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Just reading the review on Amazon sounds intriguing. I know that they also have feelings and emotions that enter the mix... and that can color their scientific thinking.
I believe that to be true when it came to my brain mets. I know that my oncs care very deeply about me and are invested in my long term survival. We are very close. I try to keep them on their toes, and they try to keep me alive for a very long time. I love them and trust them. This is not at all a judgement of them or their thought processes, but an observation of where I think their original recommendation of treatment came from. They wanted me to first consider targeted rads, then it was ramped up to WBR, and in the end I lobbied for watchful waiting and observation of the efficacy of the drugs. I know that they were erring towards the most aggressive treatment available because they didn't want to take any chances. They care about me and all of their patients and don't want us to die. I think they sometimes err towards "throwing everything at it", the bigger and more all encompassing the better. I can't fault them for that. I believe that cancer scares them as much as it does us. I love that they want to kick it's ass and I think it is natural to lash out aggressively at something that threatens someone you care about. However, I had a feeling that if we reined in the emotion (imagine that, a patient reining in the emotion, LOL) about the brain mets and held tight for a little bit, we might get a good response from the drugs and some good info, and if not, we wouldn't lose any ground if we were smart about it and kept close eye. I loved that they were trying to protect me at all costs. I understand how and why they were thinking what they were thinking. They were thinking with their hearts first. And I know that many docs don't approach it that way. I am very lucky. They appreciated my take on it too, and have told me that they have learned something from it.
I will definitely order this book and read it... sounds great.
__________________
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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