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hutchibk · 12-31-2010, 05:33 PM

It is time to make sure you get a second and maybe even third opinion. You want to find a Radiation Oncologist who will treat you with targeted radiation (IMRT - <Intensity Modulated Radiation Therapy>, Cyberknife, or Gammaknife) and not WBR, if it can be avoided... but also sometimes it is the only choice. With pretty small mets, I refused it and went to my docs with the Tykerb/Xeloda plan and regular MRIs to monitor, and the idea to attack them with targeted radiation when needed. I also told them that if my idea didn't work, that I would reconsider WBR. So far it has not been necessary and my Radiation Oncologist says we have probably avoided it altogether.

IMRT, Cyber and Gamma are all similar technology but pretty much just differently branded machines... with minor differences in which is better for various needs. IMRT is given over a few days (in my case 5 days, 15 min appts each day), Cyber is usually a one day visit, but you are in the machine for an hour or longer which would have tested my limits... and Gamma I am less familiar with, but many here have had it. I am pretty sure that Courtney has had Gamma on multiple brain mets with good results. Hopefully she will check in here.

My Rads Onc here in Austin TX is amazing. He has Varian IMRT machines. I don't know how the size of the tumor affects the best choice of machine, as mine were all pretty small (so far 6 in total have been zapped with IMRT, the largest was 9mm).

Kaiser Permanente in LA has IMRT/Varian machines... http://xnet.kp.org/scal/losangeles/s...radiation.html

Google/ask around for recommendations of Radiation Oncologists, Cyber or Gamma centers, too.

Ask your doctor if they can start you on Tykeb/Xeloda pretty quick. I got lucky and Tykerb/Xeloda shrunk my brain mets quite a bit and put them to sleep for about 18 months without any initial radiation (we MRIed every month for 3 months to be careful). Then 6 of them woke up and needed to be radiated, so we targeted them and poof they were gone. Haven't seen them since, and that has been almost 3 years now.

12-31-2010, 05:33 PM	#7
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: Help! Brain mets besides lung mets It is time to make sure you get a second and maybe even third opinion. You want to find a Radiation Oncologist who will treat you with targeted radiation (IMRT - <Intensity Modulated Radiation Therapy>, Cyberknife, or Gammaknife) and not WBR, if it can be avoided... but also sometimes it is the only choice. With pretty small mets, I refused it and went to my docs with the Tykerb/Xeloda plan and regular MRIs to monitor, and the idea to attack them with targeted radiation when needed. I also told them that if my idea didn't work, that I would reconsider WBR. So far it has not been necessary and my Radiation Oncologist says we have probably avoided it altogether. IMRT, Cyber and Gamma are all similar technology but pretty much just differently branded machines... with minor differences in which is better for various needs. IMRT is given over a few days (in my case 5 days, 15 min appts each day), Cyber is usually a one day visit, but you are in the machine for an hour or longer which would have tested my limits... and Gamma I am less familiar with, but many here have had it. I am pretty sure that Courtney has had Gamma on multiple brain mets with good results. Hopefully she will check in here. My Rads Onc here in Austin TX is amazing. He has Varian IMRT machines. I don't know how the size of the tumor affects the best choice of machine, as mine were all pretty small (so far 6 in total have been zapped with IMRT, the largest was 9mm). Kaiser Permanente in LA has IMRT/Varian machines... http://xnet.kp.org/scal/losangeles/s...radiation.html Google/ask around for recommendations of Radiation Oncologists, Cyber or Gamma centers, too. Ask your doctor if they can start you on Tykeb/Xeloda pretty quick. I got lucky and Tykerb/Xeloda shrunk my brain mets quite a bit and put them to sleep for about 18 months without any initial radiation (we MRIed every month for 3 months to be careful). Then 6 of them woke up and needed to be radiated, so we targeted them and poof they were gone. Haven't seen them since, and that has been almost 3 years now. __________________ 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; 12-31-2010 at 09:29 PM..