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tnbc recurrences with mets. to the brain

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Topic: tnbc recurrences with mets. to the brain
Posted By: sarah66
Subject: tnbc recurrences with mets. to the brain
Date 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.



Replies:
Posted By: teamconnor
Date 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

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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


Posted By: teamconnor
Date 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!

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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


Posted By: SagePatientAdvocates
Date 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.

http://cancer.unc.edu/research/faculty/displayMember.asp?ID=622 - http://cancer.unc.edu/research/faculty/displayMember.asp?ID=622

http://%20clinicaltrials.gov/ct2/show/NCT01173497?term=iniparib+AND+brain+AND+mets&rank=1 - http:// clinicaltrials.gov/ct2/show/NCT01173497?term=iniparib+AND+brain+AND+mets&rank=1

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.

http://cancer.ucsf.edu/people/melisko_michelle.php - http://cancer.ucsf.edu/people/melisko_michelle.php

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

http://www.brainmetsbc.org/ - http://www.brainmetsbc.org/

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." 
" http://brainmetsbc.org/files/Weil%20NVs.pdf - 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?




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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


Posted By: Natalie
Date 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

http://foodforbreastcancer.com/news/a-story-of-long-term-stage-iv-her2%2b-breast-cancer-survival - http://foodforbreastcancer.com/news/a-story-of-long-term-stage-iv-her2%2b-breast-cancer-survival



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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


Posted By: denise07
Date 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


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DX Idc 10/07,st2,gr3,2/6 lymphnodes


Posted By: sarah66
Date 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.



Posted By: teamconnor
Date 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

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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


Posted By: teamconnor
Date 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

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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


Posted By: Natalie
Date 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


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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


Posted By: sarah66
Date 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


Posted By: sarah66
Date 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.


Posted By: teamconnor
Date 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

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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


Posted By: teamconnor
Date 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.

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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


Posted By: SagePatientAdvocates
Date 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 - http://www.ssa.gov/pgm/disability.htm  and http://www.ssa.gov/pubs/10029.html - 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).   http://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 file://localhost/tel/1-800-877-8622 - 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 http://www.LawHelp.org/ - www.LawHelp.org and the National Cancer Legal Services Network http://www.NCLSN.org/ - 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 - 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







-------------
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


Posted By: sarah66
Date 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.


Posted By: SagePatientAdvocates
Date 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


Posted By: sarah66
Date 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.



Posted By: sarah66
Date 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.


Posted By: SagePatientAdvocates
Date Posted: Jun 14 2012 at 10:48pm
Dearest Sarah,

thanks for keeping us posted.

continued ++++++ vibrations 

prayers remain and shall..

warmly,

Steve


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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


Posted By: 123Donna
Date Posted: Jun 14 2012 at 11:03pm
Sarah,

So glad to see you posting.  Hope the rest of the tx goes well and you see much improvement.

Hugs,
Donna


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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: sarah66
Date Posted: Jun 18 2012 at 4:44am
how did your mri results come out, hope good news. so far okay with the whole brain radiations. so swelling from inside the brain d/t the radiation. but its not bad. scant of a headache. no nausea, heartburn from the steriods, have to take 4mg of decadron twice aday to decrease th swelling. so i hope is well take saraH.


Posted By: sarah66
Date Posted: Jun 18 2012 at 4:51am
I'LL TRY TO KEEP EVERYONE UPDATE, NOT TO MUCH CHANGE DAILY, WEEKLY IS BETTER. MY COUSINS ARE FROM CHOKIA,  ILL RT OUTSIDE OF E. ST LOUIS. MY FATHERS FAMILY MOST OF THEM IN ILL. MOSTLY MILLSTAT, AND AVA. COLLINSVILLE/ I CAN'T REMEMBER HOW TO SPELL THE SMALL TOWN CLOSE TO E. ST. LOUIS. CHOAKIA? NOT SURE, HOPE THINGS ARE GOING WELL FOR YOU. SARAH


Posted By: teamconnor
Date Posted: Jun 18 2012 at 4:54am
Sarah I've been trying to find this and just had an alert on my phone. So the entire brain radiation is doing good? My dr said that there is a 10% chance of memory loss have u heard this from your dr? Found out Friday I have 2 more BB size tumors and tw original tumor is now larger and needed to b removed but can b off chemo for 8 weeks so beginning radiation today on the larger tumor only. Tentacles r starting to form so we have to get this under control. Other tumors have radioactive surg but I'm afraid entire brain may b next step. Please please keep me informed anyway possible with what u r going though every detail. I will get notification on my phone so I can go right too it. R u able to work still drive yourself?

