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tnbc recurrences with mets. to the brain

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sarah66 View Drop Down
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    Posted: Jun 01 2012 at 9:25am
iam 58 y.o. and just found out i have metstic tnbc to the rt. frontal lobe of my brain. april 2011 have a left masectomy. by oct 2011 after adriamycin,cytoxan, taxol chemo, and radiation to left breast area then nov 29 2011 had rt. masectomy and reconstruction with abd flaps surgery. my question is any good advice, and does anyone know if anyone has survived metastic tnbc to the brain. i have two areas, one is 1.2 cm the other is 6mm. only symptons is dizziness at times and headache low grade all the time. i start radiation monday. everything i have read about tnbc with mets. to the brain. live only 3-9 mos. please advised. sarah.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2012 at 8:28pm
Hi Sarah.  i just found out 2-3 mths ago that i had a 2.3cn brain tumor in lower left side; had radioactive surgery that basically zaps it since it was small enough.  they said usually takes 2-3 mths for the shrinkage to begin.  About 4 weeks later 3 smaller tumors decided to show their ugly faces and i kinda knew what it was because u cant mistake the feeling of those particular headaches.  same surg was performed and i go back on june 15th for mri of my brain to see if new ones have occured and if any r shrinking.  everybodys case is different but they have never said I will die from the tumors in my brain.  they did tell me that they want to avoid the all over brain radiation because of the damage it could cause but someday it may have to come to that if more come up; not sure of course but im in a constant worry about every pain i feel in my head.  i hope this helps and please keep in touch so i know how you are doing! best of luck
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2012 at 8:30pm
ps stop reading online go by what people say who have it on this website.  Many people were in tears after reading online!
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2012 at 9:08pm
Dear Sarah,

welcome to our TNBC family. I am sorry you have need to be here and especially saddened that you have brain mets.

The sad fact is that there are no drugs to treat brain mets that have been approved by the FDA. Having said that we have seen, here, several women who have lived for several years with brain mets. As always, every patient is an individual and results vary.

What we have, at the moment, are clinical trials that target brain mets that originate from breast cancer.
From what I have seen WBR and gamma knife may prolong life but don't 'cure' the cancer.

I am going to mention two physicians to you that I respect who specialize in brian mets. I would suggest you have your oncologist check with them and see if the trials offered may be something that is suggested to you.

I am a patient advocate but I am not a medical professional so please do not take my word for anything but, rather, check with your oncologist. I am sending you my contact information in case you would like to talk.

There is a trial at several medical centers around the country but the main expert on the trial, in my opinion, is Carey Anders at UNC. Here is a link to the trial which specifically targets women with TNBC and brain mets. There have been some encouraging results from the trial and some failures, as well.



Carey Anders is a marvelous oncologist and a lovely woman. I can also say the same about Dr. Michelle Melisko at UCSF. She is an expert in brain mets as well.


There is also an excellent resource that I would suggest you look into


From that site-

What's new:
As part of their recommendation that women with brain metastases be permitted to participate in Phase I clinical trials, neurosurgeons Nicholas Marko and Robert Weil, of the Cleveland Clinic, review and update the prognosis for brain metastasis patients. Dr. Weil is a member of our Center of Excellence. Some excerpts:
"The frequently held conception that the presence of BM (brain mets) portends imminent neurologic decline and impending death are predicated on outdated data. While WBRT and corticosteroid therapy was once the sole, palliative treatment strategy for patients with BM, the rapidly evolving, modern era of multimodality management of CNS (central nervous system) disease has afforded a nearly fourfold increase in the mean survival expectation of these patients over the past 15 years... Aggressive local therapy for BM has shifted the nature of morbidity and death of these patients, with the majority of those with advanced-stage cancer now dying from their primary disease rather than from their CNS metastases....In summary, modern, multimodality therapy for patients with BM has resulted in significant improvements in local control and overall survival, and CNS disease is no longer the primary determinant of premature debility or mortality." 
"Patients with brain metastases in early-phase trials
Nicholas F. Marko and Robert J. Weil 
J. Nat. Rev. Clin. Oncol. 8, 390391 (2011); published online 17 May 2011; 

Good luck to you...

warmly,

Steve

p.s. sorry where is MACDONALD? Canada?


