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Old 10-27-2009, 04:58 PM   #1
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Update on Joy 10/27

Hi everyone, this is Joy's sister. I just wanted to give a quick update on Joy and maybe get some advice. She has been taken off the Ixempra due to rising markers and severe neuropathy. Her oncologist is starting her on Doxil/cytotoxin and Herceptin tomorrow. Her thinking is that she has had good response to anthracyclines (sp?) before, she did well on epirubicin. She had talked about doing Herc. and Avastin last week but now she has changed her mind, she says because there is more than 50% liver involvement, she feels like Avastin may actually make things worse?? Also, she's not sure if her insurance would pay for it. It seems like on this board, BC Mets and YSC there are a lot of women on Avastin, and not many complaints about insurance problems. We are curious to get any of your thoughts about this treatment, Avastin and other treatment ideas. We feel like we are running out of options. Any thoughts would be appreciated. And as always we are thinking of all of you! Thanks you so much and take care, Jennifer
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Old 10-27-2009, 06:23 PM   #2
Ruth
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Re: Update on Joy 10/27

Jennifer ~
Thank you for visiting us and giving us a little update on Joy. I confess I always check every week to see if something is written about her. I don't have any personal advice for your questions but I am sure that you will get lots of fantastic advice or ideas here. These folks amaze me on the knowledge they have!
Please give Joy my love and that I wrap my cyber arms around her.
Ruth
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Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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Old 10-27-2009, 06:25 PM   #3
Cal-Gal
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Re: Update on Joy 10/27

Nothing to add but thoughts and prayers for you and Joy---
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DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
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Old 10-27-2009, 07:25 PM   #4
Mary Anne in TX
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Re: Update on Joy 10/27

Sounds like a good try for treatment for Joy. Wish I really knew something to suggest. Please tell Joy she's terrific and I send prayers and love, ma
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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 10-27-2009, 08:07 PM   #5
Jackie07
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Re: Update on Joy 10/27

Not that many postings about Avastin are found on this board by using the 'Search' function. Here's some information provided by WebMd last year when it was first approved for breast cancer treatment:

Avastin for Breast Cancer Treatment

The cancer drug was recently approved to treat metastatic breast cancer, but there are still questions about Avastin that need to be answered.
By Gina Shaw
WebMD Feature
Reviewed by Matthew Hoffman, MD



In February 2008, the FDA approved a new drug, Avastin, for the treatment of breast cancer that has metastasized. Cancer that has metastasized has spread to other organs such as the lungs, liver, or bones. This decision to approve Avastin was somewhat surprising. In December, an FDA advisory committee had recommended that the FDA not approve the drug. The vote, though was close -- 5 to 4.
What is Avastin? And what can it do for some women with breast cancer?
Avastin is one of a newer group of medications called anti-angiogenesis drugs or angiogenesis inhibitors. They work by choking off blood supply to tumors. This prevents the tumors from forming new blood vessels and cuts off their growth. Avastin had already been approved for use in treating colorectal cancer and lung cancer.
In women with metastatic breast cancer, a large clinical trial showed that Avastin both shrank existing tumors and lengthened what's called "progression-free survival." That's the time it takes for the disease to worsen. In the study, women who took Avastin in combination with the standard drug Taxol survived almost twice as long without their disease worsening as did women taking Taxol alone. That was an average of 11.3 months compared with 5.8 months. Tumors also shrank more in patients taking Avastin than in those taking Taxol alone. Another trial, released in June 2008, found similar results.
But there was no difference in what both oncologists and women with breast cancer see as most important: overall survival. Women taking Avastin did not live any longer than those only taking Taxol. That's why the FDA's decision in February was a bit of a surprise.
"As much as we try to be driven by science and evidence, if there's any possible advantage that can be given to the patient, we want to do it," says Yelena Novik, MD. Novik is medical director of the clinical trials office of the New York University Clinical Cancer Center at NYU Cancer Institute.
Avastin: Quality of Life vs. Quantity of Life

Avastin can be an important drug for many women with metastatic breast cancer, says Eric Weiner. Weiner directs the breast oncology center at the Gillette Center for Women's Cancers at the Dana-Farber Cancer Institute in Boston. "The fact of the matter is that progression-free survival can be important for patients," he says. "Living with cancer under control is obviously a good thing. That is it's good if you can do it without paying too much of a price in terms of side effects from the treatment."
Side effects are a concern with Avastin. They can include:
  • High blood pressure
  • Blood clots
  • Heart problems
  • Bowel perforation
  • Proteinuria (excess protein in the urine, which can signal kidney damage)
"These are clear-cut issues which may also contribute to poor outcomes for some patients," says Novik. "We particularly have to be concerned about the risk of thromboembolic events -- a stroke. This is rare, but it's a significant concern."
But Avastin's side-effect profile still compares favorably to many chemotherapy drugs. And for many women, the drug is well tolerated, says Lillie Shockney, RN. Shockney is administrative director of the Johns Hopkins Breast Center. "Women with metastatic disease are concerned about having quality of life and quantity of life at the same time. I'm working with a patient right now who's on Avastin. She's able to continue working, which is a real relief since she's a single woman and lives alone and needs to support herself for as long as she can. Some treatments can really beat you up, and you aren't able to be productive outside your home."

