Brain Mets Sisters
Comments
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Glad to hear all the updates from you ladies. Surgery tomorrow at 7:30am!! Excited but naturally a little nervous. I'll keep you all updated! Hoping I have success because my symptoms are getting worse. Three more seizures since last Sunday and less & less function on the right side. Fingers crossed! And to all of you wih scans or starting radiation this week good luck!
Love & prayers
Nicole0 -
Nicole,
I hope things go great with surgery tomorrow. You are in my thoughts.
Jill,
I think you have an MRI coming up. All the best. I hope your vision improves.
Hugs to all going through scans and radiations.0 -
Nicole, good luck on your surgery!!
My last wbr is tomorrow. 14 treatments total and it I was cleared to strart back on Abraxane, tykerb and herceptin next wed. I have been getting herceptin weekly through this though. I was told the reason they stop the other drugs is it's too toxic with wbr.
Who all lost their hair? I did not. I lost a lot of it when I started abraxane but didn't loose anymore under wbr.
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I lost most of my hair on Thanksgiving Day. I now have some regrowth - it's a very funny mohawk growth pattern and I'm hoping it "normalizes" over the next few months. Ango - most of mine fell out a couple days after finishing WBR.
Nicole - good luck with your surgery.
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As far as I was told it does not, but ask the MO for sure and let us know! Thanks so much! Good Question.
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Nicole..Prayers and Hugs on your surgery!!
Terry0 -
Oh gosh Michelle so there is still a chance it might come out. Ugh. Not a big deal I guess. I'm use to bald. When I was on TDM1 and my hair was growing back, I was so anxious for it to grow out. I ended up using the Wal-mart brand of Rogaine. I don't know if it was the rogaine or just my hair decided to grow and get thicker but it did pretty quicklly.
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Thank you Formygirls, I was rescheduled for my MRI this morning at 6am. Heard nothing back today. I say....no news is good news and I'll dig my head back in the sand tomorrow.
xo Jilly
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Okay ladies...where do i start...I finished chemo on february 20th, radiation on april 10th and was planning on when to get rid of my expanders for my new boobs. Woke up April 20th with a numb foot ....turns out brain mets. I had a seizure on the 26th that put me in the hospital for Tumor in the frontal lobe removal on May 2nd. Gamma knife scheduled for the 21st with chemo to start again for the lung mets that have also developed on the 22nd. What a whirlwind 10 days in the hospital. Happy to be home but worried that i wont regain feeling in the right side. I feel totally blindsided by this and not sure where to turn. This site helped me thru before so Im back at the well looking for guidance and perserverance....bring it ladies.
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Hey ladies,
So surgery...went. Not brain necrosis, active tumor which blows. Even worse? Right side is weaker and will require inpatient pt and post surgical mri showed they got a lot but not all of it. So I know my options are limited and I'm being lazy because I know this thread already exists but my question is can repeat Srs if you've already had it once and options if you decline wbr? K
Lo I k know youre going thru something very similar. Love & prayers.
Nicole0 -
Nicole,
Glad your surgery went well. You can get repeat SRS. I asked this question to my team many times and have always been told that it can be done. I hope that is an option for you. Lots of hugs.0 -
I've had srs a total of 8 times i think my ro has said he's done it 23 times to one person all mine have been small like 11 mm or less 1 or 2 show up every 3 months never any se hope this helps and give u some hope hang in there all of u were doing great
love chris
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Starting WBR tomo..really hoping my double vision goes away and I can see without eyepatch..Hope all of you ladies have had a beautiful day..Hugs and Prayers!!
Terry
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(((Hugs))) Terry, hope your WBR is successful with minimal side effects.
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Hello my friends,
I wanted to update you all. It seems that I can hold off for another 6 weeks for a MRI. My doc talked a lot about necrosis this time, rather than progression. This is good news for me, today, as I do not want a biopsy. I can wait.
In the mean time, I am doing vision exercises, in hopes that I can get some sort of vision back. I got a book, and listen to it on my phone. (Miracle Eyesight Method, by Meir Schneider) fingers crossed that it's really a miracle!To all my brain mets sisters out there who are going through tx....I am thinking about you all the time, and I am sending out virtual hugs.
Strength to you all!
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Jilly,
That is great news. I live 4 to 6 weeks at a time between MRIs so I understand the relief. No progression is good.
Terry,
I hope your first tx went well today. Hugs.0 -
Thank you all so much..but computer was down today so I don't start til tomo. Can I ask how you sleep on the decadron? And also what about constipation..I have been doing stool softeners and its not working. I know its on these boards but I can't see to find it..lol...I am calling my best friend my seeing eye dog now..lol!!
Gotta laugh!
Terry
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Cthynsh,
I think we have some things in common! My advice to you is to check your insurance policy and get into inpatient rehab ASAP. I hate being in the hospital and my whole family is freaking out but my body is making incredible gains.
How are the rest of my girls? Hows everybody doing w rads? I get to make the decision for wbr vs Srs this week. I'm thinking I'm gonna decline wbr at all costs. Looking for experience and arguments for & against. Worried about cognitive function more than anything else.0 -
I underwent WBR in November and had no cognitive function issues. I would do it again if necessary.
