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Old 08-20-2011, 03:17 PM   #1
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I sure could use a pep talk

Hi, I'm feeling like I might be in trouble again! I've been keeping it to my self because it is my daughters birthday weekend and I don't want to make it about me.

I talked to my onc Friday because I have had lower back pain for three weeks (very mild and still have it) I thought it would go away on its own. Also a week ago shopping with the family out of no where my left shoulder started hurting rapidly with in two minutes I was in a lot of pain and it stopped an hour later.( It did happen the day before but very mild) its not in the joint but at the top part of my arm but not on shoulder or under arm. My mastectomy was on the Left! So I didn't think it was that big of a deal. Then Thursday night Just before nine the shoulder pain started quickly again same spot and lasted for seven hours! I was so frightend! My onc. is having me get lumbar and shoulder ct Mon. Please Pray for me! I so don't want to join the Stage four club! (no offence)

I would appreciate any same accounts that turned out to be nothing! Pep talks are always good.
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-20-2011, 03:37 PM   #2
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Re: I sure could use a pep talk

You're doing the right thing by getting the scan. Try not to worry. It doesn't do any good. It will either be something unrelated, or it will be progression. It is what it is.

People keep going with bone mets. A woman in my support group was Stage IV at diagnosis (with inflammatory BC) and she had/has mets to the bone. That was 11 years ago.

Of course you don't want Stage IV. Who would? Nobody here wanted to be in this club at all. But we don't get a vote, do we?

That's the best I can do for a pep talk. You're alive now. Your daughter's having a birthday. Every moment of life is precious.
Be here now, be fully present, and try to stay grateful and hopeful.

Pray for peace, strength, serenity, and healing. Healing doesn't always mean restoration of physical health. Sometimes it's more mysterious than that. But you are not alone. You are loved.

All the best,
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-20-2011, 04:00 PM   #3
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Re: I sure could use a pep talk

I know that it is hard not to worry but here are a few facts about worry. 98 percent of the things that you worry about never happen. look at the odds. They are in your favor. Second, you will have aches and pains, some worse than others. Next thing, just enjoy the day, each and every day. you are doing the right thing by getting it checked out. I too was a stage 3. 6.2 cm tumor, had a mastectomy and 15 months of chemo, radiation, and herceptin. One node positive. My family doctor told me to "go home and enjoy the life you have left". Guess what I found another doctor and 4 years later I'm still here and going strong. And if it is a progression, this too can be overcome. Live, love, pray, and give thanks each day!
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Old 08-20-2011, 04:51 PM   #4
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Re: I sure could use a pep talk

Are you taking Arimidex? You can expect aches and pains from that! I hope your scans are all negative. I think there's a good chance they will be.

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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Old 08-20-2011, 05:04 PM   #5
tricia keegan
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Re: I sure could use a pep talk

I'm sure many have read my mets scare before but will repeat here in the hope of reassurring you, I had a hot spot show on a bone scan, inconclusive mri and clear pet/ct, the spot was too small to biopsy so had to wait two months to repeat these scans and the spot had dissappeared!!

The pain you have does'nt sound like mets to me and I hope you stay positive until you hear more, sending good wishes to you for something B9!!!
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 08-20-2011, 05:50 PM   #6
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Re: I sure could use a pep talk

Doesn't the fact that it's on the same side as the surgery give some probability to it being a muscle/scar issue from that and radiation?
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Old 08-20-2011, 08:28 PM   #7
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Re: I sure could use a pep talk

Thank you everyone for responding. I did start Arimidex 6 days ago. Onc. thought it was to early for all this pain. Also I believe I stated the pain is NOT on the surgery side. I also had a bone scan 5 or 6 weeks ago and it looked good?
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-20-2011, 10:54 PM   #8
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Re: I sure could use a pep talk

Once we have had cancer it is natural to think everything is cancer related. But we are elegible for "regular" ailments too! (altought I think we should be exempt!).
In my case, I developed intermittent shoulder pain and it turned out to be a torn rotator cuff.
I know it is so hard not to worry, but "it is or it isn't" as Mtngrl said. So just try to stay in the moment and save the worrying for when you might need it, if ever. And keep the faith.

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-21-2011, 02:09 AM   #9
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Re: I sure could use a pep talk

Hopefully the scan will show that it's nothing.
Could it because you're using that shoulder more due to the surgery on the other shoulder? shoulder bag, sleeping, carrying stuff?
take care
health and happiness
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Old 08-21-2011, 02:34 AM   #10
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Re: I sure could use a pep talk

Keep your fingers crossed that the scan does not show anything.Hema is fought with bone mets in her spine and is going about fine these days.All the best for your scan
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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Old 08-21-2011, 09:20 AM   #11
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Re: I sure could use a pep talk

