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03-13-2013, 06:35 AM
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#1
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Senior Member
Join Date: Jun 2012
Location: San Diego
Posts: 33
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Tdm1/kadcyla and Tykerb
Is anyone on these drugs together? I am currently on TDM1 and my neuro onc wants me to add tykerb because of my brain mets. He wants to try tykerb on the brain mets before radiation. I would like to hear if any one as this combination and if your ins approved it.
Thankyou!
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03-13-2013, 05:58 PM
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#2
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Tdm1/kadcyla and Tykerb
I have never taken TDM1 or tykerb, but I had a brain met. The met was treated with surgery and then 5 dosages of IMRT, or targeted radiation. It was a little too big (2.6 cm) and too deep for just one shot of stereotatic radiosurgery (that is, each tumor gets just one shot of radiation). I remember being very disappointed and needless to say, frightened about the surgery, as it seemed that several women on this board were able to have SRS.
Targeted radiation can be used even if you have several brain mets. Each met is individually targeted. There are a few types. One is Cyberknife, another is IMRT. If you decided to do brain radiation, ask your oncologist about using targeted therapy.
TDM1 has a good side effect profile, and tykerb crosses the blood brain barrier.
Good luck with your treatment!
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!!
Last edited by Joan M; 03-13-2013 at 06:01 PM..
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03-13-2013, 09:47 PM
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#3
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Tdm1/kadcyla and Tykerb
I don't know but you may be the first. I'm very interested so keep us posted. Wishing you a quick return to NED!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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03-20-2013, 03:14 PM
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#4
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Senior Member
Join Date: Jun 2012
Location: San Diego
Posts: 33
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Re: Tdm1/kadcyla and Tykerb
Thanks. My ins just approved them both so I will add
Tykerb next week to my TDM1 dosage. I will let you know. If there are any others on this como, would love feedback.
Joann,
I have had targeted radiation in the past. My onc now wants to try high dose tykerb for a month before trying targeted radiation again.
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03-20-2013, 05:28 PM
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#5
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Tdm1/kadcyla and Tykerb
sdgirl , you are the first I've heard of, but have thought it makes sense to try . Praying for great results. what ins do you have ? i think we should start praising the pro-active, flexible ins co's , not just the cheap, looking for way out of paying ones.
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03-20-2013, 05:56 PM
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#6
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Senior Member
Join Date: Jun 2012
Location: San Diego
Posts: 33
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Re: Tdm1/kadcyla and Tykerb
Phil,
I have Cigna. I am surprised they approved them both. I did not expect to get tykerb approved with tdm1. Also, thank you for all the work you have done and continue to do for tdm1.
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03-22-2013, 09:54 AM
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#7
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Senior Member
Join Date: Sep 2010
Location: New hampshire
Posts: 44
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Re: Tdm1/kadcyla and Tykerb
This is very exciting! Kudos to your ins. co., and to your creative oncologist! I had a great response in my brain to Avastin, and wish there was a way to combine that with Kadcyla. The diarrhea from Tykerb was awful for me, and no big s/e from the Avastin...
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04-11-2013, 03:36 PM
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#8
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Tdm1/kadcyla and Tykerb
Sdgirl
I would love to hear how it is going on kadcyla and tykerb. I just started kadcyla and was told to stop the tykerb I had been taking. I wanted to be proactive and try to prevent brain mets if possible but was told there is no precedence for them togeher and should hold the tykerb. I really had no symptoms from the tykerb so I hope you are sailing along and doing well with them combined. It seems to make sense to put them together as they combine herceptin and tykerb regularly.
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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04-11-2013, 03:54 PM
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#9
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Senior Member
Join Date: Sep 2010
Location: New hampshire
Posts: 44
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Re: Tdm1/kadcyla and Tykerb
Just wondering what dose of Tykerb you take with Kadcyla, and how it is going?
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04-12-2013, 02:03 PM
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#10
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Tdm1/kadcyla and Tykerb
anmask
I'm guessing you're asking sdgirl but if not, I was on 1250 Mg (5 pills).
Cat
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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04-12-2013, 05:05 PM
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#11
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Tdm1/kadcyla and Tykerb
I'm about to go on Kadcyla, and just went off Tykerb.
Tykerb crosses the blood/brain barrier, but has it been shown to actually do any good in the brain?
