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Old 06-16-2010, 06:35 AM   #1
Delaney
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Join Date: May 2010
Location: Ireland
Posts: 271
Any lung mets survivors??

Hi,
Can never seem to see a post from lung met survivors, very scary as have just been diagnosed with that. Asked oncologist how big it was and he said 'we dont deal in size'. not very reassuring. anyway hoping herceptin/taxotere will control it. would love to hear of anyone who has been treated successfully. I realise its incurable now (he told me) but is it manageable? he says they have a lot more drugs in store for me if the t&h stop working. have to believe these drugs will work, otherwise will crack up. any help would be really appreciated.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 06-16-2010, 04:53 PM   #2
chrisy
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Location: Central Coast, CA
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Re: Any lung mets survivors??

Don't crack up yet! Believe the drugs will work - because many people respond well and for a long time to the combo you are on. Believe you will be one of them.

There are several ladies active on this forum who have been living with lung mets for years; as well as some who do not post much any more because they are too busy living active lives

Hopefully some will see your post and chime in. Do not lose heart.
Chris
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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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Old 06-17-2010, 03:30 AM   #3
Delaney
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Location: Ireland
Posts: 271
Re: Any lung mets survivors??

Thanks Chrisy,
Was getting freaked out with no replies. Love your photo!
Cheers.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 06-17-2010, 06:55 PM   #4
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Re: Any lung mets survivors??

Delaney,

It must be terrifying receiving a diagnosis of lung mets coupled with your doc's uplifting prognosis! Gotta remind myself they lump us into statistics, however you do not have to settle for being a statistic! Seriously, a positive attitude takes you a long way in this fight. Look at some of the folks here who have battled for years and plan to fight on until they lick it or master it through that one great drug.

Stay here with us. Be proactive. Research. Modify your lifestyle and diet. Supplement and above all .....DO NOT GIVE UP!

Glad to have you among us, Delaney. I am truly sorry it is under these circumstances, but regardless we are happy you have found us! Welcome.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
9 Years NED
I think I just might hang around awhile....

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Old 06-18-2010, 04:13 PM   #5
Rich66
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Location: South East Wisconsin
Posts: 3,431
Re: Any lung mets survivors??

It's fairly common for oncs to only mention drugs. As Joan M (here in forums) would tell you There are other approaches to consider:
http://her2support.org/vbulletin/sho...ight=lung+mets
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Mom's treatment history (link)
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Old 06-20-2010, 06:07 AM   #6
Delaney
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Join Date: May 2010
Location: Ireland
Posts: 271
Re: Any lung mets survivors??

Thanks everyone, have more questions to ask next time I sit in front of my oncologist now.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 06-20-2010, 12:46 PM   #7
Emelie B
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Re: Any lung mets survivors??

Hi Delaney,
Don't give up yet! I was diagnosed in Feb.2010 with mets to lots of places and one was my lungs. I did the weekly Taxol/Herceptin and I am now NED.
After about 4 weeks of treatment I was breathing easier and felt better overall. Think NED lady!
Stay positive and keep in touch.
Emelie
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Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 06-23-2010, 12:48 PM   #8
Janet Taylor
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Join Date: Oct 2007
Posts: 17
Re: Any lung mets survivors??

I have had lung mets appear 3 times within the last 5 years. ( my original diagnosis of BC was in 1993; I went 13 years before it metastized) 3 surgeries have been done to cut out the spots. I have been on herceptin for most of those 5 years. I also did a bit of time with Tykerb and Xeloda. I have PET scans every 4-6 months to continue to watch for new disease. My tumor markers never indicate new malignancies. I continue to lead an active life as a 6th grade teacher. I pray on a daily basis that new medications are developed to meet our stage 4 needs.
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Old 06-24-2010, 02:02 PM   #9
schoolteacher
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Posts: 1,486
Re: Any lung mets survivors??

Janet,

You post is very encouraging. Did your BC have an estrogen component to it?

Amelia
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Old 06-24-2010, 02:10 PM   #10
Janet Taylor
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Posts: 17
Re: Any lung mets survivors??

My BC is ER+.
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Old 07-18-2010, 11:17 PM   #11
turbo
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Re: Any lung mets survivors??

I am one that hasn't been online for awhile...too busy living active life! Lung mets for almost 4 years..er +...NED on herceptin for 1 +1/2 yrs
working part-time,healthy eating and excercise daily....13 yrs since first diagnosis! You will do great!!!
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