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Old 08-11-2012, 09:40 PM   #1
hutchibk
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Posts: 3,519
Re: Question?

I had a baseline PET when I finished chemo... about 9 months after I completed the very first chemo. I was stage 2B. I was too early, though, to get Herceptin, so I did not get Herceptin until I recurred 14 months later.

I have never been a stranger to PETs... have had about 6 of them over time, and my onc has used them when he needed to, to find out what is going on. He is very, very thorough. I actually thank goodness for them (especially the baseline to start with) as I believe they have extended my life... (7 years as a stage IV survivor).

I am not about to tell you what to do, but I did a PET and a brain MRI within the first couple of years after chemo.
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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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Old 08-11-2012, 10:37 PM   #2
Lani
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Join Date: Mar 2006
Posts: 4,778
Re: Question?

Spent 45 mintues composing and although signed in had my post rejected and lost. Then tried again for another 10 minutes , ditto

Here is my last attempt with what I copied and pasted into an email the first time (I have had lots of bad experiences with this here and it is one of the reasons I don't reply)

Unedited prior version previously rejected by me but not worth editing:
I think you misinterpreted both me and the abstract

Very very few her2+ patients recurred in their REAL WORLD non-clinical trial study especially compared to the numbers who recurred without benefit of herceptin treatment

Upon reading the article only about 29% of those who did not get herceptin did not get chemo either, however (I guess British Columbia had very different guidelines than the US during that period)

What was of concern was the percentage of those FEW who did recur who recurred in the CNS first. Most oncologists believe (or have quoted time and time again at conferences, discussions associated with conferences, etc) that it is extremely unlikely for the brain to be the first site of presentation of metastasis in brain cancer.

Well it looks like that is not true for her2+ breast cancer and certainly NOT for her2+ breast cancer treated with herceptin where it was in this combined retrospective study in British Columbia about 40% of those who metastasized first metastasized to their brain.

Even if that is 40% of a small number of patients it is patients whose fate can be easily
improved upon by catching it early when it can be treated with SRS. There are some on this board whom oncologists would deem cured of her2+ breast cancer brain mets (our founder, Christine, Steph and others) There should be a great deal of emphasis in looking at other REAL WORLD studies to see if they confirm this high rate of CNS as first site of her2+ breast cancer metastasis. There should also be studies to try to determine biomarkers in the blood indicating i a reasonable suspicion that bc has spread, if not indicative of brain mets themselves, as they would probably have to brain MRI 100 her2+ breast cancer patients many times (noone knows how often it need be done) before finding 1-2 who might have a positive finding and need treatment.

The "old" philosophy of waiting for bones to break, patients to have loss of vision or seizures or have trouble breathing rather than looking for early signs of recurrence when there might be some who are curable (oligometastatic bone, perhaps some oligometastatic small brain mets, oligometastatic liver involvement with surgical or embolic therapy, etc stands in the way of our discovering if there is a subclass or subclasses of patients whose course can be meaningfully altered by earlier diagnosis of metastases. Sticking to the old dictum not to look for metastases as it will not change the fact that the average survival of Stage IV patients is 2 years totally ignores the progress made in dividing out subtypes of breast cancer and treating them differently and in so doing changing the natural history of the disease in those patients. By not attempting to divide out the subtypes where early diagnosis might make a difference, they may be unnecessarily dooming some patients and of meaningful longer lives with good quality of life and they may also be obscuring the discovery of better treatments.

Down with nihilism--but don't drain the treasury performing the wrong tests on those unlikely to benefit either.

The I-Spy trial is looking for biomarkers to help decide who will and will not benefit from which tests and treatments. Some reports based on it are becoming available. It can't be too soon.

Off the soapbox
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