HER2 Support Group Forums - View Single Post - ~Ned Is Over~Aggressive Brain Met Activity~PLEASE READ MY BRAIN SPECIALIST FRIENDS

hutchibk · 08-27-2008, 10:02 AM

Marie - I concur with Joe! Please don't panic. Targeted radiation is a formidable opponent to nasty brain mets (gamma, cyber, stereotactic - all basically get the same result and my rads onc told me not to buy into the sexiness and outrageous expense of proton beam - it is better for other things than brain mets)! If any of the spots are operable, that is also an option. And we have Tykerb/Xeloda which have worked wonderfully for me and many others... there is also Whole brain radiation to consider, but for me personally, I have steered away from that option for now and will save it on the back burner for a last resort.

Brain mets just aren't the beast that they were even 5 years ago. We have so many options and more on the way.

Here's all the questions I considered and asked when mine were diagnosed 18 months ago: (some are basic and obvious, of course - and you already know)

1. sizes and locations of the lesions?
(what brain or body functions might they affect and when could that happen?)

2. swelling around any lesions?

3. are any operable?

4. are there any new spots in the torso?

5. how quickly are they likely to grow? (my rads onc felt that mine would increase at the most by only about 10% over a month or 6 weeks if at all in that short period of time... that was good to know as I took time to formulate my sinister plan to squash them)

6. Can you do a combination of treatments? (a hypothetical plan might be: operate on the most ominous one and target radiation on a couple others and start Tykerb/Xeloda to see if you can get response from that before zapping too many parts of the brain - you get where I am going...)

7. If there is also progression in the torso, what chemo regimen will work to both cross the BBB and treat the torso? (It's looking like in my case, Tykerb/Xeloda has treated the brain, protected the body and kept me nice and stable, except for one bone met in this iliac wing that we have stablized with Zometa. But if we see any progression below the neck, we will probably add Herceptin back in for a try.)

And if I can think of any other questions that I asked, I will add them...

Best of luck and let us know!

08-27-2008, 10:02 AM	#10
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Marie - I concur with Joe! Please don't panic. Targeted radiation is a formidable opponent to nasty brain mets (gamma, cyber, stereotactic - all basically get the same result and my rads onc told me not to buy into the sexiness and outrageous expense of proton beam - it is better for other things than brain mets)! If any of the spots are operable, that is also an option. And we have Tykerb/Xeloda which have worked wonderfully for me and many others... there is also Whole brain radiation to consider, but for me personally, I have steered away from that option for now and will save it on the back burner for a last resort. Brain mets just aren't the beast that they were even 5 years ago. We have so many options and more on the way. Here's all the questions I considered and asked when mine were diagnosed 18 months ago: (some are basic and obvious, of course - and you already know) 1. sizes and locations of the lesions? (what brain or body functions might they affect and when could that happen?) 2. swelling around any lesions? 3. are any operable? 4. are there any new spots in the torso? 5. how quickly are they likely to grow? (my rads onc felt that mine would increase at the most by only about 10% over a month or 6 weeks if at all in that short period of time... that was good to know as I took time to formulate my sinister plan to squash them) 6. Can you do a combination of treatments? (a hypothetical plan might be: operate on the most ominous one and target radiation on a couple others and start Tykerb/Xeloda to see if you can get response from that before zapping too many parts of the brain - you get where I am going...) 7. If there is also progression in the torso, what chemo regimen will work to both cross the BBB and treat the torso? (It's looking like in my case, Tykerb/Xeloda has treated the brain, protected the body and kept me nice and stable, except for one bone met in this iliac wing that we have stablized with Zometa. But if we see any progression below the neck, we will probably add Herceptin back in for a try.) And if I can think of any other questions that I asked, I will add them... Best of luck and let us know! __________________ 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; 08-27-2008 at 02:26 PM..