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Old 02-17-2009, 02:07 PM   #1
Midwest Alice
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Brain MRI treatment question

I will have a brain MRI April 21 at M D Anderson. I can expect three different outcomes, clear (which is what I hope and pray for) small mets, or large tumors. I fly down with a friend for three days.

I need to have some kind of idea or time frame on the last two outcomes. If I would have to have gama knife of surgery I think I should come closer to home, St. Louis, Nashville, Louisville. How often do you have to go in to have your treated area looked at after one of these procedures?



I want to see Dr. Cristafanilli every three months and have my treatments (Herception and regular stuff) done here. Otherwise more than three months will get very expensive. But what about big stuff?

This is very confusing. Please anyone with experience that may help me think this through let me know.


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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 02-17-2009, 02:45 PM   #2
Joe
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Alice,
Treatment will depend on the size and number of tumors, if any. Generally Gamma Knife can treat tumors >3 cm. and usually only if fewer than 6.

Whole Brain Radiation is used if you have many tumors.

I do understand that Cyberknife can treat larger tumors.

There are several practitioners of Gamma Knife in the Knoxville area: Centers of Excellence.

You may wish to visit the CNS section of this website for re information: CNS Tumors

Regards
Joe
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Old 02-17-2009, 04:28 PM   #3
Midwest Alice
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Thanks Joe, I went to these places and found lots of helpful information. Just wanted to come back and tell you thanks.......now back to my research.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 02-17-2009, 04:57 PM   #4
Joan M
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Alice,

I had both surgery and stereotatic radiotherapy.

After the surgery, the sutures were removed in one week. Then it took six weeks of healing before radiation, but there was prep before for the treatment.

Radiation was five doses given over a week's time. However, I needed a brain MRI before that and also to get fitted with a mask that held my head down, and then there were two simulations before the actual treatment, as well. Scheduling for these procedures went on over a few weeks.

My tumor was just short of 3 cms and therefore a little too large for effective radiation treatment alone, according to the surgeon and and radiation oncologist, who suggested that I do both for better control.

But hopefully you will get a clear scan and won't need any of this.

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 02-17-2009, 09:32 PM   #5
jones7676
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I certainly cannot offer you advice - but I hope you find whatever is right if you do have a challenge.

I am hoping you get an all clear!

I too will be checking out additional sites listed by Joe.

Good luck to you and thanks to Joe too.
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 02-17-2009, 11:57 PM   #6
hutchibk
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Gamma and Cyber are one visit treatments, I believe. A main difference between the two is that for Gamma, your have a halo screwed into your skull. For Cyber, I believe that you are snapped onto a table in a head frame.

I had treatment for 5 brain mets (ranging in size from 1mm - 10mm) in Sept. My radiation onc preferred to use IMRT (intensity modulated radio-therapy) which worked wonderfully, they have all disappeared. I went in for 5 days in a row and he mapped out a treatment plan that was 19 different angles of beams on each of the 5 spots for five days (with a weekend break between day 3 and 4). Each visit took about 15 minutes. They created a head frame that locked my head and shoulders down to the table keeping me perfectly still.

Best of luck with your MRI... I love Dr. Christofanilli - I have talked to him a couple of times at 3 different conferences. He's top notch.
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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 02-18-2009, 09:41 AM   #7
Believe51
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Smile

Yes, the Gamma is a one day affair and is screwed into your head. Although this does not sound too appealing, it was bearable per Ed. The next few days of healing allows these sites to drain and feel quite numb, with a little headache. Again, bearable. He did need to have WBR since the first set of mets was 'salted' like you sprinkled the shaker over his brain. The WBR worked wonders and allowed us to get rid of the for the most part. Again, he had little choice about this decision and we wished we could have avoided that altogether. The first Gamma he had was for 10 mets all under 9mm but this is not the normal amount. They do like to remain Gammering under 6 mets, 10 is a lot of work but he needed to take those risks. It was a long day for him that time because his spine would not allow him to lay that long consecutively. Ed was there from early morning until very late night, this is not the norm either. For the most part, the second Gamma went well and rather quickly with his 5 mets, home by 6pm. There were 5, of them 3 were new, one might have been a met and the 5th was a previous met the doctor thought was 'angry' (still laughing at that). Both Gamma's were productive in producing the results we needed. The worst part of much of this was the reactions to the Decadron.

As a caregiver, witnessing both procedures, I felt comfortable with the research done, the GammaMan himself, but especially the results. This is a very scary thing to hear the words 'brain' and 'radiation' in the same sentence. In fact, it stinks!! In your situation the same will hold true. You will working with a respected and top notch doctor/facility. You are doing your research, gathering knowledge and ammo. I have complete confidence that things will work out wonderfully for you, Alice. You are always in my prayers and I embrace you as you move forward with your quest.

Keep your spirits up and remember you are not alone. We are following right by your side and will see you through this. I have faith that whatever you chose it will be the best solution for you. Most of these brain procedures produce miraculous results for many. And please note....the brain is an amazing organ. It is strong and vibrant, responds well to radiation and heals great! Whatever you chose it will be a decision that was well thought out.

Saying a special prayer for you right now. I am also sending positive healing thoughts your way. Be confident in the doctor, procedure of choice and your final decision. Things will work out from there. It will all fit together like a puzzle.>>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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