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Old 07-11-2013, 10:32 AM   #1
NEDenise
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SMACKDOWN Victory!

The results are in...

STEROIDS 0 ~ DENISE 1

That's right! I'm finally "clean"!! No steroids in my system for an entire week now! And let me tell you... it was not an easy week! My body (my adrenal gland in particular) had grown quite lazy over the course of the SMACKDOWN!

The first 3 days without decadron, I literally slept 16-18 hours each day. And when I was awake, I felt very weak and generally baaaaaad! But on day four things started to improve. Praise God!!

Warning! the rest of this post is a downer - proceed at your own risk.


At first, I thought the residual off balance/wobbly feelings, and the shaky hand were part of the whole withdrawal experience but alas... no

Apparently the goo is still pressing on the "balance center" of my brain.
Kind of a bummer really.
I was hoping for miraculous improvement I guess.
I'm not sure where we go from here.

And as queen of "The Sunny State of Denial" I'm not sure I want to know.
My gut tells me that if surgery is the only option left... it would be soon... and it will not end well. And that makes me both sad and terrified.
Dying is not on my "Things to do this Summer" list.

But typing this out has made me realize that I need to call the MO and the neurologist TODAY! Knowing is ALWAYS better than not knowing. Thanks, friends!

Please, if you are a pray-er... pray for me.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 07-11-2013, 11:17 AM   #2
Vicky
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Re: SMACKDOWN Victory!

Ohhhh Denise- you have my fervent prayers! You've been so unbelievably put through the wringer with so much lately and you've survived and thrived through it all! I've been in awe and silent wonder how you just keep pushing through it all.

We just need to keep on believing and hoping and resting in Him- He has this Denise- He has this! I know our sistas will join in and I hope you feel all of the loving- healing- energy coming your way!! Love and blessings to you!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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Old 07-11-2013, 11:27 AM   #3
KDR
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Re: SMACKDOWN Victory!

Denise,
Don't let your mind wander into dark places, stay in that sunny place. I don't think Denial is appropriate. You are living in the moment, and you are not denying anything. You look your adversary right in the eye, AND keep a sense of humor all the while.
I am always in your corner. Always.
Love
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 07-11-2013, 12:56 PM   #4
Mary Anne in TX
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Re: SMACKDOWN Victory!

I love the State of Denial....even if only for a while. I know you need to find out what, when and why, but I hope whatever you hear; you can still wander back into that blissful state of denial for a while. I'll surely be praying and believing for only good things and miracles for you.
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 07-11-2013, 01:40 PM   #5
BonnieR
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Re: SMACKDOWN Victory!

I think one of the most agonizing places in the world to be is that place of uncertainty. The not knowing. Because when we know, we can be in charge and make a plan of action and DO something. Even if its not something we look forward to Funny how that works
I love you and am keeping the faith for you
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Bonnie

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 07-11-2013, 01:47 PM   #6
JillaryJill
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Re: SMACKDOWN Victory!

Denise,
Prayers are in the works.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 07-11-2013, 02:26 PM   #7
SusanN
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Re: SMACKDOWN Victory!

My dear Denise...
To put a lil' smile on your face...YOU ARE SUCH AN INSPIRATION...loved the "Chemo Ninja's!!"...I didn't even see your "attachment"...DUUHHH, so I named myself: SHINKOU: which represents Japanese FAITH!!!
Be assured girl, I'm praying, believing, trusting and have Faith that God has His Hand of protection on you!!
HUGE HUGS!!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 07-11-2013, 02:51 PM   #8
tricia keegan
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Re: SMACKDOWN Victory!

Denise, thinking of you and sending prayers and good wishes. xx
__________________
Tricia
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 07-11-2013, 03:00 PM   #9
NEDenise
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Re: SMACKDOWN Victory!

Okay...
so the neurologist's nurse practitioner called me back within minutes (I just love her!)

There's good news and bad news...
not tragic, just bad...
but if any of you are wondering who the top ten UN-luckiest people you know are...
I'm DEFINITELY one of them!
I just can't seem to catch a break lately!

So... because I like to end on a happy note... BAD news first...

Would you believe I've been challenged to a SMACKDOWN re-match!!
After being "clean" for only a week!!
They want me to go back on the dreaded Decadron. Can you believe it?

They're worried that
a) the fact that I'm off balance and can't accurately control my right hand/arm means there is swelling AND
b) they're also worried that the lack of balance will lead to ANOTHER fall (which I really don't need!)

Initially she wanted me to take 2mg/day, but I negotiated it down to 1/2 mg per day, with the understanding that I would increase it a little every few days until the symptoms subside. But, at some point I'll have to wean, AGAIN! Sheesh!

The GOOD news...
I've been taking Lapatnib (Tykerb) for months with no side effects UNTIL I stopped taking steroids.
Then I got everything! Headache, nausea, explosive diarrhea, fatigue...etc...

