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Old 03-21-2012, 03:06 PM   #21
ElaineM
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Wink Re: OH what to do???

Sorry to hear you are under the weather. Please try to keep your spirits up anyway you can. Eat whatever you can when you can. The body needs a little fuel once in awhile.
I have my fingers crossed that your radiologist is right about getting rid of that pesky cancer in your menengies. Sorry about the spelling. Medical words are sometimes nasty to spell, but I know what part of the body you are having trouble with. I have a tiny totally benign tumor in mine that has been there most of my life minding its own business and not any causing problems, so we are leaving it alone.
Take good care of yourself.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 03-23-2012, 12:03 AM   #22
KsGal
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Re: OH what to do???

Lots of prayers and positive thoughts. ((hugs))
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 04-15-2012, 08:23 AM   #23
Rolepaul
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Location: Boulder Colorado as of January 2013
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Re: OH what to do???

The results from last week were even more promising. They show no more active sites in the spine, the sites in the brain are indistinct, no tumor cells in the spinal tap or blood, and overall it looks like we have turned the corner. The radiation at Christmas had similar effects on my wife in terms of a sore back and not feeling chipper. Her back is still sore, there is pain in her ankle that is due to the lower back nerve cells (doctor's assessment). They reduced the topotecan to once per week and the navelbine to once every two weeks. The doctors are preparing the MRI results and treatment plan for a paper in a journal, and to get funding for a new large clinical trial. I hate that others are not seeing progress in their treatment. I hope that you see the same success in yours. Please note, under 50 mg Herceptin per week has not seemed to be effective in the cases that I investigated. at 80 mg per dose, the hospital bills this at $US1800 just for the drug.

Let me know how you are doing.
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Old 05-29-2012, 06:17 AM   #24
Rolepaul
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Location: Boulder Colorado as of January 2013
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Re: OH what to do???

To all,

Jacqui (Kiwigirl) passed on last Tuesday after a tremendous fight. Please send an email to her husband Greg in New Zealand at gregdrag@gmail.com to let him know the support that this site can give and the strength Kiwigirl showed.
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Old 05-29-2012, 07:50 AM   #25
Mtngrl
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Re: OH what to do???

So sad to hear this. I emailed Greg.
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Amy
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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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Old 05-29-2012, 09:04 PM   #26
Pray
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Re: OH what to do???

I am praying for Jacqui, her Husband, family and friends. How unbelievably sad! She fought with the best. I'm so sorry and so sad.
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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