HER2 Support Group Forums - View Single Post - ~Mighty Oak's Gamma Knife~September 10, 2008~

SoCalGal · 09-03-2008, 09:29 PM

Hi Marie (and Ed)-
Compared to what you've endured the gamma is a cake walk. I went in at 7 and was home by 11:00. Only took a half of an ativan. The nurse said I seemed nervous which totally pissed me off since she had never met me. After pointing that out to her she backed off. My doc was great and when I said I needed a minute he completely stopped and just gave me a second to catch my breath. There was no pain. It was a very weird sensation when they "screw" the halo into your head. Not painful but a weird pressure that is just so un-natural that I needed a second to adjust before he continued. The brain surgeon did the screwing. Haha. The radiation oncologist assisted and apparently there was also a physicist or something like that doing calcs in the other room. Once they get the halo on the "hard" part is over. They will then do a scan where they click you into place for a precise mapping. Again - weird but if I can do it anyone can. The ativan really helped take the edge off my nerves. This scan gets to the micro slices in the brain so they ensure that there are no more spots to zap and that they zap all they see. Next you wait about 30 minutes while they do the calcs and planning. The only thing you can do at this time is just sit very still as this halo is on your head but also helmut like and in front of your face a little bit. I was able to drink through a straw. The actual gamma was less then 10 minutes if I remember correctly. I only had one spot to zap so it can vary on the number of little spots. Once the zapping is done they quickly just unscrew the halo and you are done. They wrapped my head in gauze for about 15 minutes to make sure I wasn't bleeding and that I felt fine (which I did). They did not shave my hair or put any excessive dressing on when I left. My head felt oddly numb for several days around the screw holes. I was slightly bruised but went out that weekend for sure. I went home on gamma day and rested but the next day and weekend I was fine. I did not have any pain or bad headache. It was really a miracle treatment. I know it will work the same miracle for you! Feel free to pm me if there is anything else I can say and sorry if I said more than you wanted to hear. xo xo Flori

09-03-2008, 09:29 PM	#20
SoCalGal Senior Member Join Date: Apr 2007 Location: LA LA Land Posts: 1,607	been there! Hi Marie (and Ed)- Compared to what you've endured the gamma is a cake walk. I went in at 7 and was home by 11:00. Only took a half of an ativan. The nurse said I seemed nervous which totally pissed me off since she had never met me. After pointing that out to her she backed off. My doc was great and when I said I needed a minute he completely stopped and just gave me a second to catch my breath. There was no pain. It was a very weird sensation when they "screw" the halo into your head. Not painful but a weird pressure that is just so un-natural that I needed a second to adjust before he continued. The brain surgeon did the screwing. Haha. The radiation oncologist assisted and apparently there was also a physicist or something like that doing calcs in the other room. Once they get the halo on the "hard" part is over. They will then do a scan where they click you into place for a precise mapping. Again - weird but if I can do it anyone can. The ativan really helped take the edge off my nerves. This scan gets to the micro slices in the brain so they ensure that there are no more spots to zap and that they zap all they see. Next you wait about 30 minutes while they do the calcs and planning. The only thing you can do at this time is just sit very still as this halo is on your head but also helmut like and in front of your face a little bit. I was able to drink through a straw. The actual gamma was less then 10 minutes if I remember correctly. I only had one spot to zap so it can vary on the number of little spots. Once the zapping is done they quickly just unscrew the halo and you are done. They wrapped my head in gauze for about 15 minutes to make sure I wasn't bleeding and that I felt fine (which I did). They did not shave my hair or put any excessive dressing on when I left. My head felt oddly numb for several days around the screw holes. I was slightly bruised but went out that weekend for sure. I went home on gamma day and rested but the next day and weekend I was fine. I did not have any pain or bad headache. It was really a miracle treatment. I know it will work the same miracle for you! Feel free to pm me if there is anything else I can say and sorry if I said more than you wanted to hear. xo xo Flori __________________ 1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED. 2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading. 2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins. ‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED. ‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time. 1/2006 Rads again, to scar line. NED. 3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs. 12/07 Herceptin.Tykerb. Markers go stable. 2/8/08 gamma knife 13mm stupid brain met. 3/08 Herceptin/tykerb/avastin/zometa. 3/09 brain NED. Lungs STABLE. 4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS) 9/09 MARKERS normal! 3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead. Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA Dec 2010 Brain NED, lungs/sternum stable. markers normal. MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva. May-Aug 2011 Tykerb Herceptin Xgeva. Sept 2011 Tykerb, Herceptin, Zometa, Avastin. April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED! OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa. 12/20/12 add in PERJETA! March 2013 – 5 YEARS POST continue HAPZ APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13 May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer. June-August 2013HAPX Herceptin Avastin Perjeta xgeva. Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months. Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort) December '13 BRAIN MRI ned in da head. Jan 2014: CONTINUING on HAPX… FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8 3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13) 4. scattered lung nodules, up to 5mm in size = stable, no increased activity 5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX! October 2014: hold avastin, continue HPX Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis. Continue HPX. Adding back Avastin Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva. Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :(( Markers drop post rads. 2/24/16 HAP plus X - markers are down SCIATIC PAIN DEAL BREAKER. 3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing. APRIL 2016 - 9 YRS MBC July 2016 - continue HAP plus Xgeva. DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva APRIL 2017 10 YEARS MBC December 2017 - Progression - gonna switch it up FEB 2018 - Kadcyla 3 cycles ---->progression :( MAY30th - bronchoscopy, w/foundation1 - her2 enriched Aug 27, 2018 - start clinical trial ZW25 JAN 2019 - ZW25 seems to be keeping me stable APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC MAY 2019 - progression back on herceptin add xeloda JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met 10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me. 12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. 10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.