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Old 06-27-2019, 05:21 PM   #21
DianaMK
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Re: Whack-a-mole next...

You have been such an inspiration to all of us. Sending you love and support. F$ck cancer
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 07-15-2019, 09:58 PM   #22
StephN
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Location: Misty woods of WA State
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Wink Re: Whack-a-mole next...

Looking in to say a big hello and see how the Whacking is going. There are improvements in this form of treatment all the time.

Take care and enjoy your days and those "swing dance" evenings!
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-16-2019, 08:08 AM   #23
Laurel
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Re: Whack-a-mole next...

Hey there Flori!


I've been thinking about you, too, and wondering what you are whacking with as well! Remaining hopeful.


L.
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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

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

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Old 07-16-2019, 09:13 AM   #24
Carol Ann
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Re: Whack-a-mole next...

Me too Flori! Chiming in to say you've been on my mind, hoping things are going as well as they can be for you.


Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 07-16-2019, 11:29 AM   #25
Cathya
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Re: Whack-a-mole next...

Hi Flori;

Thinking of you and your battle. Hoping for all the best and praying for you.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 07-16-2019, 05:30 PM   #26
Becky
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Re: Whack-a-mole next...

Whack, whack whack away!
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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 14 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 07-21-2019, 07:16 PM   #27
Mary Jo
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Re: Whack-a-mole next...

So happy I checked in tonight. You are one of my old friends on here and you are an inspiration. God Bless you Flori.
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"Be still and know that I am God." Psalm 46:10

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

14Years NED

<>< Romans 8:28
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Old 07-23-2019, 02:25 PM   #28
Nguyen
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Join Date: Nov 2005
Posts: 191
Re: Whack-a-mole next...

Hello SoCalGal,

Perhaps you can look into this?


"
The American Society of Clinical Oncology’s (ASCO) Targeted Agent and Profiling Utilization Registry (TAPUR) clinical study has added the enrollment of additional patient groups and continues to grow with more than 500 participants and 16 therapies now available. The purpose of TAPUR is to help cancer patients who have exhausted standard options access targeted study drugs matched to the genomic profiles of their cancers and provide physicians assistance in interpreting genomic results and identifying potential treatment options. (1)"

https://news.cancerconnect.com/breas...U-3m1JEn5mDyg/

Nguyen
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Old 07-23-2019, 05:01 PM   #29
donocco
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Posts: 390
Re: Whack-a-mole next...

Id also think about that anti-worm drug Fenbendazole. I was impressed reading about the metastatic lung cancer patient Joe (Tibbens ?) Very impressed

Paul
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Old 07-23-2019, 05:17 PM   #30
donocco
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Re: Whack-a-mole next...

Its Joe Tippens. He has been cancer free for 4 years. He is on Facebook. Appraently other people have used Fenbendazole with some success. Dont forget clinical trials with Phase o ne drugs are about determining toxicity and maximum tolerated doses, not efficacy. It seems that Fenbendazole offers some hope

Paul
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Old 07-29-2019, 11:25 AM   #31
knick
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Re: Whack-a-mole next...

Hi Flori,
I think you said it best-it's frustrating to be scared of your own body. Thank you for sharing your experiences here with us.
I'm certain that clinical trials aren't a favorite option at present, but I did want to suggest a few that I'm aware of, which are helping patients, or appear poised to.
DS-8201a: It's in many clinics in So-Cal (LA for example). Think of it like Kadcyla but with a different toxic payload. Given you've had taxane after taxane, receiving a topoisomerase inhibitor (the payload of DS8201) could "shock" the cancer cells.
There's currently a trial combining DS8201 with a immunotherapy drug (nivolumab). ClinicalTrials.gov Identifier: NCT03523572. This is phase 1 so you won't end up on a placebo.
The other product which might be of interest if tucatinib (currently owned by Seattle Genetics). This is similar drug to lapatinib, but it's supposed to better access the brain and CNS, and have fewer side effects.
Unfortunately it's in late stage trials, so you might see about requesting "Expanded Access to Investigational Products" from a Seattle Genetics representative.
I'm aware of other trials, but they're outside California.
Whatever direction you take, sending positive vibes and well wishes.
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Old 07-29-2019, 01:30 PM   #32
donocco
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Posts: 390
Re: Whack-a-mole next...

The main difference with Tucatinib vs lapatanib is that Tucatinib inhibits Her 2 neu wihout inhibiting EGFR (Her-1). This means less diarrhea. It has good CNS penetration. May be worth trying.
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Old 07-31-2019, 04:28 AM   #33
Laurel
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Re: Whack-a-mole next...

Flori.....?
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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

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

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Old 08-14-2019, 05:47 PM   #34
Shobha
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Join Date: Feb 2008
Location: Bayarea,CA
Posts: 677
Re: Whack-a-mole next...

Flori,

Sending prayers and good wishes. Your humor, so perfectly and aptly describing our struggles has always amazed and inspired me! Hoping to hear from you soon...

-shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 08-15-2019, 09:25 AM   #35
Laurel
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Re: Whack-a-mole next...

Thinking of you and praying for a break through. You are ever on my mind and heart, dear Flori.
__________________

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

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

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Old Yesterday, 08:41 AM   #36
jaykay
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Posts: 622
Re: Whack-a-mole next...

Like everyone else you have touched - thinking of you, Flori. Hang in there!
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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