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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


Posted By: 123Donna
Date Posted: Jun 18 2012 at 11:16am

Sarah66,

I think the town you are referring to is Cahokia, IL.  We live close to the Mississippi river too.

Donna


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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: sarah66
Date Posted: Jun 18 2012 at 11:16pm
thanks, i was 12 y.o. when my family left cahokia, ill. and could spell it for years, but the other day it just would not come to me. sarah.


Posted By: sarah66
Date Posted: Jun 19 2012 at 12:13am
i can still drive, and fully function well at home, forgetful just in spelling words sometimes, still slight headache, to rt. temple area and rt forehead. the pract. nurse talks with me daily and i see my radiology dr. on tues. so far i have had 8 treatment of whole brain radiation, the radiation tx its self last tops 10 mins or less. i ask how much i was recieveing in rad. the tech said she thought 50 rads a session. but this is not the best information on rads. i will ask the dr. tomorrow when i see him and let you know for sure. iam cooking cleaning, helping my husband with putting new sliding on our house. since the radiation, more so now, esp. last two, now more dizziness, my head was making feel like i needed to lean to rt. when i would first get out of bed in am. this has also stopped, and no nausea, the pract. nurse i see, spec. in oncology. my diet has changed no sugar. except for honey in my green tea i make by the picture, with 4 green tea bags boiled and put in a 2qt. picture with 1/4 cup of honey, actually the honey varies iam trying to do less. my diet is base on anti-- inflammatory diet, i believe this diet is decreaseing the swelling that is causes by the actual radiation tx itself. forgive me for my word usage, its has really been terrible. long winded would be the correct word. i also started mediation session at 430am every day. and breathing in 7 seconds, then hold 7 seconds, then release 7 seconds, x 10 reps. each. plus run on my treadmill for 15 mins. i hope to add more excercise. my appetite due to the steroids, had made when to eat every thing in sight. so i try tone it down with eating foods said to help decrease the cancer. about every two hours i eat. i did gain 7 lbs of water but not all at once, its took a couple of days. but the diet and excercise has decrease this down 4 lbs already. food i choose for those in betweens. are so far, 2 appricotes, two cups of cabbage and onions streamed, 1 cup size sweet potatoes. popcorn four cups coated in exvirgin olive oil with lands to lake butter made with olive oil just 1 tablespoon. i eat no beef whats so ever. and very little chicken, lot of fish, salmon, catfish, haddack. salads lots of fresh salads. i have ordered a book from half.com its called anticancer diet by servan sereiber md. phd. also some books and cd's by dr. andrew weil. on antiflammatory diet and meditation.    forgot.. the steriods taking y mouth cause me heartbburn alot. so i drink orangic milk 1%, the cheapesst place to buy it is at walmart. 3.58 a 2qt. plus take mylanta. once a night if its really bad. i still have my hair but is starting to fall out slowing, they say my tx. are going well.  i hope this isn't to much.sevN SEHREIBER THE BOOKING IAM WAITING, HE LIVED 20 YEARS WITH CANCER, AND LIVE BECAUSE HE CHANGED HIS WAY OF LIFE. THEY WILL NOT LET ME WORK RT NOW, D/T POSSIBLE SEIZURE. WHICH HAS NOT HAPPEN YET. MY DR. HE'S LIKES HUMOR, SO HE SAID I COULD DRIVE UNTIL I HAVE A SEIZURE.. SO FAR NO SEIZURE.  STRESS, I KEEP MY STRESS, LOW AS I CAN.  I HAVE PROBLEMS SLEEPING, I WAS TAKING MY DECADRON AT 8PM THIS CAUSED ME TO NOT SLEEP ALNIGHT, FOR SOMEREASON STERIODS MAKE  ME HYPER, I FOUND IF I TAKE IT AT 3-4AM AND 3-4PM LESS PROBLEMS WITH THE NOT SLEEPING. AND I HAVE NOT NAUSEA. I HOPE THIS HELPS I WILL TRY HARD TO GIVE YOU EVERY DETAIL. IF THERE SOMETHING I HAVE MISSED FEEL FREE TO LET ME KNOW. OR IF THERES A QUESTION YOU WOULD LIKE FOR ME TO ASK MY DR. I'LL TRY MY BEST TO HELP. OKAY. TAKE CARE SARAH.


