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Old 07-27-2007, 08:06 AM   #1
DEBBIE S
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Location: ALEXANDRIA, VA
Posts: 40
Need Encouragement

Hi Everyone, I just got news the other day that the regiment I started again back in April is not working .... My most recent Pet Scan showed I have 20 or more nodules in both lungs and an area in my right axillary ...
and of course the cluster in my pec area is still there ... I will start back on the harsher chemo, Taxol & Carboplatin with Hercp next week and do this every 3 weeks and get another pet scan after about 4 treatments...
I know many on this site have had met to their lungs but I find it much
more bothersome than other areas ... I know that this is just another area that cancer spreads to but I think because I have lost both of my parents to " Lung Cancer " (not breast) it is more scary .... I know many here have done treatments that were very successful in the lungs and I just need to stay positive..... I also want to say I vey much like the way
the site looks now ... Joe has done a Great Job .... I just wanted to share
this since I know this group of people are so caring and can always lift ones spirit ...

God Bless,

Debbie
__________________
dx stage 4 ... 11/04
3.2 cm mass breast & liver mets..
her2 +++ ; er- ; pr -;
11/04 treated with hercp, taxol & carboplatin - every 3 wks
3/05 ned - stopped chemo; hercp only
5/05 reoccurence left breast
6/05 added navelbiene w/ hercp every other wk
7/05 mascetomy
12/05 ned ; same regiment- every 3 wks
3/06 & 7/06 ned
9/06 stopped navelbiene.. hercp only.. every 3 wks;
10/06 pet scan shows positive lymph node in pec
12/06 PET no change;
4/07 scan showed 4 abnormal nodes in right pec area ... these have increased in activity since last scan... will start back on weekly navelbeine & hercp
7/07 PET done ..this time it showed new nodules in both right & left lung area as well as increased activity in pec area..
8/07 started Taxol & Carboplatin with Hercp every 3 wks
10/07 PET done ...Great Report ... NED ....
11/07 continue with Hercp every 3 wks & do Taxol & Carboplatin every 6 wks
4/09 still on same regiment; 1 positive node in left lung and right pec area
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Old 07-27-2007, 10:01 AM   #2
doh2pa
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Location: Chadds Ford, Pa
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Hi Debbie,

I was reading your history and wondering why your onc has not suggested Tykerb/Xeloda. I started this regimen back in May for lung and liver mets and have had amazing results. After just 6 week, my lung mets were gone and liver mets are half the size. I also find this the easiest regimen I have ever been on - little or no side effects.

Donna
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 07-27-2007, 10:28 AM   #3
Adriana Mangus
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Location: California
Posts: 668
Question Question

Hi Donna:

Did you become resistance to herceptin, or just wanted to try a better "cocktail" for the mets. I suggested to my onc this combo you are on and he believes that I should continue on Herceptin until I developed resistance, since it's such a wonderful drug. I "ony" have mets to rt lung-for now- keeping an eye on the brain for the moment- have a MRI brain on 7-31-07. I appreciate a response. Thank you.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 07-27-2007, 10:31 AM   #4
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Talking Hello Debbie

It is my husband who has Stage IV Inflammatory HER2+ breast cancer, he has mets to all bones and now the brain. I cannot offer any advice about the lung issues you are having but I can keep you in our prayers.

After whole brain and pelvis radiation he shall be scanned in case we need the gamma knife procedure, then it is off to Tykerb/Xeloda, as Donna has mentioned she is on. This combination has helped many of my friends on the site and directly in my life. Just a thought to suggest to you and your dooctor.

Many women here have had lung mets and I know they can give you more support than I, but I had to reply to you because I have heard that worry in my sweet husbands voice. What I do know is the feelings that you are sharing (especially because of your parents histories), even though I am not the one ill. You have come to the right place for feedback, prayers and the support you so much need right now.

I am going to include you in those prayers and positive vibes will follow. Keep the faith as much as you can through this new road of your journey, we shall be right here for anything you may need!!

Waiting For A Miracle....and commanding one soon!!!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 07-27-2007, 06:17 PM   #5
tousled1
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Debbie,

I couldn't agree with you more about lung mets being very scary. I was just diagnosed with lung mets and had my first treatment today. I'm getting Herceptin weekly and Taxol/Carboplatin weekly (3 weeks on 1 week off). I feel good other than being extremely tired but I think that's from the premeds and the fact that my hemoglobin was down again. I will have a scan done in 8 weeks to check how the treatment is working. If it is working, we'll stay on this regime. If it's not, then we'll try something else but I'm not sure what. I don't really want to think that this regime will not work.

All I can say is to try not to worry (easier said than done) and try and think positive. There are many women here who have had lung mets and are doing fine.

We are in this fight together and we will win!
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 07-27-2007, 08:59 PM   #6
lexigirl
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Debbie,

I haven't been diagnosed w/ lung mets. There seems to be some other combos that may knock this cancer on its butt. Hang in there.

Hugs and Prayers,
Lexi
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Old 07-28-2007, 02:59 PM   #7
Lolly
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Debbie, I know it's discouraging when you have to switch treatments, but the TCH is a very strong combo. Hopefully you will be able to get back to maintenance Herceptin after you get these lung mets under control. Remember that Tykerb is waiting in the wings if you need it, but for now concentrate on TCH doing it's work and try to stay strong. I have a chemo buddy with lung mets who's done very well with various chemo combos added to her regular Herceptin as needed.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 07-28-2007, 07:28 PM   #8
CLTann
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Posts: 476
Just in case you may not be fully aware, lung mets from breast cancer are very much different from lung cancer. The mortality rate of lung cancer is very high but that of breast mets is much much lower. Lung mets are treatable as evidence from many ladies on this forum. Therefore, you case is totally different from those of your parents. Stay positive, the strong chemo combinations plus herceptin will be the magic bullets for you. Good luck.
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Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 07-29-2007, 04:50 AM   #9
Kathy S in Tokyo
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Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
Ann said everything I was just thinking

Breast cancer in your lungs is different from lung cancer (even if we all agree that neither is particularly welcome!). I'm on weekly Herceptin and 3weeks on and one week off of Taxol for a while for my lung mets. I had a CT scan last Tuesday before my IV and will see and discuss the results this Tuesday. I have a feeling that they'll be good because my oncologist usually calls if he thinks we need to change the regime instead of waiting a few days for my next scheduled visit and I didn't get any calls last week. He encourages me with the wide array of therapies that are available should I reach my limit with the Taxol. I hope that your new regime shrinks the mets so the Herceptin maintenance can keep you clear.

Hugs,
__________________
Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started
Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
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