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Old 05-05-2014, 02:48 PM   #1
Cat
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Posts: 184
Help... I'm scared...

My bc mets progressed in my liver and nodes apperared a little larger so we ablated the kidney again and have been trying to get approval for different chemo.
Perjeta and herceptin were denied last Thur. and now gemzar and herceptin were denied?????
Nurse says she will schedule me tomorrow for gemzar at least while we figure out what to do. Insurance doesn't want to restart herceptin since I stopped receiving it with the halaven.
I know people on this board have had perjeta even though it's not first line and any experience with denial of herceptin.
I don't get it. I know the Dr.s office is doing what they can but in the meantime it's 3 weeks since any chemo and will the gemzar do any good without herceptin?
I am dealing with so many family things and then this on top, maybe I am overeacting but I think I need someone to talk me down. I feel like the insurance company would rather me die, probably, cheaper for them.
__________________
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 05-05-2014, 02:52 PM   #2
Becky
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Posts: 4,179
Re: Help... I'm scared...

Have your onc fight the insurance company for Herceptin and you fight too. A denial is not the final verdict. Appeal! Call your onc and the insurance company now and demand the appeal paperwork to be sent asap.
__________________
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 18 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 05-05-2014, 03:05 PM   #3
CarolineC
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Location: British Columbia, Canada
Posts: 139
Re: Help... I'm scared...

It's so frustrating that insurance companies are in charge of our lives.

I know about dealing with family things-seems like there's so much on our plates already and can't someone in our healthcare make us feel like we matter? We shouldn't have to fight doctors and insurance companies on top of dealing with cancer and treatments. Half the time I feel like my doctors want me to go away-I can't help it if I react badly to things and don't fit in the "normal" box.

I'm with you, Cat, in the frustration department. I hope your doctor can get the Herceptin back for you. You need all the help you can get, especially just coming out of the ablation. Appeal, keep trying. I agree with Becky, contact the insurance company yourself. Geez, you shouldn't have to do this!

Love,

Caroline
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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Old 05-05-2014, 03:52 PM   #4
Cat
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Re: Help... I'm scared...

Thank you Becky and Caroline. I see dr. tomoorow to discuss Treatment and at least receive gemzar. I have talked to insurance agent who has stood by us before against insurance and will appeal too. I have been told the insurance cos. follow NCCN guidelines or don't cover rx. I just wonder, how are others getting covered? Does everybody have to fight?
Hopefully tomorrow comes quick and I happen to have a 2nd opinion scheduled next week so maybe he'll have some ideas.
Thanks all,
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 05-05-2014, 05:57 PM   #5
Pray
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Location: Michigan
Posts: 1,173
Re: Help... I'm scared...

Hope and prayers you have a new plan tomorrow. Gods blessings
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 05-05-2014, 07:17 PM   #6
BonnieR
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Posts: 2,210
Re: Help... I'm scared...

"Overreacting"?? Of course you're not!!!!
It seems when we are most vulnerable and fragile is when we are called on to step into unfamiliar and hostile territory. There should not have to be any fight to get what is indicated
I'm glad you have people in your corner. Keep up the pressure so they will act on your behalf. I don't have specifics about the drugs. Just my support
Keep the faith
__________________
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 05-05-2014, 07:22 PM   #7
Adriana Mangus
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Join Date: May 2006
Location: California
Posts: 668
Re: Help... I'm scared...

Dear Cat,

I'm so sorry you have to deal with this crap, I have never experienced anything like it so I have no advice. Stay on top of the insurance agent, somebody has to help you. Did you speak to the insurance's supervisor? Nurses at the hospital, social workers- - they know how to deal with insurance paperwork.

Thinking of you, Cat. Go to the movies, don't just sit at home, the least take short walks, it will take the stress out of you- - I do it all the time, otherwise I would go crazy.

Love and a BIG cyber Hug.

Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 05-05-2014, 07:40 PM   #8
sassy
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Re: Help... I'm scared...

Cat,

Keeping you in my thoughts and prayers. Keep fighting and pull in all the allies you can.
__________________
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 05-05-2014, 07:58 PM   #9
zhelmom
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Join Date: Feb 2014
Location: Greece
Posts: 20
Re: Help... I'm scared...

Gods be with you.prayers can move mountains.have faith.
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Old 05-05-2014, 08:48 PM   #10
Cat
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Posts: 184
Re: Help... I'm scared...

Thank you all for your love, support and prayers. Will update when something is decided. Hugs to all,
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 05-06-2014, 01:18 AM   #11
Pamelamary
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Location: Melbourne, Australia
Posts: 494
Re: Help... I'm scared...

Cathy, so sorry you have to deal with all this stuff. As if the journey isn't hard enough! Thinking of you..... 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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Old 05-06-2014, 04:14 PM   #12
Lnmum
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Location: Greenville, NC
Posts: 79
Re: Help... I'm scared...

