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11-13-2008, 01:50 PM
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#1
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Senior Member
Join Date: May 2006
Posts: 85
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Finally!
Hi All,
Well, after 6 months of torment for my wife, we are are on the upswing. She has been battling effects from mets to the sacrum this year. Our previuos oncologist( yes he's gone!) did not take the care necessary as you all know we tend to be to faithful sometimes. His poor efforts to diagnose the problems and the pushing of more pain meds has caused my wife maybe irreputable damage to her right leg and foot. I think they see a stage IV patient and sometime do not go the extra effort. She has been living well for 5 years up to this point and for the most part stable. The mets in her back just starting impidging on her S! nerve(still trying to determine the exact locations.
Good News,
We found a new oncologist. She is great. She calls us back directly, responds to our emails in a day, and CARES! She diagnosed the name of the problem in two days. Cauda Equina SYndrome. We had radiation on the sacral area and the pain is going away, Kathy is in higher spirits, she is sleeping all night and overall better 1000%. The new onc has scheduled a slew of people to see from Neurologists( who think they might help with the foot drop paralysis), Bladder doctors and, new mris. IIn a matter of a couple weeks this has been accomplished. Oh, by the way, she also eliminated Carinoma Menigitis - Big news - good
Our new Oncologists is switching Kathy from maintenance Herceptin to Tykerb and Xoleda. Can anyone relate side effects for these. Today she is having headaches and a little dizziness.
Just to express my happiness!
John _ Husband and caregiver
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11-13-2008, 02:01 PM
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#2
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi John! Thanks for posting the good news! We need all we can get. I know quite a few of the ladies here have been on Tykerb and Xeloda at various times. I'm sure you will get plenty of responses and advice. I know they both can cause diarrhea, so that needs to be controlled constantly, and Xeloda dosages can be adjusted without having to stop it completely if there is a side-effect problem. Glad to hear about the good doctor!
__________________
For Nicola
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11-13-2008, 02:39 PM
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#3
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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John,
This is very good news about Kathy. I'm glad you've switched oncs, as this can really make a difference.
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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11-13-2008, 03:46 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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John, I can't help with your question but am glad Kathy finally has some answer's and an Onc she can trust.
It never fails to amaze me how there can be such a difference in care from one Dr to another.
I hope Kathy continue's to improve and the side effects are manageable. Thanks for the good news, badly needed this week!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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11-13-2008, 06:03 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Wow John, that is terrific news - and well past due. Thank goodness you finally found a doctor who was willing to look for answers!
__________________
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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11-13-2008, 09:34 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 3,142
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Finally
Congratulations !! I am glad your wife is on the road making progress again.
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11-13-2008, 09:42 PM
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#7
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Good work.
Keep up the good work. Take charge and do what you need to do. Looking forward to the updated physician's guide Joe's working on!
Best wishes, Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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11-13-2008, 10:28 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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John,
How wonderful, I am strongly agree in having second and even third opinions to make sure all is being done that can be done, I have also discovered that not all
onc. are on the cutting edge or have the experience we
expect.
Thank God you went the extra mile...so happy for you
and your wife, so glad she is out of pain.
Kind Regards,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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11-14-2008, 12:35 AM
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#9
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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John, I am so glad to hear Kathy is doing so much better. It sounds like you have struck gold with this new oncologist...what a real blessing for you both. Thats so nice to know Kathy's pain has finally been taken care of...this oncologist is a real keeper! It's alot less stressful dealing with this daily when you know you have a doctor you can count on, & one that really cares. Keep us updated on her progress.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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