Posted By: teamconnor
Date Posted: Jun 19 2012 at 4:30am
This has helped me tremendously. It's odd that u say staying away from sugar because I've been craving honey like u wouldn't believe. This is interesting. I'm on decodron as well but the xeloda and ixempra I'm on for the other cancer in my body makes it impossible for me to eat any dairy and of course I stay away from soy and no sweets. Although I try to keep my iron up now I eat lots of fruit. Salad no ranch gotta find a new salad dressing I like. All the food makes me very sick except for the good stuff so God has answered question no bad stuff do we can fight this cancer. It's refreshing to hear that u can still function and continue. Anything u post will help so many people esp the ones that r going through it. Sometime I think quicker than I can type and can't get what I want said out so just bear with me. I'm also on keppra antiseizure meds to prevent seizure will prob b on that for a while. I start radiation on the one tumor that has grown we'd after seeing dr yeaterday. It will b nice not to have soapy headaches. I'm happy for u yours r slowing down. Anything else u can think of please post esp your progress! I will do the same. Thank u so much for starting another sleepless morning off right! Have a great day

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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


Posted By: sarah66
Date Posted: Jun 19 2012 at 9:12am
i promise to keep u updated and everyone else, take care sarah. i have learn to eat my salads without dressing. at first i didn't care for it, but now its okay, not great but okay.


Posted By: sarah66
Date Posted: Jun 28 2012 at 9:23pm
sorry its been a while, lost my way back to this site. my radiation is done. no headache, some pressure on the rt eye and rt tempal. no dizziness, no nausea, dr said there would be some swelling, and i could slowly take myself off the decadron, whick is great, i guess ha, now that i have gained 10 lbs and look like the dough boy. they can't check results for 6wks do to radiation continues to work that long. i see me onocology dr. july 2. hope he's not too tire for all of this. when i get more news i'll let yu know. i did 180 rads a day, for 21 days. take care sarah.


Posted By: SagePatientAdvocates
Date Posted: Jun 29 2012 at 12:15am
Dear Sarah,

thanks for the update...

prayers and +++++ vibrations continue for you..

warmly,

Steve


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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


Posted By: sarah66
Date Posted: Jun 29 2012 at 2:46am

teamconner, i found that the breathing excerises help take a way my rt lobe headache. after 10 reps of deep breathing i also felft better all over. the breathing needs to inhale thru the nose mouth close eye closed back straight and breath in slowly with the count of 7.then hold for a count of seven,, then blow air out of your mouth slowly, as you lower youur chin to your chest with count of 7. then repeat 10 times. try to relax. stretch your neck muscle left to right, then back to front. and yourself repeat the words heal, and if you believe in God. ask him to help you, and repeat oh lord heal me, help me to relax show me the way. i also have a reciept thats good for yu. its a soup. its base is broccoli in mild cheese,  one use to make broccoli cheese soup. then add, corn off the cob, cabbage, garlic, onions and red potatoes. its very good. take care sarah.



