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Old 11-09-2013, 07:17 AM   #1
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Red face Auntie Em! Auntie Em! Danger Will Robinson...

Auntie Em! Auntie Em!
Red Alert! Captain to the Bridge!
1-Adam- 12 ... see the man...
Danger Will Robinson!
Attention all personnel... Incoming wounded!

You get the idea...

Soooo...Now that I have your attention.... let's travel back it time to Tuesday night when all hell broke loose (un-necessarily to my way of thinking) As many of you know... I am soooo not a panicker... very low threshold on my drama meter!

Tuesday afternoon, I was scheduled for an echo and a CT of my chest, Ab and Pelvis. Well, friends, I had been feeling so blechy for so many days that I was pretty sure it had been at least 3 days since my last actual shower. And I had a sneaking suspicion they were going to try to admit me once I was there...

I tried to muscle the nerve and energy to get ready and go...
but seriously... getting dressed would have been plenty.
riding the hour in the car to the city
traveling to the echo lab - even in a wheelchair
waiting around for my turn
laying on that table for 45 - an hour (because of all my scar tissue)

and THEN having to drink that nasty liquid and do the CT stuff.
It was just more than my little spirit could handle in one day. So I asked Ted to call and reschedule.

OMG! What a s$%@ storm that created! Now everybody and their CRNP was on the phone trying to convince me I needed to be admitted ASAP. The "bed crisis" of the day before be damned... there was a bed waiting for me as soon as Ted could get me there.

Through my wonderful husband, I explained that if getting ready to go, slowly, for two tests was an exhausting prospect... rushing around, packing up to be admitted as well... and getting the kids organized... was not likely to happen before morning.

They were NOT happy (poor things) but soon remembered that some things with our beloved NEDenise are simply not negotiable. So my devoted and quite obviously worried onc evoked a promise that I'd come in "first thing" the following morning to start all the tests they wanted.

Sooo here I sit... drinking the nasty contrast fluid and waiting for the CT. Already had some other stuff done since I've been here but no results yet... still trying to put together a picture of what we're dealing with.
I'm likely here till Monday. Missing My Son's National Marching Band competition _ Out near you Laurel - in the sweetest place of Earth!! In a different reality... I'd actually, maybe gotten to meet up with you for a hug! Oh well! Next time!

Everybody... keep those prayers coming for healing for me, and wisdom for my care team! We need it! And I appreciate it more that you can ever know!!

Love to all of you... and big HUGS too!

BTW - sorry for any missed typos - I am clearly typing under influence. Ativan, Percocet, Zofran.. oh my!
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Old 11-09-2013, 08:49 AM   #2
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Hi Denise,
I am praying for you and sending some healing thoughts over to you.
Please let us know what is happening.
I'll be thinking about you this weekend.
One question....is there any way you can get off the dex now?
Take care and chat soon.
Hugs, Jill
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
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Old 11-09-2013, 08:53 AM   #3
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Oh Hunny!
Not only am I not getting off it... they've tripled the dose!
I'm at 24 mg/day now. Have to admit though that I feel a lot steadier than I did without it.

Thanks for checkin in!
How are things going for you?
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Old 11-09-2013, 09:04 AM   #4
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Praying that your team find solutions for you and have you feeling better soon.
Tracy Arcari
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

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Old 11-09-2013, 09:07 AM   #5
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Why did they triple the dose?
What are they doing with you since admitting you?

I am, umm....I don't know. LOL...you probably get it.
I'm going for my 3rd infusion on Wed. Still have the neuropathy on the right side and still have no vision on the right side. They are watching my heart closely. MRI scheduled for Nov. 27th to see what's going on upstairs.
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
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Old 11-09-2013, 09:54 AM   #6
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Ms NEDenise,

Inquiring minds want to know the latest. Keep us posted with the continuing drama. What the heck is going on?
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Old 11-09-2013, 10:43 AM   #7
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Let's see....
Lumbar puncture
MRI of brain
MRI of spine
CT of Chest, Ab and Pelvis
Multiple urine analysis
Multiple, multiple blood draws
And a poor guy down the hall who sounds like he coughs up and spits out his spleen a couple times each hour... ich! What is with THAT?!

Of course... now it's the weekend so results are not forthcoming...
And my neuro guy is at a conference in Europe till next Friday
And my onc is on a MUCH needed 4 day weekend...

And of course... I want ALL the results, and to consult with ALL my experts...
before I'm ready to decide on ANY next steps.

