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08-10-2013, 07:37 AM
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#1
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Senior Member
Join Date: May 2010
Posts: 184
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WBRT ???? info input ??
Hi All,
I've been away for a while. My MRI showed bandlike areas on the outside of the cerebellum and ALL Docs felt it didn't look like typical mets. The neurosurgeon said given my history lets do craniotomy to make sure. Well it was breast CA (I understand it's better than my renal going there). I had my craniotomy on 7-30, got to my room at 7:30 PM, and was discharged to home 7-1 in the afternoon so that part went well. Weaning off the dex not so much (I feel for you Denise and anyone else who had/has to go through that) and I wasn't on all that much.
We have talked follow up radiation and WBRT seems to be the choice of Docs so far. I see my rad onc on Tue 7-13 to discuss it.
I have read about all the long standing permanent issues and future problems accociated with it and it is very scary. Obviously I want the best chance at no recurrence but not at the expense of who I am and what I can physically do. It's kind of vain but my hair just started growing back after 1 1/2 years and it's been so nice, I hate the thought of permanent hair loss.
I know there must be sisters who have had or know of experience with this and would love some input and maybe a little hope.
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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08-10-2013, 06:06 PM
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#2
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: WBRT ???? info input ??
Dear cat,I am sorry to hear about your brain mets! I don't have any input on war but our gurus will kindly share their experience. Few people have tried injecting herceptin in the brain- Paul is an expert on this! There are only few locations that offers it - maybe worth checking out. Hugs to you!
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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08-15-2013, 12:02 AM
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#3
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: WBRT ???? info input ??
It is very scary. I had whole brain radiation this January. The treatment itself was not painful and actually did not bother me much. The side effects from the high dose steroids...I noticed very much and they are hard to wean off. I gained a LOT of weight. Im back down to my normal size now. My hair did fall out, and I was shiny bald...it has grown back now for the most part. I have one thin patch right at the middle of my forehead. I do notice some deficits...I don't exactly feel "normal" per se...I search for words, my short term memory is kind of shot. Im tired and weak a lot of the time. I don't feel like it has affected who I am, and in my case with five tumors and now no tumors, I feel like it was worth it. But each person is different, and hopefully others will come along and share their experience as well.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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08-15-2013, 09:14 AM
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#4
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Senior Member
Join Date: May 2010
Posts: 184
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Re: WBRT ???? info input ??
Thank you Yanyan for your support and KSgal for your insight. I am glad you have beaten the tumors and are able to deal with the side effects.
I saw my rad onc on Tue with my husband and we decided since I had 2 areas at this time we would cyberknife the areas and keep a close eye on things with MRIs every 3 months. It would be nice to have a decreased chance of recurrance but at this time fits better with my life. I had a routine physical/Pap and I cannot believe it but they found adenocarcinoma cells in the Pap! I think my husband believes it to be more breast CA and I don't have the heart yet to tell him it may be endometrial, at least until I get a biopsy from the gyn/onc. I am hoping it is some sort of fluke. I just can't believe what God is throwing at me lately. I feel like I'm sitting in one of those dunk tanks and he keeps throwing balls, hitting the mark and I keep getting dunked over and over. I still feel strong and have not quit in any way but my shoulders are starting to feel weak and it is getting harder to hold them up under all that is happening.
Thanks for letting me vent.
It is helpful to read the good news people write in about so keep it up everybody.
Hugs, 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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08-16-2013, 05:22 AM
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#5
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: WBRT ???? info input ??
Cathy,
I love your dunk tank analogy... well said.
It does just seem to be one dunk right after another sometimes!
Unfortunately, being God, he has excellent aim...never misses.
I guess we should count ourselves lucky that so far the tank is only filled with water, and not too deep! 
If it's true that "what doesn't kill you, makes you stronger"... you...me...and a few of our HER2 friends could take over the world if we wanted to!
Best of luck with your cyberknife! If it matters at all... I think you've made a wise choice.
Sending love and prayers your way!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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08-16-2013, 09:35 AM
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#6
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Senior Member
Join Date: May 2010
Posts: 184
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Re: WBRT ???? info input ??
Denise, Thank you for putting into perspective that at least it's only water and not too deep. I guess going to a pity party once in awhile is neccesary to realize things could be so much worse. There are so many people dealing with issues medical or otherwise, that it made me think how gratefull I am for the rest of my life and the blessings I do have.
And yes, I do feel I am stronger than I ever have been, not always physically, but definately mentally.
So, moving forward, one thing at a time, one day at a time.
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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09-10-2013, 09:04 AM
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#7
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: WBRT ???? info input ??
Cat,
There is a rumor of a new clinical trial using Intrathecal Pertuzumab at relatively high dose. This is based on work with my wife, Nina, who had the same issue in the brain as you did. I can tell you that the IT Herceptin with Topotecan has kept her brain and spine issues under control for almost two years. She initially had a large tumor on the brain surface that was removed by surgery, followed with Cyber knife, then lapatinib and Xeloda. She had additional Cyber knife treatments, but it progressed into the spinal area. At that point, we took charge and started IT Herceptin and Toptecan through MD Anderson. The results have been very good. The MRI scans this weekend on the brain and spine show no evidence of disease, which agrees with the spinal fluid analysis. Keep the faith as wee are trying to get women like you into a large clinical study.
Paul
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