I hope and pray you get a positive response from the insurance company. I have found that I have to go to battle for each BC treatment I get!!
Let us know how it's going.
Loren
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Old 05-06-2014, 06:44 PM   #13
FLfrost
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Join Date: Apr 2014
Posts: 47
Re: Help... I'm scared...

See if your doctor can get the drug company to donate the drug for compassionate use because your insurance has denied.
Joanne
__________________
HX: left breast IDC T1a node negative 1999. Lumpectomy, sentinel node biopsy, radiation therapy, 5 years of Tamoxifen, 1 year of Femara discontinued due to intolerance.
3/21/14 almost 15 years later abnormal mammogram 2 cm right breast mass deep in the breast by the chest wall, mammogram last year was normal. Ultra sound confirmed highly suspicious for malignancy.
3/26/14 needle biopsy proven IDC grade 3, ER+ PR+ Ki67 75%, Her 2 in process.
3/31/14 Consult with Breast Surgeon. Bilateral mastectomy discussed along with referral to plastic surgeon for planned surgery with reconstruction.
4/4/14 Her 2 +. My Oncologist explained that this is a new primary and unlike before in 1999 very aggressive. Surgery put on hold.
BRCA testing done. Results were negative for gene mutation.
4/7/14 PET CT for staging for possible neoadjuvant treatment. Results indicate 1.3 cm tumor and a positive lymph node.
4/9/14 lymph node biopsy. Pathology documented metastasis.
4/14/14 cardiac echo result Ejection Fraction 60%
4/16/14 Port placement
4/17/14 1st chemotherapy treatment
with Herceptin, Perjeta, taxotere and carboplatin.
4/18/14 1st treatment done yesterday with no events whatsoever!
4/23-4/25 Dreaded D hit really hard.
Daily visits to the Oncologists office for hydration and neupogen injections.
4/24/14 Started on Cipro for seriously low WBC count.
4/25/14 Results of blood count at MD office so low (ANC 0.08) I am hospitalized in isolation for neutropenic precautions. One treatment wiped out my immune system!
4/28/14 home recovering. 4/30/14 MD's new plan of treatment: reduced dose weekly taxotere, carboplatin, Herceptin with Perjeta every third week.
5/7/14 Cardiac echo > than 60% and the breast ultra sound showed 2 cm lymph node now only .5 cm. mass in breast is unable to be palpated!! treatment is a go.
5/9/14 Partial 2nd treatment, full dose Herceptin and Perjeta 1/3 dose taxotere and carboplatin.
5/13/14 lab check and fluid infusion.
5/14/14 Appointment with my Oncologist. The lab results are great and the dreaded "D" not as severe as 1st round. Then I mention that my left calf and foot are swollen and painful to the point of limping, could be the drugs but to be safe I had a venous doppler study. I have a clot in my left leg. It wasn't totally occluding the vessel and she really didn't want me in the hospital. Now I will be on Arixtra shots in my tummy till the chemo is complete sometime in August, 2014
5/16/14 continuation of 2nd treatment taxotere carboplatin only.
5/23/14 continuation of 2nd
treatment taxotere, carboplatin only
Amazingly no horrid "D" or nausea!!
5/28/14 visit with the oncologist, great news she can no longer feel a breast mass or the malignant lymph node Yippee!!
5/30/14 started 3rd chemotherapy cycle had full dose Heceptin, Perjeta ans 1/3 dose taxotere and carboplatin.
6/6/14 next dose of taxotere carboplatin for 3rd cycle
6/13/14 last dose taxotere carboplatin 3rd cycle
6/16/14 I am scheduled again for another breast ultrasound to see extent of response to chemotherapy. results will direct continued chemotherapy of directly to surgery!
6/20/14 tentative 4th chemotherapy cycle



"Zumokato Toku" is my Chemo Ninja Cancer Assassin name!
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Old 05-06-2014, 06:54 PM   #14
Nurse4u2day
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Location: California
Posts: 439
Re: Help... I'm scared...

Kathy prayers from California that the insurance company finds it's error of ways and reconsiders their decisicion with the help of a nice luck in the booty by your doctors!
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 05-06-2014, 07:18 PM   #15
Cat
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Posts: 184
Re: Help... I'm scared...

Thank you all. I'm using all areas. We submitted forms for patient assistance / compassionate care (? Same thing?). I've got the ins agent on my side and checking into it. Feel better about just gemzar for now with other possibilities for herceptin and/ or perjeta. On the road and feeling a bit calmer after talking with onc and nurses today. Asked him if the people making these decisions are bean counters or actually looking patients in the faces. Said he has gotten so frustrated over the restrictions and nearly got written up arguing for someone. He said they can be tough and not necessarily make decisions base on patient care that seems reasonable to us. Will plug away and hopefully get results.
Thank you, thank you, thank you,
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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