What the Future Holds for Avastin and Breast Cancer Treatment

With Avastin, there are no known predictors of a better or worse response to the drug. "If we could identify what sets apart the responders to Avastin, then those people who respond might, in fact, demonstrate a pretty clear survival advantage," says Weiner. "What we really need are better predictors of both toxicity and efficacy."
But such biomarkers for Avastin, unlike Herceptin, a drug that was approved in 2005 for the treatment of certain early-stage breast cancers, have not yet been identified. In the meantime, doctors at leading institutions like Dana-Farber, NYU, and Johns Hopkins are prescribing Avastin to many of their patients with metastatic breast cancer. When they do, it's usually in combination with Taxol -- the way it was in the clinical trials.
"Not every woman will receive Avastin," says Weiner. "For example, if I want to give a drug like capecitabine, which unlike Taxol does not involve hair loss, then I would not give Avastin with it. That's because studies have not shown any advantages. But many women in our institution will receive chemotherapy plus Avastin."
A large trial is also now evaluating Avastin as a treatment for early-stage breast cancer. It has recruited some 1,800 of the nearly 5,000 patients it needs. The trial will compare Avastin to a placebo in combination with a current standard chemotherapy for early-stage breast cancer. The results are not expected for several years.

"We're still pondering how best to use Avastin," Novik says, "and we don't have all the answers."
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Old 10-27-2009, 10:27 PM   #6
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Re: Update on Joy 10/27

Can Lapatinib be included for "total her2 blockade"?
Could she get Zoledronic Acid (Zometa) dose 24 hrs after her Doxil? It is thought to increase effect of Doxorubuicin.
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Old 10-28-2009, 04:14 AM   #7
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Re: Update on Joy 10/27

My onc. has said that doxil and herceptin shouldn't be given together because of potential cardiac issues. Ask Joy's onc. about that. Thank you for the update on Joy and please tell her she's in my thoughts. I hope the switch in meds will get her feeling stronger with less side effects soon.
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
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4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
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8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
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Old 10-28-2009, 12:20 PM   #8
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Re: Update on Joy 10/27

Jennifer,

Thanks for letting us know how Joy is. Hope she can come to the board herself soon.

Amelia
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Old 10-28-2009, 03:41 PM   #9
suzan w
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Re: Update on Joy 10/27

Thanks so much for the update! I do not have any advice or experience to share, so will send along prayers!! Joy has been an integral part of this board for me and I wish her nothing but the best!!! xo Suzan
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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'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
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.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 11-02-2009, 07:35 PM   #10
Mary Anne in TX
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Re: Update on Joy 10/27

Hi Jennifer and Joy! Just wanted to send a prayer and a cheer to ya! Have you decided on a treatment and is Joy doing better?
Lots of love and positive thoughts, ma
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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 11-05-2009, 10:08 AM   #11
Beckie
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Re: Update on Joy 10/27

Thank you for the update on Joy. She has been one of the ones I have tried to keep track of over the last 3 years. I am on Doxil now after the last 3 failed. I am going to ask about the Zometa suggested by Rich.

God bless you, I am praying for you.

Beckie
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Diagnosed 4/06, age 55
1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today


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Old 11-05-2009, 10:27 AM   #12
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Re: Update on Joy 10/27

I am so glad to hear they are considering her for Avastin. I was going to start Avastin/Ixempra before I became aware of the p53 gene therapy for Li-Fraumeni Syndrome (which I am positive for). So I put everything off, to wait for the 4 week cleansing to start the trial, and the crap moved into my brain. Now I am starting WBR till Nov 20th and hopefully start the trial on Nov 30th. Being that it's brand new, I am pretty scared and excited about it - sounding like it's the perfect solution to a 25 year piece of critical research in the genetic problem I have had all my life, and the life of my family. They have tried to deliver it all sorts of ways, but this way sounds like it will finally work.

Back to the subject, Avastin is one of the drugs my oncologist worked with in breast cancer patient trials and said that he felt it was WAY underutilized in the HER2+ metastatic situation, where tumors were VERY knowingly vascular. He said you should be able to just look at the CT and MRI and see that your disease is very vascular. When you get to the point where Tykerb and Herceptin seem to stop working, some of the older therapies stopped working, and you have limited options left - try Avastin. That is my next line, if I don't get into the p53 trial for some unfortunate circumstance.
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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Old 11-09-2009, 07:35 AM   #13
WomanofSteel
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Re: Update on Joy 10/27

Thanks for the update. Adding my prayers to the rest so together we can knock out this crappy disease.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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