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Old 06-02-2009, 05:48 PM   #1
charlotte
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cancer strikes my family again!!!!

There was a song a long time ago, that went something like this... If it wasn't for bad luck, I would have no luck at all>
My Niece just found out a few days ago... She has cancer all in her spine, on the hips, legs, and of course the brain. I honestly don't know how to advise her.. She says she "feels numb".
I told her if she didn't like the way the Oncologist is treating her,(uncaring) to go to another one.second opinion at least..
Any suggestions? I usually come here for guidance, knowledge, and a caring group of folks, to listen to me.

The Dr. wants her to take radiation first , then oral chemo. I forgot to ask her what type of cancer it is.
She is very nervous about all of this just hitting her, when a few weeks ago, she was at work.. (said she had some back aches now and then). Now this diagnosis.!!!
thanks for any responses... Charlotte
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Old 06-02-2009, 06:11 PM   #2
eric
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Charlotte, what awful news. I'm so sorry for you, your family and most of all your neice. I agree with you, it's very important that she have a Dr that she trusts. That being said I would act quickly to set up other Dr appointments as I'm sure she will want to move quickly on attacking this beast.
I also understand your feeling regarding rotten luck. At times I struggle to look at the glass as half full but the truth is that looking at things half empty won't benefit us or our loved ones. I always think of a saying that I read on this site (excuse me if I don't have it exactly)...."this disease may dictate how long I live, but I won't let it dictate HOW I live".
Eric
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Old 06-03-2009, 02:31 AM   #3
CLTann
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Charlotte, it is certainly a devastating situation. Still, we should do the best we can to check the progression and make the patient as comfortable as we can. I really doubt radiation will materially improve the situation, since there are so many sites under cancer attack. A whole body radiation treatment will rob the body strength and weaken the normal function. Excess radiation dosage will increase the new cancer formation. Instead, a systemmatic chemo regimen may be the right thing to do. Additionally, the alternative medication may relieve the discomfort suffered by the patient. Regardless how you handle it, it is a difficult situation. My sincere best wishes.
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Annual scans all negative, Oct 06
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Old 06-03-2009, 04:54 AM   #4
schoolteacher
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Charlotte,

I am so sorry to hear about your niece. I will pray that she finds peace.

Amelia
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Old 06-03-2009, 08:31 AM   #5
Shobha
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Charlotte,

I am praying hard for your niece. I pray that she will find the right team of doctors and the right combination of drugs to help heal her.

God bless you and your niece.

love,
shobha
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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.
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Old 06-03-2009, 09:17 AM   #6
WomanofSteel
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I am very sorry about your niece. I definitely think a second opinion is a good idea. If anything it would give her the opportunity to meet with another doctor who may be more compassionate.
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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
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Old 06-03-2009, 12:32 PM   #7
chrisy
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hi Charlotte,
of course she is in shock and numb - that would be the case regardless of who the doctor is. That said, I think she probably does need to move quickly but that does not mean she doesn't have time to get another opinion. It is, as others have said, important to trust your "medical partners" and also to get input from a true expert in whatever type of cancer she's dealing with.

She may get the same treatment recommendation, but might be able to embark with greater confidence. Or she may find she has completely different options. Either way, a quality second opinion is definitely in order.
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 06-03-2009, 01:19 PM   #8
Sheila
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Charlotte
I agree that it is important for her to be comfortable with her health care team....and it sounds like she needs to get another opinion rather quickly so treatment can begin. Is she anywhere near a larger cancer center that could offer more options? I will keep you both in my prayers....hoping they can find a treatment that will help her and be easy on her.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 06-03-2009, 02:14 PM   #9
Believe51
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Charlotte, I am so sorry to hear this news of your niece, this is a terrible blow. I have to agree with the girls in speaking of these second opinions. Her poor little head must be reeling and it is no wonder why she is numb, it is so much information to digest at once. I am saying prayers for you both as you go from Auntie to caregiver on her team. Stay strong and know that I will say prayers for you both. Again, I am so sorry Sweetie, I wish I could just give you a giant hug right now, please accept this cyberhug. Keeping you both in heart>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 06-05-2009, 03:50 AM   #10
charlotte
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thanks to all who gave some sound advise. I will see my neice this week end.this place is so comforting to me when I get there. I will give ya'll an update when I know more have news..
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