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02-05-2011, 06:08 PM
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#21
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Report on TriciaK
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02-05-2011, 08:55 PM
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#22
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Report on TriciaK
I am so sorry to hear you have unpleasant side effects. Gemzar can contribute to skin rash. If what your oncologist is offering you does not work you might want to see a good dermatologist who is familiar with the skin issues cancer patients have.
I was just reading about low B12 levels. Low B12 can weaken skin cells. Weakened skin cells can be affected by various kinds of skin issues, including side effects from medicines in addition to other things. I never knew that before. Do you want to have a blood test for B12? If yours is low you might want to ask for shots or supplements. Hydrocortisone cream which is available over the counter might be able to reduce itchy skin or edema. Please discuss any things you decide to try with your doctor.
I hope you get some relief soon. Take good care of yourself. I am keeping my fingers crossed and hope you will be back to normal soon.
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02-06-2011, 10:49 AM
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#23
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Report on TriciaK
I forgot to add the Gemzar information website which should also include information about side effects and/or safety information.
www.gemzar.com
I wonder if eating foods that are good for the skin (with vitamin A and C for example)might help your skin cope with rash related side effects?
Take care. |
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02-06-2011, 07:36 PM
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#24
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: Report on TriciaK
Your replies brought tears to my eyes and I feel so encouraged by your thoughts and suggestions. I am not feeling much better, still incredibly weak, but have hopes that this coming week we can find some answers from the oncologist. Just being able to reach out to each other means so much, and I treasure all you have written, the encouragements as well as timely suggestions. It is good to know there are still options available to us in this battle. I am so blessed to have a wonderful husband and a very large family. I have to get better and stay around, as most of our 32 grandchildren are now married and having children. We have 36 greats now, with 7 more due by summer of this year. I have to stay around to meet them all! (You may remember we put two families together 30 years ago). I have been blessed in so many ways, and your friendships mean so much. I will let you know what transpires with the chemo. Thank you again, and God bless you. Hugs, TriciaK
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02-06-2011, 10:17 PM
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#25
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Report on TriciaK
Thanks for checking back in Tricia. Sorry you are not feeling well, I hope this coming week will find fresh answers for you. Keep up that fighting spirit!!
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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02-06-2011, 11:07 PM
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#26
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Report on TriciaK
Tricia,
I'm glad to see that despite this setback your spirit seems unaffected. Take good care and I hope you start feeling better.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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02-07-2011, 09:43 AM
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#27
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Senior Member
Join Date: May 2009
Posts: 510
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Re: Report on TriciaK
Tricia,
You are one of my heroes. May God grant you the blessing of meeting all your new greats - coming from you, they sure are great! 
Sending you love,
Marcia
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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02-07-2011, 09:51 AM
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#28
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Report on TriciaK
Tricia,
Glad to hear from you. Hope you are feeling better.
Amelia
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02-07-2011, 12:42 PM
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#29
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Report on TriciaK
Tricia,
You have a dynasty! Sending you good vibes that you'll feel better soon.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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02-07-2011, 08:10 PM
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#30
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Senior Member
Join Date: Apr 2008
Location: WA State
Posts: 199
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Re: Report on TriciaK
Oh Tricia what an inspiration you are to all that continue to fight this vicious foe. Sending up prayers right now for you and that our loving Lord will provide you strength and comfort. God bless.
__________________
Cindy
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008
Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!
I am calling this my pink journey
Follow my journey into the pink at my blog here
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02-07-2011, 09:30 PM
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#31
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Senior Member
Join Date: Oct 2010
Location: Perth Australia
Posts: 45
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Re: Report on TriciaK
Hi Tricia
You have a great attitude so keep fighting and I send you warm sunshine from Perth. Hope to hear good news very soon.
Best wishes
Diane
__________________
adenocarcinoma ductal grade 3 DX Oct 2001 2mm grade111. Level one two out of four lymph nodes positive. ER strongly positive PR strongly positive HER2 staus not known. Chemo FEC six courses Radiotherapy course. Arimidex 5 years. Recurrence April 09 Liver, Lungs & Bones May 09 Liver Biopsy ER status changed to negative PR status changed to negative. HER2 now+++May09 Docetaxol 6 cycles Herceptin and Zometa added.Disease stable for 17 months Scans Jan 2011 one of the tumours in right lung has grown significantly scan due in April 2011 to check lung tumour. Current treatment Herceptin & Zometa February 2011 unwell so hospital. DX inoperable Brain mass 11x8mmx12mm left of midline. from lungs and heart March 2011 Gamma knife treatment to brain met.March2011Tykerb/Xeloda/Zometa
March 2011 Severe allergic reation to Tykerb July 2011 New met in lymph glandineck.July2011Navaline/Herceptin/Zometa
August 2011 Necrosis in brain
Herceptin/Zometa Oct 2011 considering Avastin for Necrosis
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02-07-2011, 11:35 PM
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#32
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Report on TriciaK
Tricia,
Thanks for keeping us in the loop. Sending prayers and strength from my heart to yours...
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.
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