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Old 07-09-2011, 08:08 PM   #1
ugagirl29
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Unhappy depression with new diagnosis

I was diagnosed with inflammatory breast cancer in December 2010. On July 5, 2011, I was told that it has now spread to my brain, liver and lungs. I am 36 years old and have a 4 year old and a one year old. I also have a wonderful husband who I know is worried. I had Her2 positive inflammatory cancer and I am still on Herceptin. I had my surgery in May and started radiation not long after that. I have now started radiation on my brain and will be staring chemotherapy again. I could use any encouraging news at this point.
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Old 07-09-2011, 09:49 PM   #2
Trish
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Re: depression with new diagnosis

I'm really sorry to hear your news-it is particularly hard when you are so young and have such young children. I'm so pleased you have a supportive husband, though- that means you can work with this situation together. A lot of us have been living with Stage IV disease for a long time and there is a thread devoted to it which is worth searching. I have pretty active treatment for my mets (liver and bones since 2006) but some people on this site have quite stable disease. There are a lot of treatment options and lots of reason to be hopeful that you can live with this as a chronic disease-at least until a cure becomes available. All the best with the challenge of juggling treatment and family life. I hope you can find lots of support to help you through.
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 07-10-2011, 10:32 AM   #3
chrisy
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Re: depression with new diagnosis

Certainly you have reason to be scared and depressed. But as trish says, there is also reason to be hopeful. Do not lose heart. There are many treatment options available to you which can be effective; and more are on the way. The game has changed for you (it is now a marathon instead of a sprint) but it is NOT over!

Hang in there
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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 07-10-2011, 10:44 AM   #4
ElaineM
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Wink Re: depression with new diagnosis

I am sorry to hear of your diagnosis. It is difficult at any time, but especially when a person has young children. However, as the other members wrote there are many people here who have lived a long time with mets to all the places where you have mets. There are many treatment options available and more are being developed regularly. The idea is to be as proactive, as positive and as aggressive as one can be, so one can live many more years. Good luck and good health to you and your family. Feel free to drop by our little site anytime. You are welcome here.
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Old 07-10-2011, 10:27 PM   #5
yanyan
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Re: depression with new diagnosis

I am also 36 with a 5 year old daughter. It is not easy. Try to stay strong and positive things happen. Lots of hugs((())). This is a great support group.
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 07-12-2011, 03:52 PM   #6
Jackie07
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Re: depression with new diagnosis

Hi,

Be sure to check out the Inflammatary Breast Cancer Forum on the Board. I've been busy revising the list of Stage IV survivors in 'Calling all Stage IV Sisters" http://her2support.org/vbulletin/showthread.php?t=48453 Also, there's a Young Survival Coalition link in this Conference webpage http://www.c4yw.org/

There are quite a few 'young' survivors on this Board, you can find some of them just by glancing recent postings in the 'New Commers Club/Welcome Wagon' page.

It's sacry. But the treatment is doable and the cure rate is quite high these days. (Ignore old statistics - especially regarding Her2 because now we have Herceptin and Tykerb and many other 'targeted' medicine and/or special delivery method such as T-DM1.)

Be sure to exercise. Walking 30 minutes a day can do wonders. Exercise increases the release of endorphin which not only makes us 'feel' better, it actually aids our immune system.

Sending you good vibes. Do keep us updated.
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7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
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Last edited by Jackie07; 07-13-2011 at 06:07 AM..
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Old 07-15-2011, 07:26 AM   #7
schoolteacher
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Re: depression with new diagnosis

Hope to hear from you soon.

Amelia
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