 09:10 PM
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#29
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Member
Join Date: Nov 2011
Location: Arlington, TX
Posts: 11
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Re: Its all going wrong
OTher names for SRS are CyberKnife or GammaKnife. Try searching that.
www.brainmetsbc.org has good info about all that stuff too.
From what I've searched, the SRS is "quicker" than traditional surgery, but it takes longer to work since you are not actually removing the tumor. Sometimes you have to do it because you physically can't surgically remove the tumor. I also read alot about "tumor necrosis" with the SRS treatments.
Do you know where the tumor is located? My was a 1.5 cm tumor in the right parietal lobe, about 2 cm into the brain. They were able to surgical remove it and I haven't had any complications from that surgery (like vision, clumbsiness, cognitive function, memory). I take that back: I have problems with figuring math problems, like how much time I walked, how much tip to give, adding numbers.
Good luck with the treatment plan and stay with the fight. You are worth it!!!!!
__________________
Original dx: 9/17/2010 triple negative, Stage II
Neo-adjuvant chemo of AC-T
Bilateral mastectomy and axillary node dissection. (1/11 lymph nodes +)
Tissue expanders and fill
Radiation to breast and axilla
Breast recurrence on radiation: 9/2011 now HER2 +
This time HER2 positive, started herceptin
Brain metastasis: 10/2011
Surgery to remove lesion 11/2011
All cancer gone 11/17/2011
Confident I will outlive my oncologist!!!
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11-30-2011, 02:05 PM
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#30
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Its all going wrong
I'm posting this here in case anyone else has these symptons and it will give reassurance. I met with a neurologist today and he is adamant that the vision problems I've been having have 'nothing to do with cancer'. He thinks its due to hormones, being pushed into the menopause by chemo didnt help. I had migraines in my teens and he said that was also due to a surge in hormones.
He said the lesion shown on the recent brain mri is 'absolutely tiny' and targeted radiation should deal with that. He said the lesion was totally in the wrong location to cause any vision problems. This disease is never straightforward!
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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11-30-2011, 07:34 PM
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#31
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Its all going wrong
My friend with brain mets had dizzyness and hearing issue's but no problem with vision so hope your onc is right Helen!
__________________
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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