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SoCalGal · 10-05-2016, 01:56 PM

I see the ONC next week to get answers to the WHY part. If I had to guess, I'd say a whammy combo of (Hel-lloooo) Radiation to L1 in January, Spine surgery in March, and then, ahem, poor absorption in my intestines due to cancer related colitis and also probably some degree of celiac/gluten intolerance.

I'm mostly mad that I've been reporting annoying side effects since my return from NYC in JULY. Like the most chapped feeling lips which I've never had, dry itchy skin which I'd never had, horrible dry hair, etc. Not to mention my always chant of extreme fatigue.

The bruising started three weeks ago, plus the can't catch my breath complaint. AND a strong email to my team that said my mom dropped dead of a lung embolism because everyone was focused on post-polio stuff during the two doctor visits the week before she dropped dead at age 57.

My email went on to say could they stop focusing on cancer, and try to figure out what else could be making me feel so awful?!

Anyhow - finally my NP thought to check my iron reserves, which hadn't been checked for 2 years, and they were low normal back then. I was unaware and didn't even know of this test let alone the test result, or of course I would have followed up about 18 months ago, before I felt this shitty!!!

I can barely communicate/articulate a verbal thought. My typing seems okay, though.

Off to get my first infusion of Venofer. I hope @Margaret you are mixing memories of the two, with regards to side effects. My NP said just the opposite as far as s/e's go. You are correct in that you can get one or two shots of the other, but for me, they want to so slowly since I always seem to get a weird thingy. I am hoping and hoping and hoping that today goes smoothly and I don't wind up feeling sick tonight. But OMG I am just barely able to move - scary feeling. I still have a couple things to do before I check out for good!!!!!

xoxo
Flori

10-05-2016, 01:56 PM	#9
SoCalGal Senior Member Join Date: Apr 2007 Location: LA LA Land Posts: 1,607	Re: No rant JUST the facts... I see the ONC next week to get answers to the WHY part. If I had to guess, I'd say a whammy combo of (Hel-lloooo) Radiation to L1 in January, Spine surgery in March, and then, ahem, poor absorption in my intestines due to cancer related colitis and also probably some degree of celiac/gluten intolerance. I'm mostly mad that I've been reporting annoying side effects since my return from NYC in JULY. Like the most chapped feeling lips which I've never had, dry itchy skin which I'd never had, horrible dry hair, etc. Not to mention my always chant of extreme fatigue. The bruising started three weeks ago, plus the can't catch my breath complaint. AND a strong email to my team that said my mom dropped dead of a lung embolism because everyone was focused on post-polio stuff during the two doctor visits the week before she dropped dead at age 57. My email went on to say could they stop focusing on cancer, and try to figure out what else could be making me feel so awful?! Anyhow - finally my NP thought to check my iron reserves, which hadn't been checked for 2 years, and they were low normal back then. I was unaware and didn't even know of this test let alone the test result, or of course I would have followed up about 18 months ago, before I felt this shitty!!! I can barely communicate/articulate a verbal thought. My typing seems okay, though. Off to get my first infusion of Venofer. I hope @Margaret you are mixing memories of the two, with regards to side effects. My NP said just the opposite as far as s/e's go. You are correct in that you can get one or two shots of the other, but for me, they want to so slowly since I always seem to get a weird thingy. I am hoping and hoping and hoping that today goes smoothly and I don't wind up feeling sick tonight. But OMG I am just barely able to move - scary feeling. I still have a couple things to do before I check out for good!!!!! xoxo 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.