I just want to say I think Kadcyla is a dumb name for TDM-1. It makes me think of "Godzilla."
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-12-2013, 06:59 PM
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#12
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Tdm1/kadcyla and Tykerb
Yes I agree it's a weird name. Who thinks these things up? Someone I know said the same thing. "I'll remember Godzilla with a k".
Good luck on the "Godzilla" treatment. Mine is so far so good.
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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04-12-2013, 09:10 PM
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#13
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Tdm1/kadcyla and Tykerb
No symptoms on Tykerb? Lucky you! This may be TMI, but I had forgotten what normal elimination was like. And fingernails.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-13-2013, 06:37 AM
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#14
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Tdm1/kadcyla and Tykerb
Herceptin made my hair grow slower (when I had hair!). I'm not totally sure what caused what because my gastro system was all screwed up from the colon blockage a year ago. When I was on tykerb before it was a no brainer, mostly my nose ran (herceptin). When I put abraxane in my nails went and my skin was dry. I had small pimple like things crop up on my face, arms and legs here and there. I used cetaphil wash and lotion and was on low dose maintenance antibiotic and they all helped. My bowels eventually normalized but recently blocked again with this recurrence. Feeling better after 1 Kadcyla so I'm keeping my fingers crossed.
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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04-13-2013, 08:12 AM
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#15
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Senior Member
Join Date: Jun 2012
Location: San Diego
Posts: 33
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Re: Tdm1/kadcyla and Tykerb
An update on me. I have been taking tykerb and TDM1 together for three weeks now. I have increased diarrhea and nausea and also feel more tired. Also have pimples like rash on skin. I had tumor markers done on Friday. Do not have results yet and will find out if this combination is working. I also have a brain MRI in two weeks. We added Tykerb since we think TDMI on its own may have stopped working as my tumor markers doubled even though I had good scans. The combination is doable but is much harder than doing TDM1 alone. I expected that but what choice do we have. Just have to suck it in and carry on with the diarrhea, nausea, fatigue. My liver enzymes had also gone by 10 points yesterday. I take 5 pills everyday. Hopefully it is because of tykerb and not my liver mets. I will update once I find out my tumor markers. Fingers crossed.
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04-13-2013, 12:24 PM
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#16
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Tdm1/kadcyla and Tykerb
So sorry you're going thru so much but hopefully it's all worth it.
You said you're getting red spots from tykerb? It makes me wonder if that's what caused mine too. I assumed it was the abraxane. Like I said tho, I had so much going on I didn't know what's what.
I hope we don't get cramps from crossing fingers so much!
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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04-16-2013, 08:15 AM
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#17
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Tdm1/kadcyla and Tykerb
red dots can be due to low platelets. L. has them, a chain of dort sacross upper right collr bone, individual ones elswhere , and a red area on inside of wrist. has had them all along as plats dropped below 100,000. maybe tyk. adds to tdm-1's plat effect. you are breaking new ground with this combo. Good Luck !
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04-16-2013, 08:20 AM
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#18
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Senior Member
Join Date: Jun 2012
Location: San Diego
Posts: 33
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Re: Tdm1/kadcyla and Tykerb
My platelets are normal. I will probably be stopping this combo. My tumor markers went up for the second time on Friday and rising TM always mean progression for me. I have scans next week to confirm. My last scans on March 12 indicated regression so looks like the cancer is growing fast suddenly. I am so disappointed. I loved being on TDM1.
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04-16-2013, 09:34 AM
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#19
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Tdm1/kadcyla and Tykerb
I am so new to this group, however I've been doing ALOT of research AND praying each day for many of you as I see new threads...
I JUST found online "PracticeUpdate" that has so MUCH interesting, knowledgeable information, articles, etc from doctors...well worth the time to take a look at!!
I was reading about how this crosses the BBB...into CNS...more likely than other areas...
I'm questioning if it is more of us who are HER2+++ ER/PR NEG...thoughts anyone...rather than ER/PR positive...
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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04-16-2013, 11:05 AM
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#20
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Tdm1/kadcyla and Tykerb
I know KDR's tumor mrkers went up while on t dm-1/pert, but no progression. Praying for good scans and a good tx plan for you . you sure seem to have a good doc, staying on top of things , using the latest tx's , and flexible tx., utilizing off label combos . thats what you late stage iv folks need, if only we had an FDA System that allowed it...
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