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Old 07-07-2010, 03:35 PM   #1
chicagoetc
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What I have learned...

This week has been one of reflecting / thinking about the time since diagnosis and how life has or has not changed. I posted this on Facebook and will here as well. It'd be great to hear from some of you and what you have or are learning. [I can't think/thank all of you enough for the important info/care that has come through this forum...]

Melanie

What I learned:
  • - I know less than I thought
  • - Life can be fragile
  • - Death is real, just ahead
  • - Better to fight for the positive than to avoid the negative
  • - It's impossible to have cancer and be modest
  • - Lots of people have had cancer
  • - It's good to be loved
  • - A smile can change an entire day
  • - I like having hair on my head
  • - I hate Taxol
  • - There's no such thing as a boring bird
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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Old 07-07-2010, 06:35 PM   #2
Sheila
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Re: What I have learned...

And I must add that cancer gives us gifts of friends in our lives that we may never had the joy of knowing..

You are one of those gifts Melanie!!!!!!!!!!!!!!

I also like hair, but mine gets more unruly by the day!!!!
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



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 07-07-2010, 06:43 PM   #3
karen z
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Re: What I have learned...

Thanks for your beautiful post.
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Old 07-07-2010, 07:58 PM   #4
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Re: What I have learned...

Ditto on the hair, Melanie!

What I have learned?

I have learned that the nights are long beyond expression and lonely like an abyss during chemo. That during those long, lonely nights perched in my recliner it was just me and my God soldiering against the foe.

I learned that those nights recede into shadowy memory once life begins anew. While life is now different, because I am no longer immune to my own mortality, it is wonderful and savory, delicious in its sweetness.

I have learned how much my mother loves me, a gift I shall cherish into my old age. Cancer heals as you learn you are valued, treasured even, by the most surprising people. I learned who my true friends were, and who was afraid to pick up the phone, and I learned it did not matter.

I have learned to slow down and enjoy the sun on my face, the feeling of a cool autumn breeze in my hair, of sweat cascading between by shoulder blades in the hot summer heat. I've learned to smile on despite the new woman who stares back at me in the mirror, the woman who doesn't quite look like me anymore, but who grins ridiculously, shamelessly in fact, despite unruly hair, thin brows, and round, fuller cheeks complements of the meds I took and some I continue to take to fight on.

I'd like to think I am grateful for this cancer odyssey. I'd very much like to think I am changed for the better. I'd like to believe I've learned to dance in the rain and love getting wet.
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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

15 Years NED
I think I just might hang around awhile....

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Old 07-07-2010, 08:22 PM   #5
Becky
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Re: What I have learned...

Lovely post Melanie. Sounds like you know alot to me.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 07-07-2010, 08:54 PM   #6
Sherryg683
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Re: What I have learned...

I love this post so I have to add here...what I have learned

That God is with us always and will give us signs if we take the time to look for them. If we are silent and listen. He may not give us the answer we want but he is there.

There are just somethings that are beyond our control and we just have to lay them down at Gods feet.

That having cancer can bring the best and worse out in people. I was surprised that the ones that stepped up for me the most were the ones I never thought would...and visa versa.

That doctors are human and don't know everything. You need to be educated and active in deciding your own treatment.

When I look up at the stars at night, I get a certain peace in knowing there has to be something more.

That I will never ever again say that I am bored with life.

And I finally learned the meaning of true fear (sad to say)
__________________
Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 07-08-2010, 04:37 AM   #7
Pam P
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Re: What I have learned...

Lovely post, Melanie, and thanks for your additions Laurel and Sherry. A great read this morning!

Sometimes I think I've learned nothing, that I'm just muddling through, one foot in front of the other. Yet I've grown, changed, and evolved in these last 9 years. How much is due to the cancer experience and how much is the growing development of a mid-life mind - I'll never know.

I certainly agree with all of your insights and can see those learnings in my life too. I've also become much more 'myself' not feeling the need to conform and please others but to do what is my desire. And, yes, I like having hair on my head too (but don't miss shaving my legs)! Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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