Best of luck to you. I wouldn't put too much emphasis on staging, by the way. There are lots of women who are dxd Stage 0, 1, 2, have surgery but still wind up with mets later. So do, some don't. I agree with Mtngrl, we don't get a vote. Stay in the moment. If you do turn up S4, doesn't mean your life is automatically cut down by 20 years either. Check out Kathleen Russell Rich on google.
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Old 08-21-2011, 11:10 AM   #12
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Re: I sure could use a pep talk

As a young member (30 years old) of the stage IV club (only 2-3 bone mets in my hip/back), I can say that my met pain started slowly and didn't come on all at once. It got worse every day- I was limping by the time I had my pet scan. It hurt to push on the spot, it hurt to walk, it even hurt laying down. And these spots were only the size of a quarter on scan. On an unrelated note, my breast cancer was on the left and my hip pain on the right- so cancer doesn't stay to one side (but don't let that scare you).
And just in case it does turn out less than ideal- you are ER/PR+ AND Her-2 positive, which means you have lots and lots of treatment options. Hoping everything turns out okay.
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
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Old 08-21-2011, 01:52 PM   #13
Mary Jo
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Re: I sure could use a pep talk

For me personally, I found that the first few years after diagnosis, every ache and pain was some sort of mets. It's tough at first. We're told to watch for symptoms BUT not to worry. Ya, ok! I, too, had a bone scan a couple years after my diagnosis and it was normal. I am now 6 years out and am still doing fine.

Of course it is good that you are being checked out. You should be. I have a feeling though all will be well and these aches and pains are not cancer. Praying for you.

Mary Jo
"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

15Years NED

<>< Romans 8:28
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Old 08-21-2011, 03:17 PM   #14
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Smile Re: I sure could use a pep talk

Dear Pray, I sure could use a pep talk,
God is good. God loves you and holds you in His hands. He will never leave you or abandon you. He knows the plans he has for you, plans to prosper you in all you do. Trust in Him, He will not fail you.
By being checked out you are in His will and He will see to you in His perfect way.
Do not fear, for fear is not of God but is about punishment instead. ( 1John 4:18 paraphrased)
All things work together for good for those who love the Lord, for it is in Him that we live and move and have our being. He is the author and finisher of our faith.
Lean on Him and trust is Him, you cannot go wrong that way.
I pray that all the tests come out negative but you are in my thoughts and prayers either way. God Bless you.
Stage 1, grade 3, her+++
er 90%, pr 70%, KI-67 25%
1st Chemo 6/29/11
1st chemo taxotere and carboplatin (no good.)
2nd Chemo - Adriamycin and Cytoxan Hardly any side effects, Thank God.
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Old 08-21-2011, 04:54 PM   #15
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Re: I sure could use a pep talk

Thank you, all of you! I am so glad to be connected to such a great support group. When I read your posts I truly feel that I know you personaly but in a way that every one else in my day to day life can not relate and this is so important to us. I am definetly feeling better about the tests tomorrow and I'm actually think I just might come out of it ok.

To the stage four sisters, I'm sure no one wanted or wished it upon themselves, I would never say anything hurtful to anyone with breast cancer. I pray I haven't offend any of you. Gods blessings to all of you. Please accept my appology if I have.
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-21-2011, 06:02 PM   #16
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Re: I sure could use a pep talk

We have a member, Kelly A, who doesn't visit here much anymore but she used to have the quote - "Do not worry about tomorrow, for tomorrow worries for itself. Each day has its own trouble".

I think this is Paul's first letter to the Corinthians.

Basically - don't worry about things you think might happen.

We are here for you no matter what. Mary Jo said it best, every pain and pimple is cancer!!! Something we all go through the first few years out. This changes and goes away later - promise.
Kind regards


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 16 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 08-21-2011, 06:40 PM   #17
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Re: I sure could use a pep talk

I agree - don't worry about the unknown. You are doing the right thing by getting it checked out, and it's likely to be something not cancer. Could very well be the arimidex, with all the treatments there is a lot going on and you never know how your system will react.

And be assured, you have not offended any of us s4 ladies!
Chris in Scotts Valley
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 08-21-2011, 08:30 PM   #18
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Re: I sure could use a pep talk

"my left shoulder started hurting"

"My mastectomy was on the Left!"

Must have meant the other left Hope it's a bunch of nothing.
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Old 08-21-2011, 09:41 PM   #19
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Re: I sure could use a pep talk

Rich, Oops! I reserve the right to blame my short term memory loss on the chemo. I hear tell b.c. patients make misstakes too!
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-22-2011, 10:37 AM   #20
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Re: I sure could use a pep talk

I feel after dealing with all the things we go through due to breast cancer, we can blame anything on the chemo, or the cancer...I agree it is always best to get things checked that don't seem right, or don't resolve on their own. It is a peace of mind thing....and we all have those worries, doesnt matter how many years down the road we are. You will find the support and understanding you need on this journey from the amazing people on this site.
My bet is the arimidex...bone pain is so common with it.
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."

Hugs & Blessings
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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