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Old 11-24-2011, 08:46 AM   #1
Patrice1968
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Mets to Brain

Hi everyone!
I've recently gotten diagnosed with mets to my brain...my oncologist is referring me to a radiologist and I should get a phone call any day. Apparently there are "many" mets. I've been reading up on as much as I can via the internet and by the sounds of it I'll probably be going through the full brain radiation therapy. Just wanting to know if anyone out there has been through this themselves? Any advice/information to share? I'm extremely worried, obviously - I'm normally a very positive person and with my original cancer diagnosis this is how I was...but this is terrifying me. Any advice would be appreciated, and thanks so much!
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Diagnosed with Stage 4 Breast Cancer in September 2010. HER2 positive, Estrogen Receptor Positive, metastasis to spine, ribs, uterus and liver.

Sept 2010: 6 rounds Docetaxel, Herceptin and Tamoxifen indefinitely.

StayingHealthyEvenWithCancer.blogspot.com
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Old 11-24-2011, 08:58 AM   #2
Delaney
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Re: Mets to Brain

Patrice, sorry you have to go thru this. I had wbr in March. The hair loss didnt bother me so much but I also had fatigue and lack of appetite. But I endured it. Am really hoping I dont have to do it again. Best of luck.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 11-24-2011, 12:58 PM   #3
tricia keegan
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Re: Mets to Brain

Patrice I have no personal experience of this but wanted to wish you well, there are quite a few members here who have overcome brain mets including Christine who's still NED years later so please take some encouragement from that and good luck!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 11-25-2011, 01:28 AM   #4
Survivor2be
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Re: Mets to Brain

Patrice. It is so scary, isn't it!!! I was diagnosed with a single small lesion 10/28/11. I just had surgery to remove it. The future plan is not set yet. I am on herceptin and working on tykerb for the HER2 status. I will also get another round of chemo based on the breast recurrence of 9/2011. I have been advised to have whole brain radiation to "sterilize" the brain, but am seeking some second opinions about that. PM me if you wanna talk. I know how difficult this is in life and scary, but I've found some really positive information out there!!!!
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Old 11-25-2011, 02:12 AM   #5
Patrice1968
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Re: Mets to Brain

Thank you for your replies! I'll keep you posted when I find out more with my consultation next week...
__________________
Diagnosed with Stage 4 Breast Cancer in September 2010. HER2 positive, Estrogen Receptor Positive, metastasis to spine, ribs, uterus and liver.

Sept 2010: 6 rounds Docetaxel, Herceptin and Tamoxifen indefinitely.

StayingHealthyEvenWithCancer.blogspot.com
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Old 11-25-2011, 05:00 AM   #6
Paula O
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Re: Mets to Brain

Dear Patrice,

I just wanted to give you a ((((cyber hug)))))). I hope the consultation goes very well and the treatment is highly successful.

I am praying for ya and rooting for ya.

Paula
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Old 11-25-2011, 08:41 AM   #7
Jeana
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Re: Mets to Brain

Patrice, i was diagnosed with 3 brain met's in April 2011 after having a seizure. I had surgery to remove the 2 that were in the back of my brain because they were connected together and then I had WBR to shrink the one in the front of my brain.. So far so good on that but was diagnosed in September with a tumor in the chest wall and possibly a lesion on my Lung.. Had a catscan about 3 weeks ago and showed that the tumor in my chest wall is stable and the one on the lung is gone, and they didn't see anything in the brain but I will get a pet scan in December and a brain MRI in January and I know how you worry because I worry everyday about it coming back in my brain..I will pray for you and never give up hope..Hug's Jeana
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Old 11-28-2011, 08:44 PM   #8
Survivor2be
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Re: Mets to Brain

Just made my decision that I will do WBRT in december. Had my cranio-surgery 11/17/11. Just feel like I need to do everything medically possible to prevent any future recurrence or I will regret my decisions. I'm scared and feeling a little sorry for myself right now, but I know that it was the right decision for me.
__________________
Original dx: 9/17/2010 triple negative, Stage II
Neo-adjuvant chemo of AC-T
Bilateral mastectomy and axillary node dissection. (1/11 lymph nodes +)
Tissue expanders and fill
Radiation to breast and axilla

Breast recurrence on radiation: 9/2011 now HER2 +
This time HER2 positive, started herceptin

Brain metastasis: 10/2011
Surgery to remove lesion 11/2011

All cancer gone 11/17/2011

Confident I will outlive my oncologist!!!
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Old 11-29-2011, 08:31 AM   #9
Joan M
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Re: Mets to Brain

I had one brain met removed by surgery which was then followed by 5 rounds of targeted radiation to the tumor bed (IMRT, or image modulated radiation therapy).

WBR is the standard of care. However, and that's a big however, many survivors who develop several brain mets have had individual lesions zapped with targeted radiation. In some cases up to 8 or 9 individual tumors over time. And they continue to do this if a new one pops up. In your case, how many is "many."

Did you get a second opinion? From a major cancer center/hospital? Often smaller facilities do not have equipment sophisticated enough to offer targeted treatment. WBR has long been the stardard, but that has been changing as technology has been improving. Did the rads onc mention targeted radiation?

Hopefully some of the women on this board who have had multiple brain mets will give you more specific information about their experiences with targeted radiation.

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!!

Last edited by Joan M; 11-29-2011 at 08:35 AM..
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Old 11-29-2011, 04:50 PM   #10
NEDenise
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Re: Mets to Brain

Patrice and Survivor,
No wisdom to share...but lots of prayers and good wishes!

You may not think so, but you both seem extraordinarily brave to me!

God bless both of you! I'm inspired by your courage in staring down the beast. Please keep us posted.
Denise
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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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Old 11-29-2011, 08:58 PM   #11
Survivor2be
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Re: Mets to Brain

[B]Joan[B], Thank you for the concern. My primary oncologist are at a community center which does not have targeted imaging. They are Texas Oncology, which is part of the MD Anderson network, so they follow all the MD Anderson info. I went to my second opinion at a research/teaching hospital that is NCI accredited to get a different perspective. They did give the option of targeted therapy, as well as WBRT and watchful waiting.

I had actually already made the decision to do the WBRT when I read my molecular study report on my tumor. It talks about the specific biomarkers for my tumor and what drugs will work the best. Some take-home points for me were that my tumor markers indicate early recurrence and shorter disease-free survival.

While I don't believe that that will affect how long I'm gonna live (that's only up to God, same as it was before I had BC), it does make me want to be as aggressive as possible with both medical treatment and my "way of living, or terrain" to help make sure that recurrence risk is as low as possible and that I won't regret NOT doing something earlier.

It helps me to see that you have not had a brain recurrence in 3 years: Congrats!
__________________
Original dx: 9/17/2010 triple negative, Stage II
Neo-adjuvant chemo of AC-T
Bilateral mastectomy and axillary node dissection. (1/11 lymph nodes +)
Tissue expanders and fill
Radiation to breast and axilla

Breast recurrence on radiation: 9/2011 now HER2 +
This time HER2 positive, started herceptin

Brain metastasis: 10/2011
Surgery to remove lesion 11/2011

All cancer gone 11/17/2011

Confident I will outlive my oncologist!!!
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Old 12-01-2011, 02:14 PM   #12
Patrice1968
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Re: Mets to Brain

Hi there! Thank you to all for your comments - they are appreciated! It appears I am to start radiation soon - whole brain radiation, and ten days of it. They said I do have over a dozen mets to the brain, but they are all very small which gives me some hope. Thank you again for your comments - very appreciated!
__________________
Diagnosed with Stage 4 Breast Cancer in September 2010. HER2 positive, Estrogen Receptor Positive, metastasis to spine, ribs, uterus and liver.

Sept 2010: 6 rounds Docetaxel, Herceptin and Tamoxifen indefinitely.

StayingHealthyEvenWithCancer.blogspot.com
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Old 12-01-2011, 05:28 PM   #13
caya
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Re: Mets to Brain

Good luck with the WBR Patrice - zap zap to those brain mets!!

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 12-01-2011, 07:22 PM   #14
Laurel
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Re: Mets to Brain

You hang in there, Patrice! I am pulling for you to breeze through WBR and obliterate those nasty mets!!!!
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 12-01-2011, 08:38 PM   #15
kiwigirl
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Re: Mets to Brain

Hi i've had mets to the brain.10 in total then i had wbr 21 shots with vmat radiation i had some shrink and one go and then six weeks later they grew back with two new ones. I've been on tykerb and xeloda for 3 months i just had a mri and now i have the three mets the largest is 17mm, 8mm,6,mm huge huge huge improvement and no new ones and very little edema. There is always hope and i believe i will get rid of mine.

The wbr does break down the blood brain barrier which helps the drug do there job.

Stay strong.

Jacqui
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Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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Old 12-02-2011, 12:13 AM   #16
Patrice1968
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Re: Mets to Brain

Thanks again everyone! And Kiwigirl (Jacqui), wow have you given me hope! You are doing wonderful! I think I will be on Tykerb as well, but he hasn't mentioned anything about Xoleda but I'm seeing that the two go hand in hand with many people. So it sounds like the rest of your mets are disappearing just by Tykerb alone! This is wonderful news, and I wish you the absolute best - please keep me updated!
__________________
Diagnosed with Stage 4 Breast Cancer in September 2010. HER2 positive, Estrogen Receptor Positive, metastasis to spine, ribs, uterus and liver.

Sept 2010: 6 rounds Docetaxel, Herceptin and Tamoxifen indefinitely.

StayingHealthyEvenWithCancer.blogspot.com
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Old 12-02-2011, 07:02 AM   #17
Delaney
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Re: Mets to Brain

Jacqui, thanks for the positive post, it gives me hope. Best wishes, and to Patrice also.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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