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tnbc recurrences with mets. to the brain

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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
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

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sarah66 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post 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?
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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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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
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

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sarah66 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post 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
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 sarah66 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2012 at 12:15am
Dear Sarah,

thanks for the update...

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

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 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.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post 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
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 TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post 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.
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: 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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 Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2012 at 1:23am
Sarah and teamconnor,

Just wanted to send you love and caring thoughts.

Grateful for today..........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2012 at 9:12pm
THANK-YOU EVRYONE FOR  YOUR SUPPORT!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hummingbird10 Quote  Post ReplyReply Direct Link To This Post 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
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