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Dear Benk,

I'm so sorry your beloved has hit this road block. It must be especially scary with a small child.

The best advice I got when I was diagnosed in 2011 is "don't worry about anything until you have to." I have learned to live one day at a time.

I haven't spent much time at "NED," (which means "no evidence of disease") but my cancer has been pretty stable, and I have a good quality of life. My diagnosis was before Perjeta. Adding it has been good for me, though I've also had periods of time on other chemo drugs.

A metastatic cancer diagnosis has a way of focusing the mind, but it's best to focus on living, and on gratitude, and on what's truly important.

The people I've known whose approach to cancer most inspired me had "grit, grace, and gratitude." A hefty dose of denial is also extremely helpful. I never exactly forget I have cancer, but, believe it or not, I'm kind of used to it now, and it doesn't run my life, nor has it ruined it. I'm still here, and still doing well, so cancer and I appear to have found a way to co-exist, at least for now.

__________________
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

05-10-2016, 07:31 PM	#12
Mtngrl Senior Member Join Date: May 2011 Location: Denver, CO Posts: 1,427	Re: Looking for hope Dear Benk, I'm so sorry your beloved has hit this road block. It must be especially scary with a small child. The best advice I got when I was diagnosed in 2011 is "don't worry about anything until you have to." I have learned to live one day at a time. I haven't spent much time at "NED," (which means "no evidence of disease") but my cancer has been pretty stable, and I have a good quality of life. My diagnosis was before Perjeta. Adding it has been good for me, though I've also had periods of time on other chemo drugs. A metastatic cancer diagnosis has a way of focusing the mind, but it's best to focus on living, and on gratitude, and on what's truly important. The people I've known whose approach to cancer most inspired me had "grit, grace, and gratitude." A hefty dose of denial is also extremely helpful. I never exactly forget I have cancer, but, believe it or not, I'm kind of used to it now, and it doesn't run my life, nor has it ruined it. I'm still here, and still doing well, so cancer and I appear to have found a way to co-exist, at least for now. __________________ 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