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Old 06-23-2008, 08:40 PM   #21
TSund
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Val,

Hope all is going reasonably well.

Did your insurance balk at paying for the quarterly H?

I think it makes a lot of sense.

TRS
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 06-23-2008, 08:49 PM   #22
Bill
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Hi Val! I'm sorry to hear about this most recent development. Please know that you're in my thoughts and prayers, peace and love to you, Bill
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Old 06-25-2008, 04:58 PM   #23
Val Pfeiffer
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Thank you so much to each of you for your kind thoughts and words! I am expecting that the surgery will go very well and that the pathology will show no need for further treatment -- other than continuing the quarterly Herceptin. I may consider doing the Herceptin every three weeks again for awhile if the pathology shows that these cells are also Her2+. We'll see. I also may take another look at Tykerb.

And no, the insurance company didn't balk at the quarterly Herceptin. I am a member of a wonderful local HMO (and the last two years I have also worked there :-) But the first time I went though this I didn't work there and they were wonderful then too.

Val
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BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 06-27-2008, 04:50 PM   #24
juanita
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Sorry you have to go through this again, but glad that you caught it early. I'll keep you in my prayers.
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 07-02-2008, 02:14 PM   #25
Val Pfeiffer
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The surgery was yesterday, and it went very well. The good news is that the sentinel node was clear, so no chemo or radiation this time, which is great news!

Val
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BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 07-02-2008, 04:35 PM   #26
lexigirl
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That's terrific news, Val!! I am so happy that this was found early and you don't need further tx. Have you decided on your quarterly herceptin?

Big Hugs,
Lexi
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Old 07-02-2008, 04:45 PM   #27
Mary Anne in TX
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Val, that's such great news! Yahoo!
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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 07-02-2008, 04:51 PM   #28
Mary Jo
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Thanking God for this wonderful news for you Val. My heart is rejoicing with yours.

Gentle hugs and Peace I send,

Mary Jo
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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

17 Years NED

<>< Romans 8:28
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Old 07-02-2008, 05:48 PM   #29
Joan M
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Val,

That's wonderful news!

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 07-02-2008, 06:23 PM   #30
Bill
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Hi Val! Thank God for the good news! Thanks for sharing it with us.
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Old 07-02-2008, 06:48 PM   #31
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Wonderful news Val.....now you can get back to writing!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 07-02-2008, 09:22 PM   #32
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New cancer found in remaining breast

Cancer is sneaky. I am glad you caught it early. I don't blame you for wanting to continue some kind of therapy especially after the sneaky cancer snuck up on you. Hopefully the surgery will take care of it. Take care and hang in there.
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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
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 07-03-2008, 10:32 AM   #33
Val Pfeiffer
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Lexi, you asked what I have decided about the quarterly Herceptin. I'm pretty sure that I will continue with it quarterly. I called my oncologist yesterday and told him what has been going on (I hadn't talked to him since the new cancer was discvered, so I thought it was time to bring him into the loop). We chatted for awhle; he mentioned that at ASCO this year a study was presented that combined the post-tx Herceptin (triple dose every three weeks) with a lower dose of Tykerb. He knows that I have been following and thinking about Tykerb for long time, but previously I had decided to save Tykerb for a "rainy day."

I have an appointment with him on th 17th. By then I will have the pathology report on my new cancer cells. For some reason they never ran the Her2 or the ER/PR path tests on the biopsy sample, so I have to wait for the path results on the tissue they removed during the mastectomy (that really ticked me off...what a bone-headed thing to do). So when I know for sure that the new cells were also Her2 then I can make a better decision.

If the new cells are Her2+, then I will most certainly stay with at least the quarterly Herceptin. Unless someone tells me differently, I don't believe that mets travel to the other breast, so this is a new primary site. There wasn't evidence of cancer in the nodes, so theoretically my situation hasn't really changed. So I guess I could decide to go back to triple doses every three weeks and add the low dose Tykerb, but since things aren't really that different, I may stick with what I'm doing.

If any of you have any other thoughts, please let me know :-)

Val
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BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 07-03-2008, 11:56 AM   #34
StephN
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Dear Val -
You answered the question I was going to post.
What is the pathology of the new tumor?
Guess you will post that when you know.
In your signature you did not give the GRADE of you first tumor. Mine was high/3 and moved fast.

If it is still HER2, I would tend toward stepping up the frequency of Herceptin. Since you were only getting it quarterly, that leaves you some time between treatments that you are unprotected, giving the cancer time to do its sneaky thing.

And you don't KNOW that there are no micromets in the nodes or remaining tissue. Even though it is considered a new primary, the cancer remained active and did not develop in a vacuum.

Hope you have a great weekend and get in a little fun!
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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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