So... right now, I'm eating ice cream and fresh fruit (that's what I'm craving) and waiting for results to trickle in. I think after the batch of tests tomorrow... I might just go home to do the rest of my waiting. We'll see... access to info seems a little easier here... but home has my own food and my puppies!

Keep praying and checking in Dear Friends!
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Old 11-09-2013, 12:46 PM   #8
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Tons of prayers and positive energy being sent your way! Can't wait to hear good things for you
3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
06/09/14-Steriotactic BX left breast calcification-Benign
06/18/2014-completed one year of Herceptin!
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Old 11-09-2013, 02:07 PM   #9
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Please know I am thinking and praying for you! You never cease to amaze me how you can keep your wit with all thats going on. Please know there is much love and good wishes for speedy healing coming your way. May God bless you, your family and healthcare team!
Oct 07 - Dx PR+/ER+/HER2
Jan 08 - Double mastectomy
Feb 08 - Pet Scan showed liver met
Mar 08 - Started chemo A/T
Aug 08 - Herceptin
Aug 08 - Cyberknife treatment to liver met
Apr 10 - Bone scan showed met on spine L2
May10 - Cyberknife treatment to spine L2
added Zometa quarterly
Jan 12 - Pet scan show mets in lymph nodes
in rib cage area, one near panaceas. Add Tykerb
Nov 12 - New primary colon cancer, not breast met
Dec 12 - Surgery for colon cancer stage II no node involvement. No chemo. Added Leterzole
Continue weekly Herceptin/Zometa/Letrozole
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Old 11-09-2013, 06:10 PM   #10
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Well, wel,l Miss Denise! I miss a day or two from this site and all hell breaks loose! I have been praying for you daily. From the sound of things I'd better step up my prayers! It would have been wonderful to meet up with you in Hershey this weekend. I am sorry you are missing your son's band competition and stuck in a hospital. Stinks.

Well, keep your chin up. Prayers headed upward on your behalf.

Much love, admiration, friendship, and affection--Laurel

Smile On!

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

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

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Old 11-09-2013, 07:10 PM   #11
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

keeping you in my prayers Denise

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Old 11-09-2013, 07:14 PM   #12
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Denise, oh my goodness me! As usual, you have amused with your not so amusing post. Just to remind you, big hugs, hope and prayers are being sent to you from my part of the world.

Enjoy the ice cream and fruit, and the triple dose of dex!

Marie xx
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Old 11-09-2013, 07:15 PM   #13
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Me and my family and family of friends are sending loving, healing wishes,
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 11-09-2013, 07:59 PM   #14
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Denise I am sending you love and hugs. I hope you can get some rest when the dude down the hall isn't hacking.
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Old 11-09-2013, 09:25 PM   #15
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Hey Denise I have been waiting to hear what is going on with you. Well they are certainly covering all the bases. Keep eating that ice cream and what ever your dear heart desires. Sending warm hugs and big prayers. Lois
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
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
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Old 11-09-2013, 09:29 PM   #16
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

With that triple dose of dex (that first auto corrected to sex...good thing I proofed it!!!) you probably need a triple dose of ice cream. Hope you rest easy tonight!
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
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Old 11-09-2013, 09:56 PM   #17
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Re: Auntie Em! Auntie Em! Danger Will Robinson...

Hey there Denise sweetie - enjoy that ice cream... Is it chocolate? ?

Sending prayers that you will get great results from all your scans.


all the best
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
14 Years NED!!
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Old 11-10-2013, 01:56 AM   #18
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Posts: 1,606
Re: Auntie Em! Auntie Em! Danger Will Robinson...

Don't make me come there and scare the crap out of that cancer. Feeling so pissed off at this disease. It sucks, it robs us, and while we can see our own strength at dealing with this crap on a crapstick (hi Brenda in "heaven"), and we can see miracles and possibilities and some good things from the "journey", right now, I am just so pissed off.
Sending you all my wishes for cancer to leave and for the docs to figure out the next magic trick and for you, Denise, to get back the quality of life you most certainly deserve. Love, Flori
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 11-10-2013, 09:06 AM   #19
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Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
Re: Auntie Em! Auntie Em! Danger Will Robinson...

Well... sounds like you're not in Kansas anymore Toto but keep your eye on the yellow brick road your journey is far from over but its going to all end up with you back home and doing great. Just keep clicking those heels! HUGS!!!
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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Old 11-10-2013, 09:51 AM   #20
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Join Date: Mar 2009
Posts: 508
Re: Auntie Em! Auntie Em! Danger Will Robinson...

Love to you, Denise, and all good test results soon!
ammebarb is offline   Reply With Quote

brain mets, tests

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