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Lani, propeller heads, and WBR sisters/brothers ~ looking for info and ideas
So, yesterday's MRI showed two new itsy bitsy critters in my noggin. Crap on a crapstick.
I will meet with my rads onc on Monday to get his assessment and see the pictures. I will have more exact details and measurements then.
The plan is to keep me on Tykerb/Herceptin systemically because I have nothing new extracranially... it is holding me well below the chin and we don't want to upset the entire apple cart. Adding anything new to T/H at this point will probably cause a side effect 'bonanza' that we don't need to deal with just now.
But for options to knock it out of the brain, we seem limited now. There is thought that I probably have more little critters waiting in hiding that we can't see yet on MRI. So, I believe that my oncs will probably offer whole brain radiation as their preferred option at this point. I asked my med onc on the phone if he has experienced WBR to be curative of recurring brain mets, and he said yes he has... he has had a lot of patients who put an end to their brain recurrences with WBR. But, not always of course, for some it was only a temporary gain, not curative. And of course I know there are no guarantees.
I am thinking of asking for another zapping with targeted rads (our good old whack-a-mole method) to buy some more time to do research, get my 6 month PET at the end of Sept to verify we are stable below the chin, and see what's in trials/pipeline, just to be sure I have performed due diligence before I sign on to the WBR route. If you have any ideas, of course I would love to hear 'em!
So, I am calling all my sisters/brothers here who might have ideas that I have not thought of yet.
Especially any and all who have had WBR and can share your experience through treatment, after treatment, any and all side effects (temporary and lasting) including cognitive effects.
Thanks guys... you're the best!
__________________
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; 08-28-2009 at 08:24 PM..
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