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Old 05-02-2011, 02:24 AM   #1
Kavy
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Brain MRI results after Xknife

Hi, everyone,
Not so good news. The tumors in my brain grew, specially the 2.8cm in the cerebellum, now it is 3.5cm, and 2 small new ones.
The radiation oncologist wants me to do WBR, but I'm terrified, because of all I read, and also because I'm already very tired. I want to do Xknife again, but he said he would be doing me no good. He thinks if I do Xknife, in 2 months there will be more mets in my brain.
I'm worried about the cerebellum tumor though, because I feel off balance again and my writing is getting worse. The radiation oncologist said the growth can be due to radiation, but if it is real growth, the WBR would wipe out any residual tumor.
I wonder if I should do Xknife again for the 2 small tumors, and wait 2 months to see if the next MRI shows growth in the cerebellum, or 2 months is too long to wait, and I should have WBR now. I do not know what to do, and I need to decide by this week. I would like some advice from you all.
I also want to let you know that I entered the Halaven club. I just started Halaven/Herceptin for my lung mets because of progression, before I was on herceptin/Tykerb for a year. First week I had Herceptin/Halaven, second week just Halaven, this week is my week off. Side effects so far: I feel very tired,but I was already feeling very tired before halaven, no nausea (no nausea medication, when I feel mild nausea, I eat something, and I'm fine), it seems neuropathy is getting worse, thinning of the hair. One thing I noticed is that I'm coughing more since I started the new drug.
Have you all a great week.
Hugs,
KarlaV.
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Old 05-02-2011, 04:44 AM   #2
Pam P
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Re: Brain MRI results after Xknife

Oh Karla, This is not the news we wanted to hear. I sure can't advise you on treatment except to say it seems you radiologist is quite firm on the fact that that wbr is the best treatment now - and zap it now, not wait. WBR will attach all the tumors at once. Having just done 20 treatments of wbr I know it's not a walk in the park but if it does the job ...

I finished wbr about 1 month ago now and will have to wait another month I guess for an mri so have no results yet. My largest tumor 2,.6 was also in cerebellum. Also 2 more in cerebellum a little smaller ... and 5 or so small ones other places. I got really tired and weak - the decadron really weakened my muscles. Had I known h0w bad that could get I would have done some little strength exercise program each day to prevent it. Now I feel much stronger -- not yet back to "normal" but much better. But remember I had the 2 leg surgeries and weakness there going into the rads. If you do the wbr they'll probably hold off on the halavan during that time - at least that's what they did for me.
I don't know if hearing about my experience helps but gives you more info,.

You and your radiologist will make the right decision on how to zap those darn mets. Holding you in prayer for good treatment and good results. Pam
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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
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2/10 herceptin & tykerb & zometa
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
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
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 05-02-2011, 11:51 PM   #3
michka
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Re: Brain MRI results after Xknife

Karla, I am so sorry to read that you have to fight these brain mets again.
I am not a brain met specialist but I am sure others will share their experience or knowledge. You started Halaven which is a good move now you have to feel comfortable with the rest of the plan to get rid of these brain mets.
Sending a lot of strength and hugs and calling "brain" girls to give you an advice.
Michka
PS: Pam, I often think of you. I hope you will have a very good MRI next month!
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02.2017 30 micro mets to brain breathing getting worse and worse
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06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 05-03-2011, 01:59 AM   #4
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Re: Brain MRI results after Xknife

Sorry Karla no expertise here but I am hoping very hard the Halaven will do its job.
Trish
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Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
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Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
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Old 05-03-2011, 07:40 AM   #5
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Unhappy Re: Brain MRI results after Xknife

Karla
Hoping the brain mets can be taken care of swiftly and efficiently so you can continue the Halaven....it seems to be a powerful and successful option....sending healing thoughts at this time, look at whatnPam has endured and use her as a role model.....prayers for you
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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
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3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
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Qualified for TDM-1 EAP
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Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
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Old 05-03-2011, 10:31 AM   #6
krisvell
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Re: Brain MRI results after Xknife

Dearest Karla,
I sincerely hope that the radiologist gets your brain mets under control/killed and you can get back on Halaven real soon to take care of the other stuff.
Im sending along my power prayers and positive thoughts your way to knock down the brain mets for good.
Love & Hugs,
Kris....
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Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
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01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


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Old 05-03-2011, 11:22 AM   #7
ElaineM
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Wink Re: Brain MRI results after Xknife

I know nothing about brain mets, but I just wanted to offer my emotional support and a cyber hug to you.
Pam is a good role model for your current problem. Think about what she wrote. Take care.
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Old 05-03-2011, 04:44 PM   #8
Jackie07
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Re: Brain MRI results after Xknife

Karla,

I think your radiation oncologist's concern is that there will be more new ones appearing if you don't do WBR right now. Gamma Knife (and X-knife, I'm certain) injures our brain and makes us very tired as well.

I would strongly suggest you to get a 2nd opinion from other radiation oncologists in reputable institutions.

Will continue to keep you in my prayers.
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Old 05-03-2011, 05:33 PM   #9
SoCalGal
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Re: Brain MRI results after Xknife

I don't know what to recommend - not sure what I would do in your shoes. I am having my mri this weekend, so my own scanxiety already acting up. See who else chimes in - there are so many with brain met experience here. Sending you tons of positive thoughts.
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
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OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
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December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
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July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
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FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
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JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
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Old 05-03-2011, 06:55 PM   #10
Elizabethtx
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Re: Brain MRI results after Xknife

Karla,
I just wanted you to know I am saying a prayer for you right now that you will get clear information and understanding for what you are to do next! Have faith and know we are cheering you on!
Elizabeth
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Old 05-03-2011, 07:34 PM   #11
flynny
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Re: Brain MRI results after Xknife

Hi Karla,

close your eyes and think about those mets as hockey pucks and you are holding the stick now shoot them out of your brain!

Pam, is a great role model and it is nice to have someone who knows exactly what you are dealing with.
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Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
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Old 05-04-2011, 06:47 PM   #12
Joan M
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Re: Brain MRI results after Xknife

Karla,

I'm sorry to hear about the possible progression in the brain after the X-knife. How long has it been since the procedure?

After my craniotomy to remove my brain tumor I had five shots of targeted radiation to the brain (IMRT). At first my MRIs looked good, but after a while they started to show enhancement every three months, and the radiologist could not rule out regrowth. The neuro-oncologist finally did a PET scan and the area was not active, leading him to think that the enhancement was necrosis of the tumor bed (he said, 90% sure of that).

Is it possible for you to get a second opinion?

I'm praying that all will be well, and that the area now showing in the main tumor site is only the tumor dying, or necrosis.

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 05-05-2011, 09:59 PM   #13
Kavy
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Re: Brain MRI results after Xknife

Thank you all for your support, advices, prayers, thoughts and words of encouragement. You are great.
God bless you all.

Pam, I 'm happy to know you are feeling much stronger and much better. I hope and pray that your MRI results will show that the mets are all gone(NED). I think the radiation oncologist will keep me on Halaven if I do WBR.

SoCalGal, sending you prayers for NED MRI results this week.

Joan, The Xknife procedure was in Feb.2, and the MRI was in April 18.
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