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SoCalGal · 03-11-2018, 09:27 AM

Katherine,
I think your approach is reasonable. While terrifying to think of anything being done to the brain, it really was one of the easiest treatments I've ever done. If they still use an aluminum "halo" affixed to your head, keep in mind these "screws" do not go in very far, and once they gave the little bits of lidocaine it's more of a pressure sensation and was not pain at all. I say it must be how it feels to have an arrow in your body, it's there and you know it's "wrong" but it far from kills you. Also made me think of the old Steve Martin bit where he came out with an arrow thru his head, signature look for years.

The other thing I wanted to mention on ANY clinical trial requirements; they can and do make exceptions all the time. I think going forward the her2climb is very promising, and hopefully they'll expand access if you need to switch protocols.

Okay, lastly, yes, this is all surreal, terrifying and for me, the next time I meet with my one (end of this month) my focus is going to be "what does it look like if I go off treatment". I have so many questions for her on this issue; will she still look after me if I need a palliative treatment for pain, will she expedite my right to die paperwork, and in her best estimation, how much good time might I have before the beast really roars. It's sad that after 10 years in her care, I am most anxious of her telling me I should find another doctor - I am afraid she won't respect or support my choices. BUT, I like to have an idea of plan A, B, C and maybe D. And know that for all my fact gathering, I won't really know until life unfolds.

Wishing you all the best on the 15th. I went in at 7:00 AM. Kept street clothes. My best friend and boyfriend came with me. We had a big room, not hospital setting. Took no drugs before hand. Asked my surgeon to stop the drill once, just for me to catch my breath. And then he finished installing the halo. I then sat for about 2 ½ hours while the physicists did more planning. Then they "snapped" me into place, which is the best way to keep my head perfectly still while they aim rads at tumor and zapped. I think that took about 10 minutes or less. I felt nothing other than relieved to get halo off. I wish you the easiest time.
xoxo

03-11-2018, 09:27 AM	#23
SoCalGal Senior Member Join Date: Apr 2007 Location: LA LA Land Posts: 1,607	Re: Cyberknife or Whole Brain? Katherine, I think your approach is reasonable. While terrifying to think of anything being done to the brain, it really was one of the easiest treatments I've ever done. If they still use an aluminum "halo" affixed to your head, keep in mind these "screws" do not go in very far, and once they gave the little bits of lidocaine it's more of a pressure sensation and was not pain at all. I say it must be how it feels to have an arrow in your body, it's there and you know it's "wrong" but it far from kills you. Also made me think of the old Steve Martin bit where he came out with an arrow thru his head, signature look for years. The other thing I wanted to mention on ANY clinical trial requirements; they can and do make exceptions all the time. I think going forward the her2climb is very promising, and hopefully they'll expand access if you need to switch protocols. Okay, lastly, yes, this is all surreal, terrifying and for me, the next time I meet with my one (end of this month) my focus is going to be "what does it look like if I go off treatment". I have so many questions for her on this issue; will she still look after me if I need a palliative treatment for pain, will she expedite my right to die paperwork, and in her best estimation, how much good time might I have before the beast really roars. It's sad that after 10 years in her care, I am most anxious of her telling me I should find another doctor - I am afraid she won't respect or support my choices. BUT, I like to have an idea of plan A, B, C and maybe D. And know that for all my fact gathering, I won't really know until life unfolds. Wishing you all the best on the 15th. I went in at 7:00 AM. Kept street clothes. My best friend and boyfriend came with me. We had a big room, not hospital setting. Took no drugs before hand. Asked my surgeon to stop the drill once, just for me to catch my breath. And then he finished installing the halo. I then sat for about 2 ½ hours while the physicists did more planning. Then they "snapped" me into place, which is the best way to keep my head perfectly still while they aim rads at tumor and zapped. I think that took about 10 minutes or less. I felt nothing other than relieved to get halo off. I wish you the easiest time. xoxo __________________ 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.