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03-08-2012, 08:48 AM
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#1
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: WHO takes you to treatment?
I think I will try someone at the beginning and then someone at the end. And I will sit alone in the middle. (Definitely the premeds that make me unable to drive. And definitely the anxiety that makes me want a friend along.) I'm strong in-between but being at my infusions = regression to childhood. I am surprised by how many just go it alone. You all are my inspiration! Thank you.
__________________
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.
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03-08-2012, 09:04 AM
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#2
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Senior Member
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 140
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Re: WHO takes you to treatment?
SoCal, you should look for someone that is in the same boat. First week you can take them and than the following week they can take you. I'm sure if you ask the nurses they can let you know of someone who is in need of a ride and I'm sure they would enjoy someone sitting with them that is going through the same thing. I'm blessed to have my daughter take me. I have a 3 hour drive for chemo. There are so many times I wish I choose a treatment center closer to home,but I wanted the go to cancer treatment center of america
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03-08-2012, 11:56 AM
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#3
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Member
Join Date: Jun 2011
Posts: 22
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Re: WHO takes you to treatment?
With the exception of my first infusion, I go alone. I didn't have problems with pre-meds making me sleepy, so driving wasn't a problem for me. With the Herceptin only infusions, I don't get nay pre-meds.
I like the quiet time, and prefer not to have to entertain anyone else. I read on my iPad, watch TV and generally just relax. I regard it as my "me time" and a chance for a little internal focus.
Maryann
__________________
Found lump during a SBE
May 19, 2011 - Diagnosed IDC
June 9, 2011 - Lumpectomy, 2 tumors in left breast. One 1.3 cm and the second 1.5 cm, HER2+, er-/pr-, er+/pr-, stage 2a, type 3, 12/1+ lymph nodes.
June 22, 2011 - Drain out. Yay!
July 7, 2011 - Start chemo. 4x A/C, 12x weekly Taxol/Herceptin, Herceptin 1 year
June 28, 2011 - Port installed
July 14, 2011 - Ultrasound for mass on thyroid.
July 22, 2011 - Biopsy on thyroid mass. Results: inconclusive. Another biopsy scheduled in a couple of months.
September 8, 2011 - A/C chemo done. On to Taxol/Herceptin.
October 19, 2011 - 2nd biopsy of thyroid mass. Benign. Yipee!
December 16, 2011 - Final chemo!!!
January 11, 2012 - Started 33 rads
February 24, 2012 - Finished rads! Herceptin only now.
September 26, 2012 - Finished Herceptin.
www.CaringBridge.org/maryannschwab/visit
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03-08-2012, 12:47 PM
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#4
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: WHO takes you to treatment?
I always drove myself and brought food, puzzles and my ipod to amuse myself in the chair, no privacy really so did not make calls. Am facing 10 days rads now, and then weekly chemo. have loaned my car to my daughter for work so my husband will drop and collect me now. Would not want him to wait with me, he would be so bored. I always find someone friendly to talk to and you will too.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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03-08-2012, 01:26 PM
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#5
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: WHO takes you to treatment?
Check with your local American Cancer society advocates. they have a program where volunteers can help with transporting and have volunteers to "sit" with you .
Good Luck
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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03-08-2012, 02:00 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: WHO takes you to treatment?
My husband always drives me to my hospital appointment. But he never stays with me. (Especially after he had had some miscommunication with my oncologist.) The hospital is located right by the mall, so he takes the opportunity to 'walk' in the mall. I've been advised not to drive any more (had had a couple of minor car accidents), so someone has to drive me to the hospital.
I would read while on the infusion chair. The chemo chairs used to be lined against the wall around the nurses' station - now the hospital built private quarters for chemotherapy and the opportunity to socialize with other chemo patients is drastically reduced.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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03-08-2012, 04:11 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: WHO takes you to treatment?
I always find rides to my medical appointments regardless of what they are for, because I don't have a car, but I am always by myself in medical offices. I prefer it that way, because I can get more done. I am a multi tasker. I can socialize with friends at other times. Also being alone makes it easier to concentrate on the things on my list that I need to get done while I am there.
I have 3 appointments tomorrow. Someone will drop me off and pick me up when I am finished.
I will bring something to read, my lunch, a thermos of tea, my afternoon snack and some yarn to untangle for a blanket project several of us are working on. I also requested a portable DVD and movie at one of the locations, so I guess I will watch that while I am there.
I have to run down to the pharmacy and the bank machine in the lobby in between appointments. I also have to pick up the physical therapists report to show my naturopath next week, so it will be a busy day.
Last edited by ElaineM; 03-08-2012 at 04:14 PM..
Reason: addition
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