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Old 04-15-2016, 02:30 PM   #1
spiritualabundance
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On Tamoxifen, Herceptin, Percocet at night, and saline expanders. So much pain!!

I don't know what could be causing the joint pain in my hips and legs. I'm down to just Herceptin infusions but have also started taking Tamoxifen and Calcium supplements. I'm also dealing with breast expanders, filling with saline about once a week. I'm at 500 now but have to wait for the next fill due to shoulder pain and sternum pain on my right side only. Left could handle more. :/

Anyone else experience body aches from any of these and have any idea what it is? It feels like it's mostly just lower body but that could be because my upper body I blame on the expanders.

Thoughts?

Thank you!!!
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6/6/2015-Found a lump in my L breast at 45 years young.
6/12/2015-First u/s
7/2015-Mammogram and 2nd u/s (same day)
8/7/2015-Needle aspiration u/s biopsy. Doctor indicated looked malignant. (thanks doc!! the wait after that sucked)
8/20/2015-Diagnosed w ER+,PR+,HER2+ BC in L breast (now 46 years young.)
9/24/2015-Saw first surgeon, referred by oncologist. Great guy. Office staff not advocates.
10/12/2015-Met w Plastic Surgeon. Amazing doctor. Recommended not immediate due to chemo and 'just get the cancer out first' attitude. Will do recon with him after chemo is complete.
10/12/2015-Called first surgeon's office who told me that it's been too long since the first consult and will need to schedule another consult on 10/24 and then schedule surgery within 2-3 AFTER that date. (BITE ME)
10/12-Found a new surgeon.
10/15-Consulted with new FEMALE surgeon. She was AMAZING! Asked me if I wanted to do the surgery on Monday (in 5 days). Stunned and thrilled!!
10/26/15-Surgery for bilateral mastectomy, port placed, and 3 nodes removed for SNB. 3 drains installed.
10/28/15-home from the hospital to recover.
10/30/2015-Follow up with surgeon. Drains removed. Was told tumor was removed but had more than doubled in size from 1.3 to 2.9cm. 3 nodes removed, all negative. Healthy breast was clear but several suspicious areas on affected left breast. Looks to be Stage 2A. Oncologist appt next week.
11/5/2015-Follow up with oncologist. Planning to start chemotherapy (Herceptin, Taxotere, and Carboplatin together beginning November 30th). Very nervous about side effects, low white blood count, anemia, steriods, etc, etc, etc. I'm not usually one to medicate myself for anything. Not ready for this. Kinda scared.
11/30/2015 - Isaiah 41:10 today for sure. Today was my first day (round) of TCH chemo treatment. Before receiving the cocktail, I saw the doctor who delivered the news that my CT scans (abdomen, chest, and pelvis were all clear). Praise God!! Feeling okay right now after chemo, just a bit sleepy. We'll see how the Neulasta, along with the other effects, rear their lovely heads over the next few days. Prayers please, as always.
12/17/2015-Decided it was time to shave my head and face the music.
1/11/2016-Went in for 3rd treatment. UGG. Spoke to the doctor first. Asked him to reduce the Decadron. Agreed! From 10mg to 4mg dosage. YAY! It still worked and I was able to rest and live. Praise God. I jokingly told him if he felt like dropping some of my treatment, to feel free. Guess what?! He agreed! Agreed to drop my 6th treatment meaning that I now only have 2 left and in March I'll be able to begin the reconstruction process. Additionally, he agreed to schedule me for a brain MRI to just double check for any spread. Anxiously awaiting.
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Old 04-18-2016, 09:41 AM   #2
jra40
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Re: On Tamoxifen, Herceptin, Percocet at night, and saline expanders. So much pain!!

Sorry to hear about your pain! How long have you been on Tamoxifen? I had to get off of it, caused me terrible joint pain.
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11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 04-24-2016, 06:42 PM   #3
SoCalGal
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Re: On Tamoxifen, Herceptin, Percocet at night, and saline expanders. So much pain!!

I've not taken it, but am guessing the tomoxifen. Have you tried walking 20 minutes, (with purpose, at a good pace) twice a day? It really can help pain and overall sense of well-being (as I'm limping around the block again)...
)
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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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