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Old 09-12-2014, 04:45 AM   #1
jkdowl
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Join Date: Jan 2011
Posts: 17
Is it time to switch from Herceptin? So confused

I was dx stage 4 to bones in 2010, have been stable since then. I never had a mastectomy until 2 months ago, the left breast started increasing in size. After a biopsy that confirmed IDC ER PR neg, HER-2+++, (same as original), I had a left mastectomy last week.
No lymph nodes were in involved, clean margins. 3 small IDC tumors, extensive DCIS, lymphatic invasion, no vascular invasion.
Now we are discussing radiation +\- changing up chemo regimen.
My oncologist initially said that I would be able to stay on herceptin bc all my other scans are still stable. Now she is changing her tune, she said that if the tumors in the breast were able to grow on herceptin then it may not be enough for the rest of the body. Of course, I don't want to switch or add anything else, but she is not giving a definite recommendation yet. She wants to present my case to her colleagues first.
Anyone have experience like this?
__________________
40 yo. mom to 7 yo old twins girls and 5 year old son

Dx- 12/6/10- stage IV to bone
Taxol/Herceptin/Zometa
CT scans and bone scan- STABLE 4/19/11, 6/12/11, 10/4/11
Stopped taxol 9/29/11
Continue herceptin,zometa
John Hopkins vaccine trial 4/12-11-12
CT scans and bone scan- NED 4/12, 7/12, 10/12, 2/13,6/13
Brain MRI-clear 6/13
Left breast progression 8/14, Ct scan and bone scan-clear
brain MRI- clear
Mastectomy left breast 9/14

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Old 09-13-2014, 10:44 PM   #2
waterdreamer
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Location: Thousand Oaks, California.
Posts: 199
Re: Is it time to switch from Herceptin? So confused

Herceptin by itself is not very effective against active cancer. Has she suggested Kadcyla?
I progressed on just Herceptin and went onto Kadcyla after having done Taxotere and Herceptin and then Herceptin alone.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 09-14-2014, 11:24 AM   #3
jkdowl
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Join Date: Jan 2011
Posts: 17
Re: Is it time to switch from Herceptin? So confused

Thanks for the reply, my oncologist spoke to colleagues, they felt with tumor out with mastectomy, I could stay on Herceptin bc still controlling bones and rest of body. They will be watching closely. I'm hoping it keeps working!
__________________
40 yo. mom to 7 yo old twins girls and 5 year old son

Dx- 12/6/10- stage IV to bone
Taxol/Herceptin/Zometa
CT scans and bone scan- STABLE 4/19/11, 6/12/11, 10/4/11
Stopped taxol 9/29/11
Continue herceptin,zometa
John Hopkins vaccine trial 4/12-11-12
CT scans and bone scan- NED 4/12, 7/12, 10/12, 2/13,6/13
Brain MRI-clear 6/13
Left breast progression 8/14, Ct scan and bone scan-clear
brain MRI- clear
Mastectomy left breast 9/14

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