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Old 02-04-2007, 04:31 PM   #1
Ceesun
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Stage 4 Staying Upbeat...how to?

Gals, How do you stay so upbeat when at this stage? I tell myself I only go round once in life so I should not waste my precious time with worry. But at times, I do. I have received good news that my 2 lung nodules are no longer visible ( no longer appreciated on this study--ct scan) but I worry so about the bones, liver, the brain. It is so hard that I worry about more bad stuff happening. Lately I am afraid to make long term plans-how do you get over that and go on? Sincerely, Ceesun
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Old 02-04-2007, 05:01 PM   #2
Mary Jo
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Hi Ceesun,

I cannot relate with the stage 4 as I was stage 2 BUT I can relate to the worry. It is something that becomes easier with time as I think we learn to live with the uncertainties of our life. I always say to non-cancer people when they start to show pity to me (and I HATE that) that the only difference between them and me is that I was given a diagnosis that forced me to look at my mortality. NONE of us no from day to day what will be. No one! Only God knows the number of our days. For whatever reason we have this disease. We can choose to worry our time away or grow and blossom where we are planted. I know that sounds sappy.............and I don't mean for it too..............but choosing to grow, blossom and live life to the fullest is the only way I can live. When those worry days come a long (and trust me they do) I pray - try to let it go and live my life as if it were my last. Because truthfully, NONE of us know if it may just be that. Even non cancer people don't know.

Loving you in Jesus and praying for Peace for you,

Mary Jo
"All the days ordained for me were written in your book BEFORE
even one came to pass." Psalm 139:16 (that verse gives me hope as I believe I am right where I am suppose to be and what will unfold will unfold with or without anything from me.
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 02-04-2007, 05:20 PM   #3
Sheila
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Ceesun

As a stage IV person, I take each day, live my life to the fullest. Whenever I get down or start having worry consume me, I look around at all I have been blessed with...so many people do not have the blessings in their life I have had...family, children, grandchildren, blue skys, green grass....my list could last forever. I try not to think of the what ifs, and live in the moment...plan for the future and try to remain positive....it is my hope, my destiny.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 02-04-2007, 07:08 PM   #4
Colleen007
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Hi Ceesun,

Since I was initially diagnosed at Stage IV, I don't know breast cancer any other way. But, I have learned to just take each day as it comes and to really appreciate all of the people and things that are most important in my life. I have a husband and 2 young children who need me, so I am doing everything in my power (and my medical team's) to fight this disease with everything I've got. Yes, that involves chemo and some of the feeling down time that comes along with it, but I know that there are plenty of days in each cycle where I feel pretty darn good, and really try to do things that make me happiest on those days. I get anxious whenever I have scans (and "what if" something new shows up), but I try to limit that worry to scan time...otherwise, I'd be a wreck. I know that I am not going to die tomorrow, so we have made some plans for later in the year...gives us something to look forward to...and once I make it to that point, we'll plan the next fun memory making opportunity.
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Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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Old 02-04-2007, 07:37 PM   #5
chrisy
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Dear Ceesun,
Great question! When you find the answer, let ME know! I've always been basically an upbeat person, but this is definitely a challenge.

I do as you do - try to just live my life one day at a time. When I got the Stage IV diag, I decided I was going to continue to live my life NOW, because tommorrow is so uncertain. And boy, would I feel stupid if I lived another 40 years but "missed" it by spending all my time worrying and being depressed. I guess the same thing would apply to making long-term plans, although I admit I'm still working on that myself!

So I just try to live a "normal" life, one that is worth living, and have been lucky enough to be able to do this.
When I start having a pity party and ask "why me?" I always somehow end up laughing at myself, because as unfair as living with cancer is, it's no more unfair than me having a great job, wonderful hubby, and all the other things that make me feel as if I've led a charmed life.

Of course I do worry and get down from time to time (my twisted thinking on a "good" CT scan sometimes includes thoughts like "now I'm one more scan closer to a 'bad' one")! We'd be crazy not to worry EVER! When this happens, I try to focus on things that make me hopeful, for instance long time survivors, new areas of research, etc - one reason I hang out on this site. This helps me maintain a healthy sense of denial! LOL. Seriously, there truly is so much hope out there - even my rockstar oncologist says bc is becoming more of a chronic disease that can be managed for maybe a long time. I mentally add, "maybe long enough for them to figure out how to stop it for good".

It is definitely not easy - we must be very special to be given this much to carry!

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 02-04-2007, 07:40 PM   #6
Brenda_D
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Honestly, I had to get away from the BC forums for awhile because they are a constant reminder of my situation.

I love the forums because they are a source of info and support and at the same time I had to get away.
I hope that makes sense.

For a few days I got to go back to "before BC" and think about gardening, and flowers, and such.
Getting back to what I loved before (and still do) is a way for me to cope and feel like I still have a life.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 02-04-2007, 08:52 PM   #7
Vanessa
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I sometimes find it hard to be upbeat also. I find that being around people is really helpful whether it is at work or with family or friends. At night is when I have the worst time. I also try to watch funny movies or tv shows and read funny books.
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Old 02-04-2007, 11:14 PM   #8
jhandley
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Smile keeping upbeat

I find that keeping busy helps and also I notice a definite lift in my mood when I take flaxseed oil daily (1 tablespoon mixed with milk and milo). Not only is there a link between omega 3's and depression; it looks like they also help the hercetpin work better as well. Also they cross the blood brain barrier so maybe will keep mets away there.

What I find hardest is not having a partner and I havent gone looking due to being stage 4 and being a single mum.

But community helps a lot..being with people and doing things that take your mind off things...I hope to be alive for a long time and live my life accordingly.
Cheers
Jackie
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Old 02-05-2007, 01:19 PM   #9
MJo
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I was stage 1, and I hope I won't recur. But I am asking myself "what next." Part of me thinks I need to REALLY DO SOMETHING with my life...redecorate the whole house, write a novel, make a difference like Lance Armstrong So far, all I can think of is that I want to create another planting bed this spring and I'd like to go on a cruise and be out in the middle of the ocean.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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