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Old 10-18-2007, 01:11 AM   #11
hutchibk
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Join Date: Oct 2005
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I will just simply have to agree to disagree with you, Debbie. Respectfully.
However:
1. the referenced 'abstract' that at the beginning of the thread that started this discussion, and the NCCN guidelines that you refer to, are not as clear as you would make them out to be, as they are written in very scientific terms and it is difficult to translate into laymen's terms. You took the liberty of translating for us laymen/women using your "language", and your perspective... which by default carried your opinion layered in it. Maybe it was unintended and you don't realize the unwavering absoluteness with which you presented it.
2. The Page 75 "tumor marker" recommendations from the 2007 NCCN Clinical Practice guidelines for Breast Cancer are pretty antiquated as they reference "#177. Bast RC, Jr., Ravdin P, Hayes DF, et al. 2000 update of recommendations for the use of tumor markers in breast and colorectal cancer: clinical practice guidelines of the American Society of Clinical Oncology. J Clin Oncol. 2001;19:1865-1878." 2000 was almost 8 years ago. A lot has changed since then. It seems to me to be absolutely black or white for you that the research presented is the only truth and the only possibility. OK. So be it. I see it entirely differently and luckily so does my oncologist. I am relieved that he doesn't follow textbook guidelines.
3. You have suggested that we are being unfriendly because we aren't willing to buy into the referenced guidelines hook, line, and sinker. You suggest that we can't see "the truth" as you presented it. I believe we are not at all being unfriendly. Disagreement can be uncomfortable, true. Some of us simply disagree (and are living proof otherwise) with the presented absoluteness from guidelines that use an 8 year old study as their basis for said recommendation. It is my best guess that more current studies will appear before the NCCN in not too distant years that will suggest that they reconsider that recommendation...
4. I can find numerous clinical oncs, if I were to put my mind and time to it, (including mine) who would love to expound on how and why the theoretical guideline you reference is outdated and obsolete thinking.
5. I have read the Four Agreements. I agree it is a good book with good insight.

I will leave it at that, and as I said, I will agree to disagree about this topic and with the NCCN recommendations about following tumor markers post primary DX and treatment.
__________________
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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