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2012 at 9:21pm
Sarah & TeamConnor and anyone else with Mets to various organs,
I just got done reading an article on a lady living for a long time with mets to various places. Seems it was meant to be that I read this, then came here and saw this thread. I hope this brings some people some level of hope.
Although pathology and circumstance might be different, I feel it is a very good story to read.
Positive energy and thought to all of you lovely people for continued quality of life.
Natalie


TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2012 at 11:46pm
Sarah.
I am so sorry you are going thru this, but you have to fight with all of your might, this disease is ovrerwhelming I just cannot stand it. I will pray for you all the way.
Love,
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 2:13am

just woke up  start  radiation monday or tuesday, they did not call today to let me know when i start. so will keep in touch. thank-you everyone for your return replies were very helpful. sarah.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 5:54am
Sarah you are in my prayers together we will beat this...the most important thing to me is Faith and never ever to give up.  All of us are fighters but new places esp the brain is scary  that was my biggest fear.  im getting ready to read the articles that everybody has posted so thank you for responding to sarah and inturn helping me.  this is a wonderful website but i have to admit being on it helps me but also scares me.  everybody is different on how they  respond to cancer, chemo, rad, etc but it cetainly helps to hear and get advice from so many helpful people.  again thank you so much
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 6:02am
Natalie thank you for this article.  that woman is a fighter like me.  I will not ever let cancer beat me!  I still work, am young and refuse to leave my family.  I talk a lot with God and what his plans for me is to be here and help people  its not quite my time and He gives me all the strength i need to have a happy life.  My support system with my husband, children, family and friends is overwhelming and they just cant believe how im doing.  We can all fight even if it means this cancer doesnt lay dormant for some like myself and take chemo for as long as my heart can take it!  Sorry to be on my soap box but you were also meant to see sarahs and my post!  Tongue Thank you
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 1:15pm
teamconnor I am glad you enjoyed the article, I suppose it was just meant to be all around. it sounds like you have the best in support and fight from within. 
We never really know how strong we are until there is no other choice.

You are still very young and have a lot to offer to everyone around you Wink
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2012 at 2:22am
i live in mcdonald ohio, i can't say much, i fear this whole brain tx, hopefully i will go monday, but they it might have to wait till tuesday. raidation is to call my. iam a nurse and i pass medication they will not let me work. which i understand. my insurance is going to stop in 6 mos.  my insurance now is reasonable, but in 6 mos. i will be on long term disabilaty i understand the insurance is very high then. and the amt. coming in will be very low. how does one pay for all of this once insurance changes to cobra i think it is called. my copay and 20% i pay now takes all of pay check. so iam not sure what to do after 6 mos. my husband brings home a paycheck, but his is also depleted from housepyt. electric, food ect. i know this is not a tnbc question, but am concern how i will continue my tx once my insurances stops.... plus in four wks my fmla will be depleted. does anyone have any advice on this matter. i hope its a okay question to ask. take care all of y, thank-yu for your support. sarah
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2012 at 4:58am
WELL  i have had two whole brain radiation tx, and the headachs have decrease. still there but getting better. and i still have my hair. ha ha.  probably too soon for my hair to fall out. natalie, teamconnor,denise07 good luck. i will try to keep you all updated. Thank-you for your support. and thank-you steve for you support and help also. I will not read anymore on line on tnbc,  your right teamconnor it does bring you to tears. This wednesday i have a P.E.T. SCAN done p.e.t. scans are only check from the neck down, this is to see if theres any more new areas. my p.e.t. scan done in jan. was clean, no cancer. if you have p.e.t. scan done make sure and ask your dr. about a mri of the head. i wish i had know about the p.e.t. scan not covering the head back in jan. i don't know for sure if it would have made a difference. take care sarah.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2012 at 5:17am
Sarah it to didn't realize the pet scan didn't cover the brain until my brain dr told me! The 1st tumor was there for 3 months and didn't know after PET scans we're performed that was upsetting but the headaches were horrible as we know and had to go to emerg room 2 times then they found them. 1st time one then had the radioactive surg then 4 weeks from the date of surgery 3 more were found with nothing showing on MRI until they grew. And now I upped the dose of decodron with perm of dr until next week for another MRI of brain because pain is back. I can almost pin point 2 new ones. How is the entire brain radiation going? This is something I'm afraid I will have to go through but dr seems to think what he is doing will work since its a diff tumor type not bleeding ones can't think of the name to me brain tumor is scary enough. Please keep me posted on your situation
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2012 at 5:30am
Sarah first you need to try not to stress it will only cause more pressure and pain in your head. U come first before anything. But I do know how stressful it is to have to worry about financial needs. There r many programs out there to help ESP if u have children. U would have to call the county u live in to find out what u would qualify for. Cancer society can also refer u. Regardless family friends co workers surely will help u with fund raisers etc to eliminate some of your worries. Keep praying and God will help u through bad and good times. I wish I could b of more help to u but please focus on your health first; because nothing else matters.
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2012 at 4:01pm

 

Dear Sarah,

 

Good morning and thank you for writing again.

