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Old 08-14-2007, 07:54 PM   #1
SusanC
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Join Date: Sep 2006
Posts: 38
Met symptoms?

Hi Everyone,
A few of you have posted that you have had a recurrance or mets. Bone mets...did you have pain? Neck nodes...were they swollen? Painful? I don't want to appear insensitive...I hope it is ok to ask these questions. I am seeing onc. tomorrow and I am going to ask him to do a scan of neck, back/lungs. I have a slight burning sensation in my ribs in the back and aches in my neck. I appreciate your feedback. I pray for all of us daily.
Thank you.
Susan C.
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Old 08-14-2007, 08:48 PM   #2
hutchibk
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Posts: 3,519
I had bone mets in my neck at C3. I have had some neck pain that I attributed to the mets, but my rads onc and med onc said that it might not (probably not) be actual bone pain, but over-compensation of ligaments and tendons that reconize a compromise of the bone. We think by now that the Tykerb/Xeloda has probably knocked the bones mets out, though.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 08-14-2007, 09:15 PM   #3
SusanC
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Thank you Brenda for your reply. Good thing..knock out those bone mets! Sounds like Ty/Xel work wonders!
Susan C
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Old 08-14-2007, 10:12 PM   #4
dorinda
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Join Date: Jul 2007
Posts: 43
i have bone mets in the spine. i had lower back pain. thought it might be a kidney infection. but no, it was mets of the spine. i think it is good to get all thoses scan. it will give you peace of mind. im sure it is all good. bc can cause our anxiety level to rise. you will be in my prayers. let us know how it goes. dorinda
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nov 2006 dx. with bc. 3 tumors removed from left breast lumpectomy done. her2 postive er+pr-. scans showed extensive spine mets(to many to count) ,3 tumors on left rib,one tumor on skull and 3 tumors on liver. stage IV from get go. dec.2006 started chemo taxol and herceptine wkly. zometa monthly. rescanned in march 2007, liver tumors shrinking a little. bones to early to tell but pain is gone in my back. rescanned in june 2007. liver mets gone, bone scan looking better but still alot in my spine. still on taxol and herceptine. zometa monthly. rescanned in august due to ca 2729 going up. liver still good , mets in ribs and skull gone but multiple areas still on lumbar and sacrum. mri of brain august 07 negative for mets.I AM BELIEVLING GOD FOR MY HEALING.
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Old 08-15-2007, 10:23 AM   #5
Believe51
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Join Date: Jun 2007
Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Hey Susan

As you can see in my husbands signature, he has mets to all bones and brain. It does not appear that you are insensitive, you are educating yourself and bringing ammo to the doctors office with you and I say 'Good For You'. My husband is not the kind of person to ever complain; very upbeat, positive person, but he does mention where it hurts and it is always something. Sometimes he will go through a few days with his hip or lower back bothering him, but it finally will subside. As for the brain mets he had a slight headache he thought was from pain meds (never had a headache in his life..me: I get migraines!!) Whenever you have a pain for more than a week or so it is always wise to get checked out. Better safe than sorry.

Darling please talk, ask questions or vent here, and always feel free to do so. The more we all help each other, the better our journey shall be!! And I too pray all day long for all of us and our families!!

Good luck with the appointment>>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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