Posted By: teamconnor
Date Posted: Jun 29 2012 at 4:10am
Thank u for your updates I've have 5 and already can feel the difference. But on a worse not the cancer in my liver has tanked over. So I start gemsar today 3 Fridays in a row so my focus has changed   If it doesn't work hospice will have to b called in. But I won't mentally give up only when my body tells me. I wish u the best of luck with your healingand everbody on the website! And thanks again with all the advise and website

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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


Posted By: TriplePositiveGirl
Date Posted: Jun 29 2012 at 12:11pm
Good luck Teamconner with the Gemzar. I really am hoping and praying this drug will work on the liver mets. I will be sending positive thoughts to you over the weekend!
Best, 
Lisa


Posted By: Natalie
Date Posted: Jun 29 2012 at 1:51pm
teanconnor,
You are in my thoughts and prayers for having an easy time of it today and every day. Just breathe.


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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


Posted By: sarah66
Date Posted: Jul 04 2012 at 12:05am
july 2nd i saw my onocology dr, he said my p.e.t. scan shows no active cancer. but also believe he said i have triple neg. brain disease. we won't know how well radiation went for at least 6 wk. then they will do a mri of my brain. if the mets are still there then he said they will do the gamma knife tx. i will have to go to cleveland clinc for that. right now just have some swelling from the radiation tx. can't hear well, swelling even in my ears. still have a headache on the rt. frontal lobe. my dr states this is because of the swelling d/t radiation tx. does anyone have any information on triple neg. brain disease. i still trying to eat all veggie and fruit. and beans for protien. getting better at it, daily. still on steriods for 6 more days. this medication makes me want to eat a house. take care sarah.


Posted By: SagePatientAdvocates
Date Posted: Jul 04 2012 at 12:31am
Thank you, again, for your update, Sarah. Please keep us informed, if you can. We are all in your corner.

My heart goes out to you and my prayers and ++++ vibrations, as well..

warmly,

Steve


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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


Posted By: Grateful for today
Date Posted: Jul 07 2012 at 1:23am
Sarah and teamconnor,

Just wanted to send you love and caring thoughts.

Grateful for today..........Judy


Posted By: sarah66
Date Posted: Jul 08 2012 at 9:12pm
THANK-YOU EVRYONE FOR  YOUR SUPPORT!


Posted By: hummingbird10
Date Posted: Jul 08 2012 at 10:16pm
Hi Sarah,
Just read through your postings from the beginning. You asked if anyone knew someone with
brain mets and how they were doing. I met a lady during an infusion who had had mets to the brain and had had the gamma knife and was doing very well.  The only problem she told me that
bothered her was neuropathy in her FINGERS!  Everyone I knew has that after chemo.
So, yes, she is a survivor, so you just keep doing what you're doing.
Where is McDonald, Ohio, I'm a "Buckeye" too.  Did you get the radiation at the Cleveland Clinic?
All the best,
Hummingbird


Posted By: sarah66
Date Posted: Jul 08 2012 at 11:35pm
no cleveland clinic radiation, but waiting on appt. with them for 2nd opinion. my dr. are great, but everything moves so slow. i just want to make sure i recieve the best care. they did not do chemo after radiation. because my .pe.t. scan was cancer free. but i still have problems with my rt, side of my body center more rt in back gives sharp pain alot. and the tip of my liver in front. good to hear someone is a survivor. mcdonald is close to youngstown by ten miles. thanks. the only information i could find about tn brain disease, was life expectency of 18-20 months. my mri is aug 6th. thank-yu take care sarah. are you in remission. if so that great. hows everything going for you. my first sign of brian cancer was a piercing pain thru the rt eye that did not go away. then to headache and just stay, mild but there. until radiation started and steriods.


Posted By: 123Donna
Date Posted: Jul 08 2012 at 11:49pm
Sarah,

Denise could be more exact with the history, but there was a lady on this forum who had wbr and she's 3 years Ned.  


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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: sarah66
Date Posted: Jul 09 2012 at 4:43am
thanks, would like to think i have longer. right ,3 years sounds good.. take care sarah.


Posted By: sarah66
Date Posted: Aug 13 2012 at 4:05am
aug 6th mri of the brain shows tumors shrinking.. good  news for now PET WAS normal. take care sarahSmileTongueBig smileLOL


Posted By: SagePatientAdvocates
Date Posted: Aug 13 2012 at 6:42am
MARVELOUS!!!!!!!

thanks for sharing, Sarah...

warmly,

Steve


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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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