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Old 01-10-2008, 11:05 AM   #5
hutchibk
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Just to play a little devil's advocate here... I am not in such a hurry to cast such a cynical light over the FDA regarding this. In reading the article, the FDA is doing nothing more than telling the internet sites to stop marketing them as safe (which has not been proven) and to stop making unproven claims to sell them. They are not prohibiting anyone from selling them (unless, perhaps, they have the illegal ingredient in them). They are still available to anyone who seeks them out. Should one wish to seek them out, my opinion is that it would be wise to seek out a naturopathic doctor who is knowledgeable and reputable to prescribe and/or compound, administer, and monitor you, and one who knows how his product is manufactured and where it comes from. My opinion is that the FDA needs to create an arm of the administration to specifically oversee and monitor the supplements, vitamins and herbs that are sold by everyone from very reputable companies/doctors to multitudes of snake oil salesmen. Where and how and with what ingredients are these things being produced? Are they really what they say they are? Take last year's pet food fiasco for example. Ingredients sold to the pet food companies were not really what the Chinese companies said they were, they were either entirely the toxic plastic chemical melamine, or were cut/laced with melamine to extend the supply of the supposed ingredient in order to make more money from it. So, you see, there are greedy agendas on both ends of the spectrum. Most supplement or herb companies do not want you to know their manufacturing standards and processes, which nobody checks on thanks to very powerful supplement industry lobbyists, of which there are hundreds. It is a multi-million dollar, largely un-scrutinized industry. Personally, I would never buy a drug or supplement over the internet, not since a friend's young wife died two years ago from liver toxicity caused by 3 weeks of using chinese herbs she ordered on the internet to treat arthritis in her knee, and it was determined that not all ingredients were natural herbs. Just one girl's opinion.
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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."

Last edited by hutchibk; 01-10-2008 at 11:13 AM.. Reason: correction
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