No, that's not the good news!
My luck doesn't suck that badly!
Give me a little credit people!

The good news is that if I start taking the steroids again... they'll protect me from side effects again!
At least that's what I think should happen... but I'm relatively sure no one ever listens to my opinion about things like this!

I still don't know what our "next steps" will be... both docs are out of the office today... but I'm personally hoping for more Avastin. It was working, but my insurance company does not agree that more is better, or even advisable. I'll keep you posted.

Thanks for all the promised prayers! I appreciate it!
I just love you guys!
I couldn't do any of this without you!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 07-11-2013, 03:05 PM   #10
'lizbeth
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Re: SMACKDOWN Victory!

Denise - You are Tekuto Ki Ariku, cancer assassin. Ward off that stress.

So sorry about the damn steroids. I wish that you were getting better breaks. All this, and you are still so darn funny.

Sending love, and chemo ninja luck!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 07-11-2013, 03:28 PM   #11
ElaineM
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Wink Re: SMACKDOWN Victory!

Congratulations on getting off the steriods. I hate them and avoid them whenever I can myself. I agree with KDR. Please try to stay positive. We never know when the next miracle will happen. You want to be ready for that. Meanwhile I have my fingers crossed for you that all will go well from now on.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 07-11-2013, 04:00 PM   #12
Becky
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Re: SMACKDOWN Victory!

Stay strong. I think the answer will come and it won't be bad. Don't ask me why I'm saying that but I am. You did a little experiment on yourself and actually suggested another by starting decadron with a low dose and working up slowly until you find the lowest effective dose. That was great thinking (so you know the ole brain is engaged, dear).

I think this "thing" will end up being alright. You might have to work harder at it than you thought but you are getting some answers and results. It will work out because you are so willing to work at having it work out. And you have tons of prayers, thoughts and well wishes on your side too and that always helps.
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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 15 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 07-11-2013, 04:03 PM   #13
ElaineM
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Wink Re: SMACKDOWN Victory!

Opps. Didn't see your last post. Good for you to get control and monitor the steriods yourself.
Hang in there.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 07-11-2013, 05:06 PM   #14
Cat
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Re: SMACKDOWN Victory!

Denise,
I am sorry to hear you will need the steroids again, I was on them for a week and felt horrible getting off so I can't imagine what you've gone through and face again. We do become advocates for ourselves and I am so glad you are still thinking strong and proactive. Sending you the strength to carry this through because determination is what I've always heard come through on your posts. I wish I could give you an arm to lean on for balance in the meantime. Hope you can keep it to 1/2 mg.
Hugs , Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 07-11-2013, 05:19 PM   #15
NEDenise
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Re: SMACKDOWN Victory!

NEWSFLASH!
Those of you who are old enough to remember...
imagine the teletype sound in the background!



So... the new plan is for the MRI to be Monday or Tuesday of next week...
instead of 6 weeks from now.

Then I see my neurologist on Tues. afternoon.

When he views the scans, hopefully... fingers and toes crossed...
there will be MRI evidence that things were going well while I was on Avastin...
but now that I'm off...
not so much.

And then, dear friends we start to present the evidence to the warm fuzzy people
who make decisions about whether my insurance will cover more Avastin.
Which of course they will
because all their decisions are patient-centered, NOT money-centered.
So, no worries there... right?

Oh well - I'm still glad I called. I feel better already just having a plan.

Thanks for all the support my friends!
Again... I don't know how I'd cope without you!
Sending love to all!
Denise
aka ~ Tekuto Ki Ariku, cancer assassin
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Old 07-11-2013, 07:39 PM   #16
karen z
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Posts: 1,477
Re: SMACKDOWN Victory!

Stay strong as I know you will.
Thoughts and prayers are coming your way.
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Old 07-11-2013, 07:44 PM   #17
SusanN
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Location: Lincoln, NE
Posts: 265
Re: SMACKDOWN Victory!

Perseverance and a plan...way to go girl!!! You're winning!!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 07-11-2013, 07:58 PM   #18
LoisLane
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Location: Thornhill Ontario Canada
Posts: 266
Re: SMACKDOWN Victory!

We cant do any of this without you either Denise. You are such a light...keep strong
and prayers for you. Lois
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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Old 07-11-2013, 11:51 PM   #19
JennyB
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Location: Port Hedland, Australia
Posts: 382
Re: SMACKDOWN Victory!

Telex is whirring madly......

Glad you have a plan and glad the MRI will be sooner.

PRAYERS are with you

Jenny x
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 07-12-2013, 12:55 AM   #20
Pamelamary
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Location: Melbourne, Australia
Posts: 477
Re: SMACKDOWN Victory!

I am working on an alfoil cap just for you, Denise - to focus those positive vibes. Will be thinking of you early next week, and hoping for better news.
Stay strong for all of us..... Pam.
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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