 

Whatever you do, please do whatever you can to continue your insurance on COBRA. 

 

Unfortunately, it is my understanding that Ohio does not have a Health Insurance Premium Payment Program to help pay your COBRA premiums, but there are some organizations that may be able to help you.  Here is a link to an important information sheet on financial assistance programs:  https://www.disabilityrightslegalcenter.org/about/documents/NationalFinancialAssistance2012.pdf

 

Very importantly, you may qualify for Social Security Disability Insurance (SSDI). It can take a very long time to be approved for SSDI, but the process may be accelerated, under certain circumstances.  http://www.ssa.gov/pgm/disability.htm and http://www.ssa.gov/pubs/10029.html

 

If you have been uninsured for more than six months, then you may qualify for a Pre-Existing Condition Insurance Plan (PCIP).  www.pcip.gov

Finally, the TNBC Foundation has an 800 number you can call and you may be eligible for some additional small grants and also they may have other resources to suggest. You can call 1-800-877-8622 (TNBC).

 

I was at a TNBC fundraiser recently and contributed money to support the TNBC Foundation helpline. One of the things you may qualify for is a travel grant for treatment. The American Cancer Society also has a program where folks volunteer to drive you to treatment, called Road to Recovery.

 

Going through treatment for metastatic TNBC is daunting on its own, as you well know as a nurse and a woman with MTNBC. Having financial issues on top of that is very scary. Again, please, please do whatever you can to keep your COBRA and check out some of the resources I have mentioned.

As a patient advocate, I don't charge any fees but I also will not give you medical advice. I also cannot give legal advice that might be needed, either, but there are some good resources for legal assistance: LawHelp www.LawHelp.org and the National Cancer Legal Services Network www.NCLSN.org.  You can search for your local resources on each of these sites.

Sarah, I know I give you a lot of information and it may be very difficult for you to assimilate all of it now. I think the most important immediate things (and some of my advice mirrors other excellent advice you have received) I would suggest you concentrate on are-

1. concentrate on your health first. I would make sure you are physically able to go back to work before you do.

2. make sure you pay the Cobra premiums

3. find out what your legal rights are. A good attorney found at the sites listed above LawHelp.org and NLCSN.org may be able to tell you how to approach Social Security for quicker disability approval. It is my understanding that it is important that your claim be filed correctly so that you receive expedited treatment. Because you are under such stress it may be helpful to have an attorney, who is a disability expert, walk you through how to file for social security disability through the expedited process. 

4. when you have the strength please check out the link mentioned above-

http://https://www.disabilityrightslegalcenter.org/about/documents/NationalFinancialAssistance2012.pdf

I hope you are able to tolerate your WBR and that it helps you.

You are always welcome to call. You have been, and shall remain, in my prayers.

warmly,

Steve







Edited by steve - Jun 09 2012 at 5:46pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2012 at 3:45am
thank-you everyone for your support, iam still here and iam going to keep fighting! its the weekened and i have no update information now. but promise to keep every one updated. thank- you steve for all this information. i will work on all of this. thank-you. sorry my word usage is very poor. but iam still very functional. take care sarah.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2012 at 7:12am
Dear Sarah,

thanks for your updates and please keep them coming if possible. we all care about you.

my +++++ vibrations and prayers continue.

Please continue to try to find the beauty in each day.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2012 at 9:11pm

hello every one, my 4th tx of whole radiation and i feel good. no compliants, just small pressure on rt eye, and slight headache. but i did do something different ,i hope to get a 2nd opinion from cancer treatment center of american, in Zion ILL. Please pray everyone that they will except my insurances, and except as a pt. i have to finish my radiation here. then contact them one week after radiation. for appt. i still have eleven more tx. to go. has anyone tried ctca? hope everyone is doing well. sarah.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2012 at 10:33pm
well 6th whole brain radiation, and iam doing okay,slight frontal lobe achiness, but that the radiation, iam on decadron twice a day for swelling. radiation causes the brain to swell, but so far its not been too bad. but my dizziness is gone. also on a diet that i've just started a couple of days ago, anti-inflammatory foods for health is the name of the book aurthor barbara rowe and lisa davis. iam thinking decrease inflammation in the body, decrease swelling.  take care sarah.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2012 at 10:48pm
Dearest Sarah,

thanks for keeping us posted.

continued ++++++ vibrations 

prayers remain and shall..

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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