Terry - I took a small dose of decadron (4 mg) every day during treatment and I used Restoril for sleeping, which took care of the problem.
WBR continues to work long after treatment is complete. Mine have continued to shrink and are mostly gone after 6 months, confirmed by MRI.
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Thanks Luv..They have me on 4 mg of decadron 4 times a day but I usually get 3 in..Hope everyone has a beautiful day!
Hugs!
Terry
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Terry - I refused to take that much decadron. I am diabetic and it really affects blood sugar levels so I drew the line at 4 mg twice a day, then tapered off to once a day as quickly as I could.
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Terry, the most I took during radiation tx was 12mg per day. I took an ativan before bed and I slept a good 5 hours doing that. Restoril is a good call too. I've heard it's good.I'm glad you have a friend who is helping you with your vision problems. I too have a "seeing eye dog" well that's what I call him. He is a real dog, but all he does is trip me, so it really doesn't work out that well. lol
Glad we can all find humour within at times like this! We need it, eh?
Lots of love. Good luck today.
Nicole, I only had the SRS, and that's what I chose because of the one small met scenario with my brain. They did ask me if I wanted wbr, but the doc said, if it was him, he'd go for the SRS. I hope answers will come soon for you. Much love.
Jilly xoxo
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Hello ladies, doing WBR, 3rd day, and having a heck of a time wih the face mask. Do any of you have a hard time with it? I take Ativan before it but it seems like all I do is come home and sleep all day and then the nights are hard. How much ativan do you take and how far in advance of the radiation? Just needed to post and try and get rid of these feelings. I appreciate all of your posts.
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It is so good we can laugh at this together..My friend laughs at the seeing eyedog thing..
Jilly. Is your vision messed up from the brain mets?. I have 2 little shihtzus that make me almost fall.
Luv..I am only taking the decadron 3 times a day and will start tapering me off the final week. I heard it really messes with diabetes..You give me so much hope..I have followed you on th boards for awhile.
hotandcold..The mask really doesnt bother me..I just keep my eyes shut the whole time but today was just my 2nd treatment..Hope it gets better for you..
Have a beautiful evening!
Hugs and Prayers!
Terry0 -
Terry - yes, the decadron messes with blood sugar. My PCP gave me a prescription for Actos as my blood sugar got up to 400 for a few days. I stayed on it until I was able to lower the decadron to 2 mg a day. I'll be finished with it completely in a few days. I am glad I give you and others hope...I've had a rather miraculous reaction to Gemzar and I hope it continues.
The mask didn't bother me - it was just a few seconds per treatment. I actually brought it home as a souvenir when I was finished with treatment...perhaps a warped sense of humor...LOL!
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Thanks for the replys. It takes me 10 minutes to lay down and they are a little tired of me I can tell. Just wanted to post that I'm not taking any decadron! Asked about it and Dr. said we'll wait and see. I hadn't had any symptons when they spotted some tumors on my regular pt/ct scan. 2 days later into MRI for brain scan. Dr. said if I noticed any changes I should tell her and then they might consider some decadron.
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Hi all call me Neicy...BC dx: 1/2006, Stage IV triple negative. I have been experiencing alopecia and tender scalp with a pimple-flaky tiny area over the last month. My scal is sore to touch and I have headaches. Where the blessing lies is that I have my yearly appointment tomorrow. I am nervous because I am a nurse and I use the internet a lot. I also consulted the derm specialist here where I work. Scalp mets is the biggest worry. Has anyone experienced this. Right now, I feel like this could be something because of the length of time since treatment and i know my body. something is wrong. please, i need just some insight.
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Sooo wbr for me. Sigh. I'm scared, not gonna lie. I'm so afraid of not being me! The stories are so varied. It's either I'm fine or completely regret having ever done it. The thing is, I SWORE I would never do it. NEVER. And now here we are..and I'm changing my tune. I just wish I had more input. I struggled a bit thru Srs with swelling and seizures and am now in inpatient pt after neurosurgery trying to relearn how to walk. It's not so bad, I'm in no pain, but so
concerned about what's around the corner. Any input? I know I've been hitting you guys up a lot lately..
Hugs & prayers
Nicole0 -
Nicole,
Lots of hugs to you. I am sorry I do not have any advise. Glad your surgery is done. I have only had gamma tx so far and my doctors have told me I need WBR but we keep post phoning the tx. We will decide again after my MRI on JUn 4. But it is in my future. This is a hard decision. I have heard many good stories on this board from ladies who have done WBR. I hope you have minimal side effects and a fast recovery.it is scary but so is everything we do. I try to focus on the positive stories. Is more SRS an option? I wish you all the best. I wish I could do more.0 -
I've read this post for a year now even though I didn't have brain mets show until 2 weeks ago. It's quite possible that I just focus on the stories that have quick endings, but had anybody lived a significant period of time after discovering brain mets?
My brain mets were discovered 2 weeks ago and they are tiny-tiny. My radiation oncologist told me that if there are 3, there are probably 30. I've noticed a change in writing with those women who have had wbr and it scares me to have part of my personality to change.
(Forgive me, my DH's name is Brian and it's been very